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] 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] 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] 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] 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] 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] 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

[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] 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

[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
>>
>>
>>
>

Re: [QUAD-L] EASY TO TRANSFER TO SHOWER CHAIR

[Eric Olson]

 thanks.  The information you gave me should suffice

On Thu, Sep 28, 2023 at 7:39 PM Noel  wrote:

>  the height of the headrest from the seat is about 30 inches at maximum.
> It looks like it can come down about a foot to the top of the backrest.
> From the seat to the top of the backrest is about 20 inches. Not real
> precise, the only person I could get to take measurements isn't the
> greatest with the tape measure.
>
> On Wed, Sep 27, 2023 at 4:02 PM Eric Olson  wrote:
>
>> how far above the backrest does the headrest go?
>>
>> On Wed, Sep 27, 2023 at 1:56 PM Noel  wrote:
>>
>>> This is what I use
>>>
>>> https://www.indemedical.com/ActiveAid-285-Tilt-In-Space-Shower-Commode-Chair_p_3849.html
>>>
>>> On Wed, Sep 27, 2023 at 12:29 PM Eric Olson  wrote:
>>>
>>>> It wouldn't work for me as I need head support.  Speaking of, anyone
>>>> have a recommendation for a commode chair with head support?
>>>>
>>>> On Tue, Sep 26, 2023 at 5:54 PM Paul Jacobson 
>>>> wrote:
>>>>
>>>>> Hi, wonder if anyone has ever tried this….super interesting!
>>>>>
>>>>>
>>>>>
>>>>> Thanks,
>>>>>
>>>>> Paul  c5/6 complete
>>>>>
>>>>>
>>>>>
>>>>> Bedside Commode Lift JT-2020K
>>>>>
>>>>> https://www.discovermymobility.com/store/bathroomlifts/discover/bedside-commode-lift-jt-2020k/index.html?gclid=CjwKCAjw38SoBhB6EiwA8EQVLoJpATEzS8slo7U87n63xWVjBeP3JZHPuPSk1fWef8l1e30ST3PzkhoCKI0QAvD_Bw
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>> Sent from my T-Mobile 5G Device
>>>>>
>>>>>
>>>>>
>>>>

Re: [QUAD-L] EASY TO TRANSFER TO SHOWER CHAIR

[Eric Olson]

how far above the backrest does the headrest go?

On Wed, Sep 27, 2023 at 1:56 PM Noel  wrote:

> This is what I use
>
> https://www.indemedical.com/ActiveAid-285-Tilt-In-Space-Shower-Commode-Chair_p_3849.html
>
> On Wed, Sep 27, 2023 at 12:29 PM Eric Olson  wrote:
>
>> It wouldn't work for me as I need head support.  Speaking of, anyone have
>> a recommendation for a commode chair with head support?
>>
>> On Tue, Sep 26, 2023 at 5:54 PM Paul Jacobson 
>> wrote:
>>
>>> Hi, wonder if anyone has ever tried this….super interesting!
>>>
>>>
>>>
>>> Thanks,
>>>
>>> Paul  c5/6 complete
>>>
>>>
>>>
>>> Bedside Commode Lift JT-2020K
>>>
>>> https://www.discovermymobility.com/store/bathroomlifts/discover/bedside-commode-lift-jt-2020k/index.html?gclid=CjwKCAjw38SoBhB6EiwA8EQVLoJpATEzS8slo7U87n63xWVjBeP3JZHPuPSk1fWef8l1e30ST3PzkhoCKI0QAvD_Bw
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> Sent from my T-Mobile 5G Device
>>>
>>>
>>>
>>

Re: [QUAD-L] EASY TO TRANSFER TO SHOWER CHAIR

[Eric Olson]

It wouldn't work for me as I need head support.  Speaking of, anyone have a
recommendation for a commode chair with head support?

On Tue, Sep 26, 2023 at 5:54 PM Paul Jacobson  wrote:

> Hi, wonder if anyone has ever tried this….super interesting!
>
>
>
> Thanks,
>
> Paul  c5/6 complete
>
>
>
> Bedside Commode Lift JT-2020K
>
> https://www.discovermymobility.com/store/bathroomlifts/discover/bedside-commode-lift-jt-2020k/index.html?gclid=CjwKCAjw38SoBhB6EiwA8EQVLoJpATEzS8slo7U87n63xWVjBeP3JZHPuPSk1fWef8l1e30ST3PzkhoCKI0QAvD_Bw
>
>
>
>
>
>
>
>
>
> Sent from my T-Mobile 5G Device
>
>
>

Re: [QUAD-L] ABDOMINAL SPASMS

[Eric Olson]

I have never used a TENS unit for spasms nor have I ever heard of anyone
using TENS for spasms.  Spasms are usually handled systematically using
medication like Baclofen.  That said,there is no risk  in trying it.  If it
truly is localized to the abdomen maybe Botox or acupuncture

On Mon, Aug 28, 2023 at 3:13 PM Paul Jacobson  wrote:

> Hi, Has anyone ever used a TENS unit for
>
> abdominal spasms? If so, can you please
>
> share your thoughts.
>
>
>
> THANK YOU!
>
> Paul  c5/6
>

Re: [QUAD-L] Greg Wickenburg

[Eric Olson]

I had a bad feeling about Greg. It really is hard to think about all the
people we've lost over the years.  I do want all of you to know that I do
think of all of you often.

On Mon, Feb 6, 2023 at 1:58 PM Danny Hearn  wrote:

> Amen, Jim.Sorry to hear about Greg, I joined the list way back in
> around 1998 or so, and so many of our good ole friends on here have passed
> over the years. I know he had been having a lot of health issues the last
> year or two.
>
> On Monday, February 6, 2023 at 01:47:12 PM CST, Jim Lubin <
> jlu...@makoa.org> wrote:
>
>
> this posted on facebook
>
> To all the friends, family and supporters of Greg Wickenburg,
> Our hearts are heavy to have to tell you that Greg passed away last night,
> February 5th 2023. He was surrounded by family and died peacefully at home.
> Greg was an amazing, inspiring, creative, generous, determined, funny
> "smartass", and as genuine as they come.
> Even facing his difficult challenges in life, he never failed to stay
> positive. He will forever be in our hearts and now he is free to fly.
> We love you Greg. You will be missed by all.
>

Re: [QUAD-L] An Introduction to ABLE Accounts

[Eric Olson]

My guess is that people have moved to social media.  People like us that
still communicate via a listserv are dinosaurs  lol

On Sat, Jan 14, 2023 at 9:16 PM Tod Santee  wrote:

> Hi Jim... I've been  a member here a long time and I check in on Quad List
> messages from time to time, though I rarely have much to offer when I see a
> question that seems like it's been fully answered once I see it.  I'm
> seeing fewer and fewer posts and/or new members.  Do you know if people are
> "meeting" or communicating on a different forum or some other list?  I've
> been meaning to ask for a while now but I'm just getting more curious since
> I sometimes see a few days between messages.
>
> Thanks!
> Tod Santee
>
> On Tue, Jan 10, 2023, 11:58 PM Jim Lubin  wrote:
>
>>  What happens to the ABLE account after the death of the account owner?click
>> for more information
>> When the account owner passes away, the funds in the ABLE account can be
>> used for any outstanding qualified disability expenses, including funeral
>> and burial expenses. The ABLE plan can advise you on what is needed such as
>> a death certificate or whether there is a special form to complete. It is
>> up to the individual state, whether or not to file a claim for Medicaid
>> recovery of funds which were paid on behalf of the account owner since the
>> account was opened. If someone has never received Medicaid, this is not an
>> issue. If the state pursues a claim, In addition to allowing for the
>> repayment of outstanding QDEs, including funeral and burial expenses,
>> Medicaid buy-in premiums paid since opening the ABLE account will be
>> reimbursed. Thereafter, the remainder of funds are payable to the Estate.
>> https://www.ablenrc.org/frequently-asked-questions/
>>
>>
>> On Tue, Jan 10, 2023 at 7:48 AM SHIRLEY BELL  wrote:
>>
>>> My question that I can't find the answer to, is if you have an able
>>> account and die doe the state get your money? Thanks Jim
>>>
>>> On January 10, 2023 at 10:34 AM Jim Lubin  wrote:
>>>
>>> Age Limit — Eligibility is currently limited to people who developed
>>> their disability before age 26; anyone who becomes disabled later in life
>>> does not qualify. Fortunately, in late 2022, Congress signed off on
>>> adjusting this age limitation beginning in 2026. At that time, individuals
>>> who became disabled before age 46 (rather than age 26) will be eligible to
>>> open an ABLE account.
>>> https://specialneedsanswers.com/an-introduction-to-able-accounts-17586
>>>
>>>
>>>
>>>
>>

Re: [QUAD-L]

[Eric Olson]

I had mine placed so long ago it is hard to remember.  I don't remember
having any pain, but I couldn't say for sure because it was so long ago.
Is his leg/bed bag filling with urine?  If not, urine could back up into
his kidneys..  That would need to be addressed immediately.  Is the pain at
the stoma or somewhere else?  Monitor it and if the pain doesn't go away,
you should call the doctor.

On Sat, Jan 7, 2023 at 4:06 PM Lily Nami  wrote:

> Hi guys ,, nowdays my friend use supra public catheter but he has some
> pains is it normal ??
>

Re: [QUAD-L]

[Eric Olson]

Is your friend on a ventilator or does he have trouble breathing?  It's not
painful, but being on a ventilator adds an extra layer of complexity to an
already tough situation (paralysis)

On Sun, Jan 1, 2023 at 2:02 PM Lily Nami  wrote:

> Hi everyone ,, does someone have the experience of using ventilator ??
> What would be like life with it ?? Is it hard or painful??
>

Re: [QUAD-L]

[Eric Olson]

I forgot to mention I also take 2 prebiotics. 1 Align and 1 Philips colon
health every day

On Sun, Jan 1, 2023 at 12:32 PM Eric Olson  wrote:

> A cap full of Miralax on the day of my bowel program.  This has helped me
> the most. I also take 2 Senecot tablets the day of my program. I take 20cc
> of Metamucil twice a day.  Also, drink plenty of water
>
> On Sat, Dec 31, 2022 at 10:30 PM Lily Nami  wrote:
>
>> Hello everyone , what are your advice for constipation in quadriplegic
>> ppl?? I'll be grateful for your answers
>>
>

Re: [QUAD-L]

[Eric Olson]

A cap full of Miralax on the day of my bowel program.  This has helped me
the most. I also take 2 Senecot tablets the day of my program. I take 20cc
of Metamucil twice a day.  Also, drink plenty of water

On Sat, Dec 31, 2022 at 10:30 PM Lily Nami  wrote:

> Hello everyone , what are your advice for constipation in quadriplegic
> ppl?? I'll be grateful for your answers
>

Re: [QUAD-L]

[Eric Olson]

Hi Lily,

I am sorry this is a little la,but I use a supra public catheter for
bladder care.  For bowel care I use a magic bullet suppository and digital
stimulation.  To answer your current question, it would be helpful to know
a little bit more about his situation.  How long has he been injured?  Does
he have a wheelchair to get out of the house?  That kind of information
could help us.  I think connecting with other paralyzed people whether here
or online might help him not feel so alone would be a good place to start

On Thu, Dec 29, 2022 at 3:43 PM Lily Nami  wrote:

> Hello again my friends , thanks for your information about my last
> questions , now I need your help again ,, how can I make happy my c4 friend
> ?? He is 25 years old and can't move any part of his body
>

Re: [QUAD-L] Caregiver services

[Eric Olson]

What have you been doing for caregivers up to now?

On Tue, Dec 20, 2022 at 6:49 PM Greg  wrote:

> Anyone know of an emergency caregiver service that you can call and ask
> someone to start right away? The Phoenix Arizona area. Only for about 6 to
> 8 weeks. I could probably go with the caregiver doing a couple hours
> morning and a couple hours at night. Or a live-in. I just don't know if I
> will need it, but if I do, it would be right away. A lot of family health
> issues going on, all hitting at once.
>
> My insurance covers for healthcare, but it's only when I need actual
> medical services not just custodial care.
>
> Thanks so much, Greg
>

Re: [QUAD-L] Colon Cancer

[Eric Olson]

For most people, you could opt for hospice care.  The hospice nurses just
load you up with morphine and you stop breathing in your sleep.  Peaceful
and painless.  Of course, I don't have that option being on a vent.  Death
from cancer for me will be long, drawn out, and miserable

On Sun, Aug 28, 2022 at 10:35 AM Jeffrey Gaede  wrote:

> For those ready to "cash in their chips", for lack of a better expression
> this morning, and I do understand where you're coming from, have you
> thought about what having cancer, what dying from cancer might be like, or
> did you have other plans?
> Jeff
>
> On Thursday, August 25, 2022 at 11:59:32 AM PDT, Greg <
> mongrelti...@gmail.com> wrote:
>
>
> Greg,
>
> Receiving those results from the Cologuard test must have been a bit of a
> shock. I hope you fall into that 13% false positive group.
>
> I'm 58, and was due for another colonoscopy earlier this year. It would
> have been my third in 15 years. My doctor told me to call him back with a
> date and he would set it up with my gastroenterologist. Two weeks later my
> doctor retired and I have not yet seen his replacement. I never picked a
> date and I never called him back, so I still haven't had the colonoscopy.
> Like most, it's the prep that makes it so difficult. And of course, the
> prep is even more difficult for my caregiver. But putting all that aside, I
> am almost certain I would reject whatever treatment necessary to tackle the
> problem if they discovered cancer. I have lived a comfortable, full life,
> relatively free from serious health problems. But I know without a doubt
> that my life is only going to get harder going forward. And not just a
> little bit harder, but a lot harder. I lost my dad last year, and mom is
> not getting any younger. 35 years of quad-dom is quite enough for me.
> Anything beyond this point is just the credits rolling. I'll enjoy what I
> can, but I'm not willing to spend my remaining days recovering from colon
> surgery and/or chemotherapy should I be diagnosed.
>
> Having said all that, my dad was diagnosed with colon cancer when he was
> 58. They discovered it during another surgical procedure, brought him out
> of anesthesia, broke the news, had him sign some papers, put him back
> under, and removed a sizable length of his colon. He then underwent
> chemotherapy, and it was a terrible two year ordeal. BUT, he survived,
> eventually felt much better, and lived another 20 years in good health. All
> of us were glad he chose to fight it. That is of course a personal decision.
>
> Good luck with the colonoscopy. If you receive good news from the
> procedure, and you are anything like me, you will come out of it feeling
> better for having cleaned yourself out, maybe lost a few pounds, and you
> will vow to do better going forward, to eat better, and take better care of
> yourself. And if you're anything like me, you will be wolfing down a pizza
> and chugging a couple tallboys by the end of the week. I look forward to
> hearing your good report.
>
> Greg
>
>
> On Sun, Aug 21, 2022 at 5:58 PM Greg  wrote:
>
> Recently had a positive Cologuard Test. So doing a colonoscopy next week.
> I almost said no.  I just can't handle the prep. Drinking that nasty stuff.
> But the Doc said I could do just pills and water. 12 pills lots of water,
> 12 more pills, lots more water.
>
> They do have a 13% false positive, but if not, lets hope its not far
> along. Not sure I'd do Chemo.
>
> Greg
>
>

Re: [QUAD-L] Colon Cancer

[Eric Olson]

So sorry to hear that Greg.  I would rather not know.  I know that is a
very stick my head in the sand approach, but it is what it is as they say.
I actually see my doctor tomorrow and if he brings it up, I'm going to tell
him the cleaning out part would be too much.  I'm 55 and he hasn't
mentioned it, so I don't expect him to bring it up.   Praying It's a false
positive

On Sun, Aug 21, 2022 at 6:18 PM Danny Hearn  wrote:

> I get what your saying Greg, my docs keep wanting me to take the cologuard
> test and etc, I just tell them I'm not interested...after 25 years as a
> quad and with all my pain and health issues, I would not want to go thru
> any treatments or chemo. Hope it was just a false positive for you. ( Did
> you ever find out what was causing all your breathing issues a while back??
> )   Dan H***
>
> On Sunday, August 21, 2022 at 05:58:19 PM CDT, Greg 
> wrote:
>
>
> Recently had a positive Cologuard Test. So doing a colonoscopy next week.
> I almost said no.  I just can't handle the prep. Drinking that nasty stuff.
> But the Doc said I could do just pills and water. 12 pills lots of water,
> 12 more pills, lots more water.
>
> They do have a 13% false positive, but if not, lets hope its not far
> along. Not sure I'd do Chemo.
>
> Greg
>
>

Re: [QUAD-L] Phoenix Disability Expo

[Eric Olson]

I usually go to the Chicago expo every year.  It's free and something to
do.  There is usually at least one workshop that I will find interesting.
I went to a workshop on medical marijuana a couple years ago and one on
cell phones features for people with disabilities.  I actually subscribe to
the disability expo newsletter.  That's more valuable than going to one
expo.  That's how I found out about this   https://handicup.com/  best cup
holder ever

On Mon, Aug 1, 2022 at 9:01 PM Greg  wrote:

> Anyone of you guys going to the Phoenix Disability Expo?
>
> I haven't been to one in about 15 years. I'm about 40 years post. If I'm
> not really looking for anything specific, are they worth going to?
>
>
> Greg
>

Re: [QUAD-L] 33 years

[Eric Olson]

Nice!  I still remember when we met a couple DECADES ago!  My world is a
better place because of you James.  Thanks

On Wed, May 18, 2022 at 2:38 AM Jeffrey Gaede  wrote:

> Life is good… Congrats, Jim.
> Jeff
>
> On Wednesday, May 18, 2022, 12:07:48 AM PDT, Dana Wray 
> wrote:
>
>
>
> Congratulations Jim,
> I am so proud of everything you have done for the disability community.
> You’re so special and a joy to know and learn from.
> Always,
> Dana Wray
> On Tue, May 17, 2022 at 7:33 PM Danny Hearn  wrote:
>
> Congrats Jim. You have been an inspiration to many, including having
> this List and many Sites you have told us about through the years-God Bless
> You !   Dan H***  C-6  Quad, almost 25 years post.
>
> On Tuesday, May 17, 2022, 07:20:00 PM CDT, Jim Lubin 
> wrote:
>
>
> Today marks 33 years since my transverse myelitis onset. I woke up with a
> pain in my shoulder. Two hours later I could not remain able to stand and
> then stopped breathing. I have been paralyzed from the neck down and
> dependent on a ventilator to breathe to keep me alive ever since. I am
> otherwise in great health and not in pain, so life is good.
>
>

Re: [QUAD-L] Constant sweating

[Eric Olson]

Any one of those things could cause sweating.  For me, sweating is usually
a sign of AD.  My gallbladder is full of stones too.  Has been for 35
years.  My doctor said, "ff you're ever really sick and they don't know
why, tell them you have gallstones."  Gee thanks.  I know at some point, it
will start causing me problems.  For now, if it ain't broke, don't fix it
right?  Your shoulder situation is a little scary.  It could definitely
cause sweating, but if you're not in pain... I wonder if the inaction on
your shoulder is because you're a quad.  I think if you were able bodied,
they would try to fix it.  Nobody wants to have surgery, but if it impacts
your quality of life... Tough call.

On Sun, Feb 20, 2022 at 9:58 PM Toby Ausbun 
wrote:

> My body has been sweating constantly for a yr now some days aren’t
> terrible in my chair but I’ve got a lot of things wrong with me my arm is
> dislocated and they can’t put it back in because of arthritis,rotator
> cuff’s torn in half,gallbladderfull of stones what do i do I’ve been a c4
> complete and cant take it much longer like this would take any
> suggestions???
>
> Sent from my iPad
>

Re: [QUAD-L] 10 Work From Home Careers You Should Know About

[Eric Olson]

Thanks so much!

On Wed, Jan 19, 2022 at 10:42 AM Jim Lubin  wrote:

> https://www.makeuseof.com/work-from-home-careers-to-know/
>

Re: [QUAD-L] Re: Testing my email

[Eric Olson]

I just meant how many people are actually subscribed to the list.  I think
most of the people that were on the list at one time have moved on to
social media.  Shame.

On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:

> As in? Quadriplegics? Tetraplegics?
>
> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> I often wonder how many of us there are.
>
> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
> wrote:
>
> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>
>

Re: [QUAD-L] Re: Testing my email

[Eric Olson]

I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
wrote:

> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>

Re: [QUAD-L] Breathing Probnlem

[Eric Olson]

How frustrating!  I wish I had answers or even suggestions.  When you first
told us about this, I thought it was a heart problem.  I'd suggest a second
opinion, but it sounds like you've already done that.  I know this doesn't
help but I'm praying for you

On Mon, Jan 3, 2022 at 6:53 PM Greg  wrote:

>
> Just spent another three days in the hospital because of my breathing
> problem. I'm having a hard time inhaling without there being heavy
> pressure. And breathing like I just run a marathon. This time they did
> another CAT scan and at least found out my lung blood clots are gone. They
> also did a heart Echo, an ultrasound of my heart and it came out fine. They
> also did a sniff test, and it showed my diaphragm was pretty good. When I
> breathe feels like a rubber band around my chest. Then I start breathing
> very heavy and my shoulders go up and down just cuz it's so hard to
> breathe. It started seven or eight months ago, right after I had an
> ablation of my heart to fix a flutter. I had to be intubated, and right
> when I came out I was breathing like this and they thought I had too much
> CO2. So I was on a respirator for a week or so. But after that I still have
> the breathing issues. Since then I've had to be on a respirator at night
> just to help me breathe easy enough to sleep.
>
> I've been to at least three lung doctors, a couple different heart
> doctors, the neurologist, a blood doctor, the quad doctor. No one can
> figure it out.
>
> I thought maybe it was just getting older, muscles and lungs getting old,
> and my spine is curving a bit, but it happened so fast right after the
> heart ablation.
>
> I am scheduled for one more test, a stress test on my heart, I just hope
> they can find something. I can't keep breathing like this it's constantly
> hard to breathe and then gets really hard times. Like I've run a marathon
> with someone sitting on my chest.
>
> About 3 years ago I had a pleural effusion, where fluid fills up between
> your lungs. It kept coming back and I wood drain about a liter and a half a
> fluid once or twice a week. But I had a procedure to fix it. I keep saying
> that's what it feels like, but they all keep saying there's no fluid
> anymore in there.
>
> I get so exhausted just typing a few words, haven't been able to go out
> for almost 3 years. Just too tired and breathe too hard.
>
> Any ideas,
>  thanks Greg
>
>

Re: [QUAD-L] Vaccine boosters

[Eric Olson]

I think technically you could get any of the boosters.  No one can tell you
what to expect because everyone's immune system is different.  They can
only tell you what their reaction was.  I had no reaction to the booster,
but I didn't have a reaction to either of the first two shots which annoys
the hell out of my wife 

On Sun, Nov 21, 2021 at 5:14 PM Danny Espinoza 
wrote:

> Hey I've got the johnson and johnson vaccine but not the booster yet...
> What can I expect when I get the J booster shot?
>

Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Eric Olson]

My wife got her booster last week.  It hit her pretty hard.  She felt flu
like for about a day, but felt fine the day after that

On Sat, Oct 16, 2021 at 2:19 AM Dana Wray  wrote:

>
> I got my flu shot today and they want to come back into weeks and give me
> my Johnson’s and Johnson’s Booster. What does everybody think about the
> booster? I hear so many conflicting stories I would send them to the
> Quad-list but they are all on a website that you have to belong to.
> On Mon, Oct 11, 2021 at 11:12 AM DAVID LEWIS 
> wrote:
>
>> hi, i got my Phizer booster shot last week because Quads are at high risk
>> because they dont have the stomach muscles to cough and get the phlem up.
>> Be safe and get it.
>> On Monday, October 11, 2021, 01:38:46 AM EDT, Dana Wray <
>> daano...@gmail.com> wrote:
>>
>>
>> I called my Johnson County health nurse and she's going to bring me a flu
>> shot and she said the booster for the Johnsons and Johnsons would be out in
>> a couple weeks. I don't know what I think about that. What does everybody
>> think about the booster shot. I want to learn more information about the
>> shot you could you live better towards before I take it. We are advised to
>> take because of our age, our immune system and I am such high risk for
>> kidney infections because of my ileoconduit. It is more open to bacteria.
>>
>> I wanted to share with you a new toothpaste that makes your teeth feel
>> great. It is Crest gum and sensitivity all the protection it is the
>> prohealth Crest. I have been using fluoride from my doctor for at least
>> five years. My prescription ended because I have to start a new dentist
>> this month. I am 68 and we usually get recession as we get older.
>> Dana C4-5 complete, ileoconduit, tracheostomy
>>
>> I am fighting sores on my heel where there was skin graft that easily
>> gets hit transferring into bed, and the area where your bottom and upper
>> leg connect. A caregiver broke my hip decades ago and as my hip joint
>> disintegrated, it makes me lean to the left. This causes pressure on the
>> right side of my body at that area. I have severe altar process and wasn't
>> able to get surgery on my foot after I got gangrene after a foot drop
>> surgery, the fixed Savior was too tight. I lost all of the fat on my heal.
>> After wound VAC for two months and a skin graft. It often gets a sore on
>> the skin graft that is very difficult to heal. I'm using Venelux on each
>> area, but it doesn't seem to be solving the problem. Does anybody else have
>> any suggestions? There is no padding on my heel, just bowed in the skin
>> graft. Thank you for any information you can provide..
>>
>>
>>
>> On Thu, Sep 30, 2021 at 11:13 PM Dana Wray  wrote:
>>
>> Thank you so much for that video, that is helpful to show caregivers. I
>> have a trach so, I usually get suctioned. Dana
>>
>> On Thu, Sep 30, 2021 at 7:56 PM Greg  wrote:
>>
>> they gave me one.
>> age 57
>>
>>
>> greg
>>
>> On 9/21/2021 9:45 AM, DAVID LEWIS wrote:
>>
>> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>>
>>
>>

Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Eric Olson]

CORRECTION  Only the booster for the Pfizer vaccine has been approved.
Approval for a booster for Moderna and Johnson & Johnson is  expected
within the next few weeks

On Wed, Sep 22, 2021 at 11:04 AM DAVID LEWIS  wrote:

> Thank you everyone. That was real helpful.
>
> On Tuesday, September 21, 2021, 06:20:11 PM EDT, Don Price <
> donpric...@yahoo.com> wrote:
>
>
> The inability to cough puts us quads at greater risk of any respiratory
> virus, including covid. You'll want to consult your doctor, but I just
> rolled into the nearest Walgreen's that had Moderna (my vaccine) and told
> them I wanted a booster. I filled out a short questionnaire and then
> received the shot. The whole process took about 20 minutes. I had no
> adverse effects from the booster other than a sore arm at injection site.
>
> There's been a lot of mixed messaging regarding the booster. Do your
> research and then do what you're comfortable with. Your body, your health.
>
> I wish you all happiness and health!
>
> Don.
>
> PS. I hope everyone knows how to do assisted coughing. If not, here's a
> video explaining the technique. I highly recommend you and your caregivers
> watch this. https://www.youtube.com/watch?v=cmzZkdACei4
>
>
>
> On Tuesday, September 21, 2021, 11:17:30 AM MST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> Someone on the list said they just rolled into their local CVS and asked
> for it.  Technically, they are not allowed to ask health questions.  You're
> eligible 6 months after your second dose of the original vaccine.  Make
> sure you get the same vaccine as before Moderna / Pfizer and make sure they
> know it's the booster if you got Moderna.  The Moderna booster is a half
> shot
>
> On Tue, Sep 21, 2021 at 11:45 AM DAVID LEWIS 
> wrote:
>
> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>
>

Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Eric Olson]

Someone on the list said they just rolled into their local CVS and asked
for it.  Technically, they are not allowed to ask health questions.  You're
eligible 6 months after your second dose of the original vaccine.  Make
sure you get the same vaccine as before Moderna / Pfizer and make sure they
know it's the booster if you got Moderna.  The Moderna booster is a half
shot

On Tue, Sep 21, 2021 at 11:45 AM DAVID LEWIS  wrote:

> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>
>

Re: [QUAD-L] breath

[Eric Olson]

Let's hope the EMG shows something.  Unfortunately, if it is your
diaphragm, you will be stuck with the bipap.  At least you will have an
answer

On Tue, Sep 14, 2021 at 6:29 PM Greg  wrote:

> One more test done, that does not show what is causing my breathing
> problem. First they were sure it was CO2 buildup, so they put me on a
> BiPAP. Then they thought it was weak lungs. Then they heart issues. But
> those were both cleared buy a lung doctor and cardiologist. Then they were
> sure it was low iron, but now at 3 Iron IVs with two more to go, but so far
> no change. The hematologist said that's probably not the cause now. The
> last test they can think of is the EMG test I do next week. They will test
> the diaphragm. I just feel out of breath, heavy chested, like I've run a
> marathon with a belt across my chest very tight. I was perfectly fine until
> I had the heart ablation. I use a ventilator at night sometimes during the
> day just to make it easier to breathe. Just a little help on my inhale
> makes me feel fine. I just hate wearing that mask. No one else has any
> ideas, and it's getting very frustrating.
> greg
>

Re: [QUAD-L] Personally

[Eric Olson]

Wait...you mean I have a choice?  All this time I thought I was just lazy
lol

On Tue, Sep 14, 2021 at 2:15 PM Julie Napper  wrote:

> Sometimes if somebody calls me on the phone and says what are you doing, I
> say "just sitting around". Or laying around, if I'm in bed.
>
> Julie
> C4-5
>
> Sent from my Galaxy Tab A
>
>
>
>  Original message 
> From: Michelle Harkness 
> Date: 9/14/21 12:09 PM (GMT-07:00)
> To: Danny Hearn 
> Cc: Quad-list post , Amy Elizabeth Baldwin's Poetry
> 
> Subject: Re: [QUAD-L] Personally
>
> I’ve used it in job interviews before - said I excel at sitting.  I
> think I’ve gotten all of the jobs I’ve used that at too!  I do sit around
> all day too, but I’m usually working on my computer while doing so as well.
> (Hazards of having 2 jobs and working from home I guess). 路‍♀️
>
> Michelle
> C5, post almost 28 years (a few days shy yet)
>
>
> On Sep 14, 2021, at 2:06 PM, Danny Hearn  wrote:
>
> 
> I joke about how I sit all day..and I have done nothing for so long
> now, that I have actually got Quite Good at It !  Really though- I miss
> doing things around my home, yard work and landscaping & things like that.
>  Dan H***
>
> On Tuesday, September 14, 2021, 01:58:06 PM CDT, Amy Elizabeth Baldwin's
> Poetry  wrote:
>
>
> Hello everyone, it has been a long time since I have posted on here. But
> my mom and I were just joking about how I sit all day.
> Do any of you do that?
> Thanks, Amy
>
>

Re: [QUAD-L] Lori Michaelson

[Eric Olson]

t;> what became of her beloved dog.
>>
>>
>>
>>
>>
>>
>>
>>
>>
>> Sent from my iPhone
>>
>> On Sep 4, 2021, at 5:28 PM, Jeffrey Gaede  wrote:
>>
>> 
>> Wow! Thank you!
>>
>> On Saturday, September 4, 2021, 03:00:52 PM PDT, Julie 
>> wrote:
>>
>>
>> https://www.tributearchive.com/obituaries/22137694/lori-sue-michaelson
>>
>>
>>
>>
>>
>> *From:* Jeffrey Gaede 
>> *Sent:* Saturday, September 4, 2021 3:46 PM
>> *To:* 'Michael Galvin' ; quad-list@eskimo.com;
>> 'Eric Olson' ; Nichole Rohling <
>> zoocr...@windstream.net>
>> *Subject:* Re: [QUAD-L] Lori Michaelson
>>
>>
>>
>> Not only what happened to her but can someone give me some background on
>> Lori. I've been on and off Quad-list for 15-20 years, I definitely remember
>> her name but not much else. Can someone provide some background please.
>>
>>
>>
>> On Saturday, September 4, 2021, 12:29:36 PM PDT, Nichole Rohling <
>> zoocr...@windstream.net> wrote:
>>
>>
>>
>>
>>
>> Michael
>>
>>
>>
>> Do you have any idea what happened to her?
>>
>>
>>
>> Nicki
>>
>>
>>
>> *From:* Eric Olson [mailto:whee...@wi.rr.com ]
>> *Sent:* Saturday, September 4, 2021 1:23 PM
>> *To:* Nichole Rohling
>> *Cc:* Danny Hearn; Quad-list Post
>> *Subject:* Re: [QUAD-L] Lori Michaelson
>>
>>
>>
>> Wow  I was just going to email her about her live in also.  Do you know
>> what happened?
>>
>>
>>
>>
>>
>>
>>
>> On Sat, Sep 4, 2021 at 12:53 PM Nichole Rohling 
>> wrote:
>>
>> I was just talking about her this week. I hate to hear this.
>>
>>
>>
>> Nicki
>>
>>
>>
>> *From:* Danny Hearn [mailto:ddh...@sbcglobal.net]
>> *Sent:* Friday, September 3, 2021 8:04 PM
>> *To:* quad-list@eskimo.com; Michael Galvin
>> *Subject:* Re: [QUAD-L] Lori Michaelson
>>
>>
>>
>> Wow, Sad to hear this about Lori..I have been wondering about her
>> lately, I know she was concerned about needing a new care-giver and worried
>> about her Dog if she had to go into a living type center.  Thanks for
>> letting us know.  Dan H. ***
>>
>> On Friday, September 3, 2021, 07:53:31 PM CDT, Michael Galvin <
>> whatsu...@gmail.com> wrote:
>>
>>
>>
>>
>>
>>
>>
>> I have not seen it on the quad list, and I'm not sure if people already
>> know, but Lori Michaelson passed away a few weeks ago.
>>
>>
>>
>> She will be missed.
>>
>>
>>
>> PQ
>>
>>

Re: [QUAD-L] Lori Michaelson

[Eric Olson]

Wow  I was just going to email her about her live in also.  Do you know
what happened?

On Sat, Sep 4, 2021 at 12:53 PM Nichole Rohling 
wrote:

> I was just talking about her this week. I hate to hear this.
>
>
>
> Nicki
>
>
>
> *From:* Danny Hearn [mailto:ddh...@sbcglobal.net]
> *Sent:* Friday, September 3, 2021 8:04 PM
> *To:* quad-list@eskimo.com; Michael Galvin
> *Subject:* Re: [QUAD-L] Lori Michaelson
>
>
>
> Wow, Sad to hear this about Lori..I have been wondering about her
> lately, I know she was concerned about needing a new care-giver and worried
> about her Dog if she had to go into a living type center.  Thanks for
> letting us know.  Dan H. ***
>
> On Friday, September 3, 2021, 07:53:31 PM CDT, Michael Galvin <
> whatsu...@gmail.com> wrote:
>
>
>
>
>
>
>
> I have not seen it on the quad list, and I'm not sure if people already
> know, but Lori Michaelson passed away a few weeks ago.
>
>
>
> She will be missed.
>
>
>
> PQ
>

Re: [QUAD-L] Covid and Vaccine

[Eric Olson]

I think side effects for Moderna and Pfizer are fairly similar.  I've never
heard of anyone having side effects from the first shot.  It seems like if
you have a reaction, it's going to happen after the second shot.  Here's
what happened with my family.  I had Moderna and didn't have any side
effects.  My wife and mother (82) had Moderna and the day after the second
shot, they were both really fatigued.  My wife slept most of the
afternoon.  My daughter's (15) experience was exactly the same as my wife
and she had Pfizer.  My dad (82) seems to have had it the worst.  He had a
fever (99.8) and felt flu-like for 4 or 5 days.  When you get vaccinated,
they give you a slip of paper listing the common side effects and what
percentage of people had said side effects.  I remember arm pain was 98%.
I don't remember the percentages for other side effects but they were all
flu-like symptoms.  So things like fever, body aches, chills, etc.  My
brother had Johnson and Johnson but I don't talk to him all that much so I
don't know if he had any side effects

On Tue, Aug 31, 2021 at 4:03 PM Nichole Rohling 
wrote:

> Just curious if anyone has had Covid and how did you feel, symptoms, etc.
>
> If you got vaccine which did you get? Did you have a reaction?
>
>
>
> Nicki
>
> C5/6
>

Re: [QUAD-L] Stuck Again

[Eric Olson]

Hey Greg,

Been thinking about your breathing problems.  Is it harder to breathe when
you lie flat?  Are you sure this isn't cardiac related?

On Fri, Jul 30, 2021 at 2:27 PM Greg  wrote:

>
> I think I might be a little psychic. I wrote the below message about 2
> hours ago on my tablet so I can use the voice typing easier. Then I forward
> it to my Facebook, then copy it to an email. But before I could send it, I
> got stuck AGAIN. This time I was out front and I hit my recline button, but
> when I let go, it kept reclining. Then none of the buttons work. I was able
> to yell and get help, but nothing they could do. I had to call the fire
> department so they could get me inside and into bed. There's no way my
> reclining chair would fit around the corners. But the fireman played around
> with the wires and it started working. Thank God. I'd hate to be stuck in
> bed for who knows how long. I'd have to get a prescription, send it to the
> repair place, get the appointment, have them look at it, order parts, then
> schedule another appointment to have it fixed. I hate dealing with
> insurance. Being that you need a wheelchair you should just be able to go
> straight up there without all that waiting.
>
> This was my earlier message.
>
> I was sitting out front today, I decided to put the smell set of weight on
> my wrist. I had an iced coffee in one hand and I hit the recline button
> with the other. But when I tried to hit the recline button to sit back up
> my fingers got caught in the recline button cable. With a little extra
> weight on my hand I was not able to get to the button. I tried to use my
> other hand to hook on the armrest for leverage, but it slipped off and my
> hand went to my shoulder with the coffee cup upside down. Luckily I was
> able to knock the coffee cup off my hand and hook my arm rest for better
> Leverage and got to my recline button. Lucky it didn't take too long it's
> about a hundred degrees out and who knows how long I would have laid there.
>
> Got me thinking, I think I've been stuck like that or similar 3 times.
> Been stuck in gravel many times but not like that. Once I was on my way
> home and I tipped forward and couldn't sit back up. I laid with my head in
> my lap until a bicyclist came by and helped me to sit up. Another time
> would like today without the weights, but I was stuck I could reach the
> button, and yelled until finally a neighbor heard me. I think the worst
> one, was when I was going out the back door one wheel went over the
> threshold the the bump made me fall forward, and I was jammed in the
> doorway, it was about a hundred ten degrees out. I was there for so long
> and got overheated. At least I've learned to always wear my chest strap
> even when I'm home and families in the house. I just can't yell loud enough.
>
> Greg
>

Re: [QUAD-L] Vent ?

[Eric Olson]

Wait - when did you have a trach put in?  I feel for you.  I remember
people on the vent users list complaining that too much air was leaking out
from the mask.  I think I remember someone going to a dentist, if I'm
remembering correctly, and having a mask custom molded to his face.  I
remember someone saying they switched to nasal pillows.  It sounded like it
was a constant struggle with the masks.  Wish I had better news.  You said
you were having trouble breathing around the trach.  You really need to
talk to your doctor about this . Do you have a pulse oximeter?  You can get
one on Amazon.  They are not very expensive.  That will allow you to check
your O2 levels at any time.  People with sleep apnea have a hard time
getting used to the mask.  Maybe you'll just get used to it with time?
Like Jim, I lost the ability to breath instantaneously so there was never a
getting used to it phase.  Good luck

On Thu, Jul 22, 2021 at 1:39 PM Greg  wrote:

> you guys on vents ever get use to it?
> I have to use one at night, I use a face mask not trach. I just can't get
> the breathing to match mine good enough. Plus the face mask is just too
> much. I keep trying different kinds.
>
> I dont want the trech, when its not on, just the trech tube in the throat
> blocks too much air.
>
> Greg
>

Re: [QUAD-L] Exhausted

[Eric Olson]

Well that sucks.  Hope you get some answers

On Tue, Jun 8, 2021 at 3:52 PM Greg  wrote:

>
> Still having a helluva problem breathing. I had a heart ablation, they
> use anesthesia and intubated me. The procedure was pretty simple, but
> when I woke up I was out of breath and breathing very hard. They thought
> the anesthesia just paralyzed my diaphragm for a little while. It's
> going on three weeks or so and things seem to be getting worse. They
> also thought it was too much CO2 in my blood because my breathing was so
> shallow. That seems to be getting better, I still get out of breath very
> easy. I can write about four words but then I'm exhausted. Or I can eat
> about two bites and I have to recline because I'm so exhausted. My vital
> statistics are all great blood pressure, oxygen levels, breathing well
> up in my chair, heart rate. The cardiologist and the lung doctor say
> everything looks good. But just laying in bed makes it hard to breathe
> and I need to use a respirator at night. Sometimes during the day when I
> feel bad. When I'm up in my chair I feel like I breathing just as well
> as normal. Just nothing makes sense. I was back in the ER last week and
> spent three days doing test. And they find nothing. Does anyone have
> sleep apnea? How tired you get throughout the day before you used to
> CPAP. The sleep studies the only thing I haven't had yet, but I know my
> breathing is very shallow at night. I just wouldn't think I could be
> that exhausted from sleep apnea. But maybe.
>
> Greg
>
>

Re: [QUAD-L] 53th "Quad-anniversary"

[Eric Olson]

Wow!  That's awesome!

On Mon, Jun 7, 2021 at 8:04 PM Danny Hearn  wrote:

> I'm impressed too !  I'm almost to my 24 year mark, and that seems like it
> has been forever, lol.  I have a question, has anyone heard from Ron
> Pracht, a fellow quad on our list? He lived not real far from me here in
> Missouri, I have tried to contact him on his old email but never got any
> replies back--Anyway Just wondering and hope he is okay.  thanks, Dan H***
>
> On Monday, June 7, 2021, 07:32:08 PM CDT, Jeffrey Gaede 
> wrote:
>
>
> I'm impressed. I thought my 42 years was pretty lengthy.
> Jeff
>
> On Monday, June 7, 2021, 03:55:26 PM PDT, Nichole Rohling <
> zoocr...@windstream.net> wrote:
>
>
> Congrats Nancy! This year will be 23 for me.
>
>
>
> Nicki
>
> C5/6
>
>
>
> *From:* Nancy [mailto:nlgil...@aol.com]
> *Sent:* Monday, June 7, 2021 5:23 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] 53th "Quad-anniversary"
>
>
>
> Today is my 53th "Quad-anniversary". There were times that I thought I'd
> never make it to this day, but, I'm alive, and ready to try for a few
> more years! Life is good!
>

Re: [QUAD-L] no mail

[Eric Olson]

Still need the CPAP?

On Sun, Jun 6, 2021 at 3:04 PM Greg  wrote:

> No mail for awhile, Still working?
>
> Greg
>

Re: [QUAD-L] Hospital

[Eric Olson]

Bummer hopefully it won't be permanent.  You've probably seen the
commercials and it is important to keep your CPAP clean
https://www.cleanzonenow.com/

On Sat, May 8, 2021 at 5:56 PM Greg  wrote:

> I had to do another ablation on my heart, I did one before that was for
> AFib, now I had to do one for AFlutter. This one didn't go so well. The
> procedure went fine, but the anesthesia was hard on my diaphragm. So I
> wasn't exhaling enough CO2. So my CO2 levels went way too high. I ended up
> in the hospital for another 8 days. They had to put me on a BiPAP machine
> to help me breathe. I'm feeling better but I'm still not breathing good
> enough on my own so I still have to use the BiPAP at night and on and off
> throughout the day. I hate wearing that mask. I just cant get the breathing
> timing right.
>
>
> Greg
>
>
>

Re: [QUAD-L] Another question for SP users

[Eric Olson]

 Are you in a different position during the day?   When is your next
catheter change?

On Sat, May 1, 2021 at 12:54 PM Lori Michaelson 
wrote:

> Definitely Eric and I hope my next catheter change will make a difference.
> Why it does not happen during the day is beyond us including me.
>
> On Sat, May 1, 2021 at 10:51 AM Eric Olson  wrote:
>
>> Nothing worse than waking up in a puddle of your own piss.  I think that
>> sometimes the catheter gets up against the bladder wall in a funky way and
>> just doesn't drain well.  I always start simple by changing the catheter.
>>
>> On Fri, Apr 30, 2021 at 3:22 PM Danny Hearn  wrote:
>>
>>> Wow, Lori that does sound strangedo you think the catheter is in
>>> place correctly and the little balloon that holds it in bladder is inflated
>>> right? I'm a male so not sure if there is a difference with the SP or not.
>>> We change my catheter about once a month or at 5-6 weeks at longest. You
>>> have probably already tried a fresh catheter change but if not perhaps that
>>> could help? Hope you can get it figured out...Us Quads have enough to worry
>>> about as it is. Dan H.***
>>>
>>> On Friday, April 30, 2021, 03:06:41 PM CDT, Lori Michaelson <
>>> lorilivin...@gmail.com> wrote:
>>>
>>>
>>> When I went to my urologist's office for my January 22nd of this year
>>> (as expected for my every 6 month appointment with him) and he said that
>>> everything looked great and instead of seeing him every 6 months I should
>>> not need to see him for another year. I was going to him every 6 months to
>>> see him and have him do a cystoscopy to make sure there were no more
>>> 'growths' or 'polyps' that was found several years ago and was superficial
>>> bladder cancer. I did not feel bad or expect the following:
>>>
>>> Less than 2 months later and me not having any problems... on April 16
>>> in the morning I was laying in a bunch of pee. Just out of the blue and
>>> absolutely no reason for it. And it kept coming and mostly in the evening
>>> after laying down and we never knew what to expect the following morning.
>>> For one example, as I was doing my care this morning, I felt the pressure
>>> of me not urinating through the catheter and, sure enough, it was like a
>>> fountain in the air.
>>>
>>> I made an appointment on April 21st to see my urologist and he was as
>>> surprised as I was. I have always taken oxybutynin 5mg extended release 3
>>> times a day. On Wednesday before my appointment at the end of January of
>>> this year I was doing great (physically for the most part) and had no
>>> problems with my bladder, spasms or anything else. I have really enjoyed
>>> this urologist and he is great. Another member of the Quad list has him and
>>> he likes him too.
>>>
>>> He gave me several boxes of Toviaz to try (which I did for a good week)
>>> but it did not help.
>>>
>>> I was the symptomatic of a UTI but they wanted me to take a couple of
>>> antibiotics for what was in my urine and had been off and on for years.
>>> This week they said they were going to: antibiotic but never did. Then
>>> wrote out a script for Myrbetrig (another script for bladder spasms) and
>>> the co-pay for that was over $300!!!
>>>
>>> I asked my insurance what was the most inexpensive bladder spasm
>>> medications and they said it would be Tolterodine  4 mg extended release
>>> once a day. My co-pay was around $31 for 30 days. I started it yesterday at
>>> dinner time.
>>>
>>> Last evening  there was some leaking but not like this morning which was
>>> having it spurt up in the air like a fountain of urine.
>>>
>>> I have never experienced this before. I need 2 chux on my bed, a large
>>> heavy duty paper and one ABD pad that I was going to stop ordering because
>>> I had always been having large amounts of vaginal discharge but that
>>> discontinued quite a while ago. Now I need them.
>>>
>>> Have any of you with SP catheters experienced this? I am actually
>>> stunned with this coming on so quickly and continuing.
>>>
>>> Thanks!
>>>
>>> --
>>> “Petting, scratching, and cuddling a dog could be as soothing to the
>>> mind and heart as deep meditation and almost as good for the soul as
>>> prayer.” ― Dean Koontz
>>>
>>
>
> --
> “Petting, scratching, and cuddling a dog could be as soothing to the mind
> and heart as deep meditation and almost as good for the soul as prayer.”
> ― Dean Koontz
>

Re: [QUAD-L] Another question for SP users

[Eric Olson]

Nothing worse than waking up in a puddle of your own piss.  I think that
sometimes the catheter gets up against the bladder wall in a funky way and
just doesn't drain well.  I always start simple by changing the catheter.

On Fri, Apr 30, 2021 at 3:22 PM Danny Hearn  wrote:

> Wow, Lori that does sound strangedo you think the catheter is in place
> correctly and the little balloon that holds it in bladder is inflated
> right? I'm a male so not sure if there is a difference with the SP or not.
> We change my catheter about once a month or at 5-6 weeks at longest. You
> have probably already tried a fresh catheter change but if not perhaps that
> could help? Hope you can get it figured out...Us Quads have enough to worry
> about as it is. Dan H.***
>
> On Friday, April 30, 2021, 03:06:41 PM CDT, Lori Michaelson <
> lorilivin...@gmail.com> wrote:
>
>
> When I went to my urologist's office for my January 22nd of this year (as
> expected for my every 6 month appointment with him) and he said that
> everything looked great and instead of seeing him every 6 months I should
> not need to see him for another year. I was going to him every 6 months to
> see him and have him do a cystoscopy to make sure there were no more
> 'growths' or 'polyps' that was found several years ago and was superficial
> bladder cancer. I did not feel bad or expect the following:
>
> Less than 2 months later and me not having any problems... on April 16 in
> the morning I was laying in a bunch of pee. Just out of the blue and
> absolutely no reason for it. And it kept coming and mostly in the evening
> after laying down and we never knew what to expect the following morning.
> For one example, as I was doing my care this morning, I felt the pressure
> of me not urinating through the catheter and, sure enough, it was like a
> fountain in the air.
>
> I made an appointment on April 21st to see my urologist and he was as
> surprised as I was. I have always taken oxybutynin 5mg extended release 3
> times a day. On Wednesday before my appointment at the end of January of
> this year I was doing great (physically for the most part) and had no
> problems with my bladder, spasms or anything else. I have really enjoyed
> this urologist and he is great. Another member of the Quad list has him and
> he likes him too.
>
> He gave me several boxes of Toviaz to try (which I did for a good week)
> but it did not help.
>
> I was the symptomatic of a UTI but they wanted me to take a couple of
> antibiotics for what was in my urine and had been off and on for years.
> This week they said they were going to: antibiotic but never did. Then
> wrote out a script for Myrbetrig (another script for bladder spasms) and
> the co-pay for that was over $300!!!
>
> I asked my insurance what was the most inexpensive bladder spasm
> medications and they said it would be Tolterodine  4 mg extended release
> once a day. My co-pay was around $31 for 30 days. I started it yesterday at
> dinner time.
>
> Last evening  there was some leaking but not like this morning which was
> having it spurt up in the air like a fountain of urine.
>
> I have never experienced this before. I need 2 chux on my bed, a large
> heavy duty paper and one ABD pad that I was going to stop ordering because
> I had always been having large amounts of vaginal discharge but that
> discontinued quite a while ago. Now I need them.
>
> Have any of you with SP catheters experienced this? I am actually stunned
> with this coming on so quickly and continuing.
>
> Thanks!
>
> --
> “Petting, scratching, and cuddling a dog could be as soothing to the mind
> and heart as deep meditation and almost as good for the soul as prayer.”
> ― Dean Koontz
>

[QUAD-L] tattoos

[Eric Olson]

  
  
Any of you with a SCI ever get a tattoo?  Did it cause
  disreflexia?

  

  

Re: [QUAD-L] Supra pubic catheter

[Eric Olson]

I have blood around the stoma all the time because my body keeps forming
"granulation tissue" around the stoma.  Basically, my body is trying to
close the stoma.  It is an artificial hole after all.  Maybe that's what's
going on with you?  Have someone look closely at the hole to see if there's
any tissue building up.  Might be easier to visualize when the catheter is
out though.  That said, all my bleeding has been around the stoma on the
outside.  I've never had enough blood inside my bladder to change the color
of my urine.  Monitor it for a couple days but don't wait too long.
Unfortunately, a catheter does increase one's chances for bladder cancer

On Sat, Apr 17, 2021 at 4:37 PM C H  wrote:

> I’ve had a Supra pubic catheter since 2009. Paralyzed since 2008.  The
> catheter itself was changed out this past Thursday. When the nurse took the
> catheter out blood was dripping from the hole. This has never happened
> before. I’ve had a little bit of blood for one to several days in my urine
> after a catheter change many times through the years. But never had
> anything like this happen. Today it is dripping from where the catheter
> goes in. My urine looks like dark raspberry tea. Has anyone ever
> experienced the dripping blood before?
>
> Sent from my iPhone
>

Re: [QUAD-L] Bowel Routine Help. Where do i find someone?

[Eric Olson]

These are just a few sites I had bookmarked.  The care.com site has a
"special needs" heading.  I would contact your local Independent Living
Center and see if they can help.  I use Indeed.com.  You'll have to pay
through the nose to post an ad though

https://www.carelinx.com/  https://www.care.com/
http://assistantpages.com/

On Wed, Mar 31, 2021 at 3:19 PM DAVID LEWIS  wrote:

> Can anyone give me help on what you guys do if you dont have  a close
> loved one to give you the suppository to help you go poo.?
> Who do you turn too?  Will a nurse help you?
> Please guys tell me what you do,
> Thanks so much
>

Re: [QUAD-L] Bed/Mattress Question

[Eric Olson]

Sorry Nancy, I just sleep on a memory foam mattress.  So far, I haven't had
any problems but as I get older and my skin gets thinner. I might have to
use something else

On Fri, Mar 19, 2021 at 1:28 PM Nancy  wrote:

> What bed/mattress do you use to prevent skin breakdowns? I'm looking for info
> and recommendations - comfort, durability, reliability...
>
> I currently use a Drive Medical Lateral Rotation Mattress with Low Air Loss.
> I don't use the turning feature because it never returned me to the correct
> position. I got this bed in 2015 and I'm now having a lot of problems wit
> it. I can no longer get comfortable, it bulges and makes hard lumps under
> my injury site, bones and muscles. I can't sleep through the night anymore
> and I'm getting headaches frequently. I hurt all the time. On the plus
> side, it continues to prevent pressure sores. I've tried to get insurance
> (MLTC Medicare/Medicaid) to cover a new mattress but have been denied.
> After nearly 53 years, I have two chronic sores so I spend most of my
> time in bed. This is killing me both physically and mentally! Any
> suggestions will be appreciated.
> Nan
>

Re: [QUAD-L] Covid

[Eric Olson]

I didn't have a reaction to either shot (Moderna).  Most of my other
caregivers have also been vaccinated.   Symptoms for them ranged from
nothing to fever, chills, body aches, fatigue.  All seemed to resolve
within 24-48 hours.  I only had 1 caregiver (who's a bit of a
hypochondriac) say her fatigue lasted over a week

On Mon, Mar 15, 2021 at 5:22 PM Danny Hearn  wrote:

> Greg--which one did you get of the 3 or 4 available?  Also do you have to
> get a 2nd shot ? I know that very many people have got pretty sick after
> the 2nd follow up shot that many types require.  Keep us informed on
> this..Thanks, Dan H***
>
> On Monday, March 15, 2021, 04:43:29 PM CDT, Greg  wrote:
>
>
> Got my first Covid shot today.
> I only hope the alien they got the DNA from was treated well.
> Or the tracker they implanted doesn't out too much personal info out.
> (grin)
>
> Greg
>

Re: [QUAD-L] Cell phone questions

[Eric Olson]

Great question.  Unfortunately, I use an Android phone and can't help you,
but there should be some ios (Apple) users on here that might have some
suggestions

On Tue, Feb 2, 2021 at 6:45 PM  wrote:

> Hello, I hope everybody has survived this big snowstorm. Anyway the reason
> I am writing is that I am a very high level quadriplegic so I cannot move
> anything below my shoulders. During the summer months I like to spend as
> much time outside as I can. I have an iPhone SE that I take with me
> whenever I am outside. I use Siri to send and receive texts to keep in
> touch with my family and caregivers back at my house. My problem is that
> Siri gets very difficult sometimes. I might have to say Siri a lot of times
> before she will respond to me. I am wondering if anybody else on this list
> has any better solutions for keeping in contact with their caregivers. I am
> not asking for much out of the telephone other than being reliable when I
> try to use it.
>
> I hope I haven't confused everybody on here what I am looking for. All I
> want is to have a telephone that will reliably respond to me when I speak
> to it. Having to say hey Siri 20 or 30 times before she will respond is not
> reliable enough for me.
>
> Thank you very much for whatever answers you may have.
>
>
>
> Raymond
>

Re: [QUAD-L] Vaccines for Covid-19

[Eric Olson]

 After you get the vaccine, you're given the opportunity to have the CDC
track any symptoms you might develop.  I get a text every day for 7 days
with a link asking me about my symptoms.  It will happen again when I get
the second dose.  The great thing about this country is that no one is
required to get vaccinated.  Not even employers in health care
organizations




On Thu, Jan 14, 2021 at 5:01 PM Danny Hearn  wrote:

> Hello Group.I was Wondering how everyone Feels about the Covid-19
> Vaccines. Yes-No  Or going to wait a while and see ? I'm not sure I Trust
> Them Myself.  Thanks !Hope Your All Doing Okay as we head into A New
> Year !Dan H***
>

Re: [QUAD-L] foley catheters

[Eric Olson]

I've never tried them.  In theory, it might help with uti's, but what does
the silver do to the lining of your bladder?

On Thu, Jan 14, 2021 at 6:00 PM  wrote:

> to those who use foleys.
>
> I am going to use some foley until sore heals up due to condom catheter.
>
> is the more expensive foleys made with silver worth buying? compared to
> silicone or latex? i have no allergy's.
>
> thank you,
>
> derrick w in pa c/5
>
>
>

Re: [QUAD-L] Vaccines for Covid-19

[Eric Olson]

How many people have died from Covid?  I believe we're approaching
400,000.  How many have died from the vaccine? 0  It's that simple.  Lori,
just because there is money to be made off the vaccines does not mean that
was the only reason they were developed.  Will Moderna and Pfizer make
billions from the vaccines?  You bet.  Will the vaccines save lives?  You
bet.

HIV used to be a death sentence.  Now people with HIV can take a drug combo
that reduces the level of virus in their bodies to undetectable levels.
Did the drug companies make money off of people with HI?  Yes.  Were tens
of thousands of lives saved?  Yes.  The two can go hand in hand.  Just
because there is money, money, money to be made from something does not
make it inherently evil.



On Thu, Jan 14, 2021 at 6:52 PM Lissette Whitehead 
wrote:

> I pretty much trust them and do wanna get it but I prefer to wait a bit. I
> am a bit scared of the side effects. I'm a lot more scared of getting COVID.
>
>
> Lissette Whitehead
> www.lwgripgloves.com
> https://www.facebook.com/RetroTeesPlus/
> (858) 888-9263
> --
> *From:* Nichole Rohling 
> *Sent:* Thursday, January 14, 2021 4:07:33 PM
> *To:* 'Eric Olson' ; quad-list@eskimo.com <
> quad-list@eskimo.com>
> *Subject:* RE: [QUAD-L] Vaccines for Covid-19
>
>
> Any side effects? I have friends who have had COVID and got vaccinated and
> they were super sick.
>
>
>
> Nicki
>
>
>
> *From:* Eric Olson [mailto:whee...@wi.rr.com]
> *Sent:* Thursday, January 14, 2021 5:27 PM
> *To:* Danny Hearn
> *Cc:* quad-list@eskimo.com
> *Subject:* Re: [QUAD-L] Vaccines for Covid-19
>
>
>
> I was vaccinated on Tuesday
>
>
>
> On Thu, Jan 14, 2021 at 5:01 PM Danny Hearn  wrote:
>
> Hello Group.I was Wondering how everyone Feels about the Covid-19
> Vaccines. Yes-No  Or going to wait a while and see ? I'm not sure I Trust
> Them Myself.  Thanks !Hope Your All Doing Okay as we head into A New
> Year !Dan H***
>
>

Re: [QUAD-L] Vaccines for Covid-19

[Eric Olson]

 I was vaccinated on Tuesday

On Thu, Jan 14, 2021 at 5:01 PM Danny Hearn  wrote:

> Hello Group.I was Wondering how everyone Feels about the Covid-19
> Vaccines. Yes-No  Or going to wait a while and see ? I'm not sure I Trust
> Them Myself.  Thanks !Hope Your All Doing Okay as we head into A New
> Year !Dan H***
>

Re: [QUAD-L] About Flu Shots

[Eric Olson]

I get a flu shot every year.  I haven't had the flu since I was a kid.
knock on wood

On Tue, Nov 24, 2020 at 11:50 AM Randy Anderson 
wrote:

> I have gotten the flu shot every year for the past 20 years or so. I don't
> believe I've ever been sick enough to notice, after taking it.
>
> On Tue, Nov 24, 2020 at 10:50 AM Aaron Mann  wrote:
>
>> Remember these are our opinions, please research before deciding. Try
>> here to start: https://www.healthline.com/health/flu-shot-pros-and-cons
>>
>> Aaron Mann
>>
>>
>> On Mon, Nov 23, 2020 at 8:11 PM Danny Hearn  wrote:
>>
>>> Thanks for replies all !  Dan***
>>>
>>> On Monday, November 23, 2020, 07:58:12 PM CST, Lissette Whitehead <
>>> lissw...@hotmail.com> wrote:
>>>
>>>
>>> I've never had a flu vaccine in my life. My dad gets it almost every
>>> year and he always gets sick. I rarely get the flu and if I do, it's very
>>> mild. However, I do want to get the COVID vaccine, I hope there are no
>>> negative effects.
>>>
>>>
>>>
>>> Lissette Whitehead
>>>
>>> 416 W. San Ysidro Blvd.
>>>
>>> San Ysidro, CA 92173
>>>
>>> www.lwgripgloves.com
>>> --
>>>
>>>
>>>
>>> --
>>> *From:* Aaron Mann 
>>> *Sent:* Monday, November 23, 2020 5:27 PM
>>> *To:* Danny Hearn 
>>> *Cc:* quad-list@eskimo.com 
>>> *Subject:* Re: [QUAD-L] About Flu Shots
>>>
>>> That happened to me three years in a row back in the 90's. Have not
>>> taken one since. Got the Flu two times since, it was not as bad as after
>>> those shots.
>>>
>>> Aaron Mann
>>>
>>>
>>> On Mon, Nov 23, 2020 at 5:29 PM Danny Hearn 
>>> wrote:
>>>
>>> Have any of you had the Flu shot this year?  I have got it for the last
>>> 20 years or so.but this year my wife got it first and got real sick
>>> with headaches and throwing up for several days, now I'm not sure if I
>>> should get itJust curious to know if most of you have got it yet or
>>> not?  Dan H.***
>>>
>>>
>>>
>>> 
>>>  Virus-free.
>>> www.avg.com
>>> 
>>> <#m_-326649178684848_m_-1332413248287544101_m_7570964393367902581_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>>>
>>

Re: [QUAD-L] Sleep

[Eric Olson]

So you're going to watch 8-10 hours of video of yourself sleeping every day
and then diagnose yourself?  Me thinks you high.  I get that going to a
clinic for a study would be a gigantic pain in the ass but sleep apnea,
especially for a quad, could be life threatening

On Thu, Nov 19, 2020 at 8:20 PM Greg  wrote:

> I have sleeping issues as far as waking up a lot, but some days I wake up
> breathing hard or out of breath. Doc wants a sleep study. Not sure if I
> stop breathing or neck bends to much, etc. But I'm not wanting to do that
> right now.
>
> Anyone know a good, cheap, camera I can film myself to see what it looks
> like?
>
> All the ones I see are movement started and run for 15sec. Or hold 90 min
> max.
> I'd like a 8-10 hour recording. Either on a chip or streamed to laptop and
> recorded there.
>
> Thanks, Greg
>

Re: [QUAD-L] Stuck

[Eric Olson]

Have you figured out how to keep from falling forward?

On Sat, Oct 17, 2020 at 8:38 PM Shelly Kerchner 
wrote:

> Thank goodness you are ok!  This happens every now and then to me, its
> scary, frustrating I know. So very glad you are safe & out of danger Greg!
>
> Shelly
>
> On Saturday, October 17, 2020, 08:49:15 PM EDT, Greg 
> wrote:
>
>
> I feel asleep outside while I was reclined, my arms were spread out,
> hanging. Woke up and my arms were sore and so dead I couldn't reach my
> recline button. About 100 degrees outside. Luckily it only took about 10
> minutes before my arms woke up enough to get to the button.
>
> There's been 3 or 4 times I've feel forward and couldn't sit backup. The
> worse was like 110 degrees, I was just out my front door. I was yelling for
> help, but no one inside could hear me. It felt like forever.
> Bending forward I can't breath very good or yell loud. Luckily my neighbor
> heard me after forever. I was so over heated. I was getting really panicked.
>
> Greg
>

Re: [QUAD-L] Hello Group...Question about the covid-19 virus.

[Eric Olson]

I haven't heard of or seen anyone on the news disabled and infected.
Anyone else?

On Tue, Sep 8, 2020 at 5:34 PM Danny Hearn  wrote:

> Hi, All.I was just wondering if any of our Quad group has gotten sick
> from the coronavirus yet ?? Was curious to see if so, If they were able to
> survive  at home or at a Hospital ? So far I have been Okay and hope you
> all are alsoUs being Quads, I wonder If we can beat this virus if we
> would get it.  Take Care & Thanks !   Dan H***
>

Re: [QUAD-L] Am I the only one...

[Eric Olson]

I hear you.  I often think - is it not enough that I'm quadriplegic and on
a ventilator?  I've always thought the paralysis is cake compared to
everything that comes with it?  They save our lives and say "good luck with
all that" as we leave the hospital.  lol

On Sat, Aug 29, 2020 at 5:01 PM Lori Michaelson 
wrote:

> Am I the only one who is sick and tired of all the secondary complications
> that come with quadriplegia?
>
> Pretty much a no brainer but, after almost 41 years and multiple secondary
> complications from posttraumatic syringomyelia and the onset of UTIs after
> a couple of hospitals ending up putting bacteria (multi-drug-resistant) and
> my urine that keeps coming back.
>
> Along with seeing my father, my mother, my grandparents and my husband die
> too very young. So I am just pretty much on my own now for the first time
> in my life starting in January 2016.
>
> --
> “Petting, scratching, and cuddling a dog could be as soothing to the mind
> and heart as deep meditation and almost as good for the soul as prayer.”
> ― Dean Koontz
>

Re: [QUAD-L] any ideas

[Eric Olson]

I've  been watching a lot of Dr. Pimple Popper and people come to her with
all manner of mysterious lumps.  Most turn out to be either some type of
cyst or a lipoma.
Here is information on lipomas
https://www.mayoclinic.org/diseases-conditions/lipoma/symptoms-causes/syc-20374470
Not sure if either world cause dysreflexia.
But what do I know right?

On Thu, Aug 27, 2020 at 10:42 AM Carla Aarssen  wrote:

> Is it a hernia?
>
> Get Outlook for Android 
>
> --
> *From:* glenn henry 
> *Sent:* Wednesday, August 26, 2020 10:18:55 PM
> *To:* quad-list@eskimo.com 
> *Subject:* [QUAD-L] any ideas
>
> Hello,
>
> A fellow friend, I quad c-56 has been in the hospital for almost a month.
> He has all the Nami dysreflexia but they cannot figure out what is the
> cause. The one thing they do now is there is a lump the size of a golf ball
> above the pelvis about 3 in. At first the love was hard but now it is
> softer and can be moved around as if it was a floating piece of tissue or
> calcium.
>
> Any ideas
>

Re: [QUAD-L] Ear Wax

[Eric Olson]

I have to flush my ears every 6-8 weeks.  I could seriously have my own
earwax candle line if there was a market for something that disgusting.  I
use this

https://www.walmart.com/ip/Murine-earwax-removal-kit-0-5-oz/10324726?athcpid=10324726=athenaItemPage=null=PWVAV=v0=CS004=ebc1be6e-007-173e3b9371152b=null=true

If you don't hear bubbling the peroxide is old and ineffective. I know I'm
due when I turn on my side and my ear plugs up till I turn onto my back. It
actually runs in my family.  My dad has trouble too. Happy flushing!

On Tue, Aug 11, 2020 at 5:54 PM Greg  wrote:

> I have such a bad Ear Wax issue. My right ear starts to crackle inside,
> then gets plugged up. Over the counter drops don't help at all. Years ago,
> my doc used a water / hydrogen peroxide mix to flush it.Took awhile, but
> finely cleared. Now I have to do it about twice a year. It ends up flushing
> out a chunck the sized of a pencil earacer.  Always the right ear.
>
> Greg
>

Re: [QUAD-L] About a second Stimulus check

[Eric Olson]

more info on various bills
https://www.cnet.com/personal-finance/heals-vs-cares-vs-heroes-acts-whats-the-difference-between-the-stimulus-packages/?ftag=CAD3c77551=28058955464902018487046396446355=12955595=2029111001

On Mon, Jul 27, 2020 at 2:43 PM DAVID LEWIS  wrote:

> I thought i heard they are going to send anoer check of 1200 to ssi people
>

Re: [QUAD-L] About a second Stimulus check

[Eric Olson]

https://www.cnet.com/personal-finance/next-stimulus-bill-heals-act-would-offer-more-than-just-another-check/?ftag=CAD090e536=20649148497514294339398223206616=12950535=534368488

On Mon, Jul 27, 2020 at 2:43 PM DAVID LEWIS  wrote:

> I thought i heard they are going to send anoer check of 1200 to ssi people
>

Re: [QUAD-L] COVID-19, SCI and going back to work

[Eric Olson]

Personally, number 3 and 11 would keep me home, especially, number 11

On Mon, Jul 13, 2020 at 4:43 PM Joe Olson  wrote:

> I have lots of information, but I'm having difficulty prioritizing it
> 1. They are following distancing guidelines
> 2. My states case numbers are steady and relatively low / low positive rate
> 3. I take public transportation there
> 4. My work does not require much face to face work with the public- desk
> job.
> 5. All guidance on SCI shows that we are at higher risk
> 6. Very little actual outcome based results on COVID and SCI. Only a
> single case study
> 7. I live in a place where community transmission has been active for a
> while and may have had it asymptomatically already.
> 8. I'm typically pretty healthy (besides UTI, occasional skin breakdown)
> 9. One of my caregivers has emphysema
> 10. I'm not impacted economically either way
> 11. If I do come down with it mildly symptomatic, it may be difficult to
> get my caregivers to show up. I would likely need to be hospitalized due to
> lack of care- even with mild symptoms.
> 12. I'm getting bored staying home
> 13. Due to lack of human connection while isolating, I could see myself
> taking part in - or may have already taken part in activities that could be
> more risky than work.
> 13. I think staying out too long may affect my reputation as a reliable
> useful employee.
> Like I said, kinda complicated. What things would you be looking at?
>
> Sent from my iPhone
>
> On Jul 13, 2020, at 5:06 PM, Eric Olson  wrote:
>
> Good question. I would look into what precautions your company is taking
> at the office. Are employees required to wear masks? I would get all the
> facts before making a decision.
>
> On Mon, Jul 13, 2020 at 12:36 PM Joe Olson  wrote:
>
>> I know that COVID was a topic before but it's been a while and things are
>> changing all the time. I'm C5 complete and am trying to decide if I should
>> go back to the office (day job). I was wondering, for people who went back
>> or have decided to continue to stay out: what did you consider before
>> making your decision?
>> I'm a bit of a lurker on this list-serve. I posted a similar post on FB
>> today but it seems like FB replies are not always the same quality as what
>> happens here. Thanks for all your great posts and responses!
>> -Joe
>>
>

Re: [QUAD-L] COVID-19, SCI and going back to work

[Eric Olson]

Good question. I would look into what precautions your company is taking at
the office. Are employees required to wear masks? I would get all the facts
before making a decision.

On Mon, Jul 13, 2020 at 12:36 PM Joe Olson  wrote:

> I know that COVID was a topic before but it's been a while and things are
> changing all the time. I'm C5 complete and am trying to decide if I should
> go back to the office (day job). I was wondering, for people who went back
> or have decided to continue to stay out: what did you consider before
> making your decision?
> I'm a bit of a lurker on this list-serve. I posted a similar post on FB
> today but it seems like FB replies are not always the same quality as what
> happens here. Thanks for all your great posts and responses!
> -Joe
>

Re: [QUAD-L] Celebrating Life 31 years after Transverse Myelitis!

[Eric Olson]

Thanks Dana.  July 1st was 34 years for me.

On Mon, Jul 13, 2020 at 3:33 AM Dana Wray  wrote:

> Belated Congratulations to Eric and Jim in case I did not.Dana
>
> On Mon, May 18, 2020 at 11:56 AM Eric Olson  wrote:
>
>> rock on James!
>>
>> On Sun, May 17, 2020 at 10:12 PM Jim Lubin  wrote:
>>
>>> On May 17, 1989, I suddenly, within minutes, went from a sharp pain in
>>> my shoulder to becoming paralyzed from the neck down and dependent on a
>>> ventilator to breathe due to acute idiopathic transverse myelitis. My
>>> condition has not changed but I am otherwise in good health and grateful
>>> for every day I am alive.
>>>
>>

Re: [QUAD-L] Butt Soee

[Eric Olson]

My advice would be to not get in your chair if that's possible. The only
good pressure is no pressure

On Mon, Jun 8, 2020 at 8:55 PM Greg  wrote:

> ive had 2 sores on my butt for mounts now. they are so close to healing.
> the bigger one looks like it will heal first. my main problem is sweating
> when i sit in my chair. some days its fine, some days i sweat terribly bad.
> ive had sores bigger and deeper and never sweated like this. it seems to
> only be 1 side that causes the sweating. the smallest one. if i lift my hip
> up using a small pillow the sweating stops.
>
> the doc has checked for tunnling, infectios, bone infection, everything
> looks great. no dead skin / meat etc.
>
> anyone sweat that bad from a butt sore?
>
> Greg
>

Re: [QUAD-L] Chair Prob

[Eric Olson]

What frosts my ass is that they won't fix something until they receive
payment even though they KNOW Medicare will cover it.  I hit a pothole in
the street a couple years ago with my front castor and it split the rubber
in half.  They knew Medicare would pay for it but they wouldn't even ORDER
the parts until the payment hit their balance sheet

On Thu, May 21, 2020 at 9:35 AM Aaron Mann  wrote:

> I've always been given a "loaner" chair. Did they not offer that?
>
> In regards to just fixing the stripped cable. I'd call an electrician (or
> do like you did). Chair place have been gutted of their abilities to work
> outside the box by lawyers. They carry all the liability for their work.
> So, a new cord reduces that liability whereas patching a stripped one does
> not. I do remember when shops did all sorts of optional solutions
>
> Aaron Mann
>
>
> On Wed, May 20, 2020 at 6:00 PM Lori Michaelson 
> wrote:
>
>> I have had this problem with these companies so many times. It's just not
>> right. You WERE very fortunate to have a friend to rewire the ripped cable.
>>
>> On Wed, May 20, 2020 at 3:53 PM Greg  wrote:
>>
>>> Last night I was raising my chairs seat and the joystick cord came loose
>>> and hooked around the motor and as I raised it ripped open the cable.
>>> Repair shop says 4-8 weeks to get fixed. They carry no parts.
>>>
>>>
>>> 1. Get prescription.
>>> 2. After they get that, make appointment to get chair checked out. (week
>>> +)
>>> 3. They pick up chair.
>>> 4. Get Insurance OK. (about 2 weeks)
>>> 5. Order part. (About a week)
>>> 6. Fix chair.
>>> 7. Make appointment deliver (week +)
>>>
>>> They say if insurance oks, can get manual rental chair in a week. Or
>>> maybe power chair in a few weeks.
>>>
>>> I just dont get these guys. I know they can't have spare parts for all
>>> chairs, but I don't understand why they can't just send a joystick to use
>>> until.
>>>
>>> LUCKILY, a friend of a friend was able to stop by and rewire to ripped
>>> cable. But they got to get a better way to do things.
>>>
>>> Greg
>>>
>>
>>
>> --
>> “Petting, scratching, and cuddling a dog could be as soothing to the mind
>> and heart as deep meditation and almost as good for the soul as prayer.”
>> ― Dean Koontz
>>
>

Re: [QUAD-L] Celebrating Life 31 years after Transverse Myelitis!

[Eric Olson]

rock on James!

On Sun, May 17, 2020 at 10:12 PM Jim Lubin  wrote:

> On May 17, 1989, I suddenly, within minutes, went from a sharp pain in my
> shoulder to becoming paralyzed from the neck down and dependent on a
> ventilator to breathe due to acute idiopathic transverse myelitis. My
> condition has not changed but I am otherwise in good health and grateful
> for every day I am alive.
>

Re: [QUAD-L] Mucas ib tour leg bag

[Eric Olson]

Can you be more specific?  Are we talking some mucus shreds or is emptying
your bag something that should be on YouTube under "how to make slime"

On Fri, May 15, 2020 at 4:07 PM DAVID LEWIS  wrote:

> I just finished taking a antibiotic last week.
> Now i see slime in my texas catheter leg bag.
> My uraligty Doc says that really dosent mean infection
> What do i do?
> Thank you
>

Re: [QUAD-L] Bad Spasms are back... What do u guys take?

[Eric Olson]

baclofen 20mg X 4

On Fri, May 8, 2020 at 5:19 PM DAVID LEWIS  wrote:

> I have been taking Baclofen 20 mg 3 times a day..
> Now i take a Mustle relaxer 3 times a day with it for 2 weeks.
> Its working great.
> Can u fellow Quads tell me what you take for Spasms?
> Thank you guys,, Stay safe..
> Johnny
>
>

[QUAD-L] Share medical information with first responders

[Eric Olson]

https://www.cnet.com/news/apple-will-let-you-automatically-share-your-medical-id-info-with-first-responders/?ftag=CAD4dc88c8=28058955464902018487046396446355=12824473=2029111001

Re: [QUAD-L] Re: Just checking in.

[Eric Olson]

Not yet, but I fear the worst of it will come in the fall.  It's probably
just my own paranoia, but I worry more about a "second wave"  It might not
happen but I worry about sending my daughter back to school in September.
All my caregivers have school aged children too.  I hope they move
cautiously.  It would be much easier for upper grades to do then grade
school kids.   9th and 10th grade has in person school on Monday and
Tuesday and online school Wednesday - Friday.  Some kind of staggering as
opposed to all kids all together all week long.  I realize this is probably
not realistic for poorer school districts.  What about fall sports for the
kids?  I hope a "second wave" never comes, but I have to have something to
worry about lol.

On Mon, Apr 27, 2020 at 12:01 PM Shirley Bell  wrote:

> I am good in RI. are any of you having trouble getting aids to come?? be
> well
>
> *From:* Jim Lubin
> *Sent:* Monday, April 27, 2020 12:24 PM
> *To:* Nancy
> *Cc:* Quad-list
> *Subject:* [QUAD-L] Re: Just checking in.
>
> I'm doing good. Hope you are doing well
>
> On Mon, Apr 27, 2020 at 7:13 AM Nancy  wrote:
>
>> Just want to know how you all are doing. Thinking of you all!
>>
>> Nan
>>
>

Re: [QUAD-L] Anyone know how Quads will fair if they get Virus?

[Eric Olson]

Unfortunately, you're probably spot on.

On Mon, Mar 30, 2020 at 11:30 AM Greg  wrote:

> My guess is not well. Higher the level, the less well.
> Greg
>
> On 3/18/2020 9:52 AM, DAVID LEWIS wrote:
>
> Anyone know of Quads getting the virus yet?
>
>
>

Re: [QUAD-L] Quads and virus battle

[Eric Olson]

That's why I said "many hospitals" not all

On Sat, Mar 21, 2020 at 5:40 PM Jeffrey Gaede  wrote:

> That's kind of unfair to say. I think it's different place to place. I
> know someone who came down with flu-like symptoms, was tested immediately,
> and it turned out negative after only a day and 1/2. Just an average, daily
> person. It just depends.
>
> On Saturday, March 21, 2020, 02:51:00 PM PDT, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> It doesn't matter what the official numbers are.  Assume there's probably
> anywhere between 10-1000 times as many people in your state that are
> infected.  Many hospitals are so inundated with people they're only testing
> people that need to be admitted.  Many with the virus will never even be
> tested because they won't have a severe case.
>
> On Sat, Mar 21, 2020 at 3:14 PM Nichole Rohling 
> wrote:
>
> What state are you in and how many cases do you have?
>
> I’m in OK and we have 53 w/ 300+ still waiting on test results.
>
> I stay in during the winter months due to the flu so being at home isn’t a
> big deal for me. I am only in contact w/ 4 caregivers and 4 people in my
> family.
>
> My son-in-law is in the Army and they were supposed to be moving back to
> OK from Guam (they have 15 cases) the first week of May. Due to military
> travel ban all moves are postponed until at least May 11. My granddaughter
> got out of the hospital Sunday after fighting pneumonia and they are
> expecting a boy the beginning of September. We were so excited for them to
> be home and then this dang virus ruined our plans L
>
>
>
> *From:* DAVID LEWIS [mailto:curlyle...@verizon.net]
> *Sent:* Saturday, March 21, 2020 2:53 PM
> *To:* Nichole Rohling
> *Subject:* Re: [QUAD-L] Quads and virus battle
>
>
>
> Very true,  i hope hospitals take that into mind.
>
>
>
> On Saturday, March 21, 2020, 03:24:10 PM EDT, Nichole Rohling <
> zoocr...@windstream.net> wrote:
>
>
>
>
>
> It won’t be good. With our limited lung function, I think it would be
> deadly.
>
>
>
> Nicki
>
>
>
> *From:* DAVID LEWIS [mailto:curlyle...@verizon.net]
> *Sent:* Saturday, March 21, 2020 1:35 PM
> *To:* Quad-list
> *Subject:* [QUAD-L] Quads and virus battle
>
>
>
> How will quads do if the get it?
>
>

Re: [QUAD-L] Quads and virus battle

[Eric Olson]

It doesn't matter what the official numbers are.  Assume there's probably
anywhere between 10-1000 times as many people in your state that are
infected.  Many hospitals are so inundated with people they're only testing
people that need to be admitted.  Many with the virus will never even be
tested because they won't have a severe case.

On Sat, Mar 21, 2020 at 3:14 PM Nichole Rohling 
wrote:

> What state are you in and how many cases do you have?
>
> I’m in OK and we have 53 w/ 300+ still waiting on test results.
>
> I stay in during the winter months due to the flu so being at home isn’t a
> big deal for me. I am only in contact w/ 4 caregivers and 4 people in my
> family.
>
> My son-in-law is in the Army and they were supposed to be moving back to
> OK from Guam (they have 15 cases) the first week of May. Due to military
> travel ban all moves are postponed until at least May 11. My granddaughter
> got out of the hospital Sunday after fighting pneumonia and they are
> expecting a boy the beginning of September. We were so excited for them to
> be home and then this dang virus ruined our plans L
>
>
>
> *From:* DAVID LEWIS [mailto:curlyle...@verizon.net]
> *Sent:* Saturday, March 21, 2020 2:53 PM
> *To:* Nichole Rohling
> *Subject:* Re: [QUAD-L] Quads and virus battle
>
>
>
> Very true,  i hope hospitals take that into mind.
>
>
>
> On Saturday, March 21, 2020, 03:24:10 PM EDT, Nichole Rohling <
> zoocr...@windstream.net> wrote:
>
>
>
>
>
> It won’t be good. With our limited lung function, I think it would be
> deadly.
>
>
>
> Nicki
>
>
>
> *From:* DAVID LEWIS [mailto:curlyle...@verizon.net]
> *Sent:* Saturday, March 21, 2020 1:35 PM
> *To:* Quad-list
> *Subject:* [QUAD-L] Quads and virus battle
>
>
>
> How will quads do if the get it?
>

Re: [QUAD-L] Magic Bullet Suppositories

[Eric Olson]

https://www.exmed.net/p-1869-concepts-in-confidence-magic-bullet-suppositories.aspx

On Fri, Mar 20, 2020 at 9:07 PM  wrote:

> Hello.  Does anyone know where I can get the Magic Bullet Suppositories?
> I went to the Allegro website and it said they were out of stock.
>

Re: [QUAD-L] Bladder and stomach problems

[Eric Olson]

As far as I can tell

On Mon, Mar 16, 2020 at 12:03 PM Jeffrey Gaede  wrote:

> No clue. Everything good with your water?
> On Monday, March 16, 2020, 09:55:54 AM PDT, Eric Olson 
> wrote:
>
>
> hmm not sure I've ever heard anyone describe symptoms like that
>
> On Sun, Mar 15, 2020 at 7:40 PM Toby Ausbun 
> wrote:
>
> What’s it mean when you take a big drink of water and you get stomach pain
> and your mouth tastes like you have sand in it???
>
> Sent from my iPad
>
>

Re: [QUAD-L] Bladder and stomach problems

[Eric Olson]

hmm not sure I've ever heard anyone describe symptoms like that

On Sun, Mar 15, 2020 at 7:40 PM Toby Ausbun 
wrote:

> What’s it mean when you take a big drink of water and you get stomach pain
> and your mouth tastes like you have sand in it???
>
> Sent from my iPad
>

Re: [QUAD-L] Hello!

[Eric Olson]

Yes I am worried.  I'm on a vent so I'm high risk.  My wife has MS. She
uses a drug that suppresses her immune system making her high risk as well.
If I didn't have to rely on others for care, I wouldn't worry.  Now I worry
about a caregiver getting me sick AND caregivers getting sick and not being
able to work.  Hands down the worst part of being disabled is having to be
dependent on others for care.

On Sat, Mar 14, 2020 at 1:40 PM Nichole Rohling 
wrote:

> Still here!
>
> Not much discussion but who is afraid of getting COVID-19? I stay home
> mostly so I’m not super worried.
>
> Nicki
>
>
>
> *From:* Jeffrey Gaede [mailto:jsga...@yahoo.com]
> *Sent:* Friday, March 13, 2020 9:27 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] Hello!
>
>
>
> So who all is still here and what is everyone talking about?
>
> Jeff
>

Re: [QUAD-L] Hello!

[Eric Olson]

I'm not here and even if I was, I'd deny it lol

On Fri, Mar 13, 2020 at 9:27 PM Jeffrey Gaede  wrote:

> So who all is still here and what is everyone talking about?
> Jeff
>

Re: [QUAD-L] Advertising for caregivers...

[Eric Olson]

You're right, the 24/7 part is probably not doable for many potential
caregivers.

On Wed, Feb 19, 2020 at 2:31 PM Lori Michaelson 
wrote:

> Thanks Eric...
>
> This newspaper cover all of Tucson not just via the "paper" itself but
> online and other ways people can look at the paper.
>
> I also mentioned that I have signed up with care.com whereby you can
> choose any of the caregivers (and choose any number of miles away from
> where you are), view what they do and how they describe themselves as and
> their ages and write to them where they can view on the site and they get
> notified through their e-mail.
>
> I also mentioned that I have tried Next Door.com whereby I have chosen
> over 60 neighborhoods in my area. Great source of information and what is
> happening in your area or town whether it be just about anything including
> advertising for free. Unlike care.com that charges a fee.
>
> Anyway... hard to find someone who will do 24/7 but that is what I really
> need and then giving them off at intervals like I have done over the past 4
> years.
>
> Everything from advertising to what people want to get paid is being
> beyond expensive. I am in a very tough spot.
>
> ~ Lori
>
> On Wed, Feb 19, 2020 at 12:55 PM Eric Olson  wrote:
>
>> Sorry you're having trouble finding someone.  I had this site
>> bookmarked.  http://assistantpages.com/  Not sure it will help.  How
>> local is this paper?  I think you should think about expanding your search
>> area. I get where you're coming from about using the word quadriplegic.  It
>> can make you a target but it's not really something you want to spring on a
>> potential caregiver either.  Wish you luck
>>
>> On Tue, Feb 18, 2020 at 3:18 PM Lori Michaelson 
>> wrote:
>>
>>> Okay, only one member on here knows of my situation (Dana) but I really
>>> need to ask a question.
>>>
>>> I have been on my own for the last 40 years as a high-level quad. I have
>>> always lived with family except over the last 4 years whereby I found a
>>> live-in caregiver that I could afford.  Now the live-in caregiver I have
>>> had over the last 4 years users moving on and out-of-state. In our original
>>> contract if either of us were moving on we had to give the other person a
>>> 90 day written notice. She gave me a good 6 months notice so I've started
>>> advertising in January.
>>>
>>> I found her via craigslist when I was in Pennsylvania living with family
>>> who wanted me to move on when they knew I had nowhere to go. Absolutely
>>> nowhere and I was not going to move into a nursing home. I had a beautiful
>>> support dog and I would NOT survive in a nursing home anyway. All of my
>>> caregivers over the years know that I would not survive  in a nursing home
>>> 2 months and I know that as well with my needs.
>>>
>>> Unfortunately or fortunately, I am not eligible for state help and that
>>> is because I received my Social Security from working, my husband's Social
>>> Security, a big savings account for so many reasons (I need a lot of dental
>>> work, I need to be able to have a co-pay for a new caregiver and so many
>>> other reasons) as well as my husband investing before he passed away.
>>> "Spending down" is like committing financial suicide because I don't think
>>> versions of Medicaid is going to last long and I have no way of controlling
>>> what I get from Social Security every month as well as a small annuity from
>>> the accident (which is peanuts when you live alone and my lawyer at the
>>> time screwed that up by not factoring in inflation and "What if Lori needs
>>> around-the-clock care at some point?").
>>>
>>> * I put an ad on craigslist for 30 days which will be up on February
>>> 20th - soon. I got absolutely no response from anyone from that route. It
>>> used to be free to advertise 4 years ago but now it is $25.
>>>
>>> * I have signed up with care.com but have not found anyone yet.
>>>
>>> * I put an ad on the Facebook closed group for caregivers in my area but
>>> no responses.
>>>
>>> * For those familiar with Next-Door ... I put feelers out there with no
>>> response.
>>>
>>> * I have thought about putting an ad in our town newspaper and I have
>>> spoken with the head of classifieds for this. Their highest circulation
>>> output is Sundays and Wednesdays and if I want it and therefore a month it
>>> will be $273. I have used as little words as possible but my question

Re: [QUAD-L] Advertising for caregivers...

[Eric Olson]

Sorry you're having trouble finding someone.  I had this site bookmarked.
http://assistantpages.com/  Not sure it will help.  How local is this
paper?  I think you should think about expanding your search area. I get
where you're coming from about using the word quadriplegic.  It can make
you a target but it's not really something you want to spring on a
potential caregiver either.  Wish you luck

On Tue, Feb 18, 2020 at 3:18 PM Lori Michaelson 
wrote:

> Okay, only one member on here knows of my situation (Dana) but I really
> need to ask a question.
>
> I have been on my own for the last 40 years as a high-level quad. I have
> always lived with family except over the last 4 years whereby I found a
> live-in caregiver that I could afford.  Now the live-in caregiver I have
> had over the last 4 years users moving on and out-of-state. In our original
> contract if either of us were moving on we had to give the other person a
> 90 day written notice. She gave me a good 6 months notice so I've started
> advertising in January.
>
> I found her via craigslist when I was in Pennsylvania living with family
> who wanted me to move on when they knew I had nowhere to go. Absolutely
> nowhere and I was not going to move into a nursing home. I had a beautiful
> support dog and I would NOT survive in a nursing home anyway. All of my
> caregivers over the years know that I would not survive  in a nursing home
> 2 months and I know that as well with my needs.
>
> Unfortunately or fortunately, I am not eligible for state help and that is
> because I received my Social Security from working, my husband's Social
> Security, a big savings account for so many reasons (I need a lot of dental
> work, I need to be able to have a co-pay for a new caregiver and so many
> other reasons) as well as my husband investing before he passed away.
> "Spending down" is like committing financial suicide because I don't think
> versions of Medicaid is going to last long and I have no way of controlling
> what I get from Social Security every month as well as a small annuity from
> the accident (which is peanuts when you live alone and my lawyer at the
> time screwed that up by not factoring in inflation and "What if Lori needs
> around-the-clock care at some point?").
>
> * I put an ad on craigslist for 30 days which will be up on February 20th
> - soon. I got absolutely no response from anyone from that route. It used
> to be free to advertise 4 years ago but now it is $25.
>
> * I have signed up with care.com but have not found anyone yet.
>
> * I put an ad on the Facebook closed group for caregivers in my area but
> no responses.
>
> * For those familiar with Next-Door ... I put feelers out there with no
> response.
>
> * I have thought about putting an ad in our town newspaper and I have
> spoken with the head of classifieds for this. Their highest circulation
> output is Sundays and Wednesdays and if I want it and therefore a month it
> will be $273. I have used as little words as possible but my question to
> you guys is:
>
> When advertising in a newspaper and you live alone... should you use the
> word Quadriplegic? I have to have a way for people to reach me so I put my
> phone number and e-mail and asking for a "live-in" caregiver.
>
> I need to start training people ASAP since my current live-in is leaving
> the first week in August which sounds like a while from now but by the time
> you train someone and you make sure they are going to stay for a good
> amount of time for it to be worthwhile... time goes by quickly.
>
> My wheelchair batteries had some dead cells and they needed to be replaced
> which just happened this past Tuesday. My co-pay for those is $244.
>
> My live-in caregiver has not had a break in a year because of certain
> situations so she has really burned out and the one caregiver in my area
> who knows my care (but has a family and a full-time job) is going to take
> care of me 3 days next week and that is $600 but I have no other option.
>
> I have contacted so many places including my local Center for Independent
> Living and, being a quad as long as I have and working for an independent
> living center for 7+ years and having lived with family or my spouse over
> the last 40 years and to be fortunate to have found a fabulous live-in
> caregiver for the last 4 years... I am now desperate.
>
> My health deteriorated after being hurt soon after moving back here along
> with a domino effect that caused to this very day but I still have a great
> power wheelchair, Roho cushions, a fully adjustable hospital bed which I
> have always needed, a rotating air mattress that I have found my body can't
> go without (terrible autonomic dysreflexia if it's not working), my big
> Desktop Computer that I keep so very active with with many programs on it,
> my nice wheelchair conversion minivan, my German Shepherd support dog that
> I want to train more, and a host of different things that I definitely need
> for daily care.

Re: [QUAD-L] Any you guys has a trach I will like to ask you

[Eric Olson]

I change the trach once a month.
I've never had any revision of the trach stoma.  I have had a revision
around my supra pubic catheter though
My trach is a Bivona size 7.5
I've had a trach for 33 years

On Mon, Feb 17, 2020 at 7:18 AM  wrote:

> Any you guys that has Trait I will like to ask you couple questions how
> often you change your trach also have your doctor ever told you that you
> have dry secretion insight and my third question have you ever had surgery
> on your trach remove some tissue from the insight and my last two questions
> what kind of trach you have and what sites and my last question how long
> you have been with a trach thank you and God bless you
>
>
>

Re: [QUAD-L] Cold

[Eric Olson]

I hear you.  I think we suffer the same affliction.  I have just labeled
them "cold sensations"  Doesn't matter what my temperature is.  I tell
caregivers I feel cold and they want to take my temperature and pile
blankets on  That just drives my temperature up. It doesn't make me feel
warmer.  I can't feel the blankets anyway.  I use a a headband for
comfort.  I can feel it on my ears and forehead.  I wish I had a solution
for you.  Good to hear you're doing better.  You're a warrior my friend.
Hope you can get out and feel the sun soon

Eric

On Sun, Feb 9, 2020 at 5:15 PM Greg  wrote:

> I hate being so cold...
> And its only in the 60s, you east coast people must just freeze.
> I ear a tshirt at night and earmuffs. Otherwise I end up with blankets
> over my face.
>
> I think my health is finely back to pretty good. Though still not very
> active yet.
>
> Greg
>

Re: [QUAD-L] Re: HELP Spasms will not stop

[Eric Olson]

Nice!  Where do you live?

On Thu, Jan 23, 2020 at 2:48 PM Aaron Mann  wrote:

> I'm currently on 30mg Baclofen, 600mg Gapepentin 3x/day for spasm/pain
> management. 5mg Diazepam as needed when spasms little worse.
>
> I also just got my medical marijuana card. Being advised by pharmacist to
> start with CBD/THC combination. This is primarily for pain, but seeing huge
> improvement in spasms.
>
> Aaron Mann
>
>
> On Fri, Nov 29, 2019 at 12:47 PM Eric Olson  wrote:
>
>> I too take 20mg four times a
>>
>> On Fri, Nov 29, 2019 at 11:45 AM Jim Lubin  wrote:
>>
>>> I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to treat
>>> muscle spasticity
>>>
>>> On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS 
>>> wrote:
>>>
>>>> How  much baclofen mg can u up a day.?
>>>>
>>>> I already take 20 mg 3 times a day
>>>> thanks
>>>>
>>>

Re: [QUAD-L] I would like to say to everyone a you

[Eric Olson]

It amazes me how fast the years seem to fly by when you get older.  Of
course, if you had to spend any time in the hospital this past year, the
time couldn't go fast enough.  I hope all of you have a healthy 2020.

On Tue, Dec 31, 2019 at 4:21 AM Furious  wrote:

> Yes Merry Christmas to the Quad-list.. i know i'm late but the Holiday
> spirit is in the air. Thanks Dana for your kind words. God Bless
>
> On Tue, Dec 31, 2019 at 2:17 AM Dana Wray  wrote:
>
>>  Hello Quad-List,
>> I would like to wish everyone a Belated merry Christmas and a happy new
>> year. I appreciate this format to ask questions and give input. It helps us
>> to feel we are not alone in the world we live in. We understand each
>> other‘s problems as much as we can. Thank you everyone for sharing and
>> caring about one another.
>> God bless you now and throughout the new year. I pray for my friends also.
>> We all need to fight against EVV to take away our rights to live
>> independently without invasion of our privacy. Please join the group, Stop
>> EVV on Facebook immediately to keep abreast of what is going on in our
>> country. We need to contact our  representative  right now. The website
>> will give you all the information you need to know how to uphold your
>> ability to come and go in your community
>> Thank you Jim for starting this amazing group.
>> Dana
>>
>> On Mon, Dec 30, 2019 at 8:44 PM Jim Lubin  wrote:
>>
>>> I also want to wish everyone a healthy new year! Take care and God Bless!
>>>
>>>
>>> On Mon, Dec 30, 2019 at 4:24 PM  wrote:
>>>
 Hello my friends the ear is almost over tomorrow midnight is going to
 be a you ear beside we don't know each other I want to wish you every one
 of you and to your family a happy new year and a safe one hopefully this
 ear coming up is a better year for you and your family I will be praying
 for you for your wish that will come through also very healthy ear you have
 these here coming up I know it is hard to stay away from the hospital
 nobody likes to be in the hospital but our condition doesn't help and we
 don't have too much choices in life a course some of us are age doesn't
 help were not getting any younger some of us keep on holding on I know
 being a quadriplegic is not simple I will be praying everyone of you that
 these ear coming up is a better year for you and your family I do
 understand everyone a you and takes another disabled person to understand a
 disabled person also I will be praying for everyone to you that Jesus will
 open that right door for your future and better things and God bless you
 every one of you and to your family and happy new year again take care



>>>

Re: [QUAD-L] Bipap Mask

[Eric Olson]

Good to hear from you man.  I don't know if it was here or on the
vent-users listserve but I remember people complaining all the time about
how their mask either leaked or was making marks on their face.  I remember
someone mentioned that they had a mask custom made for his face.  I might
be remembering this wrong but I thought he said his dentist helped with
it??  Anyway I also remember someone said they used nasal pillows?  Not
sure what those are but maybe something to research.  How's it going
otherwise?

On Sun, Dec 22, 2019 at 6:10 PM Greg  wrote:

> I have to wear a Bipap mask at night, but can't find one that feels ok.
> It has to go on so tight so air does not leak out.
> I bought liners, but still bothers my skin an bridge of my nose.
> Anyone use one they like?
>
> Greg
>

[QUAD-L] grip

[Eric Olson]

Anyone needing some grip.   The link to the website is at the end of the 
article


https://www.abilities.com/community/cattongue-grips.html

Re: [QUAD-L] Re: HELP Spasms will not stop

[Eric Olson]

I too take 20mg four times a

On Fri, Nov 29, 2019 at 11:45 AM Jim Lubin  wrote:

> I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to treat
> muscle spasticity
>
> On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS 
> wrote:
>
>> How  much baclofen mg can u up a day.?
>>
>> I already take 20 mg 3 times a day
>> thanks
>>
>

Re: [QUAD-L] About my disability

[Eric Olson]

I still struggle with getting dizzy occasionally after I get in the chair.
Even after being in the chair for hours, I will have problems.  Static
hypotension  is the technical term I think.  I just recline or tilt or have
a caregiver pick up my legs.  It's seriously annoying but I just deal with
it.  I think the best way to keep from cramping up is to change positions
often.  It's good for your skin too.

On Wed, Nov 20, 2019 at 7:46 PM  wrote:

> Hey guys I have a question for you have ever you ever happen this type of
> problem I used to get up in the wheelchair very often when I used to get up
> I used to get dizzy for couple of seconds after that no problem I would
> alas eight hours or more but after couple years ago my leg started hurting
> for sample if feel like a cramp they get so stiff and I starts feeling bad
> I told the doctor about it but according to my doctor that is 10 that is in
> my mind part of it I do agree because I don't have any feeling I feel from
> my chest up they did some tests thank God everything once pretty good they
> never could find the problem immuno law while that I don't get up in the
> Wiltshire for the same reason I don't think nothing got to do with my age
> now I don't get up at all for the same reason that's why I was wondering if
> you guys ever had that type of problem thank you God bless you
>
>
>

Re: [QUAD-L] Hospital

[Eric Olson]

are you able to sit up all the way yet?

On Fri, Nov 15, 2019 at 11:04 AM Greg  wrote:

> I've been in-out of the hospital again. 1st time 2 was for months.
>
> Butt sore, Bone infection, (antibiotics caused), Kidney failure –
> Respiratory failure (dialysis and ventilator). Finely weaned off both.
>
> Since then I've had 4 ER 1 day visits, a 12, 7, 5, 5, and a 3 day visit.
>
> A number of other bad issues, but mostly my lung keeps getting fluid
> around it. (Pleural Effusion) Had to drain it a few times a week. Finely
> had surgery. Looks ok now.
>
> I lost so much weight and strength, I couldn't take big enough breaths at
> night to get rid of all the C02. Id sleep in my chair all day, no one could
> wake me up. My CO2 levels were in the 80s, supposed to be in the 30s. Other
> times I would act normal for a few days, but then remember nothing.
>
> So now I have to use a feeding tube at night and eat during the day. Plus
> I need to use a Bipap machine to make me breath deeper at night.
>
>
> Greg
>

Re: [QUAD-L] Wondering

[Eric Olson]

https://www.allegromedical.com/bathroom-assists-c517/magic-bullet-suppository-p190938.html

On Fri, Nov 15, 2019 at 12:14 AM  wrote:

> Hello guys I wanted to ask you question to you know different brands they
> are of suppositories that I could buy off the counter to have a bowel
> movement take your God bless you
>
>
>

Re: [QUAD-L] difficulty in driving

[Eric Olson]

http://www.disableddealer.com/  maybe you could find something here

On Tue, Oct 29, 2019 at 2:05 PM glenn henry  wrote:

> after 53 years post SCI, I now have problems driving. My posture is
> unbelievable, but my shoulder will not allow me to turn the steering wheel.
>
> My van has low effort which helps, but it seems like my shoulder is locked
> up when it gets to a certain angle.
>
> I was looking on the Internet about some of the  alternatives, joystick
> and the small second wheel options. Does anyone have experience either?
>
>
> Most importantly does anyone know of a sale handicapped van with special
> steering? I've checked out Craig's list and eBay, but to no avail.
>
> Thanks,
>
> Glenn
>

Re: [QUAD-L] For people that like of changing weather is good

[Eric Olson]

I'm so not looking forward to winter.  Sucks being homebound for days after
a snowstorm because nobody makes a chair built for snow.


Virus-free.
www.avast.com

<#DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>

On Wed, Oct 23, 2019 at 12:27 PM  wrote:

> In South Texas Brownsville Texas for the people that likes hot weather is
> 90 degrees today it is good for them but for other people that likes cold
> weather on Friday we going to receive our first cold front and is going to
> be according whether is going to be 56 but Sunday back to the hot weather
> 85 what a crazy weather
>