Re: [QUAD-L] medical supplies

[Lissette Whitehead]

What is the material and size of the catheters?

Get Outlook for iOS<https://aka.ms/o0ukef>

From: Nichole Rohling 
Sent: Tuesday, May 28, 2024 11:56:02 AM
To: 'Michael Galvin' ; quad-list@eskimo.com 

Subject: RE: [QUAD-L] medical supplies


What brand leg bag and what tubing?



From: Michael Galvin [mailto:whatsu...@gmail.com]
Sent: Tuesday, May 28, 2024 9:33 AM
To: quad-list@eskimo.com
Subject: [QUAD-L] medical supplies





I have a bunch of leg bags, tubing and catheters.  If anyone is interested and 
willing to pay for the shipping, I will send them to you.



PQ

C5/C6 / 54 years

RE: [QUAD-L] medical supplies

[Nichole Rohling]

What brand leg bag and what tubing?

 

From: Michael Galvin [mailto:whatsu...@gmail.com] 
Sent: Tuesday, May 28, 2024 9:33 AM
To: quad-list@eskimo.com
Subject: [QUAD-L] medical supplies

 

 

I have a bunch of leg bags, tubing and catheters.  If anyone is interested and 
willing to pay for the shipping, I will send them to you.

 

PQ

C5/C6 / 54 years 

Re: [QUAD-L] medical supplies

[Eric Olson]

It depends on what brand of leg bags and extension tubes.  Also, what brand
and size are the catheters?

On Tue, May 28, 2024 at 9:32 AM Michael Galvin  wrote:

>
> I have a bunch of leg bags, tubing and catheters.  If anyone is interested
> and willing to pay for the shipping, I will send them to you.
>
> PQ
> C5/C6 / 54 years
>

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Don Price]

Most likely you’ll have to go somewhere to have the custom fitting done. It’s more of a custom fitting to your body than a pressure mapping. The cushion will be made to fit the exact shape and curves of you butt, with the “trouble spot” removed. I’m speaking as a lay person, so this is just my personal experience.I’d recommend calling them directly to find your nearest dealer:Ride Designs does not sell directly to the public, rather through Ride®certified providers. Please call the Ride Customer Service team at 866-781-1633for assistance in finding your closest Ride supplier.Good luck!Don.On Apr 21, 2024, at 1:35 PM, Noel  wrote:When Ride Designs does the pressure mapping, do they come to your home, or do you have to go to their location?On Mon, Apr 15, 2024 at 3:21 PM Don Price <donpric...@yahoo.com> wrote:
Your basic Ride cushion is about the same, or less, than a basic Roho.The custom fit Ride cushions are more expensive as there's a fitting involved, then the custom fabrication. But definitely worth the cost if they prevent you from getting a pressure injury.From the Ride Website:  Ride Designs does not sell directly to the public, rather through Ride® certified providers. Please call the Ride Customer Service team at 866-781-1633 for assistance in finding your closest Ride supplier.A sore on your sack? Holy balls--that's nuts! [sorry, couldn't resist]Don.





On Thursday, April 11, 2024 at 11:34:07 AM MST, Ben Mattlin <benmatt...@gmail.com> wrote:





Thanks, Paul. So it's basically made of foam? Anyway, my problem seems to be on the scrotum, which isn't exactly a bony protuberance.This sounds expensive, too, but I'll definitely think about.  From: Paul Jacobson <pjacob...@san.rr.com> Sent: Thursday, April 11, 2024 11:28 AMTo: 'Ben Mattlin' <benmatt...@gmail.com>; 'Jeffrey Gaede' <jsga...@yahoo.com>; quad-list@eskimo.com; 'Dan G.' <dng47...@gmail.com>; 'Daniel Gove' <quadz...@optonline.net>; wheel...@centurylink.net; 'Edward Tessier' <e...@artecopartners.com>Subject: RE: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...  RIDE SYSTEM:  You get your butt and hips mapped and wherever thereAae bony prominences, the areas where wounds occur, the cushion is cut out so there is no pressure, friction or touching.  These bony prominences,  just float and are free from pressure.  The cushion is individualized to you.  Hope this helps.Paul  From: Ben Mattlin <benmatt...@gmail.com> Sent: Thursday, April 11, 2024 10:44 AMTo: 'Jeffrey Gaede' <jsga...@yahoo.com>; quad-list@eskimo.com; 'Dan G.' <dng47...@gmail.com>; 'Daniel Gove' <quadz...@optonline.net>; wheel...@centurylink.net; 'Edward Tessier' <e...@artecopartners.com>Subject: RE: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...  Can anyone explain why the Ride cushion is different/better? I'm currently in bed because of a scrotum pressure wound, and I've been using a Roho Quadtro for the past several years (after many more years on memory foam cushions). Thanks, everyone, for your wisdom and good advice.-Ben (age 61, quad from spinal muscular atrophy)  From: Jeffrey Gaede <jsga...@yahoo.com> Sent: Wednesday, April 10, 2024 8:44 PMTo: quad-list@eskimo.com; Dan G. <dng47...@gmail.com>; Daniel Gove <quadz...@optonline.net>; wheel...@centurylink.net; Edward Tessier <e...@artecopartners.com>Subject: Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...  Same here. Roho was fine when younger. Now it's Ride.   On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier <e...@artecopartners.com> wrote:     in my younger years as a quad I did fine on rojo  and Jay cushions – – pneumatic and gel respectively.   At 30 years post my body had had enough and I developed a sore that kept me in bed for a year   I tried more than 20 different products on the market   the only cushion that worked dependably for long hours of sitting in with no breakdown were the Ride Cushions.   highly customized and highly durable and absolute miracle workers  in that it enabled me to go back to work and be more active raising my kids  https://www.ridedesigns.com/wheelchair-cushionsFro

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Noel]

When Ride Designs does the pressure mapping, do they come to your home, or
do you have to go to their location?


On Mon, Apr 15, 2024 at 3:21 PM Don Price  wrote:

> Your basic Ride cushion is about the same, or less, than a basic Roho.
> The custom fit Ride cushions are more expensive as there's a fitting
> involved, then the custom fabrication. But definitely worth the cost if
> they prevent you from getting a pressure injury.
>
> From the Ride Website:  Ride Designs does not sell directly to the
> public, rather through Ride® certified providers. Please call the Ride
> Customer Service team at 866-781-1633 for assistance in finding your
> closest Ride supplier.
>
> A sore on your sack? Holy balls--that's nuts! [sorry, couldn't resist]
>
> Don.
>
> On Thursday, April 11, 2024 at 11:34:07 AM MST, Ben Mattlin <
> benmatt...@gmail.com> wrote:
>
>
> Thanks, Paul. So it's basically made of foam? Anyway, my problem seems to
> be on the scrotum, which isn't exactly a bony protuberance.
>
> This sounds expensive, too, but I'll definitely think about.
>
>
>
> *From:* Paul Jacobson 
> *Sent:* Thursday, April 11, 2024 11:28 AM
> *To:* 'Ben Mattlin' ; 'Jeffrey Gaede' <
> jsga...@yahoo.com>; quad-list@eskimo.com; 'Dan G.' ;
> 'Daniel Gove' ; wheel...@centurylink.net; 'Edward
> Tessier' 
> *Subject:* RE: [QUAD-L]
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY.
> ..
>
>
>
> RIDE SYSTEM:  You get your butt and hips mapped and wherever there
>
> Aae bony prominences, the areas where wounds occur, the cushion is cut out
> so
>
> there is no pressure, friction or touching.  These bony prominences,  just
> float
>
> and are free from pressure.
>
>
>
> The cushion is individualized to you.  Hope this helps.
>
> Paul
>
>
>
> *From:* Ben Mattlin 
> *Sent:* Thursday, April 11, 2024 10:44 AM
> *To:* 'Jeffrey Gaede' ; quad-list@eskimo.com; 'Dan G.'
> ; 'Daniel Gove' ;
> wheel...@centurylink.net; 'Edward Tessier' 
> *Subject:* RE: [QUAD-L]
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY
> ...
>
>
>
> Can anyone explain why the Ride cushion is different/better? I'm currently
> in bed because of a scrotum pressure wound, and I've been using a Roho
> Quadtro for the past several years (after many more years on memory foam
> cushions). Thanks, everyone, for your wisdom and good advice.
>
> -Ben (age 61, quad from spinal muscular atrophy)
>
>
>
> *From:* Jeffrey Gaede 
> *Sent:* Wednesday, April 10, 2024 8:44 PM
> *To:* quad-list@eskimo.com; Dan G. ; Daniel Gove <
> quadz...@optonline.net>; wheel...@centurylink.net; Edward Tessier <
> e...@artecopartners.com>
> *Subject:* Re: [QUAD-L]
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY
> ...
>
>
>
> Same here. Roho was fine when younger. Now it's Ride.
>
>
>
> On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier <
> e...@artecopartners.com> wrote:
>
>
>
>
>
> in my younger years as a quad I did fine on rojo  and Jay cushions – –
> pneumatic and gel respectively.
>
>
>
>  At 30 years post my body had had enough and I developed a sore that kept
> me in bed for a year
>
>
>
>  I tried more than 20 different products on the market
>
>
>
>  the only cushion that worked dependably for long hours of sitting in with
> no breakdown were the Ride Cushions.   highly customized and highly durable
> and absolute miracle workers  in that it enabled me to go back to work and
> be more active raising my kids
>
>
>
> https://www.ridedesigns.com/wheelchair-cushions
> --
>
> *From:* Jeffrey Gaede 
> *Sent:* Tuesday, April 9, 2024 10:33 AM
> *To:* quad-list@eskimo.com ; Dan G. <
> dng47...@gmail.com>; Daniel Gove ;
> wheel...@centurylink.net 
> *Subject:* Re: [QUAD-L]
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY
> ...
>
>
>
> True
>
>
>
> On Tuesday, April 9

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Don Price]

 Your basic Ride cushion is about the same, or less, than a basic Roho.The 
custom fit Ride cushions are more expensive as there's a fitting involved, then 
the custom fabrication. But definitely worth the cost if they prevent you from 
getting a pressure injury.
>From the Ride Website:  Ride Designs does not sell directly to the public, 
>rather through Ride® certified providers. Please call the Ride Customer 
>Service team at 866-781-1633 for assistance in finding your closest Ride 
>supplier.
A sore on your sack? Holy balls--that's nuts! [sorry, couldn't resist]
Don.
On Thursday, April 11, 2024 at 11:34:07 AM MST, Ben Mattlin 
 wrote:  
 
 
Thanks, Paul. So it's basically made of foam? Anyway, my problem seems to be on 
the scrotum, which isn't exactly a bony protuberance.

This sounds expensive, too, but I'll definitely think about.

  

From: Paul Jacobson  
Sent: Thursday, April 11, 2024 11:28 AM
To: 'Ben Mattlin' ; 'Jeffrey Gaede' ; 
quad-list@eskimo.com; 'Dan G.' ; 'Daniel Gove' 
; wheel...@centurylink.net; 'Edward Tessier' 

Subject: RE: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

  

RIDE SYSTEM:  You get your butt and hips mapped and wherever there

Aae bony prominences, the areas where wounds occur, the cushion is cut out so 

there is no pressure, friction or touching.  These bony prominences,  just 
float 

and are free from pressure.

  

The cushion is individualized to you.  Hope this helps.

Paul

  

From: Ben Mattlin  
Sent: Thursday, April 11, 2024 10:44 AM
To: 'Jeffrey Gaede' ; quad-list@eskimo.com; 'Dan G.' 
; 'Daniel Gove' ; 
wheel...@centurylink.net; 'Edward Tessier' 
Subject: RE: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

  

Can anyone explain why the Ride cushion is different/better? I'm currently in 
bed because of a scrotum pressure wound, and I've been using a Roho Quadtro for 
the past several years (after many more years on memory foam cushions). Thanks, 
everyone, for your wisdom and good advice.

-Ben (age 61, quad from spinal muscular atrophy)

  

From: Jeffrey Gaede  
Sent: Wednesday, April 10, 2024 8:44 PM
To: quad-list@eskimo.com; Dan G. ; Daniel Gove 
; wheel...@centurylink.net; Edward Tessier 

Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

  

Same here. Roho was fine when younger. Now it's Ride. 

  

On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier 
 wrote: 

  

  

in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.

  

 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year

  

 I tried more than 20 different products on the market

  

 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids

  

https://www.ridedesigns.com/wheelchair-cushions

From: Jeffrey Gaede 
Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com ; Dan G. ; 
Daniel Gove ; wheel...@centurylink.net 

Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...
 

 

True

  

On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
 wrote: 

  

  

i bought one like this and it made me so unbalance that i could not sit on it. 

i am thinking of designing and making my own cushion with cutout for groin area.

get really thick memory foam or other material and cut out a hole.

or use donut cushion with other material around it.

  

there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.

there is no reason that so many wheelchair cushion companies cannot make a 
cushion that pressure maps good and prevents pressure sores. no excuses.

derrick 

  

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:

One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pres

RE: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Ben Mattlin]

Probably right. Many thanks.

 

From: Eric Olson  
Sent: Thursday, April 11, 2024 11:48 AM
To: Ben Mattlin 
Cc: Jeffrey Gaede ; quad-list@eskimo.com; Dan G. 
; Daniel Gove ; 
wheel...@centurylink.net; Edward Tessier 
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Ben,

 

Scrotum pressure sore?  I think you might be sitting on your scrotum when you 
get in your chair.  After I get in my chair, I recline my chair and have my 
caregivers reach in my pants and pull my sack out from under me.  I have them 
cup my package as they recline my chair up to make sure I don't end up sitting 
on my sack.  Why do I suspect that is what is causing you sore?  The exact same 
thing happened to me a few years ago 

 

On Thu, Apr 11, 2024 at 12:43 PM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

Can anyone explain why the Ride cushion is different/better? I'm currently in 
bed because of a scrotum pressure wound, and I've been using a Roho Quadtro for 
the past several years (after many more years on memory foam cushions). Thanks, 
everyone, for your wisdom and good advice.

-Ben (age 61, quad from spinal muscular atrophy)

 

From: Jeffrey Gaede mailto:jsga...@yahoo.com> > 
Sent: Wednesday, April 10, 2024 8:44 PM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com> ; Dan G. 
mailto:dng47...@gmail.com> >; Daniel Gove 
mailto:quadz...@optonline.net> >; 
wheel...@centurylink.net <mailto:wheel...@centurylink.net> ; Edward Tessier 
mailto:e...@artecopartners.com> >
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Same here. Roho was fine when younger. Now it's Ride. 

 

On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier 
mailto:e...@artecopartners.com> > wrote: 

 

 

in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.

 

 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year

 

 I tried more than 20 different products on the market

 

 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids

 

https://www.ridedesigns.com/wheelchair-cushions


  _  


From: Jeffrey Gaede mailto:jsga...@yahoo.com> >
Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com>  mailto:quad-list@eskimo.com> >; Dan G. mailto:dng47...@gmail.com> >; Daniel Gove mailto:quadz...@optonline.net> >; wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> >
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...
 

 

True

 

On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> > wrote: 

 

 

i bought one like this and it made me so unbalance that i could not sit on it. 

i am thinking of designing and making my own cushion with cutout for groin area.

get really thick memory foam or other material and cut out a hole.

or use donut cushion with other material around it.

 

there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.

there is no reason that so many wheelchair cushion companies cannot make a 
cushion that pressure maps good and prevents pressure sores. no excuses.

derrick 

 

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:

One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.

 Jeff

 

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove  
<mailto:quadz...@optonline.net>  wrote: 

 

 

https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFC

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Eric Olson]

Ben,

Scrotum pressure sore?  I think you might be sitting on your scrotum when
you get in your chair.  After I get in my chair, I recline my chair and
have my caregivers reach in my pants and pull my sack out from under me.  I
have them cup my package as they recline my chair up to make sure I don't
end up sitting on my sack.  Why do I suspect that is what is causing you
sore?  The exact same thing happened to me a few years ago

On Thu, Apr 11, 2024 at 12:43 PM Ben Mattlin  wrote:

> Can anyone explain why the Ride cushion is different/better? I'm currently
> in bed because of a scrotum pressure wound, and I've been using a Roho
> Quadtro for the past several years (after many more years on memory foam
> cushions). Thanks, everyone, for your wisdom and good advice.
>
> -Ben (age 61, quad from spinal muscular atrophy)
>
>
>
> *From:* Jeffrey Gaede 
> *Sent:* Wednesday, April 10, 2024 8:44 PM
> *To:* quad-list@eskimo.com; Dan G. ; Daniel Gove <
> quadz...@optonline.net>; wheel...@centurylink.net; Edward Tessier <
> e...@artecopartners.com>
> *Subject:* Re: [QUAD-L]
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY.
> ..
>
>
>
> Same here. Roho was fine when younger. Now it's Ride.
>
>
>
> On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier <
> e...@artecopartners.com> wrote:
>
>
>
>
>
> in my younger years as a quad I did fine on rojo  and Jay cushions – –
> pneumatic and gel respectively.
>
>
>
>  At 30 years post my body had had enough and I developed a sore that kept
> me in bed for a year
>
>
>
>  I tried more than 20 different products on the market
>
>
>
>  the only cushion that worked dependably for long hours of sitting in with
> no breakdown were the Ride Cushions.   highly customized and highly durable
> and absolute miracle workers  in that it enabled me to go back to work and
> be more active raising my kids
>
>
>
> https://www.ridedesigns.com/wheelchair-cushions
> --
>
> *From:* Jeffrey Gaede 
> *Sent:* Tuesday, April 9, 2024 10:33 AM
> *To:* quad-list@eskimo.com ; Dan G. <
> dng47...@gmail.com>; Daniel Gove ;
> wheel...@centurylink.net 
> *Subject:* Re: [QUAD-L]
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY
> ...
>
>
>
> True
>
>
>
> On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net <
> wheel...@centurylink.net> wrote:
>
>
>
>
>
> i bought one like this and it made me so unbalance that i could not sit on
> it.
>
> i am thinking of designing and making my own cushion with cutout for groin
> area.
>
> get really thick memory foam or other material and cut out a hole.
>
> or use donut cushion with other material around it.
>
>
>
> there is a cushion made that does have hole in middle but i think it is
> custom made and/or you must have company measure & build it just for you.
>
> there is no reason that so many wheelchair cushion companies cannot make a
> cushion that pressure maps good and prevents pressure sores. no excuses.
>
> derrick
>
>
>
> On 4/7/24 5:08 PM, Jeffrey Gaede wrote:
>
> One thing I was warned about this type of objects a long time ago was
> that, while you are relieving pressure to the area in the middle, the
> outside rings can be cutting off at least some blood flow to where you are
> relieving pressure. Not saying that it shouldn't be used. Just say be
> careful.
>
>  Jeff
>
>
>
> On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove
>   wrote:
>
>
>
>
>
>
> https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7
>
>
>
>
>
> Dan G.
> quadz...@optonline.net
>
>
>
>
>

RE: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Ben Mattlin]

Thanks, Paul. So it's basically made of foam? Anyway, my problem seems to be on 
the scrotum, which isn't exactly a bony protuberance.

This sounds expensive, too, but I'll definitely think about.

 

From: Paul Jacobson  
Sent: Thursday, April 11, 2024 11:28 AM
To: 'Ben Mattlin' ; 'Jeffrey Gaede' ; 
quad-list@eskimo.com; 'Dan G.' ; 'Daniel Gove' 
; wheel...@centurylink.net; 'Edward Tessier' 

Subject: RE: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

RIDE SYSTEM:  You get your butt and hips mapped and wherever there

Aae bony prominences, the areas where wounds occur, the cushion is cut out so 

there is no pressure, friction or touching.  These bony prominences,  just 
float 

and are free from pressure.

 

The cushion is individualized to you.  Hope this helps.

Paul

 

From: Ben Mattlin mailto:benmatt...@gmail.com> > 
Sent: Thursday, April 11, 2024 10:44 AM
To: 'Jeffrey Gaede' mailto:jsga...@yahoo.com> >; 
quad-list@eskimo.com <mailto:quad-list@eskimo.com> ; 'Dan G.' 
mailto:dng47...@gmail.com> >; 'Daniel Gove' 
mailto:quadz...@optonline.net> >; 
wheel...@centurylink.net <mailto:wheel...@centurylink.net> ; 'Edward Tessier' 
mailto:e...@artecopartners.com> >
Subject: RE: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Can anyone explain why the Ride cushion is different/better? I'm currently in 
bed because of a scrotum pressure wound, and I've been using a Roho Quadtro for 
the past several years (after many more years on memory foam cushions). Thanks, 
everyone, for your wisdom and good advice.

-Ben (age 61, quad from spinal muscular atrophy)

 

From: Jeffrey Gaede mailto:jsga...@yahoo.com> > 
Sent: Wednesday, April 10, 2024 8:44 PM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com> ; Dan G. 
mailto:dng47...@gmail.com> >; Daniel Gove 
mailto:quadz...@optonline.net> >; 
wheel...@centurylink.net <mailto:wheel...@centurylink.net> ; Edward Tessier 
mailto:e...@artecopartners.com> >
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Same here. Roho was fine when younger. Now it's Ride. 

 

On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier 
mailto:e...@artecopartners.com> > wrote: 

 

 

in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.

 

 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year

 

 I tried more than 20 different products on the market

 

 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids

 

https://www.ridedesigns.com/wheelchair-cushions

  _  

From: Jeffrey Gaede mailto:jsga...@yahoo.com> >
Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com>  mailto:quad-list@eskimo.com> >; Dan G. mailto:dng47...@gmail.com> >; Daniel Gove mailto:quadz...@optonline.net> >; wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> >
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...
 

 

True

 

On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> > wrote: 

 

 

i bought one like this and it made me so unbalance that i could not sit on it. 

i am thinking of designing and making my own cushion with cutout for groin area.

get really thick memory foam or other material and cut out a hole.

or use donut cushion with other material around it.

 

there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.

there is no reason that so many wheelchair cushion companies cannot make a 
cushion that pressure maps good and prevents pressure sores. no excuses.

derrick 

 

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:

One thing I was warned about this type of obje

RE: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Paul Jacobson]

RIDE SYSTEM:  You get your butt and hips mapped and wherever there

Aae bony prominences, the areas where wounds occur, the cushion is cut out so 

there is no pressure, friction or touching.  These bony prominences,  just 
float 

and are free from pressure.

 

The cushion is individualized to you.  Hope this helps.

Paul

 

From: Ben Mattlin  
Sent: Thursday, April 11, 2024 10:44 AM
To: 'Jeffrey Gaede' ; quad-list@eskimo.com; 'Dan G.' 
; 'Daniel Gove' ; 
wheel...@centurylink.net; 'Edward Tessier' 
Subject: RE: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Can anyone explain why the Ride cushion is different/better? I'm currently in 
bed because of a scrotum pressure wound, and I've been using a Roho Quadtro for 
the past several years (after many more years on memory foam cushions). Thanks, 
everyone, for your wisdom and good advice.

-Ben (age 61, quad from spinal muscular atrophy)

 

From: Jeffrey Gaede mailto:jsga...@yahoo.com> > 
Sent: Wednesday, April 10, 2024 8:44 PM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com> ; Dan G. 
mailto:dng47...@gmail.com> >; Daniel Gove 
mailto:quadz...@optonline.net> >; 
wheel...@centurylink.net <mailto:wheel...@centurylink.net> ; Edward Tessier 
mailto:e...@artecopartners.com> >
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Same here. Roho was fine when younger. Now it's Ride. 

 

On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier 
mailto:e...@artecopartners.com> > wrote: 

 

 

in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.

 

 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year

 

 I tried more than 20 different products on the market

 

 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids

 

https://www.ridedesigns.com/wheelchair-cushions

  _  

From: Jeffrey Gaede mailto:jsga...@yahoo.com> >
Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com>  mailto:quad-list@eskimo.com> >; Dan G. mailto:dng47...@gmail.com> >; Daniel Gove mailto:quadz...@optonline.net> >; wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...
 

 

True

 

On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> > wrote: 

 

 

i bought one like this and it made me so unbalance that i could not sit on it. 

i am thinking of designing and making my own cushion with cutout for groin area.

get really thick memory foam or other material and cut out a hole.

or use donut cushion with other material around it.

 

there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.

there is no reason that so many wheelchair cushion companies cannot make a 
cushion that pressure maps good and prevents pressure sores. no excuses.

derrick 

 

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:

One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.

 Jeff

 

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove  
<mailto:quadz...@optonline.net>  wrote: 

 

 

https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7

 

 

Dan G.
quadz...@optonline.net <mailto:quadz...@optonline.net> 

 

 

RE: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Ben Mattlin]

Can anyone explain why the Ride cushion is different/better? I'm currently in 
bed because of a scrotum pressure wound, and I've been using a Roho Quadtro for 
the past several years (after many more years on memory foam cushions). Thanks, 
everyone, for your wisdom and good advice.

-Ben (age 61, quad from spinal muscular atrophy)

 

From: Jeffrey Gaede  
Sent: Wednesday, April 10, 2024 8:44 PM
To: quad-list@eskimo.com; Dan G. ; Daniel Gove 
; wheel...@centurylink.net; Edward Tessier 

Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

 

Same here. Roho was fine when younger. Now it's Ride. 

 

On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier 
mailto:e...@artecopartners.com> > wrote: 

 

 

in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.

 

 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year

 

 I tried more than 20 different products on the market

 

 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids

 

https://www.ridedesigns.com/wheelchair-cushions

  _  

From: Jeffrey Gaede mailto:jsga...@yahoo.com> >
Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com <mailto:quad-list@eskimo.com>  mailto:quad-list@eskimo.com> >; Dan G. mailto:dng47...@gmail.com> >; Daniel Gove mailto:quadz...@optonline.net> >; wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> >
Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...
 

 

True

 

On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
<mailto:wheel...@centurylink.net>  mailto:wheel...@centurylink.net> > wrote: 

 

 

i bought one like this and it made me so unbalance that i could not sit on it. 

i am thinking of designing and making my own cushion with cutout for groin area.

get really thick memory foam or other material and cut out a hole.

or use donut cushion with other material around it.

 

there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.

there is no reason that so many wheelchair cushion companies cannot make a 
cushion that pressure maps good and prevents pressure sores. no excuses.

derrick 

 

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:

One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.

 Jeff

 

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove  
<mailto:quadz...@optonline.net>  wrote: 

 

 

https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7

 

 

Dan G.
quadz...@optonline.net <mailto:quadz...@optonline.net> 

 

 

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Jeffrey Gaede]

 Same here. Roho was fine when younger. Now it's Ride. 
On Wednesday, April 10, 2024 at 01:49:33 PM PDT, Edward Tessier 
 wrote:  
 
 in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.
 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year
 I tried more than 20 different products on the market
 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids
https://www.ridedesigns.com/wheelchair-cushionsFrom: Jeffrey Gaede 

Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com ; Dan G. ; 
Daniel Gove ; wheel...@centurylink.net 

Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...
 True
On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
 wrote:

i bought one like this and it made me so unbalance that i could not sit on it.
i am thinking of designing and making my own cushion with cutout for groin 
area.get really thick memory foam or other material and cut out a hole.or use 
donut cushion with other material around it.
there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.there is no 
reason that so many wheelchair cushion companies cannot make a cushion that 
pressure maps good and prevents pressure sores. no excuses.derrick 

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:


One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.     Jeff

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove 
 wrote: 

https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7

Dan G.
quadz...@optonline.net



  

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Edward Tessier]

in my younger years as a quad I did fine on rojo  and Jay cushions – – 
pneumatic and gel respectively.

 At 30 years post my body had had enough and I developed a sore that kept me in 
bed for a year

 I tried more than 20 different products on the market

 the only cushion that worked dependably for long hours of sitting in with no 
breakdown were the Ride Cushions.   highly customized and highly durable and 
absolute miracle workers  in that it enabled me to go back to work and be more 
active raising my kids

https://www.ridedesigns.com/wheelchair-cushions

From: Jeffrey Gaede 
Sent: Tuesday, April 9, 2024 10:33 AM
To: quad-list@eskimo.com ; Dan G. ; 
Daniel Gove ; wheel...@centurylink.net 

Subject: Re: [QUAD-L] 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY...

True

On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
 wrote:


i bought one like this and it made me so unbalance that i could not sit on it.
i am thinking of designing and making my own cushion with cutout for groin area.
get really thick memory foam or other material and cut out a hole.
or use donut cushion with other material around it.

there is a cushion made that does have hole in middle but i think it is custom 
made and/or you must have company measure & build it just for you.
there is no reason that so many wheelchair cushion companies cannot make a 
cushion that pressure maps good and prevents pressure sores. no excuses.
derrick

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:
One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.
 Jeff

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove 
<mailto:quadz...@optonline.net> wrote:


https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7


Dan G.
quadz...@optonline.net<mailto:quadz...@optonline.net>

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Jeffrey Gaede]

 True
On Tuesday, April 9, 2024 at 10:26:34 AM PDT, wheel...@centurylink.net 
 wrote:  
 
  i bought one like this and it made me so unbalance that i could not sit on 
it. 
  i am thinking of designing and making my own cushion with cutout for groin 
area. get really thick memory foam or other material and cut out a hole. or use 
donut cushion with other material around it. 
  there is a cushion made that does have hole in middle but i think it is 
custom made and/or you must have company measure & build it just for you. there 
is no reason that so many wheelchair cushion companies cannot make a cushion 
that pressure maps good and prevents pressure sores. no excuses. derrick 
  
  On 4/7/24 5:08 PM, Jeffrey Gaede wrote:
  
 
 One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.      Jeff
  
  On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove 
 wrote:  
  
 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7
 
   
  Dan G.
 quadz...@optonline.net  
   

 
   

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[wheelsdw]

i bought one like this and it made me so unbalance that i could not sit 
on it.
i am thinking of designing and making my own cushion with cutout for 
groin area.

get really thick memory foam or other material and cut out a hole.
or use donut cushion with other material around it.

there is a cushion made that does have hole in middle but i think it is 
custom made and/or you must have company measure & build it just for you.
there is no reason that so many wheelchair cushion companies cannot make 
a cushion that pressure maps good and prevents pressure sores. no excuses.

derrick

On 4/7/24 5:08 PM, Jeffrey Gaede wrote:
One thing I was warned about this type of objects a long time ago was 
that, while you are relieving pressure to the area in the middle, the 
outside rings can be cutting off at least some blood flow to where you 
are relieving pressure. Not saying that it shouldn't be used. Just say 
be careful.

     Jeff

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove 
 wrote:



https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7 




Dan G.
quadz...@optonline.net

Re: [QUAD-L] https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7Vp

[Jeffrey Gaede]

 One thing I was warned about this type of objects a long time ago was that, 
while you are relieving pressure to the area in the middle, the outside rings 
can be cutting off at least some blood flow to where you are relieving 
pressure. Not saying that it shouldn't be used. Just say be careful.     Jeff

On Sunday, April 7, 2024 at 01:58:12 PM PDT, Daniel Gove 
 wrote:  
 
 
https://www.amazon.com/Orthopedic-Cushion-Haemorrhoids-Suitable-Wheelchair/dp/B07WWN6933/ref=sr_1_7?dib=eyJ2IjoiMSJ9.1GIYkUexyNJ_5G8FHaBiHpiOKc70Us6r4iV3NYFnV8iOoImDWy0uufcBcD28PWIFy8s7VpJuynUbLzQT0pK9b_ylEuea7JwedZpPM4BSXKifeaAtE-d86HvuMY3s3MC9EdpBsUyQrNykJ71W3Bnd-vyfDMwh1gjQfhEhU9isZbe5wVmoFCw_F8-o1lwL5wfpqhN0a4QkDq6z9D-wuFGfiZ6mdn3R94UBx9-BCirGURFIW-0XLNP9UjpsMM7k1qUhpIXcSxZaZPAKnIG8VqjcvsWxYMEMQZeFvO-HDYNEvjg.1YOuLscoXvK2DMW93r338UpPsO8eikCB8TwsnJC1Hes_tag=se=foam%2BDoughnut%2Bcushion=1712522866=hpc=1-7

Dan G.
quadz...@optonline.net
  

Re: [QUAD-L] Question about lockdown systems.

[SHIRLEY BELL]

I have a manual chair with ez lock

> On 02/19/2024 5:53 PM EST wheelch...@aol.com  wrote:
>  
>  
>  
> Greetings,
> I've never seen a manual wheelchair, using a single post on an EZ Lock 
> System, for driving or riding.   I have seen double wheel securement for 
> riding wheelchairs.  The design of an EZ lock system was designed for drivers 
> and riders using powered chairs.  I would consider going directly to EZ Lock 
> Securement and getting an answer directly from them rather than a dealer.
> Best Wishes.
>  
>  
> On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
>  wrote:
>  
>  
> Hi Shelly, are you in the new England area? 
> 
> > On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:
> >  
> >  
> > hi to all ! Past two years been having health issues/skin breakdown, 
> > rotator cuff surgery, recovery, etc. so I have been absent from this group! 
> > I hope everyone is well! 
> >  
> > Currently, I’m driving my motorized chair using the easy lock system. 
> >  
> > I want to be able to use my manual chair and was advised that I would need 
> > the new Q straint lock down system ( state agreed to install and pay for 
> > the pin for my manual chair. ) the reason being because the easy lock does 
> > not make a pin for my manual chair.
> >  
> > One last thought, the salesman/company who recommended the new lock down 
> > system at First told me it be no problem for me to use my current motorized 
> > chair with the new system( qstraint) 
> >  
> > Then weeks later flipped on me and said because of liability the only chair 
> > I could drive from would be my manual chair, and could no longer  use the 
> > motorized chair……….
> >  
> > ( many months ago also he told me this is just between you and I, but we 
> > looked at the pins and there’s no difference between the pens except colors 
> > and the only trouble I may run into is if I had an accident and tried to 
> > come back on the company who made the pin because I had did not have the 
> > pin the manufacturer requires us to use.
> >  
> > It’s a cumbersome process to navigate so I would appreciate any one willing 
> > to share their experience and would appreciate some assistance!
> >  
> > Thanks ahead of time !!
> >  
> > Shelly Kerchner
> >  
> > 
> > 
> > Sent from Yahoo Mail for iPad 
> > https://mail.onelink.me/107872968?pid=nativeplacement=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_
> > 
> 

Re: [QUAD-L] Question about lockdown systems.

[Don Price]

 Hi everyone!
Invacare is in business again and has released a rear-wheel drive Storm model. 
I have one and so far it has worked well for me (I've been using it about a 
year now.)It's probably very different from the old Storm model, but if you're 
an Invacare fan it's worth looking into.
Mine has been equipped with an EZ-Lock system and it is working just fine. I 
rarely have clearance issues going over speedbump or door thresholds.
Best wishes,Don.Invacare AVIVA STORM RX Power Wheelchair - Invacare


| 
| 
|  | 
Invacare AVIVA STORM RX Power Wheelchair - Invacare


 |

 |

 |




On Tuesday, February 20, 2024 at 01:36:15 PM MST, wheelch...@aol.com 
 wrote:  
 
  Invacare is still in business Worldwide and continues to make some excellent 
electric wheelchairs.Second, Dealers should not advise you of which brand and 
model is best for you.  They have an agenda to sell YOU something, to make a 
profit.  Same as a car dealer, trying to telling YOU to buy a Ford at a Chevy 
Dealership.Before you purchase anything, you should be evaluated by a licensed 
and certified Occupational Therapist.  An Occupational Therapy will properly 
measure you and help determine YOUR mobility and physical needs to achieve 
mobility.  They are trained to determine, along with your primary doctor and 
YOU the best, for your indoor and outdoor needs.  Will your chair be used 
indoor mostly or outdoors?   Do you need a lift to reach higher places?  Can 
you operate a chair by yourself or do you need assistance.  Will you be driving 
in your chair or just riding.  Will you need to recline for pressure relief?  
Salespeople are not certified to make those decision for YOU.What medical 
mobility special needs will you need.  Lastly, if you are going to drive, will 
YOUR chair be able to be upgraded?Yes, you are correct, InvaCare quit making 
the Storm Series.  It was a great rear wheel drive unit.  Unless it is 
necessary, stay away from those 6 wheel, center load electric chair.  Same 
applies to the Front Wheel Drive chairs, unless specified by a licensed and 
certified Occupational Therapist.Best WishesOn Tuesday, February 20, 2024 
at 01:11:25 PM CST,  wrote:  
 
  I am going through process of getting new electric wheelchair and trying to 
get a model that has an ezlock for it. I have invacare storm series but 
invacare went bankrupt, and dealer wants me to switch to Quantum R-TRAK rear 
wheel drive.Does anybody with ezlock have one for quantum chair? 
  I heard that ezlock is making one for R-TRAK  but I do not see it on their 
list of wheelchairs. 
  Here is list from Ezlock.
  
https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf
 
  Shelly, you can check out their list of wheelchairs on list at the link above.
  
  Derrick W in cold ass PA.
  
  On 2/19/24 5:53 PM, wheelch...@aol.com wrote:
  
 
 Greetings, I've never seen a manual wheelchair, using a single post on an EZ 
Lock System, for driving or riding.   I have seen double wheel securement for 
riding wheelchairs.  The design of an EZ lock system was designed for drivers 
and riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer. Best 
Wishes. 
  
  On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote:
  
  Hi Shelly, are you in the new England area?   
  On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:  
        
hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 
 
 
 
Currently, I’m driving my motorized chair using the easy lock system. 
 
 
 
I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.
 
 
 
One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 
 
 
 
Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….
 
 
 
( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.
 
 
 
It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!
 
 
 
Thanks ahead of time !!
 
 
 
Shelly Kerchner
 
 
 
 
  Sent from Yahoo Mail for iPad  
  

 
 

Re: [QUAD-L] Question about lockdown systems.

[Edward Tessier]

I've been using permobile wheelchairs and they have been very dependable, and 
work well with my EZ lock systems in my vans

ed

From: Shelly Kerchner 
Sent: Tuesday, February 20, 2024 3:01 PM
To: wheel...@centurylink.net ; quad-list@eskimo.com 
; Nichole Rohling 
Subject: Re: [QUAD-L] Question about lockdown systems.

Thank you Nicki & EVERYONE ! All input is very much appreciated!

Shelly
c5-c6-c7

On Tuesday, February 20, 2024 at 05:52:11 PM EST, Nichole Rohling 
 wrote:



I’ve had 3 Invacare chairs over over 25 years….I refuse to change to any other 
brand.

https://pro.invacare.com/Mobility/Powered-Wheelchairs/Rear-Wheel-Drive/c/Rear-Wheel-Drive



Nicki

C5/6



From: wheel...@centurylink.net [mailto:wheel...@centurylink.net]
Sent: Tuesday, February 20, 2024 1:11 PM
To: wheelch...@aol.com; Shelly Kerchner; Quad-list; SHIRLEY BELL
Subject: Re: [QUAD-L] Question about lockdown systems.



I am going through process of getting new electric wheelchair and trying to get 
a model that has an ezlock for it.

I have invacare storm series but invacare went bankrupt, and dealer wants me to 
switch to Quantum R-TRAK rear wheel drive.Does anybody with ezlock have one for 
quantum chair?



I heard that ezlock is making one for R-TRAK  but I do not see it on their list 
of wheelchairs.

Here is list from Ezlock.

https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf



Shelly, you can check out their list of wheelchairs on list at the link above.



Derrick W in cold ass PA.



On 2/19/24 5:53 PM, wheelch...@aol.com<mailto:wheelch...@aol.com> wrote:

Greetings,

I've never seen a manual wheelchair, using a single post on an EZ Lock System, 
for driving or riding.   I have seen double wheel securement for riding 
wheelchairs.  The design of an EZ lock system was designed for drivers and 
riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer.

Best Wishes.





On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
<mailto:sbell...@cox.net> wrote:





Hi Shelly, are you in the new England area?

On 02/19/2024 2:40 PM EST Shelly Kerchner 
<mailto:shelly.kerch...@yahoo.com> wrote:





hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well!



Currently, I’m driving my motorized chair using the easy lock system.



I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.



One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint)



Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….



( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.



It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!



Thanks ahead of time !!



Shelly Kerchner





Sent from Yahoo Mail for 
iPad<https://mail.onelink.me/107872968?pid=nativeplacement=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_>

Re: [QUAD-L] Question about lockdown systems.

[wheelsdw]

wheelchair reminded me the need to "understand" why dealers(salesman) 
recommend certain chairs.
I have had Invacare all my life too. He brought the new Aviva and R-Trak 
for me to look at.  I liked them both but I could not test drive them. 
He kept saying that Invacare not reliable and various issues.


Does anybody have either of these chairs and use Ezlock?

Invacare® AVIVA® STORM RX

Quantum R-Trak

Thanks,
Derrick W

On 2/20/24 6:01 PM, Shelly Kerchner wrote:

Thank you Nicki & EVERYONE ! All input is very much appreciated!

Shelly
c5-c6-c7

On Tuesday, February 20, 2024 at 05:52:11 PM EST, Nichole Rohling 
 wrote:



I’ve had 3 Invacare chairs over over 25 years….I refuse to change to 
any other brand.


https://pro.invacare.com/Mobility/Powered-Wheelchairs/Rear-Wheel-Drive/c/Rear-Wheel-Drive

Nicki

C5/6

*From:*wheel...@centurylink.net [mailto:wheel...@centurylink.net]
*Sent:* Tuesday, February 20, 2024 1:11 PM
*To:* wheelch...@aol.com; Shelly Kerchner; Quad-list; SHIRLEY BELL
*Subject:* Re: [QUAD-L] Question about lockdown systems.

I am going through process of getting new electric wheelchair and 
trying to get a model that has an ezlock for it.


I have invacare storm series but invacare went bankrupt, and dealer 
wants me to switch to Quantum R-TRAK rear wheel drive.Does anybody 
with ezlock have one for quantum chair?


I heard that ezlock is making one for R-TRAK  but I do not see it on 
their list of wheelchairs.


Here is list from Ezlock.

https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf

Shelly, you can check out their list of wheelchairs on list at the 
link above.


Derrick W in cold ass PA.

On 2/19/24 5:53 PM, wheelch...@aol.com wrote:

Greetings,

I've never seen a manual wheelchair, using a single post on an EZ
Lock System, for driving or riding.   I have seen double wheel
securement for riding wheelchairs. The design of an EZ lock system
was designed for drivers and riders using powered chairs.  I would
consider going directly to EZ Lock Securement and getting an
answer directly from them rather than a dealer.

Best Wishes.

On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL
 <mailto:sbell...@cox.net> wrote:

Hi Shelly, are you in the new England area?

On 02/19/2024 2:40 PM EST Shelly Kerchner
 <mailto:shelly.kerch...@yahoo.com>
wrote:

hi to all ! Past two years been having health issues/skin
breakdown, rotator cuff surgery, recovery, etc. so I have been
absent from this group! I hope everyone is well!

Currently, I’m driving my motorized chair using the easy lock
system.

I want to be able to use my manual chair and was advised that
I would need the new Q straint lock down system ( state agreed
to install and pay for the pin for my manual chair. ) the
reason being because the easy lock does not make a pin for my
manual chair.

One last thought, the salesman/company who recommended the new
lock down system at First told me it be no problem for me to
use my current motorized chair with the new system( qstraint)

Then weeks later flipped on me and said because of liability
the only chair I could drive from would be my manual chair,
and could no longer  use the motorized chair……….

( many months ago also he told me this is just between you and
I, but we looked at the pins and there’s no difference between
the pens except colors and the only trouble I may run into is
if I had an accident and tried to come back on the company who
made the pin because I had did not have the pin the
manufacturer requires us to use.

It’s a cumbersome process to navigate so I would appreciate
any one willing to share their experience and would appreciate
some assistance!

Thanks ahead of time !!

Shelly Kerchner

Sent from Yahoo Mail for iPad

<https://mail.onelink.me/107872968?pid=nativeplacement=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_>

Re: [QUAD-L] Question about lockdown systems.

[Shelly Kerchner]

 Thank you Nicki & EVERYONE ! All input is very much appreciated!
Shellyc5-c6-c7
On Tuesday, February 20, 2024 at 05:52:11 PM EST, Nichole Rohling 
 wrote:  
 
 
I’ve had 3 Invacare chairs over over 25 years….I refuse to change to any other 
brand.

https://pro.invacare.com/Mobility/Powered-Wheelchairs/Rear-Wheel-Drive/c/Rear-Wheel-Drive

  

Nicki 

C5/6

  

From: wheel...@centurylink.net [mailto:wheel...@centurylink.net] 
Sent: Tuesday, February 20, 2024 1:11 PM
To: wheelch...@aol.com; Shelly Kerchner; Quad-list; SHIRLEY BELL
Subject: Re: [QUAD-L] Question about lockdown systems.

  

I am going through process of getting new electric wheelchair and trying to get 
a model that has an ezlock for it.

I have invacare storm series but invacare went bankrupt, and dealer wants me to 
switch to Quantum R-TRAK rear wheel drive.Does anybody with ezlock have one for 
quantum chair?

  

I heard that ezlock is making one for R-TRAK  but I do not see it on their list 
of wheelchairs. 

Here is list from Ezlock.

https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf

  

Shelly, you can check out their list of wheelchairs on list at the link above.

  

Derrick W in cold ass PA.

  

On 2/19/24 5:53 PM, wheelch...@aol.com wrote:


Greetings,

I've never seen a manual wheelchair, using a single post on an EZ Lock System, 
for driving or riding.   I have seen double wheel securement for riding 
wheelchairs.  The design of an EZ lock system was designed for drivers and 
riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer.

Best Wishes.

  

  

On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote:

  

  

Hi Shelly, are you in the new England area?  


On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote: 

  

  

hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 

 

Currently, I’m driving my motorized chair using the easy lock system. 

 

I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.

 

One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 

 

Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….

 

( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.

 

It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!

 

Thanks ahead of time !!

 

Shelly Kerchner

 

  

Sent from Yahoo Mail for iPad 



  
  

RE: [QUAD-L] Question about lockdown systems.

[Nichole Rohling]

I’ve had 3 Invacare chairs over over 25 years….I refuse to change to any other 
brand.

https://pro.invacare.com/Mobility/Powered-Wheelchairs/Rear-Wheel-Drive/c/Rear-Wheel-Drive

 

Nicki 

C5/6

 

From: wheel...@centurylink.net [mailto:wheel...@centurylink.net] 
Sent: Tuesday, February 20, 2024 1:11 PM
To: wheelch...@aol.com; Shelly Kerchner; Quad-list; SHIRLEY BELL
Subject: Re: [QUAD-L] Question about lockdown systems.

 

I am going through process of getting new electric wheelchair and trying to get 
a model that has an ezlock for it.

I have invacare storm series but invacare went bankrupt, and dealer wants me to 
switch to Quantum R-TRAK rear wheel drive.Does anybody with ezlock have one for 
quantum chair?

 

I heard that ezlock is making one for R-TRAK  but I do not see it on their list 
of wheelchairs. 

Here is list from Ezlock.

https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf

 

Shelly, you can check out their list of wheelchairs on list at the link above.

 

Derrick W in cold ass PA.

 

On 2/19/24 5:53 PM, wheelch...@aol.com wrote:

Greetings,

I've never seen a manual wheelchair, using a single post on an EZ Lock System, 
for driving or riding.   I have seen double wheel securement for riding 
wheelchairs.  The design of an EZ lock system was designed for drivers and 
riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer.

Best Wishes.

 

 

On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL  
<mailto:sbell...@cox.net>  wrote:

 

 

Hi Shelly, are you in the new England area?  

On 02/19/2024 2:40 PM EST Shelly Kerchner  <mailto:shelly.kerch...@yahoo.com> 
 wrote: 

  

  

hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 

 

Currently, I’m driving my motorized chair using the easy lock system. 

 

I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.

 

One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 

 

Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….

 

( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.

 

It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!

 

Thanks ahead of time !!

 

Shelly Kerchner

 

 

 
<https://mail.onelink.me/107872968?pid=nativeplacement=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_>
 Sent from Yahoo Mail for iPad 

 

Re: [QUAD-L] Question about lockdown systems.

[wheelch...@aol.com]

 Invacare is still in business Worldwide and continues to make some excellent 
electric wheelchairs.Second, Dealers should not advise you of which brand and 
model is best for you.  They have an agenda to sell YOU something, to make a 
profit.  Same as a car dealer, trying to telling YOU to buy a Ford at a Chevy 
Dealership.Before you purchase anything, you should be evaluated by a licensed 
and certified Occupational Therapist.  An Occupational Therapy will properly 
measure you and help determine YOUR mobility and physical needs to achieve 
mobility.  They are trained to determine, along with your primary doctor and 
YOU the best, for your indoor and outdoor needs.  Will your chair be used 
indoor mostly or outdoors?   Do you need a lift to reach higher places?  Can 
you operate a chair by yourself or do you need assistance.  Will you be driving 
in your chair or just riding.  Will you need to recline for pressure relief?  
Salespeople are not certified to make those decision for YOU.What medical 
mobility special needs will you need.  Lastly, if you are going to drive, will 
YOUR chair be able to be upgraded?Yes, you are correct, InvaCare quit making 
the Storm Series.  It was a great rear wheel drive unit.  Unless it is 
necessary, stay away from those 6 wheel, center load electric chair.  Same 
applies to the Front Wheel Drive chairs, unless specified by a licensed and 
certified Occupational Therapist.Best WishesOn Tuesday, February 20, 2024 
at 01:11:25 PM CST,  wrote:  
 
  I am going through process of getting new electric wheelchair and trying to 
get a model that has an ezlock for it. I have invacare storm series but 
invacare went bankrupt, and dealer wants me to switch to Quantum R-TRAK rear 
wheel drive.Does anybody with ezlock have one for quantum chair? 
  I heard that ezlock is making one for R-TRAK  but I do not see it on their 
list of wheelchairs. 
  Here is list from Ezlock.
  
https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf
 
  Shelly, you can check out their list of wheelchairs on list at the link above.
  
  Derrick W in cold ass PA.
  
  On 2/19/24 5:53 PM, wheelch...@aol.com wrote:
  
 
 Greetings, I've never seen a manual wheelchair, using a single post on an EZ 
Lock System, for driving or riding.   I have seen double wheel securement for 
riding wheelchairs.  The design of an EZ lock system was designed for drivers 
and riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer. Best 
Wishes. 
  
  On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote:
  
  Hi Shelly, are you in the new England area?   
  On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:  
        
hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 
 
 
 
Currently, I’m driving my motorized chair using the easy lock system. 
 
 
 
I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.
 
 
 
One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 
 
 
 
Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….
 
 
 
( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.
 
 
 
It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!
 
 
 
Thanks ahead of time !!
 
 
 
Shelly Kerchner
 
 
 
 
  Sent from Yahoo Mail for iPad  
  

 
   

Re: [QUAD-L] Question about lockdown systems.

[wheelsdw]

I am going through process of getting new electric wheelchair and trying 
to get a model that has an ezlock for it.
I have invacare storm series but invacare went bankrupt, and dealer 
wants me to switch to Quantum R-TRAK rear wheel drive.Does anybody with 
ezlock have one for quantum chair?


I heard that ezlock is making one for R-TRAK  but I do not see it on 
their list of wheelchairs.

Here is list from Ezlock.
https://www.ezlock.net/wp-content/uploads/2018/05/bkt_cht_no_pricing_chart_only_fax_2015-2016.pdf

Shelly, you can check out their list of wheelchairs on list at the link 
above.


Derrick W in cold ass PA.

On 2/19/24 5:53 PM, wheelch...@aol.com wrote:

Greetings,
I've never seen a manual wheelchair, using a single post on an EZ Lock 
System, for driving or riding.   I have seen double wheel securement 
for riding wheelchairs.  The design of an EZ lock system was designed 
for drivers and riders using powered chairs.  I would consider going 
directly to EZ Lock Securement and getting an answer directly from 
them rather than a dealer.

Best Wishes.


On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote:



Hi Shelly, are you in the new England area?
On 02/19/2024 2:40 PM EST Shelly Kerchner  
wrote:


hi to all ! Past two years been having health issues/skin breakdown, 
rotator cuff surgery, recovery, etc. so I have been absent from this 
group! I hope everyone is well!


Currently, I’m driving my motorized chair using the easy lock system.

I want to be able to use my manual chair and was advised that I would 
need the new Q straint lock down system ( state agreed to install and 
pay for the pin for my manual chair. ) the reason being because the 
easy lock does not make a pin for my manual chair.


One last thought, the salesman/company who recommended the new lock 
down system at First told me it be no problem for me to use my 
current motorized chair with the new system( qstraint)


Then weeks later flipped on me and said because of liability the only 
chair I could drive from would be my manual chair, and could no 
longer  use the motorized chair……….


( many months ago also he told me this is just between you and I, but 
we looked at the pins and there’s no difference between the pens 
except colors and the only trouble I may run into is if I had an 
accident and tried to come back on the company who made the pin 
because I had did not have the pin the manufacturer requires us to use.


It’s a cumbersome process to navigate so I would appreciate any one 
willing to share their experience and would appreciate some assistance!


Thanks ahead of time !!

Shelly Kerchner



Sent from Yahoo Mail for iPad 
 

Re: [QUAD-L] Cordless phone do you all use?

[Eric Olson]

Mine is a Panasonic KX-TGE23.  It's an older model now, but I just searched
for - Panasonic cordless phone on Best Buy and there is a bunch to choose
from.  Happy hunting

On Mon, Feb 19, 2024 at 2:39 PM Daniel Gove  wrote:

> Hello Everyone,
> I just have a quick question for the group.  I'm wondering what brand
> cordless phone you all use?  I ask because I'm in the market myself and
> need to get one
> as soon as possible as both of mine are falling apart.  The older they get
> the more difficult they are to dial!  I'm looking to purchase a cordless
> speaker phone
> with very easy to operate keys.  Y'all have any recommendations?  I'm
> looking to purchase something like my current system which is a two handset
> Panasonic
> Cordless phone system with a built in answering machine.
>
>
> Dan G.
> quadz...@optonline.net
>
>

Re: [QUAD-L] Question about lockdown systems.

[Jeffrey Gaede]

 I have a power wheelchair and an EZ lock system in my van. The one thing I 
would warn about is to make sure they don't install that "single post" so low 
on your chair, manual or not, that it interferes with bumps, curb cuts or 
anything else. That's an issue I'm dealing with now.Jeff
On Monday, February 19, 2024 at 03:24:45 PM PST, Shelly Kerchner 
 wrote:  
 
  Thank you! So very much! I no longer feel so very alone!


On Monday, February 19, 2024 at 05:53:18 PM EST, wheelch...@aol.com 
 wrote:  
 
  Greetings,I've never seen a manual wheelchair, using a single post on an EZ 
Lock System, for driving or riding.   I have seen double wheel securement for 
riding wheelchairs.  The design of an EZ lock system was designed for drivers 
and riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer.Best 
Wishes.

On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote: 
 
Hi Shelly, are you in the new England area?   
  On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:  
        
hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 
 
 
 
Currently, I’m driving my motorized chair using the easy lock system. 
 
 
 
I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.
 
 
 
One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 
 
 
 
Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….
 
 
 
( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.
 
 
 
It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!
 
 
 
Thanks ahead of time !!
 
 
 
Shelly Kerchner
 
 
 
 
  Sent from Yahoo Mail for iPad  
   

Re: [QUAD-L] Question about lockdown systems.

[Shelly Kerchner]

 Thank you! So very much! I no longer feel so very alone!


On Monday, February 19, 2024 at 05:53:18 PM EST, wheelch...@aol.com 
 wrote:  
 
  Greetings,I've never seen a manual wheelchair, using a single post on an EZ 
Lock System, for driving or riding.   I have seen double wheel securement for 
riding wheelchairs.  The design of an EZ lock system was designed for drivers 
and riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer.Best 
Wishes.

On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote: 
 
Hi Shelly, are you in the new England area?   
  On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:  
        
hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 
 
 
 
Currently, I’m driving my motorized chair using the easy lock system. 
 
 
 
I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.
 
 
 
One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 
 
 
 
Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….
 
 
 
( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.
 
 
 
It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!
 
 
 
Thanks ahead of time !!
 
 
 
Shelly Kerchner
 
 
 
 
  Sent from Yahoo Mail for iPad  
 

Re: [QUAD-L] Question about lockdown systems.

[wheelch...@aol.com]

 Greetings,I've never seen a manual wheelchair, using a single post on an EZ 
Lock System, for driving or riding.   I have seen double wheel securement for 
riding wheelchairs.  The design of an EZ lock system was designed for drivers 
and riders using powered chairs.  I would consider going directly to EZ Lock 
Securement and getting an answer directly from them rather than a dealer.Best 
Wishes.

On Monday, February 19, 2024 at 03:33:35 PM CST, SHIRLEY BELL 
 wrote: 
 
Hi Shelly, are you in the new England area?   
  On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:  
        
hi to all ! Past two years been having health issues/skin breakdown, rotator 
cuff surgery, recovery, etc. so I have been absent from this group! I hope 
everyone is well! 
 
 
 
Currently, I’m driving my motorized chair using the easy lock system. 
 
 
 
I want to be able to use my manual chair and was advised that I would need the 
new Q straint lock down system ( state agreed to install and pay for the pin 
for my manual chair. ) the reason being because the easy lock does not make a 
pin for my manual chair.
 
 
 
One last thought, the salesman/company who recommended the new lock down system 
at First told me it be no problem for me to use my current motorized chair with 
the new system( qstraint) 
 
 
 
Then weeks later flipped on me and said because of liability the only chair I 
could drive from would be my manual chair, and could no longer  use the 
motorized chair……….
 
 
 
( many months ago also he told me this is just between you and I, but we looked 
at the pins and there’s no difference between the pens except colors and the 
only trouble I may run into is if I had an accident and tried to come back on 
the company who made the pin because I had did not have the pin the 
manufacturer requires us to use.
 
 
 
It’s a cumbersome process to navigate so I would appreciate any one willing to 
share their experience and would appreciate some assistance!
 
 
 
Thanks ahead of time !!
 
 
 
Shelly Kerchner
 
 
 
 
  Sent from Yahoo Mail for iPad  
   

Re: [QUAD-L] Question about lockdown systems.

[SHIRLEY BELL]

Hi Shelly, are you in the new England area? 

> On 02/19/2024 2:40 PM EST Shelly Kerchner  wrote:
>  
>  
> hi to all ! Past two years been having health issues/skin breakdown, rotator 
> cuff surgery, recovery, etc. so I have been absent from this group! I hope 
> everyone is well! 
>  
> Currently, I’m driving my motorized chair using the easy lock system. 
>  
> I want to be able to use my manual chair and was advised that I would need 
> the new Q straint lock down system ( state agreed to install and pay for the 
> pin for my manual chair. ) the reason being because the easy lock does not 
> make a pin for my manual chair.
>  
> One last thought, the salesman/company who recommended the new lock down 
> system at First told me it be no problem for me to use my current motorized 
> chair with the new system( qstraint) 
>  
> Then weeks later flipped on me and said because of liability the only chair I 
> could drive from would be my manual chair, and could no longer  use the 
> motorized chair……….
>  
> ( many months ago also he told me this is just between you and I, but we 
> looked at the pins and there’s no difference between the pens except colors 
> and the only trouble I may run into is if I had an accident and tried to come 
> back on the company who made the pin because I had did not have the pin the 
> manufacturer requires us to use.
>  
> It’s a cumbersome process to navigate so I would appreciate any one willing 
> to share their experience and would appreciate some assistance!
>  
> Thanks ahead of time !!
>  
> Shelly Kerchner
>  
> 
> 
> Sent from Yahoo Mail for iPad 
> https://mail.onelink.me/107872968?pid=nativeplacement=Global_Acquisition_YMktg_315_Internal_EmailSignature_sub1=Acquisition_sub2=Global_YMktg_sub3=_sub4=10604_sub5=EmailSignature__Static_
> 

RE: [QUAD-L] CNA rates?

[Paul Jacobson]

Hi Aaron, I completely understand your point of view.  In my 20 SCI years,

I found that it is best to pay more than the going rate.  It lets me keep my

Caregivers for longer.  

 

Turnover is the worst….losing that knowledge, having to interview and 

retrain is just awful.  I pay between $27 - $30/hr.  It seems to work.

 

Thank you,

Paul  c5/6

 

From: Aaron Mann  
Sent: Monday, January 29, 2024 3:41 PM
To: Eric Olson 
Cc: Dana ; Daniel Gove ; 
quad-list@eskimo.com
Subject: Re: [QUAD-L] CNA rates?

 

I know the rate that we pay our attendants can vary based on where we live, but 
I have a hard time seeing more than $25 an hour being the top end. Especially 
just for basic ADLs. If you are paying $30 an hour, I sure hope your 
expectation of care is stellar. I mean immaculate care, always on time, doing 
things above and beyond the basic or even more than that. I still pay today 
starting at $15 an hour. It takes working for me at least six months before I 
will bump that up to $20 an hour where I expect timeliness, thoroughness, and a 
cheery attitude. If I'm going to go to $25/hr, they better do things beyond 
ADLs. Things like vacuuming, mopping, organizing all of my things without 
asking.

 

I think that what you may be feeling is "what would I want to be paid if I did 
this job". You really have to get out of this mindset, because there are many 
things I asked to be done that personally I probably would not do it unless it 
was a direct loved one. Today most starting jobs are $15 an hour and they are 
expected to do more work than what we expect for ADLs. I know it's hard not to 
feel guilty, especially when they are a nice person and probably have a family. 
People who we have even considered family because of how closely they work with 
us. I have been through over 300 attendants in my 34 years. While I may have 
felt very closely to those who stuck with me through years and invited to 
family events and worked with the children. In the end, they were not actually 
family. They had to move on and live their lives based on what they needed.

 

What may help is setting up a bonus plan. Set their pay and a base of $20 an 
hour and list or just give bonuses each pay period based on stellar or above 
the normal work. This would allow you to give a bonus of nothing or hundreds of 
dollars if they were especially helpful one pay period.

 

Hope this helps, your brother in SCI.


 

Aaron Mann

 

 

On Sat, Jan 27, 2024 at 1:30 PM Eric Olson mailto:whee...@wi.rr.com> > wrote:

I agree.  $30/hour seems awfully generous even if your cares were extensive and 
more complex.  Doing just basic ADL'S seems like a pretty easy gig especially 
for that money 

 

On Sat, Jan 27, 2024 at 5:54 AM Dana mailto:wraydan...@gmail.com> > wrote:

That is way above the average pay a CNA makes.  They should not be asking for a 
raise if so I try to find other people.  That's just my opinion.  It will be 
great to hear, what others have to say from the list.  Thank you for asking 
pertinent questions.

Dana

 

On Thu, Jan 25, 2024 at 3:18 PM Daniel Gove mailto:quadz...@optonline.net> > wrote:

Hello everyone, 

A question for all on the list who use private duty CNA/Home Health Aide Care 
and pay for it 

out of pocket, how much you pay your CNA/Home health aide  per hour?   I have 
two 

excellent CIA's and both are complaining that they are not earning enough.  
Thing is, 

I gave them both raises are a few months ago, from $28.00 to $30.00 an hour.  I 
know 

that's not a lot but at the time that's all I could afford but my financial 
situation 

Changed for the better and now I can afford a little more and am wondering what 
a 

a good hourly rate is to pay an excellent CNA?  Below are my morning 

and evening Care plans: 

Morning care plan: 

Sponge bath, upper body (no legs or feet) Done in bed, six days a week, whole 
body 7 days a week. 

Getting dressed (also done in bed) I usually wear nylon running pants, 

no underpants so just involves changing the pants. 

Sliding board transfer into power chair.  

She makes a breakfast which usually consists of brewed coffee & microwave 
pancakes or 

waffles done in toaster oven.  On Fridays and only Friday she'll make scrambled 
eggs 

and a toasted English muffin. 

3 days a week she'll make a wrap sandwich.  

Quite a few little side jobs like checking and opening my mail, opening any 
boxes or packages I may receive. 

 

 

Night time care plan: 

Mixing and serving me metamucil. 

Getting undressed, 99% of time only involves taking off shirt. 

Sliding board transfer into bed. 

Range of motion exercises on legs, takes about 10 minutes. 

Prepare night snack, usually just 2 apple slices & 2 prunes.  The 

Moving wheelchair into place by bed (power chair, heavy, not very easy to move) 

Also occasional little side jobs like checking & opening my mail, opening any 
boxes or packages I may receive.  

 

Sorry for su

Re: [QUAD-L] CNA rates?

[Aaron Mann]

I know the rate that we pay our attendants can vary based on where we live,
but I have a hard time seeing more than $25 an hour being the top end.
Especially just for basic ADLs. If you are paying $30 an hour, I sure hope
your expectation of care is stellar. I mean immaculate care, always on
time, doing things above and beyond the basic or even more than that. I
still pay today starting at $15 an hour. It takes working for me at least
six months before I will bump that up to $20 an hour where I expect
timeliness, thoroughness, and a cheery attitude. If I'm going to go to
$25/hr, they better do things beyond ADLs. Things like vacuuming, mopping,
organizing all of my things without asking.

I think that what you may be feeling is "what would I want to be paid if I
did this job". You really have to get out of this mindset, because there
are many things I asked to be done that personally I probably would not do
it unless it was a direct loved one. Today most starting jobs are $15 an
hour and they are expected to do more work than what we expect for ADLs. I
know it's hard not to feel guilty, especially when they are a nice person
and probably have a family. People who we have even considered family
because of how closely they work with us. I have been through over 300
attendants in my 34 years. While I may have felt very closely to those who
stuck with me through years and invited to family events and worked with
the children. In the end, they were not actually family. They had to move
on and live their lives based on what they needed.

What may help is setting up a bonus plan. Set their pay and a base of $20
an hour and list or just give bonuses each pay period based on stellar or
above the normal work. This would allow you to give a bonus of nothing or
hundreds of dollars if they were especially helpful one pay period.

Hope this helps, your brother in SCI.

Aaron Mann


On Sat, Jan 27, 2024 at 1:30 PM Eric Olson  wrote:

> I agree.  $30/hour seems awfully generous even if your cares were
> extensive and more complex.  Doing just basic ADL'S seems like a pretty
> easy gig especially for that money
>
> On Sat, Jan 27, 2024 at 5:54 AM Dana  wrote:
>
>> That is way above the average pay a CNA makes.  They should not be asking
>> for a raise if so I try to find other people.  That's just my opinion.  It
>> will be great to hear, what others have to say from the list.  Thank you
>> for asking pertinent questions.
>> Dana
>>
>> On Thu, Jan 25, 2024 at 3:18 PM Daniel Gove 
>> wrote:
>>
>>> Hello everyone,
>>> A question for all on the list who use private duty CNA/Home Health Aide
>>> Care and pay for it
>>> out of pocket, how much you pay your CNA/Home health aide  per hour?   I
>>> have two
>>> excellent CIA's and both are complaining that they are not earning
>>> enough.  Thing is,
>>> I gave them both raises are a few months ago, from $28.00 to $30.00 an
>>> hour.  I know
>>> that's not a lot but at the time that's all I could afford but my
>>> financial situation
>>> Changed for the better and now I can afford a little more and am
>>> wondering what a
>>> a good hourly rate is to pay an excellent CNA?  Below are my morning
>>> and evening Care plans:
>>> Morning care plan:
>>> Sponge bath, upper body (no legs or feet) Done in bed, six days a week,
>>> whole body 7 days a week.
>>> Getting dressed (also done in bed) I usually wear nylon running pants,
>>> no underpants so just involves changing the pants.
>>> Sliding board transfer into power chair.
>>> She makes a breakfast which usually consists of brewed coffee &
>>> microwave pancakes or
>>> waffles done in toaster oven.  On Fridays and only Friday she'll make
>>> scrambled eggs
>>> and a toasted English muffin.
>>> 3 days a week she'll make a wrap sandwich.
>>> Quite a few little side jobs like checking and opening my mail, opening
>>> any boxes or packages I may receive.
>>>
>>>
>>> Night time care plan:
>>> Mixing and serving me metamucil.
>>> Getting undressed, 99% of time only involves taking off shirt.
>>> Sliding board transfer into bed.
>>> Range of motion exercises on legs, takes about 10 minutes.
>>> Prepare night snack, usually just 2 apple slices & 2 prunes.  The
>>> Moving wheelchair into place by bed (power chair, heavy, not very easy
>>> to move)
>>> Also occasional little side jobs like checking & opening my mail,
>>> opening any boxes or packages I may receive.
>>>
>>> Sorry for such long list, just wanted you all to get a good idea of how
>>> much work these girls do.  Thanks!
>>>
>>>
>>> Dan G.
>>> quadz...@optonline.net
>>>
>>>

Re: [QUAD-L] CNA rates?

[wheelsdw]

I agree that you are over paying for ADL'S. $30/hr is nurse pay. not CNA.
I live in rural area. Agencys here pay workers $9.50/hour for part time.
Other pays $14/hour.
If I paid $30/hour, there would be a line of people wanting the job.

You should look to hire young people just out of school. I know that 
they might not have experience but you could train them. or an elder 
person who just wants to help around house.

derrick



On 1/27/24 2:29 PM, Eric Olson wrote:
I agree.  $30/hour seems awfully generous even if your cares were 
extensive and more complex.  Doing just basic ADL'S seems like a 
pretty easy gig especially for that money


On Sat, Jan 27, 2024 at 5:54 AM Dana  wrote:

That is way above the average pay a CNA makes. They should not be
asking for a raise if so I try to find other people.  That's just
my opinion.  It will be great to hear, what others have to say
from the list.  Thank you for asking pertinent questions.
Dana

On Thu, Jan 25, 2024 at 3:18 PM Daniel Gove
 wrote:

Hello everyone,
A question for all on the list who use private duty CNA/Home
Health Aide Care and pay for it
out of pocket, how much you pay your CNA/Home health aide  per
hour?   I have two
excellent CIA's and both are complaining that they are not
earning enough.  Thing is,
I gave them both raises are a few months ago, from $28.00 to
$3000 an hour.  I know
that's not a lot but at the time that's all I could afford but
my financial situation
Changed for the better and now I can afford a little more and
am wondering what a
a good hourly rate is to pay an excellent CNA? Below are my
morning
and evening Care plans:
Morning care plan:
Sponge bath, upper body (no legs or feet) Done in bed, six
days a week, whole body 7 days a week.
Getting dressed (also done in bed) I usually wear nylon
running pants,
no underpants so just involves changing the pants.
Sliding board transfer into power chair.
She makes a breakfast which usually consists of brewed coffee
& microwave pancakes or
waffles done in toaster oven.  On Fridays and only Friday
she'll make scrambled eggs
and a toasted English muffin.
3 days a week she'll make a wrap sandwich.
Quite a few little side jobs like checking and opening my
mail, opening any boxes or packages I may receive.


Night time care plan:
Mixing and serving me metamucil.
Getting undressed, 99% of time only involves taking off shirt.
Sliding board transfer into bed.
Range of motion exercises on legs, takes about 10 minutes.
Prepare night snack, usually just 2 apple slices & 2 prunes.  The
Moving wheelchair into place by bed (power chair, heavy, not
very easy to move)
Also occasional little side jobs like checking & opening my
mail, opening any boxes or packages I may receive.

Sorry for such long list, just wanted you all to get a good
idea of how much work these girls do. Thanks!


Dan G.
quadz...@optonline.net

Re: [QUAD-L] CNA rates?

[Eric Olson]

I agree.  $30/hour seems awfully generous even if your cares were extensive
and more complex.  Doing just basic ADL'S seems like a pretty easy gig
especially for that money

On Sat, Jan 27, 2024 at 5:54 AM Dana  wrote:

> That is way above the average pay a CNA makes.  They should not be asking
> for a raise if so I try to find other people.  That's just my opinion.  It
> will be great to hear, what others have to say from the list.  Thank you
> for asking pertinent questions.
> Dana
>
> On Thu, Jan 25, 2024 at 3:18 PM Daniel Gove 
> wrote:
>
>> Hello everyone,
>> A question for all on the list who use private duty CNA/Home Health Aide
>> Care and pay for it
>> out of pocket, how much you pay your CNA/Home health aide  per hour?   I
>> have two
>> excellent CIA's and both are complaining that they are not earning
>> enough.  Thing is,
>> I gave them both raises are a few months ago, from $28.00 to $30.00 an
>> hour.  I know
>> that's not a lot but at the time that's all I could afford but my
>> financial situation
>> Changed for the better and now I can afford a little more and am
>> wondering what a
>> a good hourly rate is to pay an excellent CNA?  Below are my morning
>> and evening Care plans:
>> Morning care plan:
>> Sponge bath, upper body (no legs or feet) Done in bed, six days a week,
>> whole body 7 days a week.
>> Getting dressed (also done in bed) I usually wear nylon running pants,
>> no underpants so just involves changing the pants.
>> Sliding board transfer into power chair.
>> She makes a breakfast which usually consists of brewed coffee & microwave
>> pancakes or
>> waffles done in toaster oven.  On Fridays and only Friday she'll make
>> scrambled eggs
>> and a toasted English muffin.
>> 3 days a week she'll make a wrap sandwich.
>> Quite a few little side jobs like checking and opening my mail, opening
>> any boxes or packages I may receive.
>>
>>
>> Night time care plan:
>> Mixing and serving me metamucil.
>> Getting undressed, 99% of time only involves taking off shirt.
>> Sliding board transfer into bed.
>> Range of motion exercises on legs, takes about 10 minutes.
>> Prepare night snack, usually just 2 apple slices & 2 prunes.  The
>> Moving wheelchair into place by bed (power chair, heavy, not very easy to
>> move)
>> Also occasional little side jobs like checking & opening my mail, opening
>> any boxes or packages I may receive.
>>
>> Sorry for such long list, just wanted you all to get a good idea of how
>> much work these girls do.  Thanks!
>>
>>
>> Dan G.
>> quadz...@optonline.net
>>
>>

Re: [QUAD-L] CNA rates?

[Dana]

That is way above the average pay a CNA makes.  They should not be asking
for a raise if so I try to find other people.  That's just my opinion.  It
will be great to hear, what others have to say from the list.  Thank you
for asking pertinent questions.
Dana

On Thu, Jan 25, 2024 at 3:18 PM Daniel Gove  wrote:

> Hello everyone,
> A question for all on the list who use private duty CNA/Home Health Aide
> Care and pay for it
> out of pocket, how much you pay your CNA/Home health aide  per hour?   I
> have two
> excellent CIA's and both are complaining that they are not earning
> enough.  Thing is,
> I gave them both raises are a few months ago, from $28.00 to $30.00 an
> hour.  I know
> that's not a lot but at the time that's all I could afford but my
> financial situation
> Changed for the better and now I can afford a little more and am wondering
> what a
> a good hourly rate is to pay an excellent CNA?  Below are my morning
> and evening Care plans:
> Morning care plan:
> Sponge bath, upper body (no legs or feet) Done in bed, six days a week,
> whole body 7 days a week.
> Getting dressed (also done in bed) I usually wear nylon running pants,
> no underpants so just involves changing the pants.
> Sliding board transfer into power chair.
> She makes a breakfast which usually consists of brewed coffee & microwave
> pancakes or
> waffles done in toaster oven.  On Fridays and only Friday she'll make
> scrambled eggs
> and a toasted English muffin.
> 3 days a week she'll make a wrap sandwich.
> Quite a few little side jobs like checking and opening my mail, opening
> any boxes or packages I may receive.
>
>
> Night time care plan:
> Mixing and serving me metamucil.
> Getting undressed, 99% of time only involves taking off shirt.
> Sliding board transfer into bed.
> Range of motion exercises on legs, takes about 10 minutes.
> Prepare night snack, usually just 2 apple slices & 2 prunes.  The
> Moving wheelchair into place by bed (power chair, heavy, not very easy to
> move)
> Also occasional little side jobs like checking & opening my mail, opening
> any boxes or packages I may receive.
>
> Sorry for such long list, just wanted you all to get a good idea of how
> much work these girls do.  Thanks!
>
>
> Dan G.
> quadz...@optonline.net
>
>

Re: [QUAD-L] sweating profusely when laying on my side at night

[Jeffrey Gaede]

 A lot of this sounds way too familiar for me. I would be thinking hip 
bones/heads of your femur pressure points or less likely your ischeal (butt) 
bone. You may want to have it checked out now because if it's started something 
inside that's yet to show itself, there may be something that can be done 
before more damage is caused.. Not trying to scare you but this all sounds way 
too familiar… Jeff
On Friday, January 12, 2024 at 09:52:44 AM PST, Eric Olson 
 wrote:  
 
 Wish I could help. You could just monitor it, but if it continues, I would 
assume something is going on. I don't have any sweating issues so I can't 
really relate.Regardless, sweating is probably not a good sign.  Sorry I 
couldn't be more helpful 

On Thu, Jan 11, 2024 at 10:37 PM Michelle Harkness 
 wrote:

Hey Greg!
I'm a C5 Quad, 30 years post.  It's always either a pressure point, bowel or 
UTI for me.  Bowel and UTI are usually not constant though, they come and go 
for sweats, like when I'm actually pooping.  I also use a magic bullet every 
other night and have been successful with it for 30 years!  The pressure point 
is the only one that will have the sweating immediately stop if I reposition.  
I don't usually even have a breakdown of skin with the "bed sweats", it's 
usually if my pillow between my knee and ankle points has shifted and I have 
bone to bone contact, if my top leg has somehow fell forward over my bottom and 
stayed there for a while, or if my heels are not on a pillow and are making 
contact with the bed.  I also use an alternating air pressure mattress, which 
works fairly good, but not always the best.
Weirdly, I'm wondering if it could just be a bone pushing against you inside 
that your body is not feeling comfortable with?  Especially if you're not 
seeing red marks anywhere.  I will usually have faint red marks if any of the 
above happen, which go away fairly quickly.  With internal stuff, like my 
galbladder and pancreas having an issue, they showed up in spasms, not sweats.  
The only other time the sweats were weird, was when I went into labor with my 
kiddo.  The contractions mimicked my pooping contractions and made me sweat 
with every one - I assume that's not an issue for you though.  ;)
I would say to pay extra special attention to your positioning and see if 
anything is pressing more firmly.  I usually sweat opposite - so if I'm 
sweating on the left, the right is most likely the problem and vice versa.  
I'm really wondering if one of your kidney stones just decided to present 
differently or get stuck somewhere else to provide your night sweats?  That 
could potentially be a pressure point your body doesn't like as well.  My hubby 
just had his first stone a few months ago and I legit thought he was dying!  A 
trip to the ER, lots of pain meds and a 5 mm stone later, he was okay!  Not 
gonna lie, I was not impressed with the stone - I always thought they were 
bigger!
I swear there should be a whole special book on how our body gives us different 
signs as quads!!  Best of luck figuring things out and I hope it's sooner 
rather than later!
Michelle
On Thu, Jan 11, 2024 at 10:13 PM Greg  wrote:

Hi all.

I'm a C5 quad since a diving accident in August 1987 when I was 23. I just 
turned 60, am(was) 5'10" and I weigh 182 lbs, down from 205 lbs this time last 
year. 
Amazingly enough I have used the same bowel program since leaving the hospital 
in 1988. Every other night I lay on my left side then use a suppository (Magic 
Bullet by Concepts in Confidence) the following morning. Most mornings my 
program is finished in 2 hours, sometimes 2.5. Yes, I have been very lucky in 
that regard. The following night I lay on my right side. In other words, I 
empty my bowels every 48 hours. Also, I usually spend about 8 hours on my side 
each night.
The last four nights I have started sweating profusely in the middle of the 
night. The sweating is usually limited to my neck, shoulder, side, and arm but 
only on the side that I'm not laying on. So when I'm laying on my left side, my 
right side sweats, then the following night while laying on my right side, I 
sweat on the left side. I have no sensation from the mid-shoulder down, but 
strangely enough I do feel the sweating. 
Re: pressure sores, occasionally I do have superficial pressure sores at the 
ischial tuberosity location, but nothing serious since 2004-2005 when I had a 
bad one that required surgery and sidelined me for almost 2 years. Since 2004 I 
have slept on an Invacare air mattress, and for the past 5 years it's been the 
Invacare MA600 system. Today my butt (and sides, hips, knees) looks good, and 
at 60 I don't spend a lot of time in my chair for fear of developing a pressure 
sore. My caregiver has been with me the entire time and knows as much about 
decubitus ulcers as I do. The sweating does not appear to be caused by pressure 
on my skin. Of course it could be something under the skin but I don't know. 
Another problem I have 

Re: [QUAD-L] sweating profusely when laying on my side at night

[Eric Olson]

Wish I could help. You could just monitor it, but if it continues, I would
assume something is going on. I don't have any sweating issues so I can't
really relate.Regardless, sweating is probably not a good sign.  Sorry I
couldn't be more helpful

On Thu, Jan 11, 2024 at 10:37 PM Michelle Harkness <
hotwheelsmiche...@gmail.com> wrote:

> Hey Greg!
>
> I'm a C5 Quad, 30 years post.  It's always either a pressure point, bowel
> or UTI for me.  Bowel and UTI are usually not constant though, they come
> and go for sweats, like when I'm actually pooping.  I also use a magic
> bullet every other night and have been successful with it for 30 years!
> The pressure point is the only one that will have the sweating immediately
> stop if I reposition.  I don't usually even have a breakdown of skin with
> the "bed sweats", it's usually if my pillow between my knee and ankle
> points has shifted and I have bone to bone contact, if my top leg has
> somehow fell forward over my bottom and stayed there for a while, or if my
> heels are not on a pillow and are making contact with the bed.  I also use
> an alternating air pressure mattress, which works fairly good, but not
> always the best.
>
> Weirdly, I'm wondering if it could just be a bone pushing against you
> inside that your body is not feeling comfortable with?  Especially if
> you're not seeing red marks anywhere.  I will usually have faint red marks
> if any of the above happen, which go away fairly quickly.  With internal
> stuff, like my galbladder and pancreas having an issue, they showed up in
> spasms, not sweats.  The only other time the sweats were weird, was when I
> went into labor with my kiddo.  The contractions mimicked my pooping
> contractions and made me sweat with every one - I assume that's not an
> issue for you though.  ;)
>
> I would say to pay extra special attention to your positioning and see if
> anything is pressing more firmly.  I usually sweat opposite - so if I'm
> sweating on the left, the right is most likely the problem and vice versa.
>
> I'm really wondering if one of your kidney stones just decided to
> present differently or get stuck somewhere else to provide your night
> sweats?  That could potentially be a pressure point your body doesn't like
> as well.  My hubby just had his first stone a few months ago and I legit
> thought he was dying!  A trip to the ER, lots of pain meds and a 5 mm stone
> later, he was okay!  Not gonna lie, I was not impressed with the stone - I
> always thought they were bigger!
>
> I swear there should be a whole special book on how our body gives us
> different signs as quads!!  Best of luck figuring things out and I hope
> it's sooner rather than later!
>
> Michelle
>
> On Thu, Jan 11, 2024 at 10:13 PM Greg  wrote:
>
>> Hi all.
>>
>> I'm a C5 quad since a diving accident in August 1987 when I was 23. I
>> just turned 60, am(was) 5'10" and I weigh 182 lbs, down from 205 lbs this
>> time last year.
>>
>> Amazingly enough I have used the same bowel program since leaving the
>> hospital in 1988. Every other night I lay on my left side then use a
>> suppository (Magic Bullet by Concepts in Confidence) the following morning.
>> Most mornings my program is finished in 2 hours, sometimes 2.5. Yes, I have
>> been very lucky in that regard. The following night I lay on my right side.
>> In other words, I empty my bowels every 48 hours. Also, I usually spend
>> about 8 hours on my side each night.
>>
>> The last four nights I have started sweating profusely in the middle of
>> the night. The sweating is usually limited to my neck, shoulder, side, and
>> arm but only on the side that I'm not laying on. So when I'm laying on my
>> left side, my right side sweats, then the following night while laying on
>> my right side, I sweat on the left side. I have no sensation from the
>> mid-shoulder down, but strangely enough I do feel the sweating.
>>
>> Re: pressure sores, occasionally I do have superficial pressure sores at
>> the ischial tuberosity location, but nothing serious since 2004-2005 when I
>> had a bad one that required surgery and sidelined me for almost 2 years.
>> Since 2004 I have slept on an Invacare air mattress, and for the past 5
>> years it's been the Invacare MA600 system. Today my butt (and sides, hips,
>> knees) looks good, and at 60 I don't spend a lot of time in my chair for
>> fear of developing a pressure sore. My caregiver has been with me the
>> entire time and knows as much about decubitus ulcers as I do. The sweating
>> does not appear to be caused by pressure on my skin. Of course it could be
>> something under the skin but I don't know.
>>
>> Another problem I have dealt with for the past 30+ years is kidney
>> stones. Kidney stones have their own set of warning signs but sweating has
>> never been one of them for me. I mention this because it's possible I do
>> have kidney stones as I pretty much live with them all the time. Several
>> times over the years I have had lithotripsy to 

Re: [QUAD-L] sweating profusely when laying on my side at night

[Michelle Harkness]

Hey Greg!

I'm a C5 Quad, 30 years post.  It's always either a pressure point, bowel
or UTI for me.  Bowel and UTI are usually not constant though, they come
and go for sweats, like when I'm actually pooping.  I also use a magic
bullet every other night and have been successful with it for 30 years!
The pressure point is the only one that will have the sweating immediately
stop if I reposition.  I don't usually even have a breakdown of skin with
the "bed sweats", it's usually if my pillow between my knee and ankle
points has shifted and I have bone to bone contact, if my top leg has
somehow fell forward over my bottom and stayed there for a while, or if my
heels are not on a pillow and are making contact with the bed.  I also use
an alternating air pressure mattress, which works fairly good, but not
always the best.

Weirdly, I'm wondering if it could just be a bone pushing against you
inside that your body is not feeling comfortable with?  Especially if
you're not seeing red marks anywhere.  I will usually have faint red marks
if any of the above happen, which go away fairly quickly.  With internal
stuff, like my galbladder and pancreas having an issue, they showed up in
spasms, not sweats.  The only other time the sweats were weird, was when I
went into labor with my kiddo.  The contractions mimicked my pooping
contractions and made me sweat with every one - I assume that's not an
issue for you though.  ;)

I would say to pay extra special attention to your positioning and see if
anything is pressing more firmly.  I usually sweat opposite - so if I'm
sweating on the left, the right is most likely the problem and vice versa.

I'm really wondering if one of your kidney stones just decided to
present differently or get stuck somewhere else to provide your night
sweats?  That could potentially be a pressure point your body doesn't like
as well.  My hubby just had his first stone a few months ago and I legit
thought he was dying!  A trip to the ER, lots of pain meds and a 5 mm stone
later, he was okay!  Not gonna lie, I was not impressed with the stone - I
always thought they were bigger!

I swear there should be a whole special book on how our body gives us
different signs as quads!!  Best of luck figuring things out and I hope
it's sooner rather than later!

Michelle

On Thu, Jan 11, 2024 at 10:13 PM Greg  wrote:

> Hi all.
>
> I'm a C5 quad since a diving accident in August 1987 when I was 23. I just
> turned 60, am(was) 5'10" and I weigh 182 lbs, down from 205 lbs this time
> last year.
>
> Amazingly enough I have used the same bowel program since leaving the
> hospital in 1988. Every other night I lay on my left side then use a
> suppository (Magic Bullet by Concepts in Confidence) the following morning.
> Most mornings my program is finished in 2 hours, sometimes 2.5. Yes, I have
> been very lucky in that regard. The following night I lay on my right side.
> In other words, I empty my bowels every 48 hours. Also, I usually spend
> about 8 hours on my side each night.
>
> The last four nights I have started sweating profusely in the middle of
> the night. The sweating is usually limited to my neck, shoulder, side, and
> arm but only on the side that I'm not laying on. So when I'm laying on my
> left side, my right side sweats, then the following night while laying on
> my right side, I sweat on the left side. I have no sensation from the
> mid-shoulder down, but strangely enough I do feel the sweating.
>
> Re: pressure sores, occasionally I do have superficial pressure sores at
> the ischial tuberosity location, but nothing serious since 2004-2005 when I
> had a bad one that required surgery and sidelined me for almost 2 years.
> Since 2004 I have slept on an Invacare air mattress, and for the past 5
> years it's been the Invacare MA600 system. Today my butt (and sides, hips,
> knees) looks good, and at 60 I don't spend a lot of time in my chair for
> fear of developing a pressure sore. My caregiver has been with me the
> entire time and knows as much about decubitus ulcers as I do. The sweating
> does not appear to be caused by pressure on my skin. Of course it could be
> something under the skin but I don't know.
>
> Another problem I have dealt with for the past 30+ years is kidney stones.
> Kidney stones have their own set of warning signs but sweating has never
> been one of them for me. I mention this because it's possible I do have
> kidney stones as I pretty much live with them all the time. Several times
> over the years I have had lithotripsy to remove large stubborn kidney
> stones that caused persistent UTIs, but it's not surprising for me to pass
> several kidney stones, sometimes quite large, over the course of a few
> weeks and I can usually tell when it's about to happen. Headaches, chills,
> and muscle spasms in certain areas of my side and lower back, almost always
> accompany kidney stones, and I am not experiencing any of these at the
> moment. No UTI symptoms at the moment either.
>

Re: [QUAD-L] Leg Fracture - Above knee

[Tod Santee]

I'm not sure what happened.  I was replying to Philip and when it came up
in my Inbox it looked like I addressed it to you, Ed.  A glltch somewhere,
I guess.  Glad it was helpful in some way.

\--Tod

On Wed, Jan 3, 2024 at 5:25 PM Edward Tessier  wrote:

> sorry for my typo! I'll be a quad 40 years this August
> --
> *From:* Edward Tessier 
> *Sent:* Wednesday, January 3, 2024 4:22 PM
> *To:* Tod Santee ; Philip Wells <
> philipdwe...@gmail.com>
> *Cc:* quad-list 
> *Subject:* Re: [QUAD-L] Leg Fracture - Above knee
>
> hey Philip and Todd,
>
> Thank you so much for posting about osteoporosis. I have not been tested
> for it for over 20 years so seeing what you posted was a great reminder to
> check in with my body and see how it's doing. For a change, my HMO didn't
> even complain about the expense.
>
> By the way, I'm also 56, C5/6,  and will be a quad for four years this
> year (a surfing accident in 1984). I know all of us on here are black swans
> who have survived the odds for a long time. But it was extra cool to hear
> about two of you who have had such a similar journey…
>
> Cheers,
>
> Ed Tessier
> --
> *From:* Tod Santee 
> *Sent:* Wednesday, January 3, 2024 4:15 PM
> *To:* Philip Wells 
> *Cc:* quad-list 
> *Subject:* Re: [QUAD-L] Leg Fracture - Above knee
>
> Hi Philip,
> I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee--
> in a car accident 2 yrs ago.  Even with my advanced osteoporosis it healed
> well with no bracing needed.  I also had a burst fracture at L4 that was a
> whole different story.  We thought my leg was causing autonomic dysreflexia
> (AD) but I insisted it wasn't because the AD changed depending on the
> position of my back.  I pressed my docs enough for back x-rays that once a
> broken vertebra was found (1.5 months after the accident) they decided to
> do a full spine CT.  Vertebrae were too fragile for plates & screws so I
> had a cement injected into the cracks to stabilize the vertebra and it
> helped A LOT.  (Did this on a sacral vertebra in '08 after a  bad transfer
> caused a nerve pinch.)  I still had slight AD & sweating after the lumbar
> procedure so I'm still getting epidural cortisone & lidocaine injections at
> a spine clinic every 3 months to control the remaining AD symptoms.
>
> Good luck & best wishes,
> --Tod
>
> On Wed, Dec 27, 2023 at 2:23 AM Philip Wells 
> wrote:
>
> Evening Disabled Community
>
> Hey a few days ago I fall from my chair, slo mo fall onto footpath.
>
> X-ray yesterday showed the break, Doctors not confident its going to heal.
>
> I have it in a brace to keep knee joint at 60 degrees.
>
> Anyone have experience of  a 40+ year vet breaking his leg ?
>
> All doctors here Ive spoken to have 0 SCI knowledge.
>
> Some outcomes sounding a little scary.
>
> Many thanks.
>
>
> Best
>
> Philip Wells
>
>

Re: [QUAD-L] Leg Fracture - Above knee

[Edward Tessier]

sorry for my typo! I'll be a quad 40 years this August

From: Edward Tessier 
Sent: Wednesday, January 3, 2024 4:22 PM
To: Tod Santee ; Philip Wells 
Cc: quad-list 
Subject: Re: [QUAD-L] Leg Fracture - Above knee

hey Philip and Todd,

Thank you so much for posting about osteoporosis. I have not been tested for it 
for over 20 years so seeing what you posted was a great reminder to check in 
with my body and see how it's doing. For a change, my HMO didn't even complain 
about the expense.

By the way, I'm also 56, C5/6,  and will be a quad for four years this year (a 
surfing accident in 1984). I know all of us on here are black swans who have 
survived the odds for a long time. But it was extra cool to hear about two of 
you who have had such a similar journey…

Cheers,

Ed Tessier

From: Tod Santee 
Sent: Wednesday, January 3, 2024 4:15 PM
To: Philip Wells 
Cc: quad-list 
Subject: Re: [QUAD-L] Leg Fracture - Above knee

Hi Philip,
I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee-- in a 
car accident 2 yrs ago.  Even with my advanced osteoporosis it healed well with 
no bracing needed.  I also had a burst fracture at L4 that was a whole 
different story.  We thought my leg was causing autonomic dysreflexia (AD) but 
I insisted it wasn't because the AD changed depending on the position of my 
back.  I pressed my docs enough for back x-rays that once a broken vertebra was 
found (1.5 months after the accident) they decided to do a full spine CT.  
Vertebrae were too fragile for plates & screws so I had a cement injected into 
the cracks to stabilize the vertebra and it helped A LOT.  (Did this on a 
sacral vertebra in '08 after a  bad transfer caused a nerve pinch.)  I still 
had slight AD & sweating after the lumbar procedure so I'm still getting 
epidural cortisone & lidocaine injections at a spine clinic every 3 months to 
control the remaining AD symptoms.

Good luck & best wishes,
--Tod

On Wed, Dec 27, 2023 at 2:23 AM Philip Wells 
mailto:philipdwe...@gmail.com>> wrote:
Evening Disabled Community

Hey a few days ago I fall from my chair, slo mo fall onto footpath.

X-ray yesterday showed the break, Doctors not confident its going to heal.

I have it in a brace to keep knee joint at 60 degrees.

Anyone have experience of  a 40+ year vet breaking his leg ?

All doctors here Ive spoken to have 0 SCI knowledge.

Some outcomes sounding a little scary.

Many thanks.


Best

Philip Wells

Re: [QUAD-L] Leg Fracture - Above knee

[Edward Tessier]

hey Philip and Todd,

Thank you so much for posting about osteoporosis. I have not been tested for it 
for over 20 years so seeing what you posted was a great reminder to check in 
with my body and see how it's doing. For a change, my HMO didn't even complain 
about the expense.

By the way, I'm also 56, C5/6,  and will be a quad for four years this year (a 
surfing accident in 1984). I know all of us on here are black swans who have 
survived the odds for a long time. But it was extra cool to hear about two of 
you who have had such a similar journey…

Cheers,

Ed Tessier

From: Tod Santee 
Sent: Wednesday, January 3, 2024 4:15 PM
To: Philip Wells 
Cc: quad-list 
Subject: Re: [QUAD-L] Leg Fracture - Above knee

Hi Philip,
I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee-- in a 
car accident 2 yrs ago.  Even with my advanced osteoporosis it healed well with 
no bracing needed.  I also had a burst fracture at L4 that was a whole 
different story.  We thought my leg was causing autonomic dysreflexia (AD) but 
I insisted it wasn't because the AD changed depending on the position of my 
back.  I pressed my docs enough for back x-rays that once a broken vertebra was 
found (1.5 months after the accident) they decided to do a full spine CT.  
Vertebrae were too fragile for plates & screws so I had a cement injected into 
the cracks to stabilize the vertebra and it helped A LOT.  (Did this on a 
sacral vertebra in '08 after a  bad transfer caused a nerve pinch.)  I still 
had slight AD & sweating after the lumbar procedure so I'm still getting 
epidural cortisone & lidocaine injections at a spine clinic every 3 months to 
control the remaining AD symptoms.

Good luck & best wishes,
--Tod

On Wed, Dec 27, 2023 at 2:23 AM Philip Wells 
mailto:philipdwe...@gmail.com>> wrote:
Evening Disabled Community

Hey a few days ago I fall from my chair, slo mo fall onto footpath.

X-ray yesterday showed the break, Doctors not confident its going to heal.

I have it in a brace to keep knee joint at 60 degrees.

Anyone have experience of  a 40+ year vet breaking his leg ?

All doctors here Ive spoken to have 0 SCI knowledge.

Some outcomes sounding a little scary.

Many thanks.


Best

Philip Wells

Re: [QUAD-L] Leg Fracture - Above knee

[Edward Tessier]

From: Tod Santee 
Sent: Wednesday, January 3, 2024 4:15 PM
To: Philip Wells 
Cc: quad-list 
Subject: Re: [QUAD-L] Leg Fracture - Above knee

Hi Philip,
I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee-- in a 
car accident 2 yrs ago.  Even with my advanced osteoporosis it healed well with 
no bracing needed.  I also had a burst fracture at L4 that was a whole 
different story.  We thought my leg was causing autonomic dysreflexia (AD) but 
I insisted it wasn't because the AD changed depending on the position of my 
back.  I pressed my docs enough for back x-rays that once a broken vertebra was 
found (1.5 months after the accident) they decided to do a full spine CT.  
Vertebrae were too fragile for plates & screws so I had a cement injected into 
the cracks to stabilize the vertebra and it helped A LOT.  (Did this on a 
sacral vertebra in '08 after a  bad transfer caused a nerve pinch.)  I still 
had slight AD & sweating after the lumbar procedure so I'm still getting 
epidural cortisone & lidocaine injections at a spine clinic every 3 months to 
control the remaining AD symptoms.

Good luck & best wishes,
--Tod

On Wed, Dec 27, 2023 at 2:23 AM Philip Wells 
mailto:philipdwe...@gmail.com>> wrote:
Evening Disabled Community

Hey a few days ago I fall from my chair, slo mo fall onto footpath.

X-ray yesterday showed the break, Doctors not confident its going to heal.

I have it in a brace to keep knee joint at 60 degrees.

Anyone have experience of  a 40+ year vet breaking his leg ?

All doctors here Ive spoken to have 0 SCI knowledge.

Some outcomes sounding a little scary.

Many thanks.


Best

Philip Wells

Re: [QUAD-L] Leg Fracture - Above knee

[Tod Santee]

Hi Philip,
I'm 56, (C5/6 for 40 yrs) and broke my femur --just above the knee-- in
a car accident 2 yrs ago.  Even with my advanced osteoporosis it healed
well with no bracing needed.  I also had a burst fracture at L4 that was a
whole different story.  We thought my leg was causing autonomic dysreflexia
(AD) but I insisted it wasn't because the AD changed depending on the
position of my back.  I pressed my docs enough for back x-rays that once a
broken vertebra was found (1.5 months after the accident) they decided to
do a full spine CT.  Vertebrae were too fragile for plates & screws so I
had a cement injected into the cracks to stabilize the vertebra and it
helped A LOT.  (Did this on a sacral vertebra in '08 after a  bad transfer
caused a nerve pinch.)  I still had slight AD & sweating after the lumbar
procedure so I'm still getting epidural cortisone & lidocaine injections at
a spine clinic every 3 months to control the remaining AD symptoms.

Good luck & best wishes,
--Tod

On Wed, Dec 27, 2023 at 2:23 AM Philip Wells  wrote:

> Evening Disabled Community
>
> Hey a few days ago I fall from my chair, slo mo fall onto footpath.
>
> X-ray yesterday showed the break, Doctors not confident its going to heal.
>
> I have it in a brace to keep knee joint at 60 degrees.
>
> Anyone have experience of  a 40+ year vet breaking his leg ?
>
> All doctors here Ive spoken to have 0 SCI knowledge.
>
> Some outcomes sounding a little scary.
>
> Many thanks.
>
>
> Best
>
> Philip Wells
>
>

Re: [QUAD-L] PROLIA

[Tod Santee]

Hi Paul,
I'm also a C5/6 quad.  I've been getting Prolia for the past 3 yrs and
haven't felt any difference after any injections.  It seems to have, at
least, slowed my bone loss.  My SCI was in 1983 so I'm 40 yrs into this.  I
started with Fosamax pills around 2000, then moved on to another pill I
can't remember, and then started 5 yrs of annual Reclast infusions.  All
those were intended to stop or slow bone loss.  The first I tried
that was supposed to actually rebuild bone was a daily, subcutaneous
injection called Forteo, but it caused very unusual crystals to form in my
bladder and clog my catheter within a week or so (I tried it every 2 days
but it just meant 2 weeks without a clog).  No reason or similar symptoms
were reported but I tried again after 6-8 months with the same result.  So,
they approved one more year of Reclast before starting Prolia 3 yrs ago.
 I hope it works well for you!

Best,
Tod


On Fri, Dec 29, 2023 at 11:47 AM Paul Jacobson  wrote:

> Getting my first PROLIA injection next week to increase bone density.
>
> Is it a good idea? What are the initial side effects?
>
>
>
> Thank you,
>
> Paul c5/6  20 yrs post
>

Re: [QUAD-L] BONE DENISITY

[SHIRLEY BELL]

I gree, I tied some shots, they did help but would have to keep doing and they 
have side effects. My primary said the same. plus no weight bearing.

> On 12/27/2023 3:00 PM EST Eric Olson  wrote:
>  
>  
> This is just my opinion, but I think you hit the nail on the head.  Without 
> weight bearing, do these drugs do anything?  They were not developed to be 
> used for people that are not weight bearing,  Just my 2 cents.
> 
> On Wed, Dec 27, 2023 at 2:35 AM Dana  mailto:wraydan...@gmail.com> wrote:
> 
> > I wonder why they took me off Fosamax, maybe my bone density had not 
> > improved. I don’t know if our bone density can ever improve since we aren’t 
> > able to bear weight. What do you think? Dana
> > 
> > On Thu, Dec 14, 2023 at 8:35 AM Noel  > mailto:swl...@gmail.com> wrote:
> > 
> > > I was diagnosed with osteoporosis about 10 years ago, high risk of 
> > > fracture. I've been taking Fosamax ever since. I had another bone density 
> > > test a couple of months ago, to see if the Fosamax was working. She 
> > > didn't give me the results of the latest bone density test, just tell me 
> > > to keep taking the Fosamax.
> > > 
> > > When I was first diagnosed, I started using an RT300 FES bike after 
> > > reading that it had strengthened bones on many people that have used one 
> > > (notably Christopher Reeve). Used it for a couple of years, puts a lot of 
> > > pressure on the bones. But, after a couple of years, I developed severe 
> > > pain in my knees and had to stop. I've tried everything for the pain in 
> > > my knees, prescription and nonprescription, nothing seems to help.
> > > 
> > > On Wed, Dec 13, 2023 at 1:54 AM Dana  > > mailto:wraydan...@gmail.com> wrote:
> > > 
> > > > Yes I have taken for several years. I need to get a DEXA scan before I 
> > > > can get another injection. This is my third type of treatment for 
> > > > osteoporosis. I was injured at 20 and the state would not pay for a 
> > > > standing frame like they suggested at rehab, this caused me to get 
> > > > osteoporosis. 
> > > >  
> > > > I go to a specialist at KU, I have pain in my shoulders and neck and 
> > > > she suggested I use Biofreeze. It was a prescription and now the more 
> > > > effective Brand over the counter. I order from Amazon.
> > > > Because of the Osteoporosis I have not been able to get surgery on my 
> > > > broken hip broken foot or arm. I did have Foote drop surgery and that’s 
> > > > the one that gave me gangrene, a wound vac 2 months and then A skin 
> > > > graft. I have no meat on the back of my heel and part of the bone is 
> > > > gone, because the doctor left the external fixator on seven days 
> > > > without checking. leaving it on too long broke my foot. After I get my 
> > > > next DEXA, I will tell you my status. I don’t know how well it improves 
> > > > but if you read about it online it says that you need to take it. It 
> > > > gives pretty grim prognosis to Osteoporosis. I want to hear from 
> > > > everybody on the list who has been diagnosed with osteoporosis and what 
> > > > treatment you have been getting and the results of the treatment 
> > > >  Gratefully yours, Dana C 4-5, complete,ileo-conduit,trach, 49 years 
> > > > post. I so enjoy the Quad-List. Thank you Jim for Starting this 
> > > > productive group of survivors.I am grateful for this Quad-List. We are 
> > > > a few That contribute but United.
> > > > 
> > > > On Sun, Dec 10, 2023 at 3:00 PM Paul Jacobson  > > > mailto:pjacob...@san.rr.com> wrote:
> > > > 
> > > > > 
> > > > > Has anyone taken PROLIA for better bone density? Can you
> > > > > 
> > > > > share your results and thoughts? Thank you!
> > > > > 
> > > > >  
> > > > > 
> > > > > Paul c5/6
> > > > > 
> > > > > San Diego, CA
> > > > > 
> > > > 
> > > 
> > 
> 

Re: [QUAD-L] BONE DENISITY

[Eric Olson]

This is just my opinion, but I think you hit the nail on the head.  Without
weight bearing, do these drugs do anything?  They were not developed to be
used for people that are not weight bearing,  Just my 2 cents.

On Wed, Dec 27, 2023 at 2:35 AM Dana  wrote:

> I wonder why they took me off Fosamax, maybe my bone density had not
> improved. I don’t know if our bone density can ever improve since we aren’t
> able to bear weight. What do you think? Dana
>
> On Thu, Dec 14, 2023 at 8:35 AM Noel  wrote:
>
>> I was diagnosed with osteoporosis about 10 years ago, high risk of
>> fracture. I've been taking Fosamax ever since. I had another bone density
>> test a couple of months ago, to see if the Fosamax was working. She didn't
>> give me the results of the latest bone density test, just tell me to keep
>> taking the Fosamax.
>>
>> When I was first diagnosed, I started using an RT300 FES bike after
>> reading that it had strengthened bones on many people that have used one
>> (notably Christopher Reeve). Used it for a couple of years, puts a lot of
>> pressure on the bones. But, after a couple of years, I developed severe
>> pain in my knees and had to stop. I've tried everything for the pain in my
>> knees, prescription and nonprescription, nothing seems to help.
>>
>> On Wed, Dec 13, 2023 at 1:54 AM Dana  wrote:
>>
>>> Yes I have taken for several years. I need to get a DEXA scan before I
>>> can get another injection. This is my third type of treatment for
>>> osteoporosis. I was injured at 20 and the state would not pay for a
>>> standing frame like they suggested at rehab, this caused me to get
>>> osteoporosis.
>>>
>>> I go to a specialist at KU, I have pain in my shoulders and neck and she
>>> suggested I use Biofreeze. It was a prescription and now the more effective
>>> Brand over the counter. I order from Amazon.
>>> Because of the Osteoporosis I have not been able to get surgery on my
>>> broken hip broken foot or arm. I did have Foote drop surgery and that’s the
>>> one that gave me gangrene, a wound vac 2 months and then A skin graft. I
>>> have no meat on the back of my heel and part of the bone is gone, because
>>> the doctor left the external fixator on seven days without checking.
>>> leaving it on too long broke my foot. After I get my next DEXA, I will tell
>>> you my status. I don’t know how well it improves but if you read about it
>>> online it says that you need to take it. It gives pretty grim prognosis to
>>> Osteoporosis. I want to hear from everybody on the list who has been
>>> diagnosed with osteoporosis and what treatment you have been getting and
>>> the results of the treatment
>>>  Gratefully yours, Dana C 4-5, complete,ileo-conduit,trach, 49 years
>>> post. I so enjoy the Quad-List. Thank you Jim for Starting this productive
>>> group of survivors.I am grateful for this Quad-List. We are a few That
>>> contribute but United.
>>>
>>> On Sun, Dec 10, 2023 at 3:00 PM Paul Jacobson 
>>> wrote:
>>>
 Has anyone taken PROLIA for better bone density? Can you

 share your results and thoughts? Thank you!



 Paul c5/6

 San Diego, CA

>>>

Re: [QUAD-L] BONE DENISITY

[Dana]

I wonder why they took me off Fosamax, maybe my bone density had not
improved. I don’t know if our bone density can ever improve since we aren’t
able to bear weight. What do you think? Dana

On Thu, Dec 14, 2023 at 8:35 AM Noel  wrote:

> I was diagnosed with osteoporosis about 10 years ago, high risk of
> fracture. I've been taking Fosamax ever since. I had another bone density
> test a couple of months ago, to see if the Fosamax was working. She didn't
> give me the results of the latest bone density test, just tell me to keep
> taking the Fosamax.
>
> When I was first diagnosed, I started using an RT300 FES bike after
> reading that it had strengthened bones on many people that have used one
> (notably Christopher Reeve). Used it for a couple of years, puts a lot of
> pressure on the bones. But, after a couple of years, I developed severe
> pain in my knees and had to stop. I've tried everything for the pain in my
> knees, prescription and nonprescription, nothing seems to help.
>
> On Wed, Dec 13, 2023 at 1:54 AM Dana  wrote:
>
>> Yes I have taken for several years. I need to get a DEXA scan before I
>> can get another injection. This is my third type of treatment for
>> osteoporosis. I was injured at 20 and the state would not pay for a
>> standing frame like they suggested at rehab, this caused me to get
>> osteoporosis.
>>
>> I go to a specialist at KU, I have pain in my shoulders and neck and she
>> suggested I use Biofreeze. It was a prescription and now the more effective
>> Brand over the counter. I order from Amazon.
>> Because of the Osteoporosis I have not been able to get surgery on my
>> broken hip broken foot or arm. I did have Foote drop surgery and that’s the
>> one that gave me gangrene, a wound vac 2 months and then A skin graft. I
>> have no meat on the back of my heel and part of the bone is gone, because
>> the doctor left the external fixator on seven days without checking.
>> leaving it on too long broke my foot. After I get my next DEXA, I will tell
>> you my status. I don’t know how well it improves but if you read about it
>> online it says that you need to take it. It gives pretty grim prognosis to
>> Osteoporosis. I want to hear from everybody on the list who has been
>> diagnosed with osteoporosis and what treatment you have been getting and
>> the results of the treatment
>>  Gratefully yours, Dana C 4-5, complete,ileo-conduit,trach, 49 years
>> post. I so enjoy the Quad-List. Thank you Jim for Starting this productive
>> group of survivors.I am grateful for this Quad-List. We are a few That
>> contribute but United.
>>
>> On Sun, Dec 10, 2023 at 3:00 PM Paul Jacobson 
>> wrote:
>>
>>> Has anyone taken PROLIA for better bone density? Can you
>>>
>>> share your results and thoughts? Thank you!
>>>
>>>
>>>
>>> Paul c5/6
>>>
>>> San Diego, CA
>>>
>>

Re: [QUAD-L] Prolia to treat osteoporosis

[Tod Santee]

Hi All!
 I'm a long-time Quad-List member though I haven't written in a LONG
time for a number of reasons, but this recently caught my attention because
my own Prolia date is coming up again soon in the next couple months.  Two
years ago my endocrinologist was trying to get insurance approval to try a
then-newish medication, *Evenity*, to help rebuild some of the bone loss
that's occurred over the last 40 years.  Unfortunately, it was only
approved for use in post-menopausal women, of which I'm neither.  Are there
any men or women here that have used it (especially men)?  Has it helped
rebuild bone in anyone who has used it?
 About me, I'm a 56 yr old C5-6, complete quad, 40 yrs post-injury
since a fall from a tree when I was goofing around as a teen (that latter
part is likely a basically-familiar story to many here, I'm sure).  I lived
and started college in PA before tiring of the cold & dampness getting me
sick.  I moved to Tucson, finished my biology degree and got a high school
teaching certification.  I taught 11 years full-time and 2 years part-time
at the biggest high school in the city before some other injuries (and
more) caused me to have to leave on long-term disability until getting to
my required number of years for full retirement.  My wife was a physical
therapist at the University of Arizona's Adaptive Fitness program and gym.
We typically travel internationally a couple times a year and we're both
certified scuba divers, so that determines some of our travel.

Best wishes &
Happy Holidays,
--Tod Santee


On Tue, Dec 5, 2023 at 5:14 PM toran spencer 
wrote:

> Hi
>
> Can anybody give me some suggestion on what I can do for my muscles I
> don’t take baclofen or Lyrica because of the side effects. However, I’m
> having so much muscle tension and aching pain. I don’t know what to do. Do
> anybody have any suggestions on any natural supplements or anything?
>
> Get Outlook for iOS <https://aka.ms/o0ukef>
> --
> *From:* Ben Mattlin 
> *Sent:* Sunday, December 3, 2023 1:42:27 PM
> *To:* 'Paul Jacobson' ; 'quad-list' <
> quad-list@eskimo.com>
> *Subject:* RE: [QUAD-L] Prolia to treat osteoporosis
>
>
> Yup. I've been on it for several years now. One shot every six months.
> Other quads had warned me about bad side effects, but I've never
> experienced any. My latest bone-density scans don't show any improvement,
> but my osteoporosis has not gotten worse, either. My doctor says that's a
> win.
>
>
>
> *From:* Paul Jacobson 
> *Sent:* Sunday, December 3, 2023 10:28 AM
> *To:* quad-list 
> *Subject:* [QUAD-L] Prolia to treat osteoporosis
>
>
>
> Hi,
>
>
>
> Has anyone ever tried Prolia or anything similar to treat osteoporosis?
>
> What were your results and concerns.
>
>
>
> Thanks,
>
> Paul  c5/6
>

Re: [QUAD-L] BONE DENISITY

[Noel]

I was diagnosed with osteoporosis about 10 years ago, high risk of
fracture. I've been taking Fosamax ever since. I had another bone density
test a couple of months ago, to see if the Fosamax was working. She didn't
give me the results of the latest bone density test, just tell me to keep
taking the Fosamax.

When I was first diagnosed, I started using an RT300 FES bike after reading
that it had strengthened bones on many people that have used one (notably
Christopher Reeve). Used it for a couple of years, puts a lot of pressure
on the bones. But, after a couple of years, I developed severe pain in my
knees and had to stop. I've tried everything for the pain in my knees,
prescription and nonprescription, nothing seems to help.

On Wed, Dec 13, 2023 at 1:54 AM Dana  wrote:

> Yes I have taken for several years. I need to get a DEXA scan before I can
> get another injection. This is my third type of treatment for osteoporosis.
> I was injured at 20 and the state would not pay for a standing frame like
> they suggested at rehab, this caused me to get osteoporosis.
>
> I go to a specialist at KU, I have pain in my shoulders and neck and she
> suggested I use Biofreeze. It was a prescription and now the more effective
> Brand over the counter. I order from Amazon.
> Because of the Osteoporosis I have not been able to get surgery on my
> broken hip broken foot or arm. I did have Foote drop surgery and that’s the
> one that gave me gangrene, a wound vac 2 months and then A skin graft. I
> have no meat on the back of my heel and part of the bone is gone, because
> the doctor left the external fixator on seven days without checking.
> leaving it on too long broke my foot. After I get my next DEXA, I will tell
> you my status. I don’t know how well it improves but if you read about it
> online it says that you need to take it. It gives pretty grim prognosis to
> Osteoporosis. I want to hear from everybody on the list who has been
> diagnosed with osteoporosis and what treatment you have been getting and
> the results of the treatment
>  Gratefully yours, Dana C 4-5, complete,ileo-conduit,trach, 49 years post.
> I so enjoy the Quad-List. Thank you Jim for Starting this productive group
> of survivors.I am grateful for this Quad-List. We are a few That contribute
> but United.
>
> On Sun, Dec 10, 2023 at 3:00 PM Paul Jacobson 
> wrote:
>
>> Has anyone taken PROLIA for better bone density? Can you
>>
>> share your results and thoughts? Thank you!
>>
>>
>>
>> Paul c5/6
>>
>> San Diego, CA
>>
>

Re: [QUAD-L] bladder update

[Michelle Harkness]

PMNR = Physical Medicine and Rehabilitation

I'm not sure if you fully understand what a supra pubic catheter is?  It's
a foley catheter, inserted in the hole they make in your abdomen that sits
in your bladder.  There is literally an open hole in your abdomen and that
is where the catheter comes out of, instead of your groin area.  So, I used
the foley catheter inserted in the supra pubic hole to drain my bladder.
It is always there, and has the balloon that blows up and everything.  At
night, the overnight drainage bag hooked directly to the suprapubic
catheter.  When I "capped it off", I just used a flip valve on the
indwelling catheter to open/close it to drain my urine out.  Sorry for the
confusion in my wording.  You cannot remove the supra pubic catheter for
much longer than it takes to change it out, as the hole will start closing
up quickly. I am just outside of Fort Worth, so we have 2 different
qualified docs - 1 in Dallas and 1 in Fort Worth.  The Fort Worth doc was
hands down the better of the 2.

When I had my suprapubic it was terrible for me (and put in by the first
doc in Dallas, who wasn't my favorite).  The open hole just never seemed to
heal properly (in the 6 months I had it), would constantly drain crap and
always smelled (no matter how much I cleaned it).  I also would always get
low level dysreflexia with it and get uncomfortable feelings whenever I
transferred or moved it.  I also got crazy/ridiculous infections when I had
it.  My doc that did the Mitrofinoff (Fort Worth doc) disliked the supra
pubics and thought they created more infections (but I didn't discuss in
detail).  He agreed with my PMNR doc on doing the mitrofinoff and here we
are.

It's always a battle between what you think/feel is the best for you and
what doctors suggest - because they do not know everything.  I am huge into
"if it isn't broke, don't fix it" and am very resistant to change.  My
intermittent cathing wasn't broke, but I'm an aging quad and knew it just
wasn't ideal anymore.

On Tue, Dec 12, 2023 at 6:55 PM SHIRLEY BELL  wrote:

> what is a PMNR doc? When you used a night bag you must have used a floley.
> Also, when you capped off the s pubic, did you use a reg cath to drain it
> intermittently? Also, where did you have these surgeries? I am in RI sorry
> to keep asking, it is confusing. I read online that with a supra pub you
> can only use a foley, no capping off, and intermittent unless you have the
> one you have now. I never get UTIs with the Foley so thought the sup pub
> would be the same. my doctor says less infections with it?
>
> On 12/12/2023 7:28 PM EST Michelle Harkness 
> wrote:
>
>
> Hey Shirley, I actually capped mine off and drained it periodically -
> trying to sustain some bladder capacity.  It was tiny though, and only
> could hold about 100-150 cc's before I had to empty it.  I did use a night
> bag when sleeping to make things easier though.
>
> I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine
> and Reconstructive Surgery doc (that's who did my Mitrofinoff).  Between
> them both, they should have the knowledge to tell you what your body is
> able to have done to help you out the most.  The whole purpose of mine was
> to expand my bladder, help with infections and give me more independence.
> What was right for me might not be right for you.  I was just surprised at
> all of the options and applications they have in the reconstructive surgery
> side of things to help.  so there might be a different fit that works
> better for you.
>
> I've personally always avoided an indwelling catheter, based on my
> personal feelings and the suggestions of every urologist I've had.  Even my
> reconstructive doc isn't a fan of the supra pubic catheters because of the
> colonization of bacteria that occurs.  The quad life we live is fraught
> with tough decisions, but they do have a lot of things to try and help!
>
> On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL  wrote:
>
> Hi Michelle, one question, when you did supra pubic did you use a Foley
> catheter? you would have had to? Please let me know thanks!
>
> On 12/11/2023 9:52 PM EST Michelle Harkness 
> wrote:
>
>
> Hey Shirley!  I've been on this page forever and learned lots from y'all,
> but I tend to keep kinda quiet.  Not sure what your situation is exactly,
> but I've been a C5-6 quad for 30 years and I had always done intermittent
> cathing, relying on someone else for help with it.  In February of this
> year, I finally took the plunge and got a Mitrofinoff with bladder
> augmentation. I had tried a suprapubic for about 6 months, but hated it and
> the multiple never ending infections it caused, so I started looking more
> into the Mitrofinoff then.  I can now do my own cathing almost all of the
> time, through a stoma in my belly button that I use a male 16" catheter
> for.  The bladder augmentation helped wonders, and I was pretty unfamiliar
> with what that was, or what wonders it could do when I received it.  

Re: [QUAD-L] BONE DENISITY

[Dana]

Yes I have taken for several years. I need to get a DEXA scan before I can
get another injection. This is my third type of treatment for osteoporosis.
I was injured at 20 and the state would not pay for a standing frame like
they suggested at rehab, this caused me to get osteoporosis.

I go to a specialist at KU, I have pain in my shoulders and neck and she
suggested I use Biofreeze. It was a prescription and now the more effective
Brand over the counter. I order from Amazon.
Because of the Osteoporosis I have not been able to get surgery on my
broken hip broken foot or arm. I did have Foote drop surgery and that’s the
one that gave me gangrene, a wound vac 2 months and then A skin graft. I
have no meat on the back of my heel and part of the bone is gone, because
the doctor left the external fixator on seven days without checking.
leaving it on too long broke my foot. After I get my next DEXA, I will tell
you my status. I don’t know how well it improves but if you read about it
online it says that you need to take it. It gives pretty grim prognosis to
Osteoporosis. I want to hear from everybody on the list who has been
diagnosed with osteoporosis and what treatment you have been getting and
the results of the treatment
 Gratefully yours, Dana C 4-5, complete,ileo-conduit,trach, 49 years post.
I so enjoy the Quad-List. Thank you Jim for Starting this productive group
of survivors.I am grateful for this Quad-List. We are a few That contribute
but United.

On Sun, Dec 10, 2023 at 3:00 PM Paul Jacobson  wrote:

> Has anyone taken PROLIA for better bone density? Can you
>
> share your results and thoughts? Thank you!
>
>
>
> Paul c5/6
>
> San Diego, CA
>

Re: [QUAD-L] bladder update

[SHIRLEY BELL]

what is a PMNR doc? When you used a night bag you must have used a floley. 
Also, when you capped off the s pubic, did you use a reg cath to drain it 
intermittently? Also, where did you have these surgeries? I am in RI sorry to 
keep asking, it is confusing. I read online that with a supra pub you can only 
use a foley, no capping off, and intermittent unless you have the one you have 
now. I never get UTIs with the Foley so thought the sup pub would be the same. 
my doctor says less infections with it? 

> On 12/12/2023 7:28 PM EST Michelle Harkness  
> wrote:
>  
>  
> Hey Shirley, I actually capped mine off and drained it periodically - trying 
> to sustain some bladder capacity.  It was tiny though, and only could hold 
> about 100-150 cc's before I had to empty it.  I did use a night bag when 
> sleeping to make things easier though.  
>  
> I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine and 
> Reconstructive Surgery doc (that's who did my Mitrofinoff).  Between them 
> both, they should have the knowledge to tell you what your body is able to 
> have done to help you out the most.  The whole purpose of mine was to expand 
> my bladder, help with infections and give me more independence.  What was 
> right for me might not be right for you.  I was just surprised at all of the 
> options and applications they have in the reconstructive surgery side of 
> things to help.  so there might be a different fit that works better for you. 
>  
>  
> I've personally always avoided an indwelling catheter, based on my personal 
> feelings and the suggestions of every urologist I've had.  Even my 
> reconstructive doc isn't a fan of the supra pubic catheters because of the 
> colonization of bacteria that occurs.  The quad life we live is fraught with 
> tough decisions, but they do have a lot of things to try and help!
> 
> On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL  mailto:sbell...@cox.net> wrote:
> 
> > Hi Michelle, one question, when you did supra pubic did you use a Foley 
> > catheter? you would have had to? Please let me know thanks!
> > 
> > > On 12/11/2023 9:52 PM EST Michelle Harkness  > > mailto:hotwheelsmiche...@gmail.com> wrote:
> > >  
> > >  
> > > Hey Shirley!  I've been on this page forever and learned lots from y'all, 
> > > but I tend to keep kinda quiet.  Not sure what your situation is exactly, 
> > > but I've been a C5-6 quad for 30 years and I had always done intermittent 
> > > cathing, relying on someone else for help with it.  In February of this 
> > > year, I finally took the plunge and got a Mitrofinoff with bladder 
> > > augmentation. I had tried a suprapubic for about 6 months, but hated it 
> > > and the multiple never ending infections it caused, so I started looking 
> > > more into the Mitrofinoff then.  I can now do my own cathing almost all 
> > > of the time, through a stoma in my belly button that I use a male 16" 
> > > catheter for.  The bladder augmentation helped wonders, and I was pretty 
> > > unfamiliar with what that was, or what wonders it could do when I 
> > > received it.  It helps absorb the bladder spasms, gives you more capacity 
> > > and my doc said it helps lessen infections somehow (still trying to 
> > > figure that out).  The only draw back is they use your bowel for the 
> > > augmentation, which in turn causes lots of goobers in your urine (doc 
> > > says the bowel still does what its supposed to do).  But it's super nice 
> > > to not have to lay down 4 times a day to use the restroom, and basically 
> > > pee wherever I want to!  
> > >  
> > > Have an amazing day!
> > >  
> > > Michelle
> > > 
> > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com 
> > > mailto:wheelch...@aol.com mailto:wheelch...@aol.com> 
> > > wrote:
> > > 
> > > >  
> > > > Thanks for the update.  The bladder, over time, for those with 
> > > > indwelling caths, will/can shrink to the size of a walnut, compared to 
> > > > what it used to be.  When you consider the size of the cath, plus the 
> > > > balloon, inside a walnut.  there is not much room for urine to collect 
> > > > and it may pass quicker.
> > > > Best Wishes.
> > > >  
> > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL 
> > > > mailto:sbell...@cox.net> wrote:
> > > >  
> > > >  
> > > > Hi all, well I had my cystoscopy and all he found was a shrunken 
> > > > bladder. That is what is causing spasms on and off and rejecting 
> > > > catheters on and off. Not lasting as long. They are going to change my 
> > > > meds to see if that helps. Botox is an option as well. 47 years of 
> > > > indwelling catheter use has taken a toll. Not much they can do but I am 
> > > > looking into it. There is an external catheter option called a pur wick 
> > > > for women of course but I have doubts about it. I am trying not to 
> > > > worry but geez, not great. A suprapubic may be an option, not a cure 
> > > > but may be easier for me and my caretakers to deal with this.  Hope 

Re: [QUAD-L] bladder update

[Michelle Harkness]

Hey Shirley, I actually capped mine off and drained it periodically -
trying to sustain some bladder capacity.  It was tiny though, and only
could hold about 100-150 cc's before I had to empty it.  I did use a night
bag when sleeping to make things easier though.

I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine
and Reconstructive Surgery doc (that's who did my Mitrofinoff).  Between
them both, they should have the knowledge to tell you what your body is
able to have done to help you out the most.  The whole purpose of mine was
to expand my bladder, help with infections and give me more independence.
What was right for me might not be right for you.  I was just surprised at
all of the options and applications they have in the reconstructive surgery
side of things to help.  so there might be a different fit that works
better for you.

I've personally always avoided an indwelling catheter, based on my personal
feelings and the suggestions of every urologist I've had.  Even my
reconstructive doc isn't a fan of the supra pubic catheters because of the
colonization of bacteria that occurs.  The quad life we live is fraught
with tough decisions, but they do have a lot of things to try and help!

On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL  wrote:

> Hi Michelle, one question, when you did supra pubic did you use a Foley
> catheter? you would have had to? Please let me know thanks!
>
> On 12/11/2023 9:52 PM EST Michelle Harkness 
> wrote:
>
>
> Hey Shirley!  I've been on this page forever and learned lots from y'all,
> but I tend to keep kinda quiet.  Not sure what your situation is exactly,
> but I've been a C5-6 quad for 30 years and I had always done intermittent
> cathing, relying on someone else for help with it.  In February of this
> year, I finally took the plunge and got a Mitrofinoff with bladder
> augmentation. I had tried a suprapubic for about 6 months, but hated it and
> the multiple never ending infections it caused, so I started looking more
> into the Mitrofinoff then.  I can now do my own cathing almost all of the
> time, through a stoma in my belly button that I use a male 16" catheter
> for.  The bladder augmentation helped wonders, and I was pretty unfamiliar
> with what that was, or what wonders it could do when I received it.  It
> helps absorb the bladder spasms, gives you more capacity and my doc said it
> helps lessen infections somehow (still trying to figure that out).  The
> only draw back is they use your bowel for the augmentation, which in turn
> causes lots of goobers in your urine (doc says the bowel still does what
> its supposed to do).  But it's super nice to not have to lay down 4 times a
> day to use the restroom, and basically pee wherever I want to!
>
> Have an amazing day!
>
> Michelle
>
> On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com 
> wrote:
>
>
> Thanks for the update.  The bladder, over time, for those with indwelling
> caths, will/can shrink to the size of a walnut, compared to what it used to
> be.  When you consider the size of the cath, plus the balloon, inside a
> walnut.  there is not much room for urine to collect and it may pass
> quicker.
> Best Wishes.
>
> On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL <
> sbell...@cox.net> wrote:
>
>
> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
> That is what is causing spasms on and off and rejecting catheters on and
> off. Not lasting as long. They are going to change my meds to see if that
> helps. Botox is an option as well. 47 years of indwelling catheter use has
> taken a toll. Not much they can do but I am looking into it. There is an
> external catheter option called a pur wick for women of course but I have
> doubts about it. I am trying not to worry but geez, not great. A suprapubic
> may be an option, not a cure but may be easier for me and my caretakers to
> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
> for sure. Have a great holiday season.Shirley If you want to see how I make
> my living check out my Etsy shop here.
> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>
>

Re: [QUAD-L] bladder update

[SHIRLEY BELL]

Hi Michelle, one question, when you did supra pubic did you use a Foley 
catheter? you would have had to? Please let me know thanks!

> On 12/11/2023 9:52 PM EST Michelle Harkness  
> wrote:
>  
>  
> Hey Shirley!  I've been on this page forever and learned lots from y'all, but 
> I tend to keep kinda quiet.  Not sure what your situation is exactly, but 
> I've been a C5-6 quad for 30 years and I had always done intermittent 
> cathing, relying on someone else for help with it.  In February of this year, 
> I finally took the plunge and got a Mitrofinoff with bladder augmentation. I 
> had tried a suprapubic for about 6 months, but hated it and the multiple 
> never ending infections it caused, so I started looking more into the 
> Mitrofinoff then.  I can now do my own cathing almost all of the time, 
> through a stoma in my belly button that I use a male 16" catheter for.  The 
> bladder augmentation helped wonders, and I was pretty unfamiliar with what 
> that was, or what wonders it could do when I received it.  It helps absorb 
> the bladder spasms, gives you more capacity and my doc said it helps lessen 
> infections somehow (still trying to figure that out).  The only draw back is 
> they use your bowel for the augmentation, which in turn causes lots of 
> goobers in your urine (doc says the bowel still does what its supposed to 
> do).  But it's super nice to not have to lay down 4 times a day to use the 
> restroom, and basically pee wherever I want to!  
>  
> Have an amazing day!
>  
> Michelle
> 
> On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com mailto:wheelch...@aol.com 
> mailto:wheelch...@aol.com> wrote:
> 
> >  
> > Thanks for the update.  The bladder, over time, for those with indwelling 
> > caths, will/can shrink to the size of a walnut, compared to what it used to 
> > be.  When you consider the size of the cath, plus the balloon, inside a 
> > walnut.  there is not much room for urine to collect and it may pass 
> > quicker.
> > Best Wishes.
> >  
> > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL 
> > mailto:sbell...@cox.net> wrote:
> >  
> >  
> > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. 
> > That is what is causing spasms on and off and rejecting catheters on and 
> > off. Not lasting as long. They are going to change my meds to see if that 
> > helps. Botox is an option as well. 47 years of indwelling catheter use has 
> > taken a toll. Not much they can do but I am looking into it. There is an 
> > external catheter option called a pur wick for women of course but I have 
> > doubts about it. I am trying not to worry but geez, not great. A suprapubic 
> > may be an option, not a cure but may be easier for me and my caretakers to 
> > deal with this.  Hope you all doing ok, quad life is an ongoing challenge 
> > for sure. Have a great holiday season.Shirley If you want to see how I make 
> > my living check out my Etsy shop here. 
> > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
> > 
> 

Re: [QUAD-L] bladder update

[SHIRLEY BELL]

Thank you Michelle. I don't think I would be a candidate for this because I 
used a foley all these yrs but I will ask. Good luck to us all on this quad 
journey! 

> On 12/11/2023 9:52 PM EST Michelle Harkness  
> wrote:
>  
>  
> Hey Shirley!  I've been on this page forever and learned lots from y'all, but 
> I tend to keep kinda quiet.  Not sure what your situation is exactly, but 
> I've been a C5-6 quad for 30 years and I had always done intermittent 
> cathing, relying on someone else for help with it.  In February of this year, 
> I finally took the plunge and got a Mitrofinoff with bladder augmentation. I 
> had tried a suprapubic for about 6 months, but hated it and the multiple 
> never ending infections it caused, so I started looking more into the 
> Mitrofinoff then.  I can now do my own cathing almost all of the time, 
> through a stoma in my belly button that I use a male 16" catheter for.  The 
> bladder augmentation helped wonders, and I was pretty unfamiliar with what 
> that was, or what wonders it could do when I received it.  It helps absorb 
> the bladder spasms, gives you more capacity and my doc said it helps lessen 
> infections somehow (still trying to figure that out).  The only draw back is 
> they use your bowel for the augmentation, which in turn causes lots of 
> goobers in your urine (doc says the bowel still does what its supposed to 
> do).  But it's super nice to not have to lay down 4 times a day to use the 
> restroom, and basically pee wherever I want to!  
>  
> Have an amazing day!
>  
> Michelle
> 
> On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com mailto:wheelch...@aol.com 
> mailto:wheelch...@aol.com> wrote:
> 
> >  
> > Thanks for the update.  The bladder, over time, for those with indwelling 
> > caths, will/can shrink to the size of a walnut, compared to what it used to 
> > be.  When you consider the size of the cath, plus the balloon, inside a 
> > walnut.  there is not much room for urine to collect and it may pass 
> > quicker.
> > Best Wishes.
> >  
> > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL 
> > mailto:sbell...@cox.net> wrote:
> >  
> >  
> > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. 
> > That is what is causing spasms on and off and rejecting catheters on and 
> > off. Not lasting as long. They are going to change my meds to see if that 
> > helps. Botox is an option as well. 47 years of indwelling catheter use has 
> > taken a toll. Not much they can do but I am looking into it. There is an 
> > external catheter option called a pur wick for women of course but I have 
> > doubts about it. I am trying not to worry but geez, not great. A suprapubic 
> > may be an option, not a cure but may be easier for me and my caretakers to 
> > deal with this.  Hope you all doing ok, quad life is an ongoing challenge 
> > for sure. Have a great holiday season.Shirley If you want to see how I make 
> > my living check out my Etsy shop here. 
> > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
> > 
> 

Re: [QUAD-L] bladder update

[SHIRLEY BELL]

How can you have this  Mitrofinoff surgery after yrs of a folley? 

> On 12/12/2023 4:12 PM EST Michelle Harkness  
> wrote:
>  
>  
> Eric - I was TERRIFIED of the Mitrofinoff surgery for about 28 years.  I had 
> never had a surgery other than my spinal fusion, so I was not on board with 
> signing up for anything major!  I'm also on blood thinners because of blood 
> clots/pulmonary embolism and I'm overweight, so add those two layers of suck 
> to the mix as well.  About 2 months after the pandemic hit my gallbladder 
> decided it didn't like me, so I had to have emergency surgery to get that 
> taken out (in the hospital completely ALONE for 5 days).  I was scared, being 
> my first big surgery, but it gave me a bit of confidence that the unknown 
> wasn't as scary as previously thought.  I've also done childbirth as a quad, 
> without an epidural (not by choice, it just happened that way) so I maybe had 
> a bit of false confidence added in the mix?  My quad doc also said that I 
> wanted to have it when my body could better recover before I got too old, 
> considering I just keep getting older...  Either way, it was an approximate 4 
> week recovery with the Mitrofinoff, but my least favorite and worst part was 
> the emptying of the bowels the day before. A day of bed rest and a crazy 
> amount of poo to handle!  I did about 2 weeks of bed rest healing and another 
> 2 of light duty at home.  No driving for a month and no car rides for a 
> month.  My bowel bounced back really well from having the 10" cut out of it 
> for the augmentation, and my incision from belly button to top of pubic line 
> also healed much faster than I anticipated.  My only regret was not getting 
> it done sooner and I kicked my own butt for waiting so long!  Especially when 
> I have so much more freedom with it.  If interested, I would see which docs 
> are in your area.  I actually declined the first doc (who did my suprapubic) 
> as he was an ass and did the surgery a bit different.  My second doc I went 
> to was soo much better and even had experience watching Dr. Mitrofinoff 
> perform his surgery.  That doc knew his stuff and had an excellent procedure. 
>   I had a 3 hour surgery and was out of the hospital and home in 3 days.
>  
> I'm interested to know how the gentamicin works, as I still get way to many 
> UTI"S.  I flush my bladder every other night, just to help keep my new 
> goobers out and in the hopes of keeping infections lower.
> 
> On Tue, Dec 12, 2023 at 2:24 PM Eric Olson  mailto:whee...@wi.rr.com> wrote:
> 
> > I had my supra pubic done a couple decades ago and it certainly makes 
> > things easier for my care givers.  I still have problems with uti's.  I was 
> > thinking about the Mitrofinoff,but it is a no joke surgery.  I have started 
> > doing gentamicin bladder irrigations.  Gentamicin is an antibiotic.  It's 
> > not supposed to cause antibiotic resistance the way antibiotics taken 
> > systemically do.   I will let everyone know how that goes.  I may still 
> > have to go to the Mitrofinoff at some point, but that surgery scares me
> > 
> > On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL  > mailto:sbell...@cox.net> wrote:
> > 
> > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. 
> > > That is what is causing spasms on and off and rejecting catheters on and 
> > > off. Not lasting as long. They are going to change my meds to see if that 
> > > helps. Botox is an option as well. 47 years of indwelling catheter use 
> > > has taken a toll. Not much they can do but I am looking into it. There is 
> > > an external catheter option called a pur wick for women of course but I 
> > > have doubts about it. I am trying not to worry but geez, not great. A 
> > > suprapubic may be an option, not a cure but may be easier for me and my 
> > > caretakers to deal with this.  Hope you all doing ok, quad life is an 
> > > ongoing challenge for sure. Have a great holiday season.Shirley If you 
> > > want to see how I make my living check out my Etsy shop here. 
> > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
> > > 
> > 
> 

Re: [QUAD-L] bladder update

[Michelle Harkness]

Eric - I was TERRIFIED of the Mitrofinoff surgery for about 28 years.  I
had never had a surgery other than my spinal fusion, so I was not on board
with signing up for anything major!  I'm also on blood thinners because of
blood clots/pulmonary embolism and I'm overweight, so add those two layers
of suck to the mix as well.  About 2 months after the pandemic hit my
gallbladder decided it didn't like me, so I had to have emergency surgery
to get that taken out (in the hospital completely ALONE for 5 days).  I was
scared, being my first big surgery, but it gave me a bit of confidence that
the unknown wasn't as scary as previously thought.  I've also done
childbirth as a quad, without an epidural (not by choice, it just happened
that way) so I maybe had a bit of false confidence added in the mix?  My
quad doc also said that I wanted to have it when my body could better
recover before I got too old, considering I just keep getting older...
Either way, it was an approximate 4 week recovery with the Mitrofinoff, but
my least favorite and worst part was the emptying of the bowels the day
before. A day of bed rest and a crazy amount of poo to handle!  I did about
2 weeks of bed rest healing and another 2 of light duty at home.  No
driving for a month and no car rides for a month.  My bowel bounced back
really well from having the 10" cut out of it for the augmentation, and my
incision from belly button to top of pubic line also healed much faster
than I anticipated.  My only regret was not getting it done sooner and I
kicked my own butt for waiting so long!  Especially when I have so much
more freedom with it.  If interested, I would see which docs are in your
area.  I actually declined the first doc (who did my suprapubic) as he was
an ass and did the surgery a bit different.  My second doc I went to was
soo much better and even had experience watching Dr. Mitrofinoff perform
his surgery.  That doc knew his stuff and had an excellent procedure.   I
had a 3 hour surgery and was out of the hospital and home in 3 days.

I'm interested to know how the gentamicin works, as I still get way to many
UTI"S.  I flush my bladder every other night, just to help keep my new
goobers out and in the hopes of keeping infections lower.

On Tue, Dec 12, 2023 at 2:24 PM Eric Olson  wrote:

> I had my supra pubic done a couple decades ago and it certainly makes
> things easier for my care givers.  I still have problems with uti's.  I was
> thinking about the Mitrofinoff,but it is a no joke surgery.  I have started
> doing gentamicin bladder irrigations.  Gentamicin is an antibiotic.  It's
> not supposed to cause antibiotic resistance the way antibiotics taken
> systemically do.   I will let everyone know how that goes.  I may still
> have to go to the Mitrofinoff at some point, but that surgery scares me
>
> On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL  wrote:
>
>> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
>> That is what is causing spasms on and off and rejecting catheters on and
>> off. Not lasting as long. They are going to change my meds to see if that
>> helps. Botox is an option as well. 47 years of indwelling catheter use has
>> taken a toll. Not much they can do but I am looking into it. There is an
>> external catheter option called a pur wick for women of course but I have
>> doubts about it. I am trying not to worry but geez, not great. A suprapubic
>> may be an option, not a cure but may be easier for me and my caretakers to
>> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
>> for sure. Have a great holiday season.Shirley If you want to see how I make
>> my living check out my Etsy shop here.
>> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>>
>

Re: [QUAD-L] bladder update

[Eric Olson]

I had my supra pubic done a couple decades ago and it certainly makes
things easier for my care givers.  I still have problems with uti's.  I was
thinking about the Mitrofinoff,but it is a no joke surgery.  I have started
doing gentamicin bladder irrigations.  Gentamicin is an antibiotic.  It's
not supposed to cause antibiotic resistance the way antibiotics taken
systemically do.   I will let everyone know how that goes.  I may still
have to go to the Mitrofinoff at some point, but that surgery scares me

On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL  wrote:

> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
> That is what is causing spasms on and off and rejecting catheters on and
> off. Not lasting as long. They are going to change my meds to see if that
> helps. Botox is an option as well. 47 years of indwelling catheter use has
> taken a toll. Not much they can do but I am looking into it. There is an
> external catheter option called a pur wick for women of course but I have
> doubts about it. I am trying not to worry but geez, not great. A suprapubic
> may be an option, not a cure but may be easier for me and my caretakers to
> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
> for sure. Have a great holiday season.Shirley If you want to see how I make
> my living check out my Etsy shop here.
> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>

Re: [QUAD-L] bladder update

[Michelle Harkness]

Hey Shirley!  I've been on this page forever and learned lots from y'all,
but I tend to keep kinda quiet.  Not sure what your situation is exactly,
but I've been a C5-6 quad for 30 years and I had always done intermittent
cathing, relying on someone else for help with it.  In February of this
year, I finally took the plunge and got a Mitrofinoff with bladder
augmentation. I had tried a suprapubic for about 6 months, but hated it and
the multiple never ending infections it caused, so I started looking more
into the Mitrofinoff then.  I can now do my own cathing almost all of the
time, through a stoma in my belly button that I use a male 16" catheter
for.  The bladder augmentation helped wonders, and I was pretty unfamiliar
with what that was, or what wonders it could do when I received it.  It
helps absorb the bladder spasms, gives you more capacity and my doc said it
helps lessen infections somehow (still trying to figure that out).  The
only draw back is they use your bowel for the augmentation, which in turn
causes lots of goobers in your urine (doc says the bowel still does what
its supposed to do).  But it's super nice to not have to lay down 4 times a
day to use the restroom, and basically pee wherever I want to!

Have an amazing day!

Michelle

On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com 
wrote:

> Thanks for the update.  The bladder, over time, for those with indwelling
> caths, will/can shrink to the size of a walnut, compared to what it used to
> be.  When you consider the size of the cath, plus the balloon, inside a
> walnut.  there is not much room for urine to collect and it may pass
> quicker.
> Best Wishes.
>
> On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL <
> sbell...@cox.net> wrote:
>
>
> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
> That is what is causing spasms on and off and rejecting catheters on and
> off. Not lasting as long. They are going to change my meds to see if that
> helps. Botox is an option as well. 47 years of indwelling catheter use has
> taken a toll. Not much they can do but I am looking into it. There is an
> external catheter option called a pur wick for women of course but I have
> doubts about it. I am trying not to worry but geez, not great. A suprapubic
> may be an option, not a cure but may be easier for me and my caretakers to
> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
> for sure. Have a great holiday season.Shirley If you want to see how I make
> my living check out my Etsy shop here.
> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>

Re: [QUAD-L] bladder update

[wheelch...@aol.com]

 Thanks for the update.  The bladder, over time, for those with indwelling 
caths, will/can shrink to the size of a walnut, compared to what it used to be. 
 When you consider the size of the cath, plus the balloon, inside a walnut.  
there is not much room for urine to collect and it may pass quicker.Best Wishes.
On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL 
 wrote:  
 
Hi all, well I had my cystoscopy and all he found was a shrunken bladder. 
That is what is causing spasms on and off and rejecting catheters on and off. 
Not lasting as long. They are going to change my meds to see if that helps. 
Botox is an option as well. 47 years of indwelling catheter use has taken a 
toll. Not much they can do but I am looking into it. There is an external 
catheter option called a pur wick for women of course but I have doubts about 
it. I am trying not to worry but geez, not great. A suprapubic may be an 
option, not a cure but may be easier for me and my caretakers to deal with 
this.  Hope you all doing ok, quad life is an ongoing challenge for sure. Have 
a great holiday season.Shirley If you want to see how I make my living check 
out my Etsy shop here. 
https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav

Re: [QUAD-L] Ileostomy

[Gail Holmes]

I accompanied the quad for whom I worked for surgery on his syrinx at Craig Hospital near Denver about  10 years ago. Sadly he passed in 2020 unrelated to his surgery.His  symptoms were increasing pain and excessively low blood pressure but everyone is different. If at all possible I would go to Craig’s hospital  to be evaluated. You may have to be referred. I know that’s not an easy feat! There is a free phone line where a SCI nurse at Craig hospital  can answer questions or find the answers on all things related to SCI. You might need to call more than once to get the answers.If I recall correctly the surgeon said there was a high rate of shunt failure for syrinx  and that shunt surgery was considered old school but my memory is a little foggy.Don’t take my word 100% but check other resources. Maybe  there are better shunt surgery techniques now. This was 10 years ago. The neurosurgeon was Dr Scott Falci and his incredible nurse was Charlotte. She is the one who could tell you more about shunts and syrinx surgery. If you call have all your questions lined up. She is very busy and not easy to reach but is accessible or was back then. His surgery was in 2 stages. Gosh I can’t believe I’m forgetting the details.i was only with him for the first simpler surgery and I think this first surgery was to decompress the syrinx and the second surgery was  to put a graft in place. Craigs is a world class spinal cord and head injury hospital. There were folks there of meager means so maybe you don’t have to have great insurance which he fortunately did. I do recall Charlotte saying that even with the best of surgical outcomes a syrinx can return in as little as 3 years. His pain was  less as a result of the surgery and maybe blood pressure only slightly better.  In the end I wondered if the results were  worth those 2 surgeries  but he did say it  definitely  was.  try to get a good second opinion before ileostomy surgery.best of wishes to youGail Sent from my iPhoneOn Dec 8, 2023, at 1:03 PM, Danny Hearn  wrote:
Hi, Vali'm a c-6  level.and I have had a syrinx for years, it has caused me increased pain more each year but have no eating or bowel problems, we use magic bullet suppositories for bowel routines every 3 days. Hope things work out for you !   Dan H. 26 years post injury.--car accident.





On Friday, December 8, 2023 at 11:43:46 AM CST, Val Cleroux  wrote:



Hi everyone:I met with a neurosurgeon at St. Michael's Hospital in Toronto and he says that I have too much steel in my neck to be able to put a shunt.  I got 3 inches of steel down both sides holding my spine between C2-C7 straight.  They don't do steel surgeries anymore as that was 23 years ago.  I researched the syrinx and it says the first thing to deteriorate is my digestive system, and then after time, the other organs will be affected.  I'm down to eating only liquid foods, they still hurt but not as bad as chunky food.Thank you everyone for replying to me!Val Clerouxwww.whyped.ca  "Communication is the key to success"   






On Thursday, December 7, 2023 at 07:29:43 p.m. EST, Edward Tessier  wrote:





Wow, what a journey Dana




So glad you are still with us


From: Dana 
Sent: Wednesday, December 6, 2023 10:39 PM
To: Eric Olson 
Cc: Quad List ; Val Cleroux 
Subject: Re: [QUAD-L] Ileostomy
 



I had my first Ileo-conduit in 1986 from bladder cancer. Then In 2014 I kept having UTIs all the time. The kidney doctor didn’t know how to do the surgery that was needed to make another ileo-conduit. She wanted to put me on hospice. We started
 calling every kidney doctor and that was able to do the surgery. he got me on the table within two weeks. we had to have a long talk and explain to me 2.out 3 die during the surgery. So I was a blessed to survive. it took six months to get over the surgery.
 I was in the hospital three weeks. I continue to have UTIs and kidney stones. This allows you to get more bacteria causing kidney stones. I really liked the information I read on the 



On Wed, Oct 11, 2023 at 12:09 PM Eric Olson <whee...@wi.rr.com> wrote:


There was a person on the list that had a syrinx, but sadly, she passed away.  She had a shunt put in that let the fluid in the syrinx drain continuously into her stomach.  Since you're doing research anyway, perhaps do some research on a shunt. 
 Neither is a no joke surgery.  Are you sure your digestive issues are from the syrinx and not something more common like IBS?




On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux <vcler...@rogers.com> wrote:





Hi everyone:


I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx which is a cyst that fills 

Re: [QUAD-L] Ileostomy

[Danny Hearn]

 Hi, Vali'm a c-6  level.and I have had a syrinx for years, it has 
caused me increased pain more each year but have no eating or bowel problems, 
we use magic bullet suppositories for bowel routines every 3 days. Hope things 
work out for you !   Dan H. 26 years post injury.--car accident.

On Friday, December 8, 2023 at 11:43:46 AM CST, Val Cleroux 
 wrote:  
 
 Hi everyone:
I met with a neurosurgeon at St. Michael's Hospital in Toronto and he says that 
I have too much steel in my neck to be able to put a shunt.  I got 3 inches of 
steel down both sides holding my spine between C2-C7 straight.  They don't do 
steel surgeries anymore as that was 23 years ago.  
I researched the syrinx and it says the first thing to deteriorate is my 
digestive system, and then after time, the other organs will be affected.  I'm 
down to eating only liquid foods, they still hurt but not as bad as chunky food.
Thank you everyone for replying to me!
Val Clerouxwww.whyped.ca "Communication is the key to success"   

On Thursday, December 7, 2023 at 07:29:43 p.m. EST, Edward Tessier 
 wrote:  
 
 Wow, what a journey Dana
So glad you are still with usFrom: Dana 
Sent: Wednesday, December 6, 2023 10:39 PM
To: Eric Olson 
Cc: Quad List ; Val Cleroux 
Subject: Re: [QUAD-L] Ileostomy I had my first Ileo-conduit in 1986 from 
bladder cancer. Then In 2014 I kept having UTIs all the time. The kidney doctor 
didn’t know how to do the surgery that was needed to make another ileo-conduit. 
She wanted to put me on hospice. We started calling every kidney doctor and 
that was able to do the surgery. he got me on the table within two weeks. we 
had to have a long talk and explain to me 2.out 3 die during the surgery. So I 
was a blessed to survive. it took six months to get over the surgery. I was in 
the hospital three weeks. I continue to have UTIs and kidney stones. This 
allows you to get more bacteria causing kidney stones. I really liked the 
information I read on the 
On Wed, Oct 11, 2023 at 12:09 PM Eric Olson  wrote:

There was a person on the list that had a syrinx, but sadly, she passed away.  
She had a shunt put in that let the fluid in the syrinx drain continuously into 
her stomach.  Since you're doing research anyway, perhaps do some research on a 
shunt.  Neither is a no joke surgery.  Are you sure your digestive issues are 
from the syrinx and not something more common like IBS?

On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux  wrote:

Hi everyone:
I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx which 
is a cyst that fills up with cerebral fluid and stretches down the spine. This 
cyst affects how the messages are sent from the brain to the organs in order to 
make them work properly. So far it has affected my digestive system and I am 
very limited as to what I can eat.
My surgeon is suggesting an ileostomy and I am now researching to see if this 
would be beneficial or not? Is there anyone out there that has an ileostomy 
that I could speak with?
Thanks in advance for anyone that can help me with information so that I can 
make my decision which a yes of a no?
Val Clerouxwww.whyped.ca"Communication is the key to success" 

Re: [QUAD-L] Ileostomy

[Val Cleroux]

Hi everyone:
I met with a neurosurgeon at St. Michael's Hospital in Toronto and he says that 
I have too much steel in my neck to be able to put a shunt.  I got 3 inches of 
steel down both sides holding my spine between C2-C7 straight.  They don't do 
steel surgeries anymore as that was 23 years ago.  
I researched the syrinx and it says the first thing to deteriorate is my 
digestive system, and then after time, the other organs will be affected.  I'm 
down to eating only liquid foods, they still hurt but not as bad as chunky food.
Thank you everyone for replying to me!
Val Clerouxwww.whyped.ca "Communication is the key to success"   

On Thursday, December 7, 2023 at 07:29:43 p.m. EST, Edward Tessier 
 wrote:  
 
 Wow, what a journey Dana
So glad you are still with usFrom: Dana 
Sent: Wednesday, December 6, 2023 10:39 PM
To: Eric Olson 
Cc: Quad List ; Val Cleroux 
Subject: Re: [QUAD-L] Ileostomy I had my first Ileo-conduit in 1986 from 
bladder cancer. Then In 2014 I kept having UTIs all the time. The kidney doctor 
didn’t know how to do the surgery that was needed to make another ileo-conduit. 
She wanted to put me on hospice. We started calling every kidney doctor and 
that was able to do the surgery. he got me on the table within two weeks. we 
had to have a long talk and explain to me 2.out 3 die during the surgery. So I 
was a blessed to survive. it took six months to get over the surgery. I was in 
the hospital three weeks. I continue to have UTIs and kidney stones. This 
allows you to get more bacteria causing kidney stones. I really liked the 
information I read on the 
On Wed, Oct 11, 2023 at 12:09 PM Eric Olson  wrote:

There was a person on the list that had a syrinx, but sadly, she passed away.  
She had a shunt put in that let the fluid in the syrinx drain continuously into 
her stomach.  Since you're doing research anyway, perhaps do some research on a 
shunt.  Neither is a no joke surgery.  Are you sure your digestive issues are 
from the syrinx and not something more common like IBS?

On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux  wrote:

Hi everyone:
I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx which 
is a cyst that fills up with cerebral fluid and stretches down the spine. This 
cyst affects how the messages are sent from the brain to the organs in order to 
make them work properly. So far it has affected my digestive system and I am 
very limited as to what I can eat.
My surgeon is suggesting an ileostomy and I am now researching to see if this 
would be beneficial or not? Is there anyone out there that has an ileostomy 
that I could speak with?
Thanks in advance for anyone that can help me with information so that I can 
make my decision which a yes of a no?
Val Clerouxwww.whyped.ca"Communication is the key to success" 

  

Re: [QUAD-L] Ileostomy

[Edward Tessier]

Wow, what a journey Dana

So glad you are still with us

From: Dana 
Sent: Wednesday, December 6, 2023 10:39 PM
To: Eric Olson 
Cc: Quad List ; Val Cleroux 
Subject: Re: [QUAD-L] Ileostomy

I had my first Ileo-conduit in 1986 from bladder cancer. Then In 2014 I kept 
having UTIs all the time. The kidney doctor didn’t know how to do the surgery 
that was needed to make another ileo-conduit. She wanted to put me on hospice. 
We started calling every kidney doctor and that was able to do the surgery. he 
got me on the table within two weeks. we had to have a long talk and explain to 
me 2.out 3 die during the surgery. So I was a blessed to survive. it took six 
months to get over the surgery. I was in the hospital three weeks. I continue 
to have UTIs and kidney stones. This allows you to get more bacteria causing 
kidney stones. I really liked the information I read on the

On Wed, Oct 11, 2023 at 12:09 PM Eric Olson 
mailto:whee...@wi.rr.com>> wrote:
There was a person on the list that had a syrinx, but sadly, she passed away.  
She had a shunt put in that let the fluid in the syrinx drain continuously into 
her stomach.  Since you're doing research anyway, perhaps do some research on a 
shunt.  Neither is a no joke surgery.  Are you sure your digestive issues are 
from the syrinx and not something more common like IBS?

On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux 
mailto:vcler...@rogers.com>> wrote:
Hi everyone:

I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx which 
is a cyst that fills up with cerebral fluid and stretches down the spine. This 
cyst affects how the messages are sent from the brain to the organs in order to 
make them work properly. So far it has affected my digestive system and I am 
very limited as to what I can eat.

My surgeon is suggesting an ileostomy and I am now researching to see if this 
would be beneficial or not? Is there anyone out there that has an ileostomy 
that I could speak with?

Thanks in advance for anyone that can help me with information so that I can 
make my decision which a yes of a no?

Val Cleroux
www.whyped.ca<http://www.whyped.ca>
"Communication is the key to success"

Re: [QUAD-L] Ileostomy

[Dana]

I had my first Ileo-conduit in 1986 from bladder cancer. Then In 2014 I
kept having UTIs all the time. The kidney doctor didn’t know how to do the
surgery that was needed to make another ileo-conduit. She wanted to put me
on hospice. We started calling every kidney doctor and that was able to do
the surgery. he got me on the table within two weeks. we had to have a long
talk and explain to me 2.out 3 die during the surgery. So I was a blessed
to survive. it took six months to get over the surgery. I was in the
hospital three weeks. I continue to have UTIs and kidney stones. This
allows you to get more bacteria causing kidney stones. I really liked the
information I read on the

On Wed, Oct 11, 2023 at 12:09 PM Eric Olson  wrote:

> There was a person on the list that had a syrinx, but sadly, she passed
> away.  She had a shunt put in that let the fluid in the syrinx drain
> continuously into her stomach.  Since you're doing research anyway, perhaps
> do some research on a shunt.  Neither is a no joke surgery.  Are you sure
> your digestive issues are from the syrinx and not something more common
> like IBS?
>
> On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux  wrote:
>
>> Hi everyone:
>>
>> I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx
>> which is a cyst that fills up with cerebral fluid and stretches down the
>> spine. This cyst affects how the messages are sent from the brain to the
>> organs in order to make them work properly. So far it has affected my
>> digestive system and I am very limited as to what I can eat.
>>
>> My surgeon is suggesting an ileostomy and I am now researching to see if
>> this would be beneficial or not? Is there anyone out there that has an
>> ileostomy that I could speak with?
>>
>> Thanks in advance for anyone that can help me with information so that I
>> can make my decision which a yes of a no?
>>
>> Val Cleroux
>> www.whyped.ca
>> "Communication is the key to success"
>>
>>
>

Re: [QUAD-L] Ileostomy

[Edward Tessier]

Sorry, I just saw this email from months ago. Have you made a decision on what 
to do?

My late best friend had her ileostomy after years of incontinence, occasional 
impactions,  and discomfort with every bowel movement. She hated the idea of 
the colostomy bag, so she resisted her doctor's advice for years.

When she finally just had to have the procedure, she was really astonished. The 
care of the bag was an annoyance, and she was very insecure about its impact on 
her sex life (fortunately, on this latter issue, her FWB was very accepting of 
it),  But otherwise, it was such a relief she wished she had done it years 
earlier.  She had much less pain, much less disruption, and regained all of 
those hours she lost to bowel care.

Until I found the peristeen bowel irrigation system, my next option was going 
to be an ileostomy. My friend's experience greatly reduced my resistance to the 
procedure.  if that's what's needed someday, I've made my peace with it.

 Ed




From: Val Cleroux 
Sent: Monday, October 9, 2023 11:08 AM
To: Quad List 
Subject: [QUAD-L] Ileostomy

Hi everyone:

I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx which 
is a cyst that fills up with cerebral fluid and stretches down the spine. This 
cyst affects how the messages are sent from the brain to the organs in order to 
make them work properly. So far it has affected my digestive system and I am 
very limited as to what I can eat.

My surgeon is suggesting an ileostomy and I am now researching to see if this 
would be beneficial or not? Is there anyone out there that has an ileostomy 
that I could speak with?

Thanks in advance for anyone that can help me with information so that I can 
make my decision which a yes of a no?

Val Cleroux
www.whyped.ca
"Communication is the key to success"

Re: [QUAD-L] Prolia to treat osteoporosis

[toran spencer]

Hi

Can anybody give me some suggestion on what I can do for my muscles I don’t 
take baclofen or Lyrica because of the side effects. However, I’m having so 
much muscle tension and aching pain. I don’t know what to do. Do anybody have 
any suggestions on any natural supplements or anything?

Get Outlook for iOS<https://aka.ms/o0ukef>

From: Ben Mattlin 
Sent: Sunday, December 3, 2023 1:42:27 PM
To: 'Paul Jacobson' ; 'quad-list' 
Subject: RE: [QUAD-L] Prolia to treat osteoporosis


Yup. I've been on it for several years now. One shot every six months. Other 
quads had warned me about bad side effects, but I've never experienced any. My 
latest bone-density scans don't show any improvement, but my osteoporosis has 
not gotten worse, either. My doctor says that's a win.



From: Paul Jacobson 
Sent: Sunday, December 3, 2023 10:28 AM
To: quad-list 
Subject: [QUAD-L] Prolia to treat osteoporosis



Hi,



Has anyone ever tried Prolia or anything similar to treat osteoporosis?

What were your results and concerns.



Thanks,

Paul  c5/6

RE: [QUAD-L] Prolia to treat osteoporosis

[Ben Mattlin]

Yup. I've been on it for several years now. One shot every six months. Other
quads had warned me about bad side effects, but I've never experienced any.
My latest bone-density scans don't show any improvement, but my osteoporosis
has not gotten worse, either. My doctor says that's a win.

 

From: Paul Jacobson  
Sent: Sunday, December 3, 2023 10:28 AM
To: quad-list 
Subject: [QUAD-L] Prolia to treat osteoporosis

 

Hi,

 

Has anyone ever tried Prolia or anything similar to treat osteoporosis? 

What were your results and concerns.

 

Thanks, 

Paul  c5/6

Re: [QUAD-L] PLAN F PLANS

[SHIRLEY BELL]

never heard of?

> On 11/30/2023 3:11 AM EST Dana  wrote:
>  
>  
> What is plan F, As I have never heard of before. Thank you Paul
> 
> On Wed, Nov 29, 2023 at 5:25 PM Paul Jacobson  mailto:pjacob...@san.rr.com> wrote:
> 
> > 
> > Hi, it is that time of the year where I need to renew Plan F.
> > 
> > Does anyone know where I can find simple cost comparisons?
> > 
> >  
> > 
> > Thank you,
> > 
> >  
> > 
> > Paul
> > 
> > C5/6  Injured 11/05/03
> > 
> >  
> > 
> 

Re: [QUAD-L] PLAN F PLANS

[Dana]

What is plan F, As I have never heard of before. Thank you Paul

On Wed, Nov 29, 2023 at 5:25 PM Paul Jacobson  wrote:

> Hi, it is that time of the year where I need to renew Plan F.
>
> Does anyone know where I can find simple cost comparisons?
>
>
>
> Thank you,
>
>
>
> Paul
>
> C5/6  Injured 11/05/03
>
>
>

Re: [QUAD-L] indwelling urinary catheter problems

[Don Price]

 Bladder Management System, West Islip, NY

| 
| 
| 
|  |  |

 |

 |
| 
|  | 
Bladder Management System, West Islip, NY

Uro Cycler Inc. in West Islip, NY is proud to offer an innovative device for 
bladder management — the Uro Cycler...
 |

 |

 |

   
Thanks for sharing this.
On Sunday, November 5, 2023 at 01:00:36 PM MST, wheelch...@aol.com 
 wrote:  
 
  Not sure if this going to help or confuse anyone but here it goes. More than 
a decade ago, I met a Dr Tom at a conference in Atlanta.  I believe that he was 
from Florida, at the time. Back then he was representing a product called 
UROCYCLER.  It was not an indwelling cath, but an accessory for those with 
indwelling catheters.  The theory behind its design and function seemed like it 
might be good for some, but not everyone.  It is a ceramic device that 
connected between the indwelling catheter and collection bag.  It allows urine 
to collect in the bladder until pressure builds up and then the magnets 
separate, allowing the urine to leave the bladder... under turbulence, to empty 
the bladder.Has anyone heard of this system?  You can Google, UROCYCLE and see 
for yourselves.Comments AppreciatedBest WishesOn Sunday, November 5, 2023 
at 08:47:21 AM CST, Nichole Rohling  wrote:  
 
 
I do 30 ml twice in the evening when I get in bed

and 1 time in the morning before I get up

  

  

  

From: toran spencer [mailto:toran.spen...@outlook.com] 
Sent: Saturday, November 4, 2023 4:31 PM
To: Nichole Rohling; 'Danny Hearn'; quad-list@eskimo.com
Subject: Re: [QUAD-L] indwelling urinary catheter problems

  

  

How often should you flush your tube often? 

  

Get Outlook for iOS

From: Nichole Rohling 
Sent: Saturday, November 4, 2023 1:02:48 PM
To: 'Danny Hearn' ; quad-list@eskimo.com 

Subject: RE: [QUAD-L] indwelling urinary catheter problems 

 

I just use sterile water. Work fine for me.

Nicki

 

From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Saturday, November 4, 2023 2:07 PM
To: Eric Olson; SHIRLEY BELL; Don Price; Jeffrey Gaede
Cc: quad-list
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

I have a supra-pubic also..like some of you I have persistant bacteria that 
I live with also, when I flush we just use sterile water, I have read that some 
use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.

 

On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote: 

 

 

I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.

 

I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All.

Jeff

 

 

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote: 

 

 

Shirley,

 

I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.

 

I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 

 

I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 

 

The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance

 

I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a 

Re: [QUAD-L] indwelling urinary catheter problems

[Don Price]

 Regarding my post about colloidal silver bladder flush.
The colloidal silver comes in a suspension of distilled water. How much of it 
you use will vary from person to person, depending on your bladder capacity. I 
know my bladder holds about 100cc comfortably for 20 minutes, but yours may 
hold more or less. 
Push the liquid into your bladder using syringe (just the plunger, no needle), 
clamp the catheter, retain for at least 20 minutes, if possible. Be sure to 
empty your bladder immediately if you start getting A.D.
Again, i think it's wise to consult your urologist first. Also do some 
Googling. I learned that colloidal silver was what they used to treat 
infections before antibiotics were discovered. It's also an antifungal.
No, I don't work for a silver company. I sound like i'm selling something. 
Haha. It's just a natural remedy that has greatly reduced (not eliminated) my 
bladder bacteria. I wanted to share the info.
Here's a link to one example of the product:
https://www.google.com/search?sca_esv=579920261=1C1GCEA_enUS1045US1045=AM9HkKnOUIJ3j2sYyY4AZuyYJBWVZg4CjQ:1699305156534=colloidal+silver=shop=lnms=X=2ahUKEwj1lOGBpbCCAxWqHkQIHZD-B0AQ0pQJegQIDRAB=1280=855=1#spd=11803390539720863859

On Saturday, November 4, 2023 at 09:41:58 AM MST, Eric Olson 
 wrote:  
 
 How much water and how much silver? 

On Fri, Nov 3, 2023 at 3:13 PM Don Price  wrote:

 Shirley,
I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.
I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 
I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 
The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance
I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.
You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first. 
If anyone has further questions you can email me directly.donpric...@yahoo.com
Best wishes,Don.


On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote:  
 
   Thanks everyone, My Dr does want a sample when I change the catheter again. 
I just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south.  
  On 10/25/2023 1:30 PM EDT Eric Olson  wrote:        
just happened to run across this article.  Looks like you have a few of the 
signs of an infection       
https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
   
   On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote:  
Hi all, anyone have an indwelling Catheter for 40 or so years and had 
severe issues on and off with spasms and incontinence resulting in changing 
even new catheters until one works? It's hard to explain but not good. I take 
the max on spasm pills. Can't get in to see Dr for a few weeks, wanted to do 
research before. Would a supra pubic help with this? Any help would be 
appreciated. Thanks, Shirley   
  
   
  

RE: [QUAD-L] indwelling urinary catheter problems

[Nichole Rohling]

Great to see you post! I’ll have to check it out!

Nicki

 

 

From: wheelch...@aol.com [mailto:wheelch...@aol.com] 
Sent: Sunday, November 5, 2023 2:00 PM
To: 'toran spencer'; quad-list@eskimo.com; Nichole Rohling
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

Not sure if this going to help or confuse anyone but here it goes. More than a 
decade ago, I met a Dr Tom at a conference in Atlanta.  I believe that he was 
from Florida, at the time. Back then he was representing a product called 
UROCYCLER.  It was not an indwelling cath, but an accessory for those with 
indwelling catheters.  The theory behind its design and function seemed like it 
might be good for some, but not everyone.  It is a ceramic device that 
connected between the indwelling catheter and collection bag.  It allows urine 
to collect in the bladder until pressure builds up and then the magnets 
separate, allowing the urine to leave the bladder... under turbulence, to empty 
the bladder.

Has anyone heard of this system?  You can Google, UROCYCLE and see for 
yourselves.

Comments Appreciated

Best Wishes

On Sunday, November 5, 2023 at 08:47:21 AM CST, Nichole Rohling 
 wrote: 

 

 

I do 30 ml twice in the evening when I get in bed

and 1 time in the morning before I get up

 

 

 

From: toran spencer [mailto:toran.spen...@outlook.com] 
Sent: Saturday, November 4, 2023 4:31 PM
To: Nichole Rohling; 'Danny Hearn'; quad-list@eskimo.com
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

 

How often should you flush your tube often? 

 

Get Outlook for iOS <https://aka.ms/o0ukef> 

  _  

From: Nichole Rohling 
Sent: Saturday, November 4, 2023 1:02:48 PM
To: 'Danny Hearn' ; quad-list@eskimo.com 

Subject: RE: [QUAD-L] indwelling urinary catheter problems 

 

I just use sterile water. Work fine for me.

Nicki

 

From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Saturday, November 4, 2023 2:07 PM
To: Eric Olson; SHIRLEY BELL; Don Price; Jeffrey Gaede
Cc: quad-list
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

I have a supra-pubic also..like some of you I have persistant bacteria that 
I live with also, when I flush we just use sterile water, I have read that some 
use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.

 

On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote: 

 

 

I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.

 

I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All.

Jeff

 

 

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote: 

 

 

Shirley,

 

I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.

 

I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 

 

I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 

 

The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance

 

I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other option

Re: [QUAD-L] indwelling urinary catheter problems

[wheelch...@aol.com]

 Not sure if this going to help or confuse anyone but here it goes. More than a 
decade ago, I met a Dr Tom at a conference in Atlanta.  I believe that he was 
from Florida, at the time. Back then he was representing a product called 
UROCYCLER.  It was not an indwelling cath, but an accessory for those with 
indwelling catheters.  The theory behind its design and function seemed like it 
might be good for some, but not everyone.  It is a ceramic device that 
connected between the indwelling catheter and collection bag.  It allows urine 
to collect in the bladder until pressure builds up and then the magnets 
separate, allowing the urine to leave the bladder... under turbulence, to empty 
the bladder.Has anyone heard of this system?  You can Google, UROCYCLE and see 
for yourselves.Comments AppreciatedBest WishesOn Sunday, November 5, 2023 
at 08:47:21 AM CST, Nichole Rohling  wrote:  
 
 
I do 30 ml twice in the evening when I get in bed

and 1 time in the morning before I get up

  

  

  

From: toran spencer [mailto:toran.spen...@outlook.com] 
Sent: Saturday, November 4, 2023 4:31 PM
To: Nichole Rohling; 'Danny Hearn'; quad-list@eskimo.com
Subject: Re: [QUAD-L] indwelling urinary catheter problems

  

  

How often should you flush your tube often? 

  

Get Outlook for iOS

From: Nichole Rohling 
Sent: Saturday, November 4, 2023 1:02:48 PM
To: 'Danny Hearn' ; quad-list@eskimo.com 

Subject: RE: [QUAD-L] indwelling urinary catheter problems 

 

I just use sterile water. Work fine for me.

Nicki

 

From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Saturday, November 4, 2023 2:07 PM
To: Eric Olson; SHIRLEY BELL; Don Price; Jeffrey Gaede
Cc: quad-list
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

I have a supra-pubic also..like some of you I have persistant bacteria that 
I live with also, when I flush we just use sterile water, I have read that some 
use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.

 

On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote: 

 

 

I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.

 

I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All.

Jeff

 

 

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote: 

 

 

Shirley,

 

I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.

 

I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 

 

I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 

 

The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance

 

I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.

 

You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your ur

RE: [QUAD-L] indwelling urinary catheter problems

[Nichole Rohling]

I do 30 ml twice in the evening when I get in bed

and 1 time in the morning before I get up

 

 

 

From: toran spencer [mailto:toran.spen...@outlook.com] 
Sent: Saturday, November 4, 2023 4:31 PM
To: Nichole Rohling; 'Danny Hearn'; quad-list@eskimo.com
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

 

How often should you flush your tube often? 

 

Get Outlook for iOS <https://aka.ms/o0ukef> 

  _  

From: Nichole Rohling 
Sent: Saturday, November 4, 2023 1:02:48 PM
To: 'Danny Hearn' ; quad-list@eskimo.com 

Subject: RE: [QUAD-L] indwelling urinary catheter problems 

 

I just use sterile water. Work fine for me.

Nicki

 

From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Saturday, November 4, 2023 2:07 PM
To: Eric Olson; SHIRLEY BELL; Don Price; Jeffrey Gaede
Cc: quad-list
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

I have a supra-pubic also..like some of you I have persistant bacteria that 
I live with also, when I flush we just use sterile water, I have read that some 
use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.

 

On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote: 

 

 

I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.

 

I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All.

Jeff

 

 

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote: 

 

 

Shirley,

 

I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.

 

I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 

 

I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 

 

The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance

 

I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.

 

You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first. 

 

If anyone has further questions you can email me directly.

donpric...@yahoo.com

 

Best wishes,

Don.

 

 

 

On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote: 

 

 

Thanks everyone, My Dr does want a sample when I change the catheter again. I 
just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south. 

On 10/25/2023 1:30 PM EDT Eric Olson  wrote: 

  

  

just happened to run across this article.  Looks like you have a few of the 
signs of an infection 

  

https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
 

 

On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote: 

Hi all, anyone have an indwelling Catheter for 40 or so years and had severe 
issues on 

Re: [QUAD-L] indwelling urinary catheter problems

[toran spencer]

How often should you flush your tube often?

Get Outlook for iOS<https://aka.ms/o0ukef>

From: Nichole Rohling 
Sent: Saturday, November 4, 2023 1:02:48 PM
To: 'Danny Hearn' ; quad-list@eskimo.com 

Subject: RE: [QUAD-L] indwelling urinary catheter problems


I just use sterile water. Work fine for me.

Nicki



From: Danny Hearn [mailto:ddh...@sbcglobal.net]
Sent: Saturday, November 4, 2023 2:07 PM
To: Eric Olson; SHIRLEY BELL; Don Price; Jeffrey Gaede
Cc: quad-list
Subject: Re: [QUAD-L] indwelling urinary catheter problems



I have a supra-pubic also..like some of you I have persistant bacteria that 
I live with also, when I flush we just use sterile water, I have read that some 
use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.



On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote:





I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.



I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All.

Jeff





On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote:





Shirley,



I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.



I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort.



I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these.



The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance



I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.



You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first.



If anyone has further questions you can email me directly.

donpric...@yahoo.com



Best wishes,

Don.







On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote:





Thanks everyone, My Dr does want a sample when I change the catheter again. I 
just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south.

On 10/25/2023 1:30 PM EDT Eric Olson  wrote:





just happened to run across this article.  Looks like you have a few of the 
signs of an infection



https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection



On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL 
mailto:sbell...@cox.net>> wrote:

Hi all, anyone have an indwelling Catheter for 40 or so years and had severe 
issues on and off with spasms and incontinence resulting in changing even new 
catheters until one works? It's hard to explain but not good. I take the max on 
spasm pills. Can't get in to see Dr for a few weeks, wanted to do research 
before. Would a supra pubic help with this? Any help would be appreciated. 
Thanks, Shirley

RE: [QUAD-L] indwelling urinary catheter problems

[Nichole Rohling]

I just use sterile water. Work fine for me.

Nicki

 

From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Saturday, November 4, 2023 2:07 PM
To: Eric Olson; SHIRLEY BELL; Don Price; Jeffrey Gaede
Cc: quad-list
Subject: Re: [QUAD-L] indwelling urinary catheter problems

 

I have a supra-pubic also..like some of you I have persistant bacteria that 
I live with also, when I flush we just use sterile water, I have read that some 
use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.

 

On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote: 

 

 

I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.

 

I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All.

Jeff

 

 

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote: 

 

 

Shirley,

 

I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.

 

I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 

 

I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 

 

The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance

 

I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.

 

You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first. 

 

If anyone has further questions you can email me directly.

donpric...@yahoo.com

 

Best wishes,

Don.

 

 

 

On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote: 

 

 

Thanks everyone, My Dr does want a sample when I change the catheter again. I 
just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south. 

On 10/25/2023 1:30 PM EDT Eric Olson  wrote: 

  

  

just happened to run across this article.  Looks like you have a few of the 
signs of an infection 

  

https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
 

 

On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote: 

Hi all, anyone have an indwelling Catheter for 40 or so years and had severe 
issues on and off with spasms and incontinence resulting in changing even new 
catheters until one works? It's hard to explain but not good. I take the max on 
spasm pills. Can't get in to see Dr for a few weeks, wanted to do research 
before. Would a supra pubic help with this? Any help would be appreciated. 
Thanks, Shirley 

Re: [QUAD-L] indwelling urinary catheter problems

[Danny Hearn]

 I have a supra-pubic also..like some of you I have persistant bacteria 
that I live with also, when I flush we just use sterile water, I have read that 
some use saline or a mix of water and 0.25 acetic acid, I have not tried the 
colloidal silver as a flush eitherwhat type flush do most of you use if not 
doing the silver method???  Thanks Dan H>***  26 years post.
On Saturday, November 4, 2023 at 12:03:13 AM CDT, Jeffrey Gaede 
 wrote:  
 
  I feel for you, Shirley. I'm right there with you, Don. I really don't have 
an issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.
I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All. Jeff

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote:  
 
  Shirley,
I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.
I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 
I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 
The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance
I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.
You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first. 
If anyone has further questions you can email me directly.donpric...@yahoo.com
Best wishes,Don.


On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote:  
 
   Thanks everyone, My Dr does want a sample when I change the catheter again. 
I just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south.  
  On 10/25/2023 1:30 PM EDT Eric Olson  wrote:        
just happened to run across this article.  Looks like you have a few of the 
signs of an infection       
https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
   
   On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote:  
Hi all, anyone have an indwelling Catheter for 40 or so years and had 
severe issues on and off with spasms and incontinence resulting in changing 
even new catheters until one works? It's hard to explain but not good. I take 
the max on spasm pills. Can't get in to see Dr for a few weeks, wanted to do 
research before. Would a supra pubic help with this? Any help would be 
appreciated. Thanks, Shirley   
  
   

Re: [QUAD-L] indwelling urinary catheter problems

[Eric Olson]

How much water and how much silver?

On Fri, Nov 3, 2023 at 3:13 PM Don Price  wrote:

> Shirley,
>
> I hope you get everything figured out and working properly again. UTIs and
> incontinence are such a life-suck. They're just about the hardest part of
> life with SCI.
>
> I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs.
> I've developed a resistant bladder bug that is probably with me all the
> time. As long as i drink enough fluids I'm not symptomatic of infection,
> even though if i did a urinalysis i'm sure it would come back positive. I
> try not to use antibiotics except as a last resort.
>
> I know a bunch of quads and just about every one has some favorite method
> of treating a UTI without antibiotics. Things I've heard include: cranberry
> pills, d-mannose, large doses vitamin C, probiotics, lime oil, oil of
> oregano and bladder flushes with various solutions. I'm not a doctor, so
> obviously be careful trying any of these.
>
> The thing that has worked best for me (I have a suprapubic catheter) is
> irrigating with a solution of colloidal silver. Silver is a natural
> antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually
> cloudy/smelly urine) I use a syringe to push the colloidal silver water up
> my catheter into my bladder, then clamp off the catheter for at least 20
> minutes. i do this twice a day (once morning, once bedtime) for about 3
> days at it makes a huge difference. I wouldn't consider it a miracle cure,
> but it seems to take out enough bad bacteria that my symptoms clear up for
> a while with no side effects or possibility of resistance
>
> I will be the first to admit that my results are purely anecdotal, and i
> was highly skeptical of this silver stuff when another quad friend of mine
> told me about it. I gave it a try because i was running out of other
> options, and it ended up working for me. I don't have any studies to
> share--definitely do your own research.
>
> You can purchase colloidal silver online. Half gallon of it for about $40.
> I use enough each flush to fill my bladder but not cause A.D. Everyone's
> bladder is different, so i recommend discussing with your urologist first.
>
> If anyone has further questions you can email me directly.
> donpric...@yahoo.com
>
> Best wishes,
> Don.
>
>
>
> On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL <
> sbell...@cox.net> wrote:
>
>
> Thanks everyone, My Dr does want a sample when I change the catheter
> again. I just did and this time things are ok, right now. don't want to try
> to change again as that's when it goes south.
>
> On 10/25/2023 1:30 PM EDT Eric Olson  wrote:
>
>
> just happened to run across this article.  Looks like you have a few of
> the signs of an infection
>
>
> https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
>
> On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote:
>
> Hi all, anyone have an indwelling Catheter for 40 or so years and had
> severe issues on and off with spasms and incontinence resulting in changing
> even new catheters until one works? It's hard to explain but not good. I
> take the max on spasm pills. Can't get in to see Dr for a few weeks, wanted
> to do research before. Would a supra pubic help with this? Any help would
> be appreciated. Thanks, Shirley
>
>

Re: [QUAD-L] indwelling urinary catheter problems

[Jeffrey Gaede]

 I feel for you, Shirley. I'm right there with you, Don. I really don't have an 
issue with incontinence but I've had my share of UTIs (indwelling catheter). 
I'm 44 years post (C3-4). I've also been told that I have a "resistant bug" 
that's not an issue for the most part. I'm told it's just there. The condition 
has an actual name but I can't recall it at the moment.
I love the list of UTI-solution ideas, Don. Thanks for providing them. Never 
heard of the colloidal silver flush. I'll have to do some research and speak 
with my doctor about that one. Good luck, Shirley. Good luck, All. Jeff

On Friday, November 3, 2023 at 01:15:06 PM PDT, Don Price 
 wrote:  
 
  Shirley,
I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.
I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 
I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 
The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance
I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.
You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first. 
If anyone has further questions you can email me directly.donpric...@yahoo.com
Best wishes,Don.


On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote:  
 
   Thanks everyone, My Dr does want a sample when I change the catheter again. 
I just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south.  
  On 10/25/2023 1:30 PM EDT Eric Olson  wrote:        
just happened to run across this article.  Looks like you have a few of the 
signs of an infection       
https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
   
   On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote:  
Hi all, anyone have an indwelling Catheter for 40 or so years and had 
severe issues on and off with spasms and incontinence resulting in changing 
even new catheters until one works? It's hard to explain but not good. I take 
the max on spasm pills. Can't get in to see Dr for a few weeks, wanted to do 
research before. Would a supra pubic help with this? Any help would be 
appreciated. Thanks, Shirley   
  
 

Re: [QUAD-L] indwelling urinary catheter problems

[Don Price]

 Shirley,
I hope you get everything figured out and working properly again. UTIs and 
incontinence are such a life-suck. They're just about the hardest part of life 
with SCI.
I'm 41 years post-injury (C5-6, complete) and i've had my share of UTIs. I've 
developed a resistant bladder bug that is probably with me all the time. As 
long as i drink enough fluids I'm not symptomatic of infection, even though if 
i did a urinalysis i'm sure it would come back positive. I try not to use 
antibiotics except as a last resort. 
I know a bunch of quads and just about every one has some favorite method of 
treating a UTI without antibiotics. Things I've heard include: cranberry pills, 
d-mannose, large doses vitamin C, probiotics, lime oil, oil of oregano and 
bladder flushes with various solutions. I'm not a doctor, so obviously be 
careful trying any of these. 
The thing that has worked best for me (I have a suprapubic catheter) is 
irrigating with a solution of colloidal silver. Silver is a natural 
antiseptic/antifungal, so when i feel i'm getting a UTI symptom (usually 
cloudy/smelly urine) I use a syringe to push the colloidal silver water up my 
catheter into my bladder, then clamp off the catheter for at least 20 minutes. 
i do this twice a day (once morning, once bedtime) for about 3 days at it makes 
a huge difference. I wouldn't consider it a miracle cure, but it seems to take 
out enough bad bacteria that my symptoms clear up for a while with no side 
effects or possibility of resistance
I will be the first to admit that my results are purely anecdotal, and i was 
highly skeptical of this silver stuff when another quad friend of mine told me 
about it. I gave it a try because i was running out of other options, and it 
ended up working for me. I don't have any studies to share--definitely do your 
own research.
You can purchase colloidal silver online. Half gallon of it for about $40. I 
use enough each flush to fill my bladder but not cause A.D. Everyone's bladder 
is different, so i recommend discussing with your urologist first. 
If anyone has further questions you can email me directly.donpric...@yahoo.com
Best wishes,Don.


On Wednesday, October 25, 2023 at 11:29:30 AM MST, SHIRLEY BELL 
 wrote:  
 
   Thanks everyone, My Dr does want a sample when I change the catheter again. 
I just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south.  
  On 10/25/2023 1:30 PM EDT Eric Olson  wrote:        
just happened to run across this article.  Looks like you have a few of the 
signs of an infection       
https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
   
   On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote:  
Hi all, anyone have an indwelling Catheter for 40 or so years and had 
severe issues on and off with spasms and incontinence resulting in changing 
even new catheters until one works? It's hard to explain but not good. I take 
the max on spasm pills. Can't get in to see Dr for a few weeks, wanted to do 
research before. Would a supra pubic help with this? Any help would be 
appreciated. Thanks, Shirley   
  
   

Re: [QUAD-L] PROLIA INJECTIONS - BONE LOSS

[Dana]

Thank you so much for your input. I haven’t gotten a scam for 2 1/2 years
it seems like it always gets worse and I take prolia.

On Wed, Oct 25, 2023 at 10:09 AM SHIRLEY BELL  wrote:

> Hi Dana, I had something years back, shots of ? I don't get bone scans
> anymore. I feel what is the use?
>
> On 10/24/2023 2:34 AM EDT Dana  wrote:
>
>
> I get them, I don’t really know how effective They are. I am months behind
> on getting mine because I need A new dexis. sorry for the spelling error. I
> have had three different types of treatment. I have had her shots, the
> infusion and now Prolia. My bone loss is always worse.I appreciate
> everyone’s responses. Dana
>
> On Sat, Sep 30, 2023 at 8:47 PM Paul Jacobson 
> wrote:
>
> Has anyone had PROLIA injections for bone loss? If so, how did it work for
> you?
>
> Any side effects?
>
>
>
> Thank you! Paul c5/6
>
>

Re: [QUAD-L] indwelling urinary catheter problems

[SHIRLEY BELL]

Thanks everyone, My Dr does want a sample when I change the catheter again. I 
just did and this time things are ok, right now. don't want to try to change 
again as that's when it goes south.

> On 10/25/2023 1:30 PM EDT Eric Olson  wrote:
>  
>  
> just happened to run across this article.  Looks like you have a few of the 
> signs of an infection
>  
> https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection
> 
> On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  mailto:sbell...@cox.net> wrote:
> 
> > Hi all, anyone have an indwelling Catheter for 40 or so years and had 
> > severe issues on and off with spasms and incontinence resulting in changing 
> > even new catheters until one works? It's hard to explain but not good. I 
> > take the max on spasm pills. Can't get in to see Dr for a few weeks, wanted 
> > to do research before. Would a supra pubic help with this? Any help would 
> > be appreciated. Thanks, Shirley
> > 
> 

Re: [QUAD-L] indwelling urinary catheter problems

[Eric Olson]

just happened to run across this article.  Looks like you have a few of the
signs of an infection

https://www.hollister.com/en/continencecare/continencelearningcenter/livingwithaneurologicalcondition/7signsthatyoumayhaveaurinarytractinfection

On Wed, Oct 25, 2023 at 10:25 AM SHIRLEY BELL  wrote:

> Hi all, anyone have an indwelling Catheter for 40 or so years and had
> severe issues on and off with spasms and incontinence resulting in changing
> even new catheters until one works? It's hard to explain but not good. I
> take the max on spasm pills. Can't get in to see Dr for a few weeks, wanted
> to do research before. Would a supra pubic help with this? Any help would
> be appreciated. Thanks, Shirley
>

Re: [QUAD-L] indwelling urinary catheter problems

[Eric Olson]

I don't know if a supra pubic would solve your problems or not. but it sure
makes catheter changes easier.  I too wonder if you have a uti

On Wed, Oct 25, 2023 at 10:42 AM Nichole Rohling 
wrote:

> Hi Shirey,
>
>
>
> I’ve had an indwelling cath for 25 years. Minimal problems. Do you
> irrigate it?
>
> I irrigate in the morning and at night. Is sediment stopping it up?
>
> If so could be a bladder stone. Do you have a UTI? That can cause spasms.
>
>
>
> Hope you get it figured out soon.
>
>
>
> Nicki
>
>
>
>
>
> *From:* SHIRLEY BELL [mailto:sbell...@cox.net]
> *Sent:* Wednesday, October 25, 2023 10:25 AM
> *To:* quad-list
> *Subject:* [QUAD-L] indwelling urinary catheter problems
>
>
>
> Hi all, anyone have an indwelling Catheter for 40 or so years and had
> severe issues on and off with spasms and incontinence resulting in changing
> even new catheters until one works? It's hard to explain but not good. I
> take the max on spasm pills. Can't get in to see Dr for a few weeks, wanted
> to do research before. Would a supra pubic help with this? Any help would
> be appreciated. Thanks, Shirley
>

RE: [QUAD-L] indwelling urinary catheter problems

[Nichole Rohling]

Hi Shirey,

 

I’ve had an indwelling cath for 25 years. Minimal problems. Do you irrigate it?

I irrigate in the morning and at night. Is sediment stopping it up?

If so could be a bladder stone. Do you have a UTI? That can cause spasms.

 

Hope you get it figured out soon.

 

Nicki

 

 

From: SHIRLEY BELL [mailto:sbell...@cox.net] 
Sent: Wednesday, October 25, 2023 10:25 AM
To: quad-list
Subject: [QUAD-L] indwelling urinary catheter problems

 

Hi all, anyone have an indwelling Catheter for 40 or so years and had severe 
issues on and off with spasms and incontinence resulting in changing even new 
catheters until one works? It's hard to explain but not good. I take the max on 
spasm pills. Can't get in to see Dr for a few weeks, wanted to do research 
before. Would a supra pubic help with this? Any help would be appreciated. 
Thanks, Shirley 

Re: [QUAD-L] PROLIA INJECTIONS - BONE LOSS

[SHIRLEY BELL]

Hi Dana, I had something years back, shots of ? I don't get bone scans anymore. 
I feel what is the use? 

> On 10/24/2023 2:34 AM EDT Dana  wrote:
>  
>  
> I get them, I don’t really know how effective They are. I am months behind on 
> getting mine because I need A new dexis. sorry for the spelling error. I have 
> had three different types of treatment. I have had her shots, the infusion 
> and now Prolia. My bone loss is always worse.I appreciate everyone’s 
> responses. Dana 
> 
> On Sat, Sep 30, 2023 at 8:47 PM Paul Jacobson  mailto:pjacob...@san.rr.com> wrote:
> 
> > 
> > Has anyone had PROLIA injections for bone loss? If so, how did it work for 
> > you?
> > 
> > Any side effects?
> > 
> >  
> > 
> > Thank you! Paul c5/6
> > 
> 

Re: [QUAD-L] PROLIA INJECTIONS - BONE LOSS

[Dana]

I get them, I don’t really know how effective They are. I am months behind
on getting mine because I need A new dexis. sorry for the spelling error. I
have had three different types of treatment. I have had her shots, the
infusion and now Prolia. My bone loss is always worse.I appreciate
everyone’s responses. Dana

On Sat, Sep 30, 2023 at 8:47 PM Paul Jacobson  wrote:

> Has anyone had PROLIA injections for bone loss? If so, how did it work for
> you?
>
> Any side effects?
>
>
>
> Thank you! Paul c5/6
>

Re: [QUAD-L] nighttime alert

[Dana]

Use Alexa for music. I use Google to call people if my iPhone Siri is not
working . I don’t have a way to control the thermostat. I have Nest but I
couldn’t get it to work and then 800 number couldn’t help me. Now Nest is
not available unless you downloaded another programs. I wasn’t able to in
time. I appreciate iSuggestions. I may not be using all the Alexa features
as I just have one and I have 2 googles.


On Fri, Oct 13, 2023 at 12:27 AM Jim Lubin  wrote:

> I use a baby monitor and Amazon echos (multiple throughout the house)
>
> https://www.amazon.com/gp/product/B08DF55XYX
>
>
>
> On Thu, Oct 12, 2023 at 2:10 PM Ben Mattlin  wrote:
>
>> I'm so far behind the curve! But, yes, that's the kind of thing I was
>> thinking of – being able to call out from bed, say, or any other time I'm
>> away from my phone or computer.
>>
>
>>
>> *From:* Edward Tessier 
>> *Sent:* Thursday, October 12, 2023 1:38 PM
>> *To:* Ben Mattlin ; 'Noel' 
>> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' <
>> whee...@wi.rr.com>; 'Quad List' 
>> *Subject:* Re: [QUAD-L] nighttime alert
>>
>>
>>
>> Oh and one more great feature of the Amazon/Alexa smart speakers
>>
>>
>>
>> Being able to intercom hands-free to my attendant, no matter where in the
>> house  she is
>>
>>
>>
>> Also, when my wife and kids are not around, I know my wife appreciates
>> the fact that I can use the Alexa to call anybody hands-free, or call 911
>> --
>>
>> *From:* Edward Tessier 
>> *Sent:* Thursday, October 12, 2023 1:29 PM
>> *To:* Ben Mattlin ; 'Noel' 
>> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' <
>> whee...@wi.rr.com>; 'Quad List' 
>> *Subject:* Re: [QUAD-L] nighttime alert
>>
>>
>>
>> What   nest products were you thinking of using? Just a thermostat?
>> Cameras? Doorbell?
>>
>>
>>
>> We've had a lot of luck with smart things, Which is basically the Samsung
>> home ecosystem
>>
>>
>>
>> We use Amazon smart speakers as the control in each room because they are
>> so affordable
>>
>>
>>
>> https://www.samsung.com/us/smart-home/smartthings/b2bapp/
>>
>> <https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
>>
>> Samsung SmartThings: Smart Home Automation | Samsung US
>> <https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
>>
>> Check in on your home anytime with home security systems that you can
>> view from your smartphone. Set up motion and audio alerts so you don’t miss
>> a thing.
>>
>> www.samsung.com
>>
>>
>>
>>
>> --
>>
>> *From:* Ben Mattlin 
>> *Sent:* Thursday, October 12, 2023 11:25 AM
>> *To:* Edward Tessier ; 'Noel' 
>> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' <
>> whee...@wi.rr.com>; 'Quad List' 
>> *Subject:* RE: [QUAD-L] nighttime alert
>>
>>
>>
>> Thanks for the feedback and advice, everyone! What a great community!
>>
>>
>>
>> *From:* Edward Tessier 
>> *Sent:* Wednesday, October 11, 2023 10:35 PM
>> *To:* Ben Mattlin ; 'Noel' 
>> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' <
>> whee...@wi.rr.com>; 'Quad List' 
>> *Subject:* Re: [QUAD-L] nighttime alert
>>
>>
>>
>> We tried nest. Lots of glitches and updates and not connecting well to
>> Wi-Fi.
>> --
>>
>> *From:* Ben Mattlin 
>> *Sent:* Tuesday, October 10, 2023 3:14 PM
>> *To:* 'Noel' 
>> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' <
>> whee...@wi.rr.com>; 'Quad List' 
>> *Subject:* RE: [QUAD-L] nighttime alert
>>
>>
>>
>> Anybody tried Google Nest?
>>
>>
>>
>> *From:* Noel 
>> *Sent:* Tuesday, October 10, 2023 11:20 AM
>> *To:* Ben Mattlin 
>> *Cc:* Jeffrey Gaede ; Eric Olson ;
>> Quad List 
>> *Subject:* Re: [QUAD-L] nighttime alert
>>
>>
>>
>> Surprisingly yes, it even whispers back.
>>
>>
>>
>> On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin 
>> wrote:
>>
>> You mean Alexa or Echo can hear even a whisper? Definitely have to check
>> it out. I haven't made the plunge into "smart" devices yet. Thanks for the
>> good ideas, everyone!
>>
>>
>>
>> *From:* Jeffrey Gaede 
>> *Sent:* Tuesday, October 10, 2023 10:01 AM
>> *To:* Noel ; Eric Olson 
>> *Cc:* Ben Mattlin ; Quad List > >
>> *Subject:* Re: [QUAD-L] nighttime alert
>>
>>
>

Re: [QUAD-L] nighttime alert

[Jim Lubin]

I use a baby monitor and Amazon echos (multiple throughout the house)

https://www.amazon.com/gp/product/B08DF55XYX



On Thu, Oct 12, 2023 at 2:10 PM Ben Mattlin  wrote:

> I'm so far behind the curve! But, yes, that's the kind of thing I was
> thinking of – being able to call out from bed, say, or any other time I'm
> away from my phone or computer.
>
>
>
> *From:* Edward Tessier 
> *Sent:* Thursday, October 12, 2023 1:38 PM
> *To:* Ben Mattlin ; 'Noel' 
> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' ;
> 'Quad List' 
> *Subject:* Re: [QUAD-L] nighttime alert
>
>
>
> Oh and one more great feature of the Amazon/Alexa smart speakers
>
>
>
> Being able to intercom hands-free to my attendant, no matter where in the
> house  she is
>
>
>
> Also, when my wife and kids are not around, I know my wife appreciates the
> fact that I can use the Alexa to call anybody hands-free, or call 911
> --
>
> *From:* Edward Tessier 
> *Sent:* Thursday, October 12, 2023 1:29 PM
> *To:* Ben Mattlin ; 'Noel' 
> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' ;
> 'Quad List' 
> *Subject:* Re: [QUAD-L] nighttime alert
>
>
>
> What   nest products were you thinking of using? Just a thermostat?
> Cameras? Doorbell?
>
>
>
> We've had a lot of luck with smart things, Which is basically the Samsung
> home ecosystem
>
>
>
> We use Amazon smart speakers as the control in each room because they are
> so affordable
>
>
>
> https://www.samsung.com/us/smart-home/smartthings/b2bapp/
>
> <https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
>
> Samsung SmartThings: Smart Home Automation | Samsung US
> <https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
>
> Check in on your home anytime with home security systems that you can view
> from your smartphone. Set up motion and audio alerts so you don’t miss a
> thing.
>
> www.samsung.com
>
>
>
>
> --
>
> *From:* Ben Mattlin 
> *Sent:* Thursday, October 12, 2023 11:25 AM
> *To:* Edward Tessier ; 'Noel' 
> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' ;
> 'Quad List' 
> *Subject:* RE: [QUAD-L] nighttime alert
>
>
>
> Thanks for the feedback and advice, everyone! What a great community!
>
>
>
> *From:* Edward Tessier 
> *Sent:* Wednesday, October 11, 2023 10:35 PM
> *To:* Ben Mattlin ; 'Noel' 
> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' ;
> 'Quad List' 
> *Subject:* Re: [QUAD-L] nighttime alert
>
>
>
> We tried nest. Lots of glitches and updates and not connecting well to
> Wi-Fi.
> --
>
> *From:* Ben Mattlin 
> *Sent:* Tuesday, October 10, 2023 3:14 PM
> *To:* 'Noel' 
> *Cc:* 'Jeffrey Gaede' ; 'Eric Olson' ;
> 'Quad List' 
> *Subject:* RE: [QUAD-L] nighttime alert
>
>
>
> Anybody tried Google Nest?
>
>
>
> *From:* Noel 
> *Sent:* Tuesday, October 10, 2023 11:20 AM
> *To:* Ben Mattlin 
> *Cc:* Jeffrey Gaede ; Eric Olson ;
> Quad List 
> *Subject:* Re: [QUAD-L] nighttime alert
>
>
>
> Surprisingly yes, it even whispers back.
>
>
>
> On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin  wrote:
>
> You mean Alexa or Echo can hear even a whisper? Definitely have to check
> it out. I haven't made the plunge into "smart" devices yet. Thanks for the
> good ideas, everyone!
>
>
>
> *From:* Jeffrey Gaede 
> *Sent:* Tuesday, October 10, 2023 10:01 AM
> *To:* Noel ; Eric Olson 
> *Cc:* Ben Mattlin ; Quad List 
> *Subject:* Re: [QUAD-L] nighttime alert
>
>
>
> You get a couple of the cheapest Amazon Echos, assuming you have Internet,
> and turn the volume up because that's both the speaker and the microphone,
> and keep it nearby. Should work fine
>
>
>
> On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
>
>
>
> I go low tech and just use a baby monitor.
>
>
>
> On Mon, Oct 9, 2023 at 3:11 PM Noel  wrote:
>
> I use an Amazon Echo, it can hear me whisper at night for controlling the
> TV. Can make phone calls, or drop in on other echo devices
>
>
>
> On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin  wrote:
>
> I have basically no muscle or movement and not much voice. Trying to
> figure out how to alert someone who is in another room if I need help at
> night, when I am in bed and not mobile. A baby monitor? A very sensitive
> voice-activated cell phone? Not sure what would work. All suggestions
> welcome!
>
> Thanks.
>
> Ben
>
>
>
>

RE: [QUAD-L] nighttime alert

[Ben Mattlin]

I'm so far behind the curve! But, yes, that's the kind of thing I was thinking 
of – being able to call out from bed, say, or any other time I'm away from my 
phone or computer.

 

From: Edward Tessier  
Sent: Thursday, October 12, 2023 1:38 PM
To: Ben Mattlin ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: Re: [QUAD-L] nighttime alert

 

Oh and one more great feature of the Amazon/Alexa smart speakers

 

Being able to intercom hands-free to my attendant, no matter where in the house 
 she is

 

Also, when my wife and kids are not around, I know my wife appreciates the fact 
that I can use the Alexa to call anybody hands-free, or call 911

  _  

From: Edward Tessier mailto:e...@artecopartners.com> >
Sent: Thursday, October 12, 2023 1:29 PM
To: Ben Mattlin mailto:benmatt...@gmail.com> >; 'Noel' 
mailto:swl...@gmail.com> >
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com> >; 'Eric 
Olson' mailto:whee...@wi.rr.com> >; 'Quad List' 
mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert 

 

What   nest products were you thinking of using? Just a thermostat? Cameras? 
Doorbell?

 

We've had a lot of luck with smart things, Which is basically the Samsung home 
ecosystem

 

We use Amazon smart speakers as the control in each room because they are so 
affordable

 

https://www.samsung.com/us/smart-home/smartthings/b2bapp/


 <https://www.samsung.com/us/smart-home/smartthings/b2bapp/> 

 <https://www.samsung.com/us/smart-home/smartthings/b2bapp/> Samsung 
SmartThings: Smart Home Automation | Samsung US

Check in on your home anytime with home security systems that you can view from 
your smartphone. Set up motion and audio alerts so you don’t miss a thing.

www.samsung.com <http://www.samsung.com> 

 

 

  _  

From: Ben Mattlin mailto:benmatt...@gmail.com> >
Sent: Thursday, October 12, 2023 11:25 AM
To: Edward Tessier mailto:e...@artecopartners.com> >; 
'Noel' mailto:swl...@gmail.com> >
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com> >; 'Eric 
Olson' mailto:whee...@wi.rr.com> >; 'Quad List' 
mailto:quad-list@eskimo.com> >
Subject: RE: [QUAD-L] nighttime alert 

 

Thanks for the feedback and advice, everyone! What a great community!

 

From: Edward Tessier mailto:e...@artecopartners.com> 
> 
Sent: Wednesday, October 11, 2023 10:35 PM
To: Ben Mattlin mailto:benmatt...@gmail.com> >; 'Noel' 
mailto:swl...@gmail.com> >
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com> >; 'Eric 
Olson' mailto:whee...@wi.rr.com> >; 'Quad List' 
mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert

 

We tried nest. Lots of glitches and updates and not connecting well to Wi-Fi.

  _  

From: Ben Mattlin mailto:benmatt...@gmail.com> >
Sent: Tuesday, October 10, 2023 3:14 PM
To: 'Noel' mailto:swl...@gmail.com> >
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com> >; 'Eric 
Olson' mailto:whee...@wi.rr.com> >; 'Quad List' 
mailto:quad-list@eskimo.com> >
Subject: RE: [QUAD-L] nighttime alert 

 

Anybody tried Google Nest?

 

From: Noel mailto:swl...@gmail.com> > 
Sent: Tuesday, October 10, 2023 11:20 AM
To: Ben Mattlin mailto:benmatt...@gmail.com> >
Cc: Jeffrey Gaede mailto:jsga...@yahoo.com> >; Eric Olson 
mailto:whee...@wi.rr.com> >; Quad List 
mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert

 

Surprisingly yes, it even whispers back.

 

On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!

 

From: Jeffrey Gaede mailto:jsga...@yahoo.com> > 
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel mailto:swl...@gmail.com> >; Eric Olson 
mailto:whee...@wi.rr.com> >
Cc: Ben Mattlin mailto:benmatt...@gmail.com> >; Quad 
List mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert

 

You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine

 

On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson mailto:whee...@wi.rr.com> > wrote: 

 

 

I go low tech and just use a baby monitor.  

 

On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com> 
> wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices

 

On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

 

Re: [QUAD-L] nighttime alert

[Edward Tessier]

Oh and one more great feature of the Amazon/Alexa smart speakers

Being able to intercom hands-free to my attendant, no matter where in the house 
 she is

Also, when my wife and kids are not around, I know my wife appreciates the fact 
that I can use the Alexa to call anybody hands-free, or call 911

From: Edward Tessier 
Sent: Thursday, October 12, 2023 1:29 PM
To: Ben Mattlin ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: Re: [QUAD-L] nighttime alert

What   nest products were you thinking of using? Just a thermostat? Cameras? 
Doorbell?

We've had a lot of luck with smart things, Which is basically the Samsung home 
ecosystem

We use Amazon smart speakers as the control in each room because they are so 
affordable

https://www.samsung.com/us/smart-home/smartthings/b2bapp/
[http://image-us.samsung.com/SamsungUS/home/samsung-logo-191-1.jpg]<https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
Samsung SmartThings: Smart Home Automation | Samsung 
US<https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
Check in on your home anytime with home security systems that you can view from 
your smartphone. Set up motion and audio alerts so you don’t miss a thing.
www.samsung.com



From: Ben Mattlin 
Sent: Thursday, October 12, 2023 11:25 AM
To: Edward Tessier ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: RE: [QUAD-L] nighttime alert


Thanks for the feedback and advice, everyone! What a great community!



From: Edward Tessier 
Sent: Wednesday, October 11, 2023 10:35 PM
To: Ben Mattlin ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: Re: [QUAD-L] nighttime alert



We tried nest. Lots of glitches and updates and not connecting well to Wi-Fi.



From: Ben Mattlin mailto:benmatt...@gmail.com>>
Sent: Tuesday, October 10, 2023 3:14 PM
To: 'Noel' mailto:swl...@gmail.com>>
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com>>; 'Eric Olson' 
mailto:whee...@wi.rr.com>>; 'Quad List' 
mailto:quad-list@eskimo.com>>
Subject: RE: [QUAD-L] nighttime alert



Anybody tried Google Nest?



From: Noel mailto:swl...@gmail.com>>
Sent: Tuesday, October 10, 2023 11:20 AM
To: Ben Mattlin mailto:benmatt...@gmail.com>>
Cc: Jeffrey Gaede mailto:jsga...@yahoo.com>>; Eric Olson 
mailto:whee...@wi.rr.com>>; Quad List 
mailto:quad-list@eskimo.com>>
Subject: Re: [QUAD-L] nighttime alert



Surprisingly yes, it even whispers back.



On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin 
mailto:benmatt...@gmail.com>> wrote:

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!



From: Jeffrey Gaede mailto:jsga...@yahoo.com>>
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel mailto:swl...@gmail.com>>; Eric Olson 
mailto:whee...@wi.rr.com>>
Cc: Ben Mattlin mailto:benmatt...@gmail.com>>; Quad List 
mailto:quad-list@eskimo.com>>
Subject: Re: [QUAD-L] nighttime alert



You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine



On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson 
mailto:whee...@wi.rr.com>> wrote:





I go low tech and just use a baby monitor.



On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com>> 
wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices



On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin 
mailto:benmatt...@gmail.com>> wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

Re: [QUAD-L] nighttime alert

[Edward Tessier]

What   nest products were you thinking of using? Just a thermostat? Cameras? 
Doorbell?

We've had a lot of luck with smart things, Which is basically the Samsung home 
ecosystem

We use Amazon smart speakers as the control in each room because they are so 
affordable

https://www.samsung.com/us/smart-home/smartthings/b2bapp/
[http://image-us.samsung.com/SamsungUS/home/samsung-logo-191-1.jpg]<https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
Samsung SmartThings: Smart Home Automation | Samsung 
US<https://www.samsung.com/us/smart-home/smartthings/b2bapp/>
Check in on your home anytime with home security systems that you can view from 
your smartphone. Set up motion and audio alerts so you don’t miss a thing.
www.samsung.com



From: Ben Mattlin 
Sent: Thursday, October 12, 2023 11:25 AM
To: Edward Tessier ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: RE: [QUAD-L] nighttime alert


Thanks for the feedback and advice, everyone! What a great community!



From: Edward Tessier 
Sent: Wednesday, October 11, 2023 10:35 PM
To: Ben Mattlin ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: Re: [QUAD-L] nighttime alert



We tried nest. Lots of glitches and updates and not connecting well to Wi-Fi.



From: Ben Mattlin mailto:benmatt...@gmail.com>>
Sent: Tuesday, October 10, 2023 3:14 PM
To: 'Noel' mailto:swl...@gmail.com>>
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com>>; 'Eric Olson' 
mailto:whee...@wi.rr.com>>; 'Quad List' 
mailto:quad-list@eskimo.com>>
Subject: RE: [QUAD-L] nighttime alert



Anybody tried Google Nest?



From: Noel mailto:swl...@gmail.com>>
Sent: Tuesday, October 10, 2023 11:20 AM
To: Ben Mattlin mailto:benmatt...@gmail.com>>
Cc: Jeffrey Gaede mailto:jsga...@yahoo.com>>; Eric Olson 
mailto:whee...@wi.rr.com>>; Quad List 
mailto:quad-list@eskimo.com>>
Subject: Re: [QUAD-L] nighttime alert



Surprisingly yes, it even whispers back.



On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin 
mailto:benmatt...@gmail.com>> wrote:

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!



From: Jeffrey Gaede mailto:jsga...@yahoo.com>>
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel mailto:swl...@gmail.com>>; Eric Olson 
mailto:whee...@wi.rr.com>>
Cc: Ben Mattlin mailto:benmatt...@gmail.com>>; Quad List 
mailto:quad-list@eskimo.com>>
Subject: Re: [QUAD-L] nighttime alert



You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine



On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson 
mailto:whee...@wi.rr.com>> wrote:





I go low tech and just use a baby monitor.



On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com>> 
wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices



On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin 
mailto:benmatt...@gmail.com>> wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

RE: [QUAD-L] nighttime alert

[Ben Mattlin]

Thanks for the feedback and advice, everyone! What a great community!

 

From: Edward Tessier  
Sent: Wednesday, October 11, 2023 10:35 PM
To: Ben Mattlin ; 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: Re: [QUAD-L] nighttime alert

 

We tried nest. Lots of glitches and updates and not connecting well to Wi-Fi.

  _  

From: Ben Mattlin mailto:benmatt...@gmail.com> >
Sent: Tuesday, October 10, 2023 3:14 PM
To: 'Noel' mailto:swl...@gmail.com> >
Cc: 'Jeffrey Gaede' mailto:jsga...@yahoo.com> >; 'Eric 
Olson' mailto:whee...@wi.rr.com> >; 'Quad List' 
mailto:quad-list@eskimo.com> >
Subject: RE: [QUAD-L] nighttime alert 

 

Anybody tried Google Nest?

 

From: Noel mailto:swl...@gmail.com> > 
Sent: Tuesday, October 10, 2023 11:20 AM
To: Ben Mattlin mailto:benmatt...@gmail.com> >
Cc: Jeffrey Gaede mailto:jsga...@yahoo.com> >; Eric Olson 
mailto:whee...@wi.rr.com> >; Quad List 
mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert

 

Surprisingly yes, it even whispers back.

 

On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!

 

From: Jeffrey Gaede mailto:jsga...@yahoo.com> > 
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel mailto:swl...@gmail.com> >; Eric Olson 
mailto:whee...@wi.rr.com> >
Cc: Ben Mattlin mailto:benmatt...@gmail.com> >; Quad 
List mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert

 

You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine

 

On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson mailto:whee...@wi.rr.com> > wrote: 

 

 

I go low tech and just use a baby monitor.  

 

On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com> 
> wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices

 

On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

 

Re: [QUAD-L] nighttime alert

[Edward Tessier]

We tried nest. Lots of glitches and updates and not connecting well to Wi-Fi.

From: Ben Mattlin 
Sent: Tuesday, October 10, 2023 3:14 PM
To: 'Noel' 
Cc: 'Jeffrey Gaede' ; 'Eric Olson' ; 
'Quad List' 
Subject: RE: [QUAD-L] nighttime alert


Anybody tried Google Nest?



From: Noel 
Sent: Tuesday, October 10, 2023 11:20 AM
To: Ben Mattlin 
Cc: Jeffrey Gaede ; Eric Olson ; Quad 
List 
Subject: Re: [QUAD-L] nighttime alert



Surprisingly yes, it even whispers back.



On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin 
mailto:benmatt...@gmail.com>> wrote:

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!



From: Jeffrey Gaede mailto:jsga...@yahoo.com>>
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel mailto:swl...@gmail.com>>; Eric Olson 
mailto:whee...@wi.rr.com>>
Cc: Ben Mattlin mailto:benmatt...@gmail.com>>; Quad List 
mailto:quad-list@eskimo.com>>
Subject: Re: [QUAD-L] nighttime alert



You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine



On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson 
mailto:whee...@wi.rr.com>> wrote:





I go low tech and just use a baby monitor.



On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com>> 
wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices



On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin 
mailto:benmatt...@gmail.com>> wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

Re: [QUAD-L] Ileostomy

[Eric Olson]

There was a person on the list that had a syrinx, but sadly, she passed
away.  She had a shunt put in that let the fluid in the syrinx drain
continuously into her stomach.  Since you're doing research anyway, perhaps
do some research on a shunt.  Neither is a no joke surgery.  Are you sure
your digestive issues are from the syrinx and not something more common
like IBS?

On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux  wrote:

> Hi everyone:
>
> I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx
> which is a cyst that fills up with cerebral fluid and stretches down the
> spine. This cyst affects how the messages are sent from the brain to the
> organs in order to make them work properly. So far it has affected my
> digestive system and I am very limited as to what I can eat.
>
> My surgeon is suggesting an ileostomy and I am now researching to see if
> this would be beneficial or not? Is there anyone out there that has an
> ileostomy that I could speak with?
>
> Thanks in advance for anyone that can help me with information so that I
> can make my decision which a yes of a no?
>
> Val Cleroux
> www.whyped.ca
> "Communication is the key to success"
>
>

RE: [QUAD-L] nighttime alert

[Ben Mattlin]

Anybody tried Google Nest?

 

From: Noel  
Sent: Tuesday, October 10, 2023 11:20 AM
To: Ben Mattlin 
Cc: Jeffrey Gaede ; Eric Olson ; Quad 
List 
Subject: Re: [QUAD-L] nighttime alert

 

Surprisingly yes, it even whispers back.

 

On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!

 

From: Jeffrey Gaede mailto:jsga...@yahoo.com> > 
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel mailto:swl...@gmail.com> >; Eric Olson 
mailto:whee...@wi.rr.com> >
Cc: Ben Mattlin mailto:benmatt...@gmail.com> >; Quad 
List mailto:quad-list@eskimo.com> >
Subject: Re: [QUAD-L] nighttime alert

 

You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine

 

On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson mailto:whee...@wi.rr.com> > wrote: 

 

 

I go low tech and just use a baby monitor.  

 

On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com> 
> wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices

 

On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

 

Re: [QUAD-L] nighttime alert

[Noel]

Surprisingly yes, it even whispers back.

On Tue, Oct 10, 2023 at 11:58 AM Ben Mattlin  wrote:

> You mean Alexa or Echo can hear even a whisper? Definitely have to check
> it out. I haven't made the plunge into "smart" devices yet. Thanks for the
> good ideas, everyone!
>
>
>
> *From:* Jeffrey Gaede 
> *Sent:* Tuesday, October 10, 2023 10:01 AM
> *To:* Noel ; Eric Olson 
> *Cc:* Ben Mattlin ; Quad List 
> *Subject:* Re: [QUAD-L] nighttime alert
>
>
>
> You get a couple of the cheapest Amazon Echos, assuming you have Internet,
> and turn the volume up because that's both the speaker and the microphone,
> and keep it nearby. Should work fine
>
>
>
> On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
>
>
>
> I go low tech and just use a baby monitor.
>
>
>
> On Mon, Oct 9, 2023 at 3:11 PM Noel  wrote:
>
> I use an Amazon Echo, it can hear me whisper at night for controlling the
> TV. Can make phone calls, or drop in on other echo devices
>
>
>
> On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin  wrote:
>
> I have basically no muscle or movement and not much voice. Trying to
> figure out how to alert someone who is in another room if I need help at
> night, when I am in bed and not mobile. A baby monitor? A very sensitive
> voice-activated cell phone? Not sure what would work. All suggestions
> welcome!
>
> Thanks.
>
> Ben
>
>
>
>

RE: [QUAD-L] nighttime alert

[Ben Mattlin]

You mean Alexa or Echo can hear even a whisper? Definitely have to check it 
out. I haven't made the plunge into "smart" devices yet. Thanks for the good 
ideas, everyone!

 

From: Jeffrey Gaede  
Sent: Tuesday, October 10, 2023 10:01 AM
To: Noel ; Eric Olson 
Cc: Ben Mattlin ; Quad List 
Subject: Re: [QUAD-L] nighttime alert

 

You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine

 

On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson mailto:whee...@wi.rr.com> > wrote: 

 

 

I go low tech and just use a baby monitor.  

 

On Mon, Oct 9, 2023 at 3:11 PM Noel mailto:swl...@gmail.com> 
> wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices

 

On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin mailto:benmatt...@gmail.com> > wrote:

I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

 

Re: [QUAD-L] nighttime alert

[Jeffrey Gaede]

 You get a couple of the cheapest Amazon Echos, assuming you have Internet, and 
turn the volume up because that's both the speaker and the microphone, and keep 
it nearby. Should work fine
On Tuesday, October 10, 2023 at 09:58:35 AM PDT, Eric Olson 
 wrote:  
 
 I go low tech and just use a baby monitor.  

On Mon, Oct 9, 2023 at 3:11 PM Noel  wrote:

I use an Amazon Echo, it can hear me whisper at night for controlling the TV. 
Can make phone calls, or drop in on other echo devices
On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin  wrote:


I have basically no muscle or movement and not much voice. Trying to figure out 
how to alert someone who is in another room if I need help at night, when I am 
in bed and not mobile. A baby monitor? A very sensitive voice-activated cell 
phone? Not sure what would work. All suggestions welcome!

Thanks.

Ben

 


  

Re: [QUAD-L] nighttime alert

[Eric Olson]

I go low tech and just use a baby monitor.

On Mon, Oct 9, 2023 at 3:11 PM Noel  wrote:

> I use an Amazon Echo, it can hear me whisper at night for controlling the
> TV. Can make phone calls, or drop in on other echo devices
>
> On Mon, Oct 9, 2023 at 1:20 PM Ben Mattlin  wrote:
>
>> I have basically no muscle or movement and not much voice. Trying to
>> figure out how to alert someone who is in another room if I need help at
>> night, when I am in bed and not mobile. A baby monitor? A very sensitive
>> voice-activated cell phone? Not sure what would work. All suggestions
>> welcome!
>>
>> Thanks.
>>
>> Ben
>>
>>
>>
>