Re: [QUAD-L] Tap Water Enema

[Robert Vogel]

Hi Nicki,

I will start by saying it is always a good idea to consult with your physician 
on these matters.

That said, I’m a T10 para, 36 years post injury and about 15 years ago my 
system started to slow
down a lot, to the point where yearly urology X-rays of my abdomen always 
mentioned “much of
the area is occluded by stool” meaning I was chronically constipated, this 
despite drinking plenty
of water, eating right and getting lots of exercise. I had tried lots of 
options for bowel program with
minimal results.

Around 2012-2013 my urology/bowel nurse practitioner suggested trying the 
Peristeen system
by Coloplast—it uses a ‘rectal foley’ catheter and hand pump system to 
introduce body temp
tap water into the bowel. I found it works fantastic for me. Studies show it 
empties about 1/2 or
more of the colon, which is about 24-inches on average. Compared to a standard 
bowel program
that empties about 6-inches of colon. I’ve been using it for close to 10 years 
and have been accident
free. As a bonus, it empties me so completely I find I feel much better in 
general.

Caveat is that you do need a prescription, need a 45-minute training session, 
the key is finding out 
how much water is optimal for your system, too little and you don’t empty 
enough, too much and you 
keep emptying and emptying. Also and insurance coverage is spotty. Here is a 
link to the website: 
https://products.coloplast.us/coloplast/continence-care/peristeen/peristeen-tai/peristeen-balloon-catheter/peristeen-anal-irrigation-system/
 


Hope this helps,
Bob V

> On Oct 8, 2021, at 3:02 PM, Nichole Rohling  wrote:
> 
> Has anyone or does anyone use a Tap Water Enema?
> I had one once in the hospital. 
> My bowel program has been terrible and
> basically my caregiver has to push and pull on 
> my rear to even get poop to come out.
> Curious if anyone has experience doing a 
> tap water enema and could you share your thoughts.
>  
> Nicki
> C5/6

Re: [QUAD-L] SSI disability

[Robert Vogel]

Hi Jim and Todd,

Jim, you are 100% correct per SSI. The reason I wrote my previous email about 
SSDI (vs SSI) uses is
because Todd’s question suggests he has been working full-time for many years, 
hence he would transition
to SSDI, and SSDI income rules are different than SSI.

Bob V




> On Oct 22, 2019, at 9:30 AM, Jim Lubin  wrote:
> 
> Took awhile to find it. https://www.ssa.gov/ssi/text-income-ussi.htm 
>  in the example calculations it 
> says gross income.
> 
> On Tue, Oct 22, 2019 at 8:19 AM Todd Daugherty  > wrote:
> Hi everyone.  I've passed my 30yr anniversary and am considering 
> transitioning from working full time to SSI disability.  It says that in 
> addition to benefits, I can make between 880 and 1220/mo and still receive 
> benefits but I cannot find anywhere if that is net or gross.  
> 
> Any idea on this? Thanks
> 
> Todd C6 inc '89

Re: [QUAD-L] SSI disability

[Robert Vogel]

Hi Todd,

I *think* you mean SSDI (Social Security Disability Income). The income rules 
are based on net after expenses.
It is important to carefully read expenses allowed by Social Security, and keep 
a folder and document all expenses.
SSDI expenses range from the obvious ones on your tax form, to medical expenses 
(new wheelchair tires, service
dog expenses) and IRWE’s (Impairment-Related Work Expenses). IRWE deductions 
can also include 
donation of work related goods and/or services—lets say somebody does book 
keeping for you for
free, you can deduct the hourly amount you would have paid that person.

I suggest googling the Social Security ‘Red Book’ and studying it. Other good 
ways to learn about 
how SSDI works is to meet with somebody from your local CIL, Center for 
Independant Living as well
as meeting with somebody at Social Security.

Per the $880 and $1220 numbers. On SSDI, $880 is for the ‘Trial Work Period’. 
When you first go on
SSDI you get one Trial Work Period, meaning for 9-months (they don’t have to be 
in a row) any amount
you earn OVER $880 is considered SGA (Substantial Gainful Activity) and uses up 
one Trial Work month—
they don’t have to be in a row, you can make a ton of money one month and then 
earn below $880 the rest
of a year and you will have only used up one month.

Once you have used up your 9-trial months, your SGA goes up to $1220 a month.

Hope I’ve helped and not made things more confusing.

Bob V


> On Oct 22, 2019, at 8:19 AM, Todd Daugherty  wrote:
> 
> Hi everyone.  I've passed my 30yr anniversary and am considering 
> transitioning from working full time to SSI disability.  It says that in 
> addition to benefits, I can make between 880 and 1220/mo and still receive 
> benefits but I cannot find anywhere if that is net or gross.  
> 
> Any idea on this? Thanks
> 
> Todd C6 inc '89

Re: [QUAD-L] Infectious Disease physician

[Robert Vogel]

Hi Eric,

For me, I started doing the Saline/Neosporin Gu solution once in the morning, 
every day. Because I intermittent cath,
it would stay in my bladder for about 4-5 hours. However my urologist says 
putting it in the bladder via a Foley tube
and capping it off for 20 minutes would produce similar results. 

I saw immediate results when I started this, my urine was coming out more clear 
and not smelly etc. and it stopped
my UTI’s cold. This is just my experience. The irrigations have worked so well, 
now I only do an irrigation every few
days and even then only if I notice my urine is getting cloudy or smelly and 
(again, my experience) it clears it right
up. 

If I see really cloudy urine I may do an irrigation in the morning and one in 
the evening just to be really sure and safe.
The thing I like about this is the antibiotic solution doesn’t go beyond the 
bladder so it doesn’t mess up my gut and/or
go throughout the rest of the body.

Hope this helps. I have a bunch of friends with SCI that were having constant 
UTI’s and they ran this idea by their
urologist, got started on the program and they report the same results.

Hope this helps.

Bob V

> On Apr 23, 2019, at 10:41 AM, Eric Olson  wrote:
> 
> How often do you do irrigations?
> 
> On Mon, Apr 22, 2019 at 4:48 PM Robert Vogel  <mailto:rhvsh...@me.com>> wrote:
> Hi Lori and All,
> 
> For what it’s worth, I’m in my 34th year as a T10 para and I intermittent 
> cath. About 12-15 years ago I started getting more frequent
> UTI’s despite doing everything right, plenty of water, clean cath technique 
> etc… I was taking too many courses of antibiotics and it was
> messing with my gut etc.  Around 2011 urologist suggested I try irrigating 
> with a solution of saline mixed with prescription Neosporin GU (it comes
> in a glass ampule).  I’ve only had one UTI since! I asked her if this is 
> appropriate for people with a Foley and/or Suprapubic and she said “Yes, you
> put the irrigation solution in the bladder, cap off the Foley tube for 
> 20-minutes (set a timer!) then let it drain. It has completely stopped my 
> UTI’s
> and anecdotally, has stopped UTI’s of friends of mine in a similar situation.
> 
> Following are links to two columns I wrote for New Mobility magazine about 
> the subject. I hope it helps.
> 
> Neosporin Gu
> http://www.newmobility.com/2011/04/neosporin-gu/ 
> <http://www.newmobility.com/2011/04/neosporin-gu/>
> 
> Bladder Irrigation Solutions for UTI Reduction
> http://www.newmobility.com/?s=Neosporin+GU 
> <http://www.newmobility.com/?s=Neosporin+GU>
> 
> Bob Vogel
> 
> 
>> On Apr 22, 2019, at 2:14 PM, Lori Michaelson > <mailto:lorilivin...@gmail.com>> wrote:
>> 
>> When I mentioned in my last e-mail that I tried using an irrigation solution 
>> but could not come up with the name I just found it by doing a search on 
>> Veteracin vf being used in the bladder on the Care Cure Community. I see 
>> that back in 2011 someone was inquiring about the Veteracin for irrigation 
>> or instilling. There was a long thread on this and then one of them 
>> mentioned the solution I was trying to think of and it was Renacidin I 
>> resorted to (before even having all these problems) that caused my bladder 
>> wall to bleed even though I started out with a very small amount.  :-( 
>> 
>> On Mon, Apr 22, 2019 at 1:33 PM Eric Olson > <mailto:whee...@wi.rr.com>> wrote:
>> You can buy it on Amazon but this place is the cheapest I've found 
>> 
>> https://expressvet.pharmacy/product/vetericyn-vf-plus-wound-and-skin-care/ 
>> <https://expressvet.pharmacy/product/vetericyn-vf-plus-wound-and-skin-care/>
>> 
>> I have ordered from them in the past 
>> 
>> On Mon, Apr 22, 2019 at 1:52 PM Lori Michaelson > <mailto:lorilivin...@gmail.com>> wrote:
>> I'm definitely not going to the hospital or a hospital since that is where I 
>> got it but I thank you Dana for replying.
>> 
>> Eric... where do you get Veteracin vf?  I mentioned in my e-mail that the 
>> bacteria as MRSA.
>> 
>> On Mon, Apr 22, 2019 at 9:22 AM Eric Olson > <mailto:whee...@wi.rr.com>> wrote:
>> All I could suggest is irritating with vetericyn vf and a drug called 
>> methenamine.  It turns your urine into formaldehyde.  The problem is that 
>> you have to keep your urine acidic for it to work.  So lots and lots of 
>> vitamin c round the clock.  Neither is a cure, but together they might help 
>> with your pain.  What's the bug?  
>> 
>> On Sun, Apr 21, 2019 at 4:48 PM Lori Michaelson > <mailto:lorilivin...@gmail.com>> wrote:
>> Has anyone had to resort to go into an Infectious Disease Phy

Re: [QUAD-L] Infectious Disease physician

[Robert Vogel]

Hi Lori and All,

For what it’s worth, I’m in my 34th year as a T10 para and I intermittent cath. 
About 12-15 years ago I started getting more frequent
UTI’s despite doing everything right, plenty of water, clean cath technique 
etc… I was taking too many courses of antibiotics and it was
messing with my gut etc.  Around 2011 urologist suggested I try irrigating with 
a solution of saline mixed with prescription Neosporin GU (it comes
in a glass ampule).  I’ve only had one UTI since! I asked her if this is 
appropriate for people with a Foley and/or Suprapubic and she said “Yes, you
put the irrigation solution in the bladder, cap off the Foley tube for 
20-minutes (set a timer!) then let it drain. It has completely stopped my UTI’s
and anecdotally, has stopped UTI’s of friends of mine in a similar situation.

Following are links to two columns I wrote for New Mobility magazine about the 
subject. I hope it helps.

Neosporin Gu
http://www.newmobility.com/2011/04/neosporin-gu/ 


Bladder Irrigation Solutions for UTI Reduction
http://www.newmobility.com/?s=Neosporin+GU 


Bob Vogel


> On Apr 22, 2019, at 2:14 PM, Lori Michaelson  wrote:
> 
> When I mentioned in my last e-mail that I tried using an irrigation solution 
> but could not come up with the name I just found it by doing a search on 
> Veteracin vf being used in the bladder on the Care Cure Community. I see that 
> back in 2011 someone was inquiring about the Veteracin for irrigation or 
> instilling. There was a long thread on this and then one of them mentioned 
> the solution I was trying to think of and it was Renacidin I resorted to 
> (before even having all these problems) that caused my bladder wall to bleed 
> even though I started out with a very small amount.  :-( 
> 
> On Mon, Apr 22, 2019 at 1:33 PM Eric Olson  > wrote:
> You can buy it on Amazon but this place is the cheapest I've found 
> 
> https://expressvet.pharmacy/product/vetericyn-vf-plus-wound-and-skin-care/ 
> 
> 
> I have ordered from them in the past 
> 
> On Mon, Apr 22, 2019 at 1:52 PM Lori Michaelson  > wrote:
> I'm definitely not going to the hospital or a hospital since that is where I 
> got it but I thank you Dana for replying.
> 
> Eric... where do you get Veteracin vf?  I mentioned in my e-mail that the 
> bacteria as MRSA.
> 
> On Mon, Apr 22, 2019 at 9:22 AM Eric Olson  > wrote:
> All I could suggest is irritating with vetericyn vf and a drug called 
> methenamine.  It turns your urine into formaldehyde.  The problem is that you 
> have to keep your urine acidic for it to work.  So lots and lots of vitamin c 
> round the clock.  Neither is a cure, but together they might help with your 
> pain.  What's the bug?  
> 
> On Sun, Apr 21, 2019 at 4:48 PM Lori Michaelson  > wrote:
> Has anyone had to resort to go into an Infectious Disease Physician? If so, 
> why?
> 
> I acquired a nosocomial infection (from a hospital) a little over a couple 
> years ago and it won't go away. It used to be responsive to oral antibiotics 
> (specifically Nitrofurantoin - a.k.a. Macrobid) but it has now become 
> resistant to that.
> 
> My urologist put me on Gentamicin injections but that did not work either. I 
> don't have a fever but I am doubled over in bladder pain and flank pain. My 
> urologist is at a loss as to what to do saying there is nothing that can be 
> done to get rid of MRSA in my bladder. That is what I have.
> 
> Thanks and Happy Easter!
> 
> -- 
> "Petting, scratching and cuddling a dog could be soothing to the mind and 
> heart and deep meditation and almost as good for the soul as prayer." ~Dean 
> Koontz
> 
> 
> -- 
> "Petting, scratching and cuddling a dog could be soothing to the mind and 
> heart and deep meditation and almost as good for the soul as prayer." ~Dean 
> Koontz
> 
> 
> -- 
> "Petting, scratching and cuddling a dog could be soothing to the mind and 
> heart and deep meditation and almost as good for the soul as prayer." ~Dean 
> Koontz

Re: [QUAD-L] Sore

[Robert Vogel]

Hi Greg,

My ‘2-cents’, check out GlideWear underwear and/or shorts. They have a two 
layer backside that 
‘slides against each other’ thus removing most shear. They also make custom 
cushion covers.

Here is a link to an article I wrote about the shorts for New Mobility 
magazine. I’m 34-years into
being a T10 complete para and I wear GlideWear exclusively.
http://www.newmobility.com/2017/11/glidewear-skin-protection-underwear/ 


Bob V

> On Mar 27, 2019, at 7:24 PM, Greg  wrote:
> 
> I have a small butt sore, been going to the wound doc once a week to get 
> debrided. It was just a surface wound, like a sheered area of skin. It was 
> 66% healed on Mon. Today its twice as big as when it started. Something 
> caused sheer, but only sometimes. Wearing jeans 1 day is what caused the 
> sore. Doc said it looked like sheer, not pressure.
> 
> Greg

Re: [QUAD-L] Wondering--Power Chair for 4-year-old

[Robert Vogel]

Hi Ismael,

I read your email—an amazing life you are leading, and huge kudos to you for 
reaching out and helping this child and family!!!
I hope my input helps you help them.

For what it is worth, I have worked as a manufacturer’s rep for a wheelchair 
company (Everest & Jennings in the mid-1990’s) as well
as a representative for a local DME, wheelchair store in the early 2000’s. Even 
back in 1995 we had pediatric power wheelchairs and
controllers—chin control, or sip ’n puff—that could accommodate a 
four-year-old. In fact I have a vivid recollection of bringing a pediatric
power wheelchair for an evaluation of a child that had no movement below the 
neck and was around age 4.  The eval went well, and the
child was excited and happy to be in control of a power chair and moving around 
on their own.  As long as the 4-year-old has the cognitive 
ability to drive a chair—which should be no problem for an average 
4-year-old—major wheelchair manufacturers, Permobil, Sunrise,
and Quantum all make pediatric power chairs that can easily fit a 4-year-old.

In addition, in my  job a journalist for New Mobility magazine I get to attend 
the yearly International Seating Symposium, part of which includes
displays of the latest and greatest mobility devices by wheelchair 
manufacturers—I have seen the pediatric versions of the power wheelchair 
manufacturers
below and each company makes a power chair that can custom fit a 4-year-old and 
be outfitted with controls and seating to accommodate them.

Quantum Pediatric power chair(s):  
https://www.quantumrehab.com/quantum-power-bases/kozmo.asp
https://www.quantumrehab.com/quantum-power-bases/kozmo-portable.asp

Sunrise Pediatric power chairs:  
http://www.sunrisemedical.com/power-wheelchairs/zippie/mid-wheel-drive

Permobil Pediatric power chairs: 
https://permobilus.com/products/power-wheelchairs-by-permobil/pediatric/

Hope this helps.  The key is—as Eric Olson wisely explained—the family needs to 
talk with a DME provider (wheelchair dealer) in their
area.

Sincerely,
Bob V 

> On Sep 30, 2018, at 3:15 PM, Eric Olson  wrote:
> 
> There's got to be something out there for him.  They should speak to a DME 
> provider in their area.  
> 
> On Sun, Sep 30, 2018 at 6:13 AM Ismael Cavazos  > wrote:
> Hello guys October 8 is going to be 37 years that I've been a quadriplegic 
> paralyzed from the neck down and connected to a respirator I was 18 years old 
> I was 18 days away that I was going to turn 19 when the doctors told my 
> mother at that time that I was going only survive 72 hours beside before my 
> accident I was already legally blind but when I was born I was completely 
> blind after 6 surgeries on my eyes I started seeing a little I started seeing 
> when I was 11 years old doctors consider me legally blind I could see a 
> little better than nothing most of my life since I been a quadriplegic I was 
> in the nursing home 2001 I got out I was scared to get out because like I 
> said most of my life I was in the nursing home I thought it wasn't possible 
> for person in my condition to be out from the nursing home and connected to a 
> respirator I knew it that I did not need to prove to no one that I was able 
> to do it outside the nursing home that I needed to prove only to myself it 
> was hard and scary in the beginning with God help I continued being outside 
> the nursing home and I was the right choice I did for myself since I been a 
> quadriplegic only one time bed sore and I was in the nursing home since then 
> I haven't had one until now my body is 100% better than any quadriplegic that 
> is in the nursing home no rashes no bed sores at all I used to get more sick 
> when I was in the nursing home I used to go more often to the hospital when I 
> was in the nursing home when I was there out of the ear I used to go to the 
> hospital 5 times out of the year it wasn't one thing was another but I was 
> getting more sick now that I'm out sometimes I go one time out of the year to 
> the hospital or sometimes to years passed by and I don't go to the hospital 
> at all I been blessed many times different ways several times and I've been 
> lucky the only thing I'm not getting any younger like I said I'm blessed and 
> I am continually being bless by Jesus let me tell you guys something else on 
> Friday I met this couple they have a little boy that is 4 years old he is 
> paralyzed from the neck down and also connected to a respirator's he is very 
> alert the sad thing about it is not able to talk and also he has a tooling 
> inside his nose so he can eat his mother and father was telling me they were 
> trying to get him a wheelchair but according medicate they told his mother 
> and father medicate doesn't cover his wheelchair because there's no 
> wheelchair for his age because she's too small that I have to wait until he 
> gets older so he can get a wheelchair I do not agree on that and mother and 
> father 

Re: [QUAD-L] Broken leg..

[Robert Vogel]

Hi BeeJ,

For what it’s worth, I’ve written about this subject and know many people with 
SCI that have 
broken leg bones.  You do NOT want a hard cast.  The best option is to get a 
soft cast or if
the fracture needs more stability a custom orthotic cast that splits in half, 
is well-padded and
you can take apart (held together with velcro) so you can do skin checks.  Here 
is a link to
an article I wrote on SCI, osteoporosis and fracture.  If you scroll down to 
the 14th paragraph
you will read about a person with a Tib/Fib fracture and how they managed to 
heal it:
http://www.newmobility.com/2009/12/osteoporosis-update/

Another option to ask your physician(s) about is a full length leg imobilizer 
with knee hinge
similar to the photo here:  
http://www.orthopaedicsandtrauma.com/acatalog/iromcoolirom.gif

Hope this helps.

Sincerely,
Bob Vogel


> On Sep 21, 2017, at 6:19 PM, Bobbie Humphreys  
> wrote:
> 
> I broke my leg dancing  
> Some drunk guy thought I was faking being in a manual chair, this is 1974, 
> and pulled me out of my chair.
> I had a plaster cast and got pressure sores on my heal.
> Bobbie 
> 
> "Be the change you want to see in the world". Gandhi
> 
> On Sep 21, 2017, at 8:11 PM, Jeffrey Gaede  > wrote:
> 
>> I've had a similar break and broke it in a similar way. They put me in a 
>> removable boot both because it was a spiral fracture and they were concerned 
>> about potential pressure sores. I would pay attention to any signs that 
>> something is not right and that something could be pressure from somewhere. 
>> I've also had a cast on a broken bone before and everything went perfectly 
>> fine.
>> 
>> Jeff
>> From: BeeJ >
>> To: quad-list@eskimo.com  
>> Sent: Thursday, September 21, 2017 5:04 PM
>> Subject: [QUAD-L] Broken leg..
>> 
>> So I broke my leg Last Friday Night turning around in the dark with my power 
>> chair. The toe of my boot caught on my bed and I twisted it and heard a pop. 
>> So now I have a cast up to my knee that I can't feel. Anyone on here have 
>> any experience dealing with a broken bone below your level of injury? I'm a 
>> little worried about what's going on inside that cast.
>> 
>> -Bj
>> 
>> 

Re: [QUAD-L] BLADDER MEDS AND COGNITIVE IMPACT

[Robert Vogel]

Hi Paul and all,

Here is a link to a column I wrote for New Mobility on anticholinergic 
medications and dementia
to help put things in perspective as well as non-anticholinergic medication 
options to quiet the
bladder:  http://www.newmobility.com/2016/08/anticholinergic-medications/ 


Bob Vogel

> On Aug 30, 2017, at 12:56 PM, Paul Jacobson  wrote:
> 
> Hi, I recently read these 2  articles on Anticholinergic Drugs.
> 
> https://www.peoplespharmacy.com/2011/01/17/protecting-brain-power-as-we-age/
> https://www.peoplespharmacy.com/2017/05/04/where-can-i-find-a-list-of-anticholinergic-drugs/
> 
> Detrol LA, which I take, has been identified as high anticholinergic (AC) 
> action.
> The greater the AC activity the more worrisome the cognitive impact.
> 
> My mom now has dementia, so I am concerned that my bladder meds are an
> issue.
> 
> Best to all of you.
> pj 

Re: [QUAD-L] surgery inquiry? Shoulder Replacement Surgery

[Robert Vogel]

Hi Carolyn,

Here is link to an article I wrote about shoulder replacement surgery, ( New 
Mobility September 2015)
that includes interviews from several wheelchair users that have had it done.  
Hope it helps.
http://www.newmobility.com/2015/09/shoulder-replacement-wheelchair-users/ 


Sincerely,
Bob Vogel


> On Aug 25, 2017, at 3:25 PM, greg  wrote:
> 
> No, But wish I could replace mine. I've had every test possible, but they 
> still can't figure out the cause of my pain.
> Greg
> 
> > Has anybody on the loop had shoulder replacement surgery?
> >
> > Carolyn

Re: [QUAD-L] employment a quadriplegic could do from the power chair

[Robert Vogel]

Hi  Debra and all,

Per Medicaid—if you manage to find work that pays you more than a couple 
hundred dollars a month,
check to see if your state has a “Working While On Medicaid” program.  I 
*think* most states have some
form of “Buy-in” program.  For instance in California, Medicaid is called 
Medi-Cal, and the program is called
the Medi-Cal 250% Working Disabled Program.  You must be disabled, not exceed 
the cash and property limits,
however you can make up to $56K a year and still keep Medi-Cal if you work.  
There is a monthly payment scale
you buy the Medicaid, it starts at $20.00 a month if you are making *around* 
$1600 or less, and the more you make
the more your monthly payment is.  Best of luck on finding income.

I do know that blogging has become popular, and if you find your voice—one that 
others are interested in—you may be
able to earn some money blogging for a company’s website.  If you look up 
various companies in the SCI world you will
see they have a blog—for instance Easy Stand has a blog, and if you look the 
other companies, quite a few have blogs
to inform and attract potential clients.

Bob V
 
> On Mar 29, 2017, at 10:19 AM, Jim Lubin  wrote:
> 
> This is something that might work for you https://www.upwork.com/ 
> 
> 
> 
> 
> On Tue, Mar 28, 2017 at 6:17 PM, DEBRA DEW  > wrote:
> 
> I'm trying to think of ways I could earn a small amount of income. I'm hoping 
> you might be able to make suggestions. I have a journalism background in 
> college and edited our college newspaper. I do enjoy writing.I can only earn 
> a couple hundred dollars a month and still keep my Medicaid insurancei but 
> even that was better than nothing.
> 
> 
> Any ideas you could throw at me I would appreciate. I don't seem to be very 
> creative in this department.
> 
> Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot
> Currently: Quadrapeligic due to advanced MS and living in a nursing home
> Phone: 561-588-4333 
> SC student 20yrs  
> ROMANS 8:28
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 
> 

Re: [QUAD-L] Great Quad movie "Waterdance"

[Robert Vogel]

Jim and Jeffery, well said!  I also agree.  Ironically the tagline for the 
movie was “Live Boldly”—are you kidding me?

Speaking of great Quad Movies, there is an amazing Must Read quad book that is 
a true story called: "Lucky Break: A Love Story”  The true story of Kirk 
Kilgour, an Olympic Level Volleyball player, who became a C4 complete quad, no 
movement below his shoulder in his mid-20’s he was hired to coach the Italian 
Volleyball team—a huge sport in Italy—and played professionally.  

He was such an amazing person that—true story—after I finished a speech for the 
National Spinal Cord Injury Association he came 
up to me to chat, and at the same time a very attractive woman came up to talk 
with me as well.  She offered to get us drinks and in
typical male fashion I thought “man if I can ditch the quad I might have a 
chance with this woman”.  As we got to talking I found his stories so amazing 
that by the time she got back with our drinks my thought had changed to, “ditch 
the woman, I want to hear more about this guy’s life”  we became close friends.

The book is about his life and is written by a woman that fell in love with him 
when he was in his early 40’s.  She was beautiful, athletic, lived in Aspen and 
spent her days skiing, hiking, biking and met him by chance—she wanted to get 
good seats to watch
events at the 1996 Olympics in Atlanta and he needed an attendant—it turns out 
a friend of a friend introduced them via phone, she
flew out to LA to do a week-long-trial run to see if it would work.  It didn’t, 
she said she couldn’t be his attendant because she had fallen in love with 
him—the feeling was mutual.  The book describes their life, the highs and lows, 
world wide travel, Kirk meeting the
Pope and the Pope asking Kirk for his autograph—true story.  

I’m hoping somebody grabs hold of the book and turns it into a move, it would 
be fantastic!

The book is available at Amazon.  Here is a review I wrote about it:  
https://permobilus.com/lucky-break-a-love-story/

Bob Vogel

> On Mar 13, 2017, at 12:37 PM, Jim Lubin  wrote:
> 
> I made a list on IMDB Movie's featuring Quadriplegics
> http://www.imdb.com/list/ls051082586/ 
> 
> 
> On Sat, Mar 11, 2017 at 10:32 AM, RONALD L PRACHT  > wrote:
> I watch a lot of tv but never came across this movie until I was on youtube 
> last night. Its about three guys that get paralyzed and their stuggles to 
> deal with it. Has Helen Hunt, Wesley snipes and others in the 1992 flick 
> Waterdance. Pretty realistic for a movie.
> 
> 1992 The Waterdance 
> 
> 
> 
> Ron
> 
> 
>   
> 1992 The Waterdance
> The Waterdance 1992 Movie
>  
> 
> 

Re: [QUAD-L] Posttraumatic Syringomyelia and related condition

[Robert Vogel]

Hi Bobbie and all,

There has already been much excellent information shard about about 
Syringomelia (Syrinx) on this site including (I forgot  the person that 
mentioned Dr. Scott Falci Craig hospital (as well as Dr. Barth Green at the 
Miami Project) as being the top people
in the field in terms of Syrinx and SCI.  Dr. Falci and Charolette (sp?)at 
Craig Neurosurgery are very good at answering questions and providing 
information about Syrinx, based on symptoms etc. over the phone—Dr. Falci has 
performed well over 1000 Syrinx surgeries and helps you figure out, via phone 
based on symptoms, statistics, and his experience (he has operated on well over 
people with Syrinx’s) when one needs treatment (surgery) vs. when to leave it 
alone.

Here is a link to an article I wrote for New Mobility magazine about SCI and 
Syrinx, hope the information is helpful.
http://www.newmobility.com/2011/01/paramedic-syrinx-and-pain/ 


Bob Vogel

> On Jan 23, 2017, at 6:26 PM, Bobbie Humphreys  
> wrote:
> 
> It is well over 50% of spinal cord injury who develop a syrinx, some with in 
> a month of injury some many years and then others ... never.
> Bobbie 
> 
> "You must fail in order to succeed"
> 
> On Jan 22, 2017, at 8:02 PM, Lori Michaelson  > wrote:
> 
>> Yes, I have known for years that 3 to 4% of persons with traumatic spinal 
>> cord injuries get posttraumatic syndrome syringomyelia and I fell into that 
>> 3% with severe symptoms whereby I had to quit work.
>> 
>> Those "others" are able-bodied people who developed a form of syringomyelia 
>> called Chiari Malformation. Even though vastly different they have the same 
>> type of "syrinx."
>> 
>> It is similar in that a Chiari Malformation it is an abnormal collection of 
>> CSF [cerebral spinal fluid] in the spinal cord (syrinx) and is also 
>> confirmed by cine MRI and causes severe or worsening symptoms.
>> 
>> ~Lori
>> 
>> On Fri, Jan 20, 2017 at 10:45 PM, Aaron Mann > > wrote:
>> More info: "Approximately 3-4% of persons with traumatic SCI develop 
>> clinically symptomatic PTS. A larger percentage of persons have clinically 
>> silent syrinx cavities diagnosed by imaging techniques."
>> 
>> http://emedicine.medscape.com/article/322348-overview 
>> 
>> ​
>> 
>> 
>> 
>> -- 
>> "Petting, scratching and cuddling a dog could be soothing to the mind and 
>> heart and deep meditation and almost as good for the soul as prayer." ~Dean 
>> Koontz

Re: [QUAD-L] Syrinx

[Robert Vogel]

Hi Again Bobbie and All,

My previous email was sent via iPhone, now that I’m at my computer I can give 
you all the details.

In my opinion, after doing a lot of research, the two places that know the most 
about Syrinx—(Syringomyelia)
are the University of Miami School of Medicine (Miami Project) and Craig 
Hospital in Denver.

I would go right to the expert, right away!!!

I’ve had the good fortune to interview and ask questions of Craig Hospital’s 
expert on Syrinx, Dr. Scott Falci.
Dr. Falci is an expert on the subject and has done surgery on over 1000 people 
with SCI and Syrinx.  
Dr. Falci and his team are fantastic at answering questions and can give you a 
lot of information on treatment
options based on your symptoms (information, not advice) over the phone.  They 
are quite quick to respond
to phone calls, again, in my experience they return phone calls within a day or 
two.  The main person that takes
the phone calls is Charlotte.  Their direct number (for Rehabilitative 
Neurosurgery) is (303)761-5281 or you can
email them at:  cind...@craighospital.org 

Their webpage is:  
https://craighospital.org/programs/rehabilitative-neurosurgery 


They treat based on symptoms—from the symptoms you describe, if it was me, I’d 
be on the phone first thing
tomorrow.  The sooner you get a handle on this the better.  From what I 
understand *sometimes* you can regain
what you have lost due to Syrinx, but the key is if you are loosing feeling 
and/or movement, it is important to find
out what to do and do it right away.

I have talked with quite a few people that have been treated by Dr. Falci and 
they say he is fantastic, both as a surgeon
and as a knowledgable, empathetic doctor.

Hope this helps.

Bob Vogel

> On Dec 26, 2016, at 6:09 PM, Bobbie Humphreys  
> wrote:
> 
> I was diagnosed with a syrinx back in 1995 and, until now, have had no real 
> problems.
> 
> Since the first Saturday of December I can not feel my right hand 駱 and using 
> it, like I've been able to, has become nearly impossible.
> 
> Picking up and holding a fork, tooth brush, spoon, pen, paint  brush, 
> opening medications and even driving my chair has become an extreme challenge.
> 
> Does anybody know of any way to alleviate the pressure?
> I don't want to get it drained because my Doctor said it can come back 
> immediately. No way do I want a shunt.
> Bobbie 
> 
> "You must fail in order to succeed"

Re: [QUAD-L] Pressure mapping

[Robert Vogel]

Hi Glenn,

I think Steve hit the nail on the head.  I’ll add my two cents.  I’m a para, 
31-years-post injury.  “IF” your insurance pays 
for pressure mapping it is a good tool to compare how you “map” (pressure) on 
different cushions.  If you are able to do
this, also ask to look at the “map” which appears in real time on a computer 
screen and see how the hot and cold (high and
low pressure) areas change as you shift your weight if you are able.

Having said that, the best way to check for pressure a mirror-skin check of 
your butt and other possible pressure areas, nothing
beats a mirror.  Case in point—I got a new cushion and it *mapped* perfectly.  
I sat in it all day and when I got home I did a skin
check and the skin over both ishiums was angry-hot-red and remained that way 
for several hours.  Needless to say I went back
to my ROHO.

I also had a custom Aspen Seating seat molded for my mono-ski—I spent several 
days at Ride Designs/Aspen seating making 
sure it was perfect, and again the final “proof” that the pressure distribution 
was perfect was to sit in the mono-ski for an hour or 
more, then get out of the ski, strip down and do a mirror, skin check.

Bob Vogel

> On Nov 22, 2016, at 11:04 AM, Quad Dude  wrote:
> 
> Glenn,
> 
> I have had pressure mapping done several times when it was offered at no cost 
> or covered by my insurance, but I seriously question its value.
> 
> First, the mapping results are only applicable to the exact conditions when 
> the mapping occurred, including your relative position (front, back, left, 
> right, upright or reclined at all), what ever you are sitting on, your 
> weight, clothing, and possibly other factors I have not thought of. Even 
> small deviations of any of these factors can change the results.
> 
> Second, most pressure mapping reveals the obvious. Most have greater pressure 
> under their ischial tuberosity (butt bone) than anywhere else. You may have 
> more or less on one side or the other, but again, it all comes back to how 
> and where you are sitting and all the other factors mentioned above at the 
> time of the mapping.
> 
> Do I think pressure mapping is worthless? No, but I think its value is 
> overstated. I asked a physical therapist specializing in wheelchair seating 
> who has worked at one of the nation's premier SCI rehab facilities for nearly 
> 30 years what he thought of pressure mapping. He said he thinks it's a way 
> for them to make money and for the administration to show something visual 
> when doing facility tours, but provides marginal value at best.
> 
> I'm guessing you will get plenty of responses extolling its virtues.
> 
> Steve - C4, 28 years
> 
> On Tue, Nov 22, 2016 at 12:49 PM, glenn henry  > wrote:
> Hello,
> 
> Has anyone on the site been pressure mapped? If so do you think that it 
> helped in anyway?
> 
> With the price of some items coming out at a lower price, does anyone have a 
> unit that they purchase for home use?
> 
> Thanks
> 
> Glenn
> 

Re: [QUAD-L] Headgear or tongue drive?

[Robert Vogel]

For information on headgear your best bet is to go to a Durable Medical 
Equipment (DME) store that does
complex rehabilitation and ask them.

Of the top of my head, for “head switches” to control a wheelchair, as well as 
other types of controls check
out Adaptive Switch Laboratories, here is a link to their head switch page 
which includes fibre optic controls.
http://www.asl-inc.com/products/product_listing.php?cat=100_Series 


Bob V


> On Sep 29, 2016, at 4:48 PM, Gail Overton  wrote:
> 
> Another question for the list. Do you know of any commercially available 
> headgear, eye-tracking, or tongue-drive systems for a quadriplegic to drive 
> their own chair. The Internet seems to have very little information.

Re: [QUAD-L] Aaaaaaaaaaaaahhhhh

[Robert Vogel]

I see my dermatologist once a year to do a mole check.  The cost of living a 
life of skiing, sailing, and surfing—
as well as being fair skinned.

Last check up she saw a few brown spots on my back and said “you are getting 
some wisdom areas”.  I replied,
“umm, what is a wisdom area?”  She said “I used to call them age spots but it 
seemed to make my patients sad,
so I tell them the start to appear with age and wisdom.”   Works for me…


> On Sep 10, 2016, at 9:12 PM, Quadius  wrote:
> 
> I've got a few on my chest which of just appeared over the last six months 
> and they say their sunspots. Strange, my chest hasn't seen the sun in 21 
> years.
> 
> Maybe next time I'm at the dermatologists I can get them to burn them off 
> with all of the other stuff :-)
> 
> On Sat, Sep 10, 2016 at 8:44 PM, greg  > wrote:
> I AM TURNING INTO MY GRAMPA...
> I am getting big spots on my hands, he called them Gingersnaps, liver spots, 
> and sun kisses.
> Dime size dark red/brown. Had them checked to be safe, no problems.
> I spend sooo much time in the sun, I worry a bit about skin cancer.
>  
> Greg
> 

Re: [QUAD-L] Have sore on rear. Have Roho question

[Robert Vogel]

Hi David,

Bob Vogel here.  I’m a T10 complete para, 31 years post injury and I’ve had 
experience in both
questions you ask.

Per your ROHO question—the first and most important thing to do is have your 
sore documented by
your doctor, either your primary care doctor or PM doc—meaning you get in to 
see the doc, and the
sore is in your medical chart.  From there it *should* be a slam dunk to get a 
ROHO.  Usually the best way
to go about it is can call your local DME provider (wheelchair and cushion 
store) and tell them
you have a pressure sore, you are on an egg crate cushion and and need to move 
up to a ROHO at which 
point they *should* take you step by step through the process which is: 1. 
Document by doctor.  2. Set up an 
appointment with a seating clinic, either a physical or occupational therapist 
that specializes in seating. 3. The 
DME provider then does a great deal of paperwork contacting your insurance 
provider for approval, getting detailed 
chart notes from seating clinic as well as chart notes from your doctor, 
getting a detailed “letter of medical necessity” for 
your cushion etc.  This is a lengthy and time consuming process, however in the 
case of a pressure sore you should
be given top priority.

An example of this—30 years ago—despite asking for a ROHO, I was sent home from 
rehab on a memory foam cushion.
Despite constant weight shifts and mirror-skin-checks every night, about three 
months after I was out of rehab I developed
a small pressure sore (about the size of the round eraser at the end of a 
pencil).  It wasn’t deep, but it wouldn’t heal.
I went to my PM doc, had them look at the pressure sore and they contacted my 
DME provider and my insurance
(Medicaid) paid for a ROHO—which I got within a month.  A combination of the 
ROHO, lots of weight shifts, spending
lots of time off my butt, I was able to heal the sore.

Per your question about a wound care nurse, they are vital! A wound care nurse 
works wonders helping heal a
sore as fast as possible.  A pressure sore needs very specific care and 
environment at different stages of 
healing—such as debridement, (removing dead skin in or around the wound), 
specific types of packing materials 
(stuff that goes in the wound to give healing cells something to hang on to), 
creams for specific PH, etc. etc.  Wound
care nurses know exactly what to do with a sore and when to do it to heal you 
as fast as possible.

Hope this helps.

Bob Vogel




> On May 24, 2016, at 8:58 AM, DAVID LEWIS  wrote:
> 
> Hiya, 
> I have a sore starting on my butt. It wont seem to heal.
> They asked me if i needed a wound nurse. What do they do.
> 
> And does Medicare cover the cost of one of those   Roho Cushions?
> I have been using those foam eggrcrate ones.
> Thank you.  Quad over 35 years.

[QUAD-L] Interview request for New Mobility magazine

[Robert Vogel]

Hi All,

Bob Vogel here, senior correspondent for New Mobility magazine.  We are working 
on an article
Medical Marijuana it's use to treat pain, and/or spasticity or other problems 
associated with spinal cord injury.  We are looking for people with spinal cord 
injury (SCI) that have a Medical Marijuana card
and use it to treat one or more of these conditions, and will be OK being 
interviewed for the
article.  We can use your real name or if you prefer to stay anonymous, we can 
do that and 
guarantee a anonymity and a pseudonym. 

This is an important subject, and other wheelchair users offer important and 
vital insight!

If you are interested, please contact New Mobility editor Tim Gilmer at 
tgil...@newmobility.com 

Sincerely,
Bob Vogel

Re: [QUAD-L] New mobility device

[Robert Vogel]

Hi Gail,

To answer your question—per an add-on device for a manual chair your best bet 
is the Spinergy ZX-1.
Here is a link to an article I wrote about it for New Mobility: 
http://www.newmobility.com/2015/11/spinergy/ 

It will take you on trails, gravel and sand—to a degree—the front casters of 
your chair will bog you down
in soft beach sand.  It is driven with a joystick.

If you need more than that, there are power chairs that can take you almost 
anywhere including snow
and deep sand.  If that is what you are asking about, let me know and I will 
find the information.

All the best!
Bob Vogel

> On Apr 18, 2016, at 12:05 PM, Gail Overton  wrote:
> 
> Is there anything out there for a quad who cannot move their hands for 
> off-road access? And in sand/rock?
>  
> From: RONALD L PRACHT [mailto:r.pra...@sbcglobal.net 
> ] 
> Sent: Monday, April 18, 2016 10:19 AM
> To: Quad-list Post
> Subject: Re: [QUAD-L] New mobility device
>  
> It should be awesome on trails and such. Im hurting a lot so I figured I 
> should get it now while Im still able to enjoy it. The next one Im going to 
> buy is a handcycle with electric backup. Next year I might sell my firefly 
> and get the other one. I found out the attachable cycles are better for me 
> because I don't have to transfer and take a chance on skin breakdown. I can 
> use it a lot more this way. I just keep them in the garage and just roll out 
> there, hook up and go.takes about 2 minutes to hook up. its really 
> cool some of the devices they have for people, its a shame they cost so 
> much..but at this point ive realized life is short and you cant take 
> anything with you when you go.
>  
> Ron
>  
> 
> On Monday, April 18, 2016 11:32 AM, Danny Hearn  > wrote:
>  
> 
> Those are cool Ron, wish I would have tried those early in my quad years, but 
> never got good enough in a manual chair except to move around in level stores 
> while shopping, been in a powerchair for over 18 years now. I bet you could 
> really enjoy that on trails .  Dan H***
>  
> 
> On Monday, April 18, 2016 11:14 AM, RONALD L PRACHT  > wrote:
>  
> 
> I have been using my rio dragonfly handcycle since 2010, so I decided to 
> upgrade and get the electric powered rio firefly. I found one never used on 
> ebay for 1500.00 dollars shipped. It looks great, attaches to the front of a 
> manual chair and has a speedometer and odometer, capable of speeds of 12mph. 
> Got a buddy coming to help me get it fitted to my chair tomorrow. Im 
> expecting it to really be a blast once everything is worked out. My quad 
> hands make it tricky to use a standard bike brake, but Im going to slowly 
> adapt it. Rio mobility really makes good stuff, Ive put opver 1000 miles on 
> my rio dragonfly with virtually no problems except chain adjustment, worn 
> tire and my c5 grips wore out the Velcro.
>  
> Ron

Re: [QUAD-L] help, AD is happening when laying down at bedtime

[Robert Vogel]

Hi Derrick and all,

I am attaching a link for a column wrote for New Mobility about AD.  The bottom 
line is any type of stimulus (pain or 
discomfort, or intense physical pleasure stimulus) can set off AD.  Here is the 
link to the column and at the bottom 
of the article is the SCI Nurse hotline number.
http://www.newmobility.com/2011/11/autonomic-dysreflexia/ 


Best!
Bob Vogel

> On Apr 8, 2016, at 1:55 PM, Derrick  wrote:
> 
> Hey all,
> My c/5 friend 25 years post sci, has been having AD every night. Here is his 
> last email, "just got back from er, get ad every night this week when i lay 
> down at bed time, did blood work and ct scanall normal blood and scan 
> except kidney stones and sinus infection...not sure whats causing it but its 
> been bad."
> Does anybody have had similar AD? Would kidney stones cause it to happen only 
> when you lay down?
> 
> Someone posted a phone number for a SCI hotline, or SCI nurse and doctor to 
> answer sci questions? What was the phone number?
> 
> Thanks in advance if you will reply to help him figure this AD out,
> Derrick W in PA
> 
> ps: we live in very rural area so no major hospital or doctors. just a local 
> called "band aide station" hospital
> 

Re: [QUAD-L] a question

[Robert Vogel]

Hi Dianna,

It’s called “Body Integrity Disorder”, something goes haywire in a person’s 
mind and they feel as if they
are “supposed” to have some type of disability, spinal cord injury, amputation 
etc.  Very bizarre, and sad.
Seems quite real, although their minds can’t seem to wrap themselves around 
real SCI problems like UTI’s
bowel & bladder accidents, pain, etc.—seems they often “choose” to be low level 
incomplete injuries…

Here is a link to a blog I wrote about it:  
https://roho.com/paraplegic-feels-trapped-in-a-non-disabled-body/ 
<https://roho.com/paraplegic-feels-trapped-in-a-non-disabled-body/>

Bob V
> On Apr 6, 2016, at 11:15 AM, diannal...@aol.com wrote:
> 
> DaveOc once told us about "wheelchair want to be's" I quess they fake their 
> injuries and used wheelchairs. they have a website but if you googled it, i'm 
> sure you'll find it. I don't have the link. he posted it years ago.
> dianna
> wheelchair wanna be'ssomething to that sort.
> 
> 
> -Original Message-
> From: Robert Vogel <rhvsh...@me.com>
> To: Larry Willis <lwillis82...@gmail.com>
> Cc: quad-list <quad-list@eskimo.com>
> Sent: Wed, Apr 6, 2016 1:59 pm
> Subject: Re: [QUAD-L] a question
> 
> Hi Larry,
> 
> To answer your question, Yes.  A devotee is a person that gets sexually 
> turned on by people with 
> disabilities, wheelchair users, amputees etc.
> 
> Not sure about devotees interest in para’s vs. quads.
> 
> Bob V
> 
> On Apr 6, 2016, at 8:15 AM, Larry Willis <lwillis82...@gmail.com 
> <mailto:lwillis82...@gmail.com>> wrote:
> 
> Good question, Danny. Quad devotee? We are not talking fetish here, are we?
> 
> Sent from my iPad
> 
> Begin forwarded message:
> 
> Resent-From: quad-list@eskimo.com <mailto:quad-list@eskimo.com>
> From: "Danny Espinoza" <da...@immortaldesigns.co 
> <mailto:da...@immortaldesigns.co>>
> Date: April 6, 2016 at 9:43:35 AM EDT
> To: "'john owens'" <jrowen...@yahoo.com <mailto:jrowen...@yahoo.com>>, 
> "'Quad-list Post'" <quad-list@eskimo.com <mailto:quad-list@eskimo.com>>
> Subject: RE: [QUAD-L] a question
> Reply-To: <da...@immortaldesigns.co <mailto:da...@immortaldesigns.co>>
> 
> Quadriplegic devotee? What’s that?
> -Danny
>  
> From: john owens [mailto:jrowen...@yahoo.com <mailto:jrowen...@yahoo.com>] 
> Sent: Wednesday, April 6, 2016 5:52 AM
> To: Quad-list Post <quad-list@eskimo.com <mailto:quad-list@eskimo.com>>
> Subject: [QUAD-L] a question
>  
>   
> Are there any quadriplegic devotees on here?
> 

Re: [QUAD-L] a question

[Robert Vogel]

Hi Larry,

To answer your question, Yes.  A devotee is a person that gets sexually turned 
on by people with 
disabilities, wheelchair users, amputees etc.

Not sure about devotees interest in para’s vs. quads.

Bob V

> On Apr 6, 2016, at 8:15 AM, Larry Willis  wrote:
> 
> Good question, Danny. Quad devotee? We are not talking fetish here, are we?
> 
> Sent from my iPad
> 
> Begin forwarded message:
> 
>> Resent-From: quad-list@eskimo.com 
>> From: "Danny Espinoza" > >
>> Date: April 6, 2016 at 9:43:35 AM EDT
>> To: "'john owens'" >, 
>> "'Quad-list Post'" >
>> Subject: RE: [QUAD-L] a question
>> Reply-To: >
>> 
>> Quadriplegic devotee? What’s that?
>> -Danny
>>  
>> From: john owens [mailto:jrowen...@yahoo.com ] 
>> Sent: Wednesday, April 6, 2016 5:52 AM
>> To: Quad-list Post >
>> Subject: [QUAD-L] a question
>>  
>>   
>> Are there any quadriplegic devotees on here?

Re: [QUAD-L] Shoulder Replacement Surgery?

[Robert Vogel]

Hi Ron and Carolyn,

Carolyn, I wrote a Para/Medic column (September 2015, New Mobility, see link) 
about shoulder
replacement surgery in people with spinal cord injuries.  Fortunately there are 
new techniques including
reverse shoulder replacement that are providing good results in rebuilding 
shoulders.  It is serious surgery and should only be considered when all other 
options have failed.  That said, surgeons that I spoke with say it gives people 
good results.

The key is finding a surgeon that is well versed in doing shoulder 
replacements—a surgeon that has done hundreds of shoulder replacements.  Also 
it is crucial that you have a good plan for rehab as you
won’t be able to move your arm for about 3-months.

Here is the link to the article:  
http://www.newmobility.com/2015/09/shoulder-replacement-wheelchair-users/ 


I was fortunate to interview some of the top orthopedic surgeons in the field 
for this article.  Again, make sure you have a surgeon that has done at least 
hundreds of shoulders—or more.  Make sure you communicate with the surgeon what 
the outcomes will be, what you need your shoulder for and make sure you have a 
good plan for rehab.

The people with spinal cord injury I interviewed had very good outcomes.

Please feel free to drop me an email if you have questions as I *might* have 
answers from the many 
interviews and/or research papers I looked at for this article.

Sincerely
Bob Vogel
Senior Correspondent, New Mobility magazine
www.newmobility.com 
rhvsh...@mac.com
> On Mar 28, 2016, at 7:29 PM, RONALD L PRACHT  wrote:
> 
> I cant imagine trying to immobilize a shoulder being a quad. I don't have 
> enough people to care for me to get through that, but I guess you do it when 
> you must.
> 
> Ron
> 
> 
> On Monday, March 28, 2016 8:18 PM, "wheelch...@aol.com"  
> wrote:
> 
> 
> Hey, let Carolyn be the 1st and let us all know.  The op, may be the easy 
> part.  Recovery may be different, because the lack of full range mobility.  
> Make sure you have physical therapist that have worked with Quads.
> Just remember, the impossible, takes a little longer.
> Best Wishes
>  
> In a message dated 3/28/2016 8:09:20 P.M. Central Daylight Time, 
> cboy...@swbell.net writes:
> Hi,
> 
> Has anyone on the loop had shoulder replacement surgery? It looks like I'm 
> going to have to have it done later this year.
> 
> Please reply either to the loop or to me privately about your experience.
> 
> Thanks.
> 
> Carolyn
> 
> 

Re: [QUAD-L] foleys

[Robert Vogel]

Hi Diana,

Bob Vogel here—I write and/or wrote columns on health management with SCI for 
New Mobility magazine, the retired
“Bladder Matters” column as well as the current Para/Medic.  To view the many 
Bladder Matters columns go to
www.newmobility.com   and on the right hand side 
of the page in the “search” area type Bladder Matters.

How have you been managing your bladder up to this point?  Has it been a 
regular Foley?  Or  a regular schedule of
intermittent internal catheterization or???

The real key to your question is good communication with your urologist, and 
hopefully you have a urologist that takes the time to listen to you, and 
carefully consider options.

That said, and understand there are no “absolutes”—in general a superpubic 
Foley works better over the long term than a regular indwelling Foley catheter. 
 Among the problems that long term use (many months and/or years) of *regular* 
Foley use 
include irritation and/or eroding the urethra.  Another problem that can occur 
from long-term Foley use is irritation of the bladder
wall caused by the Foley balloon sitting against the Foley wall, this 
irritation can cause autonomic dysreflexia (sudden, life threatening
spike in blood pressure).  Also, years of long term chronic irritation can 
increase the odds of bladder cancer—one of the reasons it is
important for anybody with neurogenic bladder (a bladder that doesn’t receive 
*normal* signals from the brain) should have a yearly urological checkup 
including kidney and bladder ultrasound to check for stones.

The good thing about “trying” a suprapubic Foley is that it is a simple 
procedure for the urologist to do AND if you don’t like it, it is very easy to 
reverse—under a doctors advice and care—simply remove the Foley, and the stoma 
(hole) will heal over in a short period of time.

An important thing to discuss with your urologist is how to keep your bladder 
from shrinking (if it hasn’t already done so).  Long term
use of any Foley, combined with a spastic bladder will result in bladder 
shrinkage.  Urologists report that in some cases the
bladder shrinks so small that it isn’t much bigger than the foley balloon (this 
is over a period of years).  There are ways to
prevent this.  One option is using a catheter valve—something that must be used 
very carefully and again, only with with
approval and instruction from your urologist—link below.

Hope the columns help.

Cheers,
Bob V

Suprapubic Revisited 
http://www.newmobility.com/2010/06/suprapubic-revisited/ 


Para/Medic: BioFlo, a New Option for Indwelling Foley Users
http://www.newmobility.com/2015/03/bioflo-indwelling-catheter/ 



> On Mar 28, 2016, at 10:27 AM, diannal...@aol.com wrote:
> 
> i'm going to a urologist in april to discuss getting a suprapubic foley. I've 
> been a quad for 25 yrs. can I get some feedback on pros and cons before I go?
> dianna

Re: [QUAD-L] New Chair Cost

[Robert Vogel]

Hi Greg,

I am working on an article for New Mobility magazine and specifically working 
on this part of the article—how much does
Medicare pricing reimburse compared to Retail price.  I compared the leading 
Manufacturers—Permobil, Pride (Quantum) 
and for what you are looking for, base, tilt recline, etc. the prices are 
similar.

The one I “created” was based on a person who needed power tilt and power 
recline and power elevating leg rests, also a 
custom back support. 

Keep in mind this was just information for an article, however I did check and 
re-check on this.  Medicare reimbursement for this 
this chair came to $18,141.00.  Your co-pay would be 20% of $18,141.00, so you 
are looking at a co-pay of around
$3,628

Hope this helps.

Bob V

> On Mar 3, 2016, at 7:54 AM, wheelch...@aol.com wrote:
> 
> 19-20 K is an easy guess.Base price for a simple mobility chair is 6-7k   
> Rehab Chairs  10-12K
> But you can call a local DME and ask over the phone.
>  
> Best Wishes
>  
> In a message dated 3/3/2016 9:40:24 A.M. Central Standard Time, 
> g...@eskimo.com writes:
> I know it's a wide rage, but what's a new power chair, tilt, recline, seat 
> raise, foot raise, go for now adays?
>  
> I need a new one soon and have to pay a 20% co-pay.
>  
> Thanks, Greg

Re: [QUAD-L] Temp

[Robert Vogel]

Although 98.6 is *supposed to be average*. Mine—I’m a T10 complete para—is in 
the 96.7-97.7 range.
Unless I’ve been in the sun or exercising, if it reads in the 98.6-99 range I 
feel chills/feverish.

Bob V

> On Feb 16, 2016, at 5:46 PM, Toby Ausbun  wrote:
> 
> Mine 97.7
> 
> 
> Sent from Yahoo Mail for iPad 
> 
> On Tuesday, February 16, 2016, 7:44 PM, john vamp  
> wrote:
> 
> Mine is normally 96.7 or 97.6
> 
> On Tue, Feb 16, 2016 at 11:10 AM, greg > wrote:
> What's your averge body temp?
> Mine ranges between 95.7 and 96.5
> On good days.
> Greg

Re: [QUAD-L] Can i ask everyone how much Baclofen they take daily?

[Robert Vogel]

According to Medscape.com, 80 mg per day is a commonly accepted maximum, 
dosing up to 200 mg per day has been used safely and effectively. 

At one point, working with my physician, I was taking 40mg three times a day 
(120mg total).
My spasms have mellowed over the past 15 years and I’ve slowly reduced the 
dosage to
80mg a day==20mg morning, 20mg early afternoon, 40mg evening.  I am going to 
try reducing
to 20mg at night and hope that keeps spasm’s at bay.

It is extremely important that you don’t abruptly stop taking baclofen!  
Abruptly stopping can cause
withdrawal symptoms including increase in spasticity, fever, altered mental 
status, seizures, and on
and on.  Best to slowly reduce dosage under a doctors guidance.

Bob V

> On Feb 2, 2016, at 2:30 PM, Fragile  wrote:
> 
> I took baclofen several years ago, had to constantly keep increasing
> the dosage. I think I got to about 100 mg per day before I switched to
> another medication.
> 
> On 2/2/16, DAVID LEWIS  wrote:
>> Im a quad, i have more spasms now. I have to up my Baclofen to 65 mg a
>> day.How much u guys take daily.?thanks
> 

Re: [QUAD-L] Could use some help: Debris in the suprapubic catheter tube

[Robert Vogel]

Hi Paul,

Sounds like this change came up fairly quickly and is staying around.  This is 
the kind
of thing I would discuss with my urologist and/or urology nurse practitioner.

From my understanding—from my urology nurse practitioner—a change like this, 
sudden
increase in sediment could be a sign of a bladder stone.  

My two cents.  

Bob V

> On Jan 28, 2016, at 8:09 PM, Paul Jacobson  wrote:
> 
> Hello SCI people,
>  
> I am a healthy 52 yr old using a sp tube for 11 years.  I normally change it
> every 3 weeks but in the last few months I have had a good deal of debris
> in the tube and am forced to change it once per week.
>  
> I have tried to flush using 30 cc of Renacidin solution and distilled water,
> but I get AD from the flushing.  In addition, I get bladder spasms (which I 
> take
> 4 mg of Detrol LA 1x/day and 8 mg of Cardura 1x/day) throughout the day
> which also cause AD.  Trying to get back to normal!
>  
> Any input would be so helpful.
>  
> Best,
> Paul  c5/6
>  

Re: [QUAD-L] Syrinx Cyst?

[Robert Vogel]

Hi Greg,

For what it is worth, I wrote an article about Syrinx’s, and there is another 
excellent article
in New Mobility about an incomplete C5-6 quad that had a syrinx fixed.  Here 
are the links:
Para/Medic: Syrinx and Pain  
http://www.newmobility.com/2011/01/paramedic-syrinx-and-pain/ 


And:  Untethering the Invisible Knot  
http://www.newmobility.com/2009/03/untethering-the-invisible-knot/ 


When I wrote the article back in 2011 the two best (and in my opinion only) 
Doc’s I would go to for
this were/are Dr. Barth Green at the University of Miami School of Medicine and 
Dr. Scott Falci at 
Craig Hospital in Denver.  You can contact Dr. Falci at Craig Hospital at 
303/761-5281  You will speak
with Charlotte his assistant.  She is very knowledgable, and either she, or Dr. 
Falci will follow up with you
via phone within a few business days.  Dr. Falci says that although you can see 
a syrinx on an MRI and 
that is helpful, he treats (does surgery) based on symptoms, meaning worsening 
of pain, worsening of spasticity
and the main reason for doing surgery is additional loss of sensation and/or 
movement.  It is very serious surgery
and Dr. Falci has done well over 1000 surgeries on syrinx’s in people with SCI. 
 He is really amazing at 
being able to listen to your symptoms and tell you exactly what is going on 
with the syrinx including when to
treat and when not to treat.  He is quite conservative—he doesn’t want to do 
surgery unless he has to, meaning
loss of feeling and/or movement or to a lesser degree increase of spasticity 
and/or pain.

I know quite a few people that have been treated by Dr. Falci both for syrinx’s 
as well as with DREZ (stopping bring leg pain by computer assisted targeting of 
burning the nerves that are causing the problem.

Hope this helps.

Cheers,
Bob Vogel

> On Jan 2, 2016, at 5:24 PM, greg  wrote:
> 
> I know Cyrinx Cysts are quite common in quads, I have one that I haven't 
> checked on in years.
> Have you had one drained?
> Could you feel the difference?
> I go to the SCI Rehab doc next week, I'm making a list of things I need to 
> talk about. A lot of my symptoms could be Cyst related. Or just getting old. 
> More pain, spasm, feel weaker, etc.
> Is draining a cyst fairly safe? Out patient or admitted over night?
> 
> Thanks much, Greg
> 

Re: [QUAD-L] Neurontin

[Robert Vogel]

Hi Greg,

I am in my 30th year as a T10 complete para. I get bad neuropathic leg pain, 
like icy hot pain.
It comes and goes, seems to be worse in cold weather, also worse if I am 
getting sick, or getting
a UTI.

I take 200 mg of neurontin-gabapentin three times a day.  My PM (spinal cord 
injury doc) doc 
says I can take at least three times that much, but 200 mg seems to help just a 
bit and I don’t want
to take more because I’ve heard it can cause weakness in limbs.  I’ve also 
read/heard it is VERY difficult
to get off of, as in as difficult as it is to stop taking valium (diazapam) 
because it replaces the same
substance in the brain (gaba) and it takes the brain a long time to start 
making it again.

This makes sense because I also take 10mg of valium at night to stop leg 
spasticity when I’m trying to
sleep.  The neuropathic icy/burning goes away when the valium kicks in—but 
taking more valium would
set off a chain reaction of tolerance so I stay away from taking any additional 
valium and/or gabapentin.

Bob V

> On Jan 2, 2016, at 5:31 PM, greg  wrote:
> 
> I did and Lyrica, didn't help much.
> My only relief is sun or sun lamp. Not the sun box for Seasonal Affective 
> Disorder. It's got to be the heat lamp kind.
> Only relief I get.
> 
> Greg
> 
> 
> 
> What will I be doing?  Continuing my search for relief from my neuropathic
> pain.  In my case, an intense feeling of cold.  Have any of you taken
> neurontin-gabapentin
> 

Re: [QUAD-L] Bowel Problems

[Robert Vogel]

I always thought ghost BM, or ghost poop was the gross mucus that sometimes 
comes out during a transfer
etc.—not good but not really poo either, kind of a drag and a relief at the 
same time.
> On Dec 3, 2015, at 6:20 PM, wheelch...@aol.com wrote:
> 
> Ghost Bowel Movements, are generally unplanned, unwanted bowel movement long 
> after you have completed a personal bowel program.  its probably more common 
> with the Duke's than the others. Shortly after the Duke is introduced to the 
> rectum, it may travel a couple of inches up the bowel.  After resting it 
> begins to dissolve and a small piece travels up the bowel while the larger, 
> un-dissolved portion is flushed out.
>  
> Later on, sometime hours, will pass and you have "that urge" and not a mile 
> to the nearest toilet, your body cuts loose and you have a bowel movement.  I 
> hope that explains, but I'm sure members here have some of the best stories.
>  
> Best Wishes
>  
> In a message dated 12/3/2015 7:53:15 P.M. Central Standard Time, 
> jume9...@comcast.net writes:
> What do you mean dukes traveling up the bowel? Also, what is a ghost BM?
> 
> From: wheelch...@aol.com
> To: zoocr...@windstream.net, sbell...@cox.net, "quad-list" 
> 
> Sent: Wednesday, December 2, 2015 5:24:53 PM
> Subject: Re: [QUAD-L] Bowel Problems
> 
> I use milk, instead of water when making oat meal.  I like the old fashion 
> over the 1 minute (smaller oats).
> The oatmeal tends to absorb.  Do you think you are experiencing ghost BM ?  
> If so, a small piece of the dukes are breaking off and traveling up the 
> bowel, for later reaction.  I hope it works for you and your bowels.
>  
> Best Wishes
>  
> In a message dated 12/2/2015 7:10:23 P.M. Central Standard Time, 
> zoocr...@windstream.net writes:
> I’m sure going to give it a try and I will let you know. I’m to the point of 
> being afraid to eat lunch for fear of accidents during the day.
> 
>  
> Nicki
> 
>  
> From: shirley bell [mailto:sbell...@cox.net] 
> Sent: Wednesday, December 02, 2015 6:35 PM
> To: nichole rohling
> Cc: quad-list@eskimo.com
> Subject: Re: [QUAD-L] Bowel Problems
> 
>  
> Those never worked right for me . I had many accidents. I LOVE the magic 
> bullet, changed my life! go to concepts in confidence web site and get them. 
> The guy who developed the bullet owns it. You can get small sample size to 
> try, I think. Also, when you try it, give it a chance. May take a few tries. 
> Eat a big fruit every day, apple or wedge of melon works for me daily. I love 
> dates and eat 3 or so a day as well. let me know if you try them and how you 
> do.
> 
> Kind regards,
> Shirley Bell
> 
>  
> www.ShirleyBellDesigns.com 
> - Original Message -
> 
> From: nichole rohling 
> To: 'shirley bell'  ; quad-list@eskimo.com 
> 
> Sent: Wednesday, December 02, 2015 6:44 PM
> 
> Subject: RE: [QUAD-L] Bowel Problems
> 
>  
> No Shirley, I’ve used generic Dulcolax suppositories for 17 yrs.   
> 
>  
> Thinking maybe I should try them?
> 
>  
> Nicki
> 
>  
>  
> From: shirley bell [mailto:sbell...@cox.net ] 
> Sent: Wednesday, December 02, 2015 4:34 PM
> To: nichole rohling
> Subject: Re: [QUAD-L] Bowel Problems
> 
>  
> are you using magic bullet?
> 
> Kind regards,
> Shirley Bell
> 
>  
> www.ShirleyBellDesigns.com 
> - Original Message -
> 
> From: nichole rohling 
> To: quad-list@eskimo.com 
> Sent: Wednesday, December 02, 2015 5:01 PM
> 
> Subject: [QUAD-L] Bowel Problems
> 
>  
> Back in August my bowels started deciding they wanted to empty (consistency 
> of cow poop for lack of better term) in the evenings about 2 hrs after going 
> to bed. I get chills, etc and generally caregiver gets here and gets me on 
> the shower chair before it’s too late. This went on about once a week for a 
> month or so. I had been taking Culturelle since last December so I stopped 
> taking it. My body is still doing the same thing – but only about once every 
> 2 weeks if I’m lucky. No particular food triggers it. Went to the dr 
> yesterday, all labs came back fine.
> 
> Of course bowel program is jacked up because there’s nothing there, sometimes 
> it happens on evenings when I do bowel program that morning and sometimes it 
> is on non-bowel program evenings.
> 
> No rhyme or reason for it.
> 
>  
> I’m up for suggestions and anyone else had this happen?
> 
>  
> Nicki
> 
> 

[QUAD-L] Are my posts getting through

[Robert Vogel]

I put a post on Friday.  Still don’t see it yet.  Come to think of it I haven’t 
seen any quad-list
posts for a few days.  Has the site been down?

Bob V

[QUAD-L] Drastic Medicare Cuts for Wheelchair Components Start January: How We Can Reverse This

[Robert Vogel]

Help Protect Our Reimbursement Rights!
Starting January 1,  Medicare makes drastic reimbursement cuts (as high as 30% 
to 40% or more) to complex rehab components on wheelchairs.  This means 
everything from cushions and seat backs to wheelchair controllers on both 
manual and power chairs—put another way, almost everything but the frame of the 
wheelchair will be affected.  This is the date CMS (Centers for Medicare and 
Medicaid Services) Final Rule 1614-F goes into effect.  

I’m in my 30th year as a T10 complete para, and I’ve worked as manufacturer’s 
sales rep and as a sales rep for a local wheelchair dealer and I’ve seen first 
hand that Medicare reimbursement margins are wheelchair already so thin that 
these cuts will make it extremely difficult to get many components and others 
will no longer be offered, company’s can’t make a product at a net loss.  Worse 
yet, private insurance companies generally use Medicare as a guideline for what 
they will pay for, if these cuts are allowed to stand, every wheelchair user 
will be affected.  

WE CAN REVERSE THIS BUT WE MUST ACT IMMEDIATELY.  Every one of us needs to two 
simple things: send an email, and follow up with a phone call to our senators 
and representatives.  In the emails and phone calls to state three simple 
things: First:  Identify yourself “I am, your name, and I am a constituent 
(voter—give your city, state). Next:  State that you are asking the 
Congressman/ Congresswoman to support HR3229 (for House of Representatives 
offices): For Senate offices say you are asking the Senator to support S2196.  
Third: Say why this issue is important.  For example, I explain that I need the 
proper wheelchair cushion to prevent life threatening pressure sores—something 
that would put me in the hospital and cost tax payers upward of $50-thousand to 
$100-thousand dollars or more in hospital bills and could prove fatal.  AND I 
need the proper wheelchair back to prevent scoliosis. 

Representatives count EACH email and EACH phone call in support or opposition 
to an issue.  One more thing, please have friends and family members email and 
call as well.   WE CAN REVERSE THIS! 

Remember, government works for us, but only when we let them know what we want! 
 For me, finding and contacting my representatives seemed intimidating—but I 
found it was easy and when I did it, I became empowered—and have a good 
feeling.  I’m not just yelling at my TV or posting my opinion on social media, 
I have become part of the solution!  Here is a link to an-easy-to-follow guide 
I wrote (about 4 years ago) on how to find and contact your representatives.  
This was written about another funding cut back issue but serves as a great 
blueprint.

https://roho.com/a-step-by-step-guide-to-contacting-us-representatives-and-senators/
 

 Below is a letter to NCART, the National Coalition for Assistive and Rehab 
Technology, that explains what is happening and a call out for help.

 Lets take 20-30 minutes and contact our representatives and fight for the 
equipment we need.

Sincerely,

Bob Vogel

>   
> 
> November 25, 2015
> 
> CRT Stakeholders and Friends,
> 
> Late Monday, CMS published the 2016 Medicare fee schedule. As feared, the new 
> payment rates include major reductions (as high as 30% to 40% or more) to 
> complex rehab wheelchair accessories. 
> 
> These cuts are being implemented by CMS in violation of prior Congressional 
> legislation. They will dramatically reduce or outright eliminate access for 
> people with disabilities who rely on individually configured complex rehab 
> wheelchairs and critical components such as seating equipment, positioning 
> systems, and specialty controls.
> 
> There is one last chance to stop this and protect access. We need to use the 
> next 7 to 10 days to get Congress to add our complex rehab wheelchair 
> accessory legislation, HR-3229/S-2196, to a larger bill and pass it before 
> they adjourn in mid-December.
> 
> We have had discussions with our Congressional champions. The good news is 
> they remain committed to working to getting our bill passed. But they can't 
> do it alone. They have indicated that constituents must generate more support 
> by connecting with their own representatives and telling them this is a 
> priority.
> 
> Now is the time to contact or re-contact your Members via phone. The message 
> is simple: "I need you to attach HR-3229/S-2196 to larger legislation and 
> pass it before you adjourn in December". 
> 
> Please go to www.protectmymobility.org 
> 
>  and use the links to make 

Re: [QUAD-L] Are my posts getting through

[Robert Vogel]

Thanks John,

My posts started going through with this one and on. So all is now good.

Bob V

> On Nov 30, 2015, at 1:25 PM, Robert Vogel <rhvsh...@me.com> wrote:
> 
> I put a post on Friday.  Still don’t see it yet.  Come to think of it I 
> haven’t seen any quad-list
> posts for a few days.  Has the site been down?
> 
> Bob V

[QUAD-L] Bob Vogel: Test-Test

[Robert Vogel]

I did see a response to my test email.  Sending one more to see if it comes up 
on my
email.

Re: [QUAD-L] Ditropan

[Robert Vogel]

Hi Larry and all,

Yes, dry mouth does set up a situation that *can* lead to bad teeth.  Here is 
an article I wrote
on Medication, Dry Mouth, and How to Save Your Teeth for New Mobility:
http://www.newmobility.com/2013/09/sci-medication-dry-mouth-and-tooth-decay/ 


Bob V

> On Nov 5, 2015, at 7:08 AM, Larry Willis  wrote:
> 
> I think the bad teeth are a byproduct of dry mouth.
> 
> Larry Willis
> Retired and proud of it
> 
> 
> Begin forwarded message:
> 
>> From: cviewe...@aol.com 
>> Date: November 5, 2015 at 8:09:25 AM EST
>> To: lwillis82...@gmail.com 
>> Subject: Re: [QUAD-L] Ditropan
>> 
>> I have never heard of ditropan causing bad teeth. My teeth are fine, I went 
>> to the dentist a few weeks ago for a cleaning. It was a good checkup too.  
>> Do you take calcium pills? Maybe that's why my teeth have not been damaged. 
>> Rose
>>  
>> In a message dated 11/4/2015 10:30:21 P.M. Eastern Standard Time, 
>> lwillis82...@gmail.com  writes:
>> I have been on it for almost 20 years. Dry mouth, sore tongue, but the worst 
>> is damage to my teeth! They are broken, yellow, decayed and all that bad 
>> stuff. And I have spent a fortune on them.reminds me of a meth users teeth. 
>> ACT is the only toothpaste I can useand Biotene rinse. I just can't 
>> tolerate constant cold sweats.
>> 
>> Larry Willis
>> Retired and proud of it
>> 
>> 
>> Begin forwarded message:
>> 
>>> From: cviewe...@aol.com 
>>> Date: November 4, 2015 at 8:42:06 PM EST
>>> To: e...@teamjeved.com , lwillis82...@gmail.com 
>>> 
>>> Cc: quad-list@eskimo.com 
>>> Subject: Re: [QUAD-L] Ditroplan
>>> 
>>> I have been on ditropan or the generic for more than 30 years...no 
>>> problems. It still works.I have not had any signs of dementia or other 
>>> problems.  Rose
>>>  
>>> In a message dated 11/4/2015 5:08:13 P.M. Eastern Standard Time, 
>>> e...@teamjeved.com  writes:
>>>  My big worry now about Ditropan is recent research showing it increases 
>>> risk of developing dementia/Alzheimer's/cognitive health problems. I've 
>>> been taking it for a decade. I was also a long-term regular user of 
>>> Benadryl for chronic allergies. Benadryl was identified in that same 
>>> research as another high risk factor.
>>> 
>>> All of this becomes super scary for me, because Alzheimer's runs and 
>>> family. My father is in the late stages of the disease.
>>> 
>>> At 48, I have to be focusing on preventative measures.  with 30 years of 
>>> quadriplegia under my belt I can't assume I'll be dead before I get into my 
>>> 60s and 70s when Alzheimer's risk is increasingly common.
>>> 
>>> I've asked my urologist for alternatives to Ditropan. he says there are 
>>> some but he has to research them – – that was months ago.
>>> 
>>> Have any of you been on a similar drug that was as effective as Ditropan? 
>>> 
>>> Thanks everybody
>>> 
>>> Ed
>>> 
>>> Ed Tessier 
>>> Mobile: (909) 994-5900
>>> 
>>> Jeved Management, Inc. 
>>> 
>>> On Mon, Nov 2, 2015 at 5:06 AM, Larry Willis >> >
>>>  wrote:
>>> It doesn't give me dreams, but the dry mouth is terrible. But it's a trade 
>>> off - dry mouth or cold sweats. The sweats just kill me. Can't win.
>>> 
>>> 
>>> -- Forwarded message --
>>> From: greg >> >
>>> Date: Sunday, November 1, 2015
>>> Subject: [QUAD-L] Ditroplan
>>> To: quad-list@eskimo.com 
>>> 
>>> 
>>> 
>>> I took Ditropan for awhile, but it gave me very weird dreams, almost panic 
>>> dreams. I'd wake up startled out of breath.
>>> I had to stop. Plus a very dry mouth.
>>> Greg
>>> 
>>> 
>>> > I take 20 mg ditropan in the morning, then cath at about 7am and 10
>>> > pm. I try to balance fluid intake with that routine.
>>> 
>>> 
>>> 
>> =

Re: [QUAD-L] colonoscopy

[Robert Vogel]

Hi Shirley,

Yes there is an alternative that is easier.  Here is an article from New 
Mobility about a wheelchair user that did it, it is 
essentially a “high colonic” that is also used for colonoscopy prep.  The key 
is to discuss it with your doctor first.
Here is the link:  http://www.newmobility.com/2010/01/my-beautiful-colon/ 


Bob V

> On Oct 22, 2015, at 10:23 AM, shirley bell  wrote:
> 
> Hi all, I need another colonoscopy done but don't want to do the prep and 
> scope. Is there anyone who did an alternative to this that is easier? thanks, 
> shitrley 

Re: [QUAD-L] Question

[Robert Vogel]

If you have dry mouth syndrome and/or constant dry mouth be sure to mention it 
to your dentist.  I developed dry mouth at night—mouth breathing—
and within 6-months went from 50 years of perfect teeth and dental care to 
requiring 3-root canals +caps.  Very expensive!!!  If I had known I could
have gotten on a prescription fluoride toothpaste and avoided the problem.

Bob V

> On Sep 14, 2015, at 12:26 PM, Larry Willis  wrote:
> 
> Any of you guys heard of burning mouth syndrome? Experienced it?
> 
> Larry Willis
> Retired and proud of it
> 

Re: [QUAD-L] Question

[Robert Vogel]

Here is a link to my article in New Mobility on Dry Mouth, Tooth Decay and ways 
to prevent it:  
http://www.newmobility.com/2013/09/sci-medication-dry-mouth-and-tooth-decay/ 
<http://www.newmobility.com/2013/09/sci-medication-dry-mouth-and-tooth-decay/>

Bob V

> On Sep 14, 2015, at 12:39 PM, Robert Vogel <rhvsh...@me.com> wrote:
> 
> If you have dry mouth syndrome and/or constant dry mouth be sure to mention 
> it to your dentist.  I developed dry mouth at night—mouth breathing—
> and within 6-months went from 50 years of perfect teeth and dental care to 
> requiring 3-root canals +caps.  Very expensive!!!  If I had known I could
> have gotten on a prescription fluoride toothpaste and avoided the problem.
> 
> Bob V
> 
>> On Sep 14, 2015, at 12:26 PM, Larry Willis <lwillis82...@gmail.com> wrote:
>> 
>> Any of you guys heard of burning mouth syndrome? Experienced it?
>> 
>> Larry Willis
>> Retired and proud of it
>> 
> 

Re: [QUAD-L] Old sci

[Robert Vogel]

Hi Bobbie and Larry,

Check out this link to March, 2015 New Mobility—an article and link about Lee 
Goldstein, 82 years old
and 69 years post injury C6/7 para.  Talk about beating the odds!!!  Fantastic 
book!!!

Here is the link:  http://www.newmobility.com/2015/03/so-far-so-good/ 
http://www.newmobility.com/2015/03/so-far-so-good/

Cheers,
Bob Vogel

 On Aug 5, 2015, at 9:13 AM, Gmail bobbiehumphre...@gmail.com wrote:
 
 1973 is when I had my accident. I'll be 60 this November. Bobbie 
 
 Smile Everyday
 
 On Aug 5, 2015, at 6:13 AM, Larry Willis lwillis82...@gmail.com wrote:
 
 Hey peeps, New Mobility magazine has a very good article about aging with 
 SCI. It looks at the Longevity Project, a research project started in 1973 
 to track a group of SCI folks through the years. It also says that in 1973 
 it was not believed possible for a quad to live forty years. Well well.
 
 Larry Willis
 Retired and proud of it
 
 

Re: [QUAD-L] Old sci

[Robert Vogel]

Hi again all,

Oops, 69 years post injury C6/7 quad.  Although he refers to himself as a 
para/quad since he has some
hand movement.

Bob V

 On Aug 5, 2015, at 12:51 PM, Robert Vogel rhvsh...@me.com wrote:
 
 Hi Bobbie and Larry,
 
 Check out this link to March, 2015 New Mobility—an article and link about Lee 
 Goldstein, 82 years old
 and 69 years post injury C6/7 para.  Talk about beating the odds!!!  
 Fantastic book!!!
 
 Here is the link:  http://www.newmobility.com/2015/03/so-far-so-good/ 
 http://www.newmobility.com/2015/03/so-far-so-good/
 
 Cheers,
 Bob Vogel
 
 On Aug 5, 2015, at 9:13 AM, Gmail bobbiehumphre...@gmail.com 
 mailto:bobbiehumphre...@gmail.com wrote:
 
 1973 is when I had my accident. I'll be 60 this November. Bobbie 
 
 Smile Everyday
 
 On Aug 5, 2015, at 6:13 AM, Larry Willis lwillis82...@gmail.com 
 mailto:lwillis82...@gmail.com wrote:
 
 Hey peeps, New Mobility magazine has a very good article about aging with 
 SCI. It looks at the Longevity Project, a research project started in 1973 
 to track a group of SCI folks through the years. It also says that in 1973 
 it was not believed possible for a quad to live forty years. Well well.
 
 Larry Willis
 Retired and proud of it
 
 
 

Re: [QUAD-L] Recovery then loss of function?

[Robert Vogel]

SCI is complex.  I have a friend that was a complete C3, then 4 weeks later he 
got movement in one toe.  8 months later he was able to
walk slowly for short distances with a walker.  Problem is, there is no way to 
know who will get what kind of function.  It is a tough balance
between time, determination and the big kicker $$money.

Here is an article I wrote about a paraplegic that had a complete injury and 
after 6 years of therapy is able to walk on her own. BUT others
may spend six years with the same therapy and get minimal return or nothing.  
The BIG IMPORTANT part of the article is the sidebar at
the end “What happened, What Enabled Harthcocks Recovery. 
http://www.newmobility.com/2014/03/high-costs-walking/

Hope this helps.
Bob V

 On Jun 23, 2015, at 5:20 PM, lwillis...@yahoo.com wrote:
 
 He has got to keep pushing because that small movement is his greatest hope. 
 Most of us would kill for the slightest movement. To hell with the money, 
 keep pushing.
 
 Sent from my iPad
 
 Begin forwarded message:
 
 Resent-From: quad-list@eskimo.com mailto:quad-list@eskimo.com
 From: Gail Overton ga...@pennwell.com mailto:ga...@pennwell.com
 Date: June 23, 2015 at 6:27:51 PM EDT
 To: quad-list quad-list@eskimo.com mailto:quad-list@eskimo.com
 Subject: [QUAD-L] Recovery then loss of function?
 
 Are there any incomplete quads out there that had motor function in their 
 arms or legs that didn’t get stronger with physical therapy? My husband is 
 an incomplete C3 quad that started moving 3 months after injury. 8 months 
 later and all his muscles are firing but still very weak and his legs have 
 actually gotten weaker recently even as his therapy increases to six hours a 
 week. Any related stories to tell? The physical therapists and physiatrists 
 are baffled or they are just not talking (or just don’t know). Why spend all 
 this money exercising if the motor function won’t improve and muscles won’t 
 get stronger.

Re: [QUAD-L] Oops, trying again (new here)

[Robert Vogel]

Hi Erin,

Ryon is describing the exact pain I had, lower right abdomen.  I am a T10 
complete paraplegic, 
30 years post injury. The pain came on suddenly about 6 years ago.  I had all 
the tests Ryon did 
over a period of a couple of years and the doc’s were baffled.  Then my primary 
care doc ordered a 
blood panel and it showed I was anemic.  I had an endoscopy—tiny camera fed 
down the throat into the
stomach and small intestine and it showed I have celiac disease—an auto immune
disease where your body attacks the small intestine if it detects gluten—a 
protein found in wheat,
barley, and rye.  A blood test confirms this.

Although it is unlikely that this is what is going on with Ryon—celiac disease 
has nothing to do with spinal cord
injury and only 1 out of ever 133 people have it—but I just thought I’d throw 
my experience out there.
It is easy to test for—a blood test—and rule out.  Just a thought.

Bob V

 On Jun 2, 2015, at 3:19 PM, Erin Shackelford erin...@me.com wrote:
 
 Thank you so much everyone. 
 
 Ryon is pretty sure that it is not neurological pain... But I'm not convinced 
 it isn't. He always shows the doctors where the pain is and how it feels. I 
 try my best to allow him to speak for himself at the doctor, but I always 
 clarify to the doctor that we don't know for sure if he is really feeling the 
 pain where he thinks he is, because his injury level is c4. 
 
 He has been being treated for neurological pain for over a year now. First 
 gabapentin, then slowly increased the dose, then lyrica and then that dosage 
 maxed out as well. We stayed on the lyrica for over a year, but I finally 
 asked the doctor to take him off of it, because I was paying $75/month for 
 it. 
 
 The spasticity does increase when the pain increases. The pain never worsens 
 or betters when eating or drinking more or less. The types of food he eats 
 doesn't have any effect. 
 
 We are from a small town in the northeast corner of Kansas, called Elwood. We 
 are about 40 minutes north of Kansas City. We are right on the Missouri River 
 and receive all of our medical care in St. Joseph, MO. This has just recently 
 caused us problems. When Kansas Medicaid changed a couple years ago... All of 
 the specialist we previously saw in St. Joseph are no longer covered by our 
 new insurance. Medicaid is Ryons secondary, blue cross blue shield primary, 
 but it's easier for the doctors to accept both insurances. 
 
 We are currently trying to form a new team of doctors at KU med, but the 
 problem with that is that it is an hour south of us and we don't have the 
 most reliable van to get there. But we will make do. 
 
 We go back to Craig July 10th. Hopefully we can get some help this year. They 
 weren't helpful last year, they acted like it wasn't a big deal, but now it's 
 been 2 years of pain and I have got to get something figured out for him. 
 
 Whoever asked about my parents being alive... They both are still. I think my 
 dad is anyway, I haven't seen her for 4 years or so. Remember... I moved out 
 when I was 16 and never looked back. 
 
 On Jun 2, 2015, at 12:28 AM, Erin Shackelford erin...@me.com wrote:
 
 I'm not sure if this posted the other day. I didn't know there were rules. 
 My first message had images... Oops!
 
 Hello all. I subscribed to this list a while back and very much enjoy 
 getting the emails and reading the responses. I figured I better introduce 
 myself instead of lurking in the darkness. 
 
 First off my name is Erin Shackelford,  I'm 29 years old, married to my 
 wonderful husband Bret, we have an 18 month old daughter named Bria. I 
 myself am not a quadriplegic, but I take care of my little brother who is a 
 c4-c7, incomplete quad. 
 
 Our journey: We had a pretty rough life growing up. I moved out on my own 
 when I was 16, was homeless at times, slept in my car at times, have been 
 working my ass off since I was 16 and dropped out of college after my 
 freshman year to work even more so that I could get my own place and take 
 care of my brother, who was 16 at the time. Ok, so I get him through high 
 school, into college, and after two years, he decided college wasn't for 
 him. He signed up for the Air Force in 2011, at the age of 21 and was 
 waiting for his call, to go to boot camp. He went to a party on June 14th, 
 2011 and dove into a shallow swimming pool, almost drowned and was taken by 
 ambulance to a hospital and treated for intoxication and fluid in his lungs. 
 He was sedated and intubated. After 12 hours, they removed the tubes and 
 asked him if he wanted a drink. The nurse became frustrated when he wouldn't 
 grab a cup from her. He informed her that he couldn't move his hands and 
 couldn't feel his legs. He was rushed off for an MRI... He fractured c4  c7 
 and crushed c5  c6. His spinal cord was only bruised. After being in the 
 hospital for 2 weeks, he was transferred by an air ambulance to Craig 
 Specialty Hospital in Denver, Colorado. 
 
 While at 

Re: [QUAD-L] Bowel rouitine question,

[Robert Vogel]

Hi Quadius,

Unfortunately Peristeen does not clear enough for a colonoscopy.  However here 
is a column I wrote
about options to prepare for a colonoscopy.  

http://www.newmobility.com/2012/10/preparing-for-a-colonoscopy-after-paralysis/ 
http://www.newmobility.com/2012/10/preparing-for-a-colonoscopy-after-paralysis/

Bob V

 On May 21, 2015, at 8:08 PM, Quadius quad...@gmail.com wrote:
 
 I wonder if this thing would work to clear the bowels for a colonoscopy?
 
 On Friday, May 1, 2015, Robert Vogel rhvsh...@me.com 
 mailto:rhvsh...@me.com wrote:
 Hi Johnny,
 
 I’m not sure what you are referring to.  However, I have been using a system 
 called Peristeen made by
 Coloplast that empties me out in 30 minutes and has eliminated accidents.
 
 I am a T10 complete para, 55 years old, 30 years post injury.  I exercise, 
 drink plenty of water
 and get plenty of fiber, however my system has slowed down quite a bit over 
 the past 5 or more years—probably
 closer to 10, and I had a problem with chronic constipation.  I started using 
 it a little over 2 years ago and
 it started working the first time I used it. 
 Here are a couple of links to articles I wrote about it in New Mobility:
 http://www.newmobility.com/2014/04/peristeen-for-bowel-management/ 
 http://www.newmobility.com/2014/04/peristeen-for-bowel-management/
 
 Also, in my ‘survey of one’ since using it my hemorrhoids have dramatically 
 shrunk and are no longer a problem:
 http://www.newmobility.com/2015/01/dealing-with-hemorrhoids/ 
 http://www.newmobility.com/2015/01/dealing-with-hemorrhoids/
 
 Hope the information helps.
 
 Sincerely
 Bob Vogel
 
 On Apr 30, 2015, at 5:32 PM, DAVID LEWIS curlyle...@verizon.net 
 javascript:_e(%7B%7D,'cvml','curlyle...@verizon.net'); wrote:
 
 i saw that they have a bowel stimulater on the net. 
 its only 9 inches. is there any attachment for that.
 i thought i saw some unique ones before./
 
 please show me any links.
 thank you.
 
 johnny
 

Re: [QUAD-L] Sore on rear end.

[Robert Vogel]

Hi David,

Larry Willis’s advice is right on the money—every point should be followed.

1. Ditch the egg-crate for a high profile Roho. Make sure it's high profile.
2. Stay off your butt as much as you can.
3. Consume as much protein as you can. Very important. Consider supplements.
4. See a nutritionist, have analysis done to see if you are short on any 
nutrient.
5. Keep seeing wound care folks so they can monitor.

Adding my two cents: When I was first injured, back in 85’, I asked for a ROHO, 
instead I was sent home
on a memory foam cushion.  Despite constant weight shifts, within 6 months I 
got a small pressure sore
(size of a pencil eraser) on my right ischium.  I spent three months staying 
off of
it and trying to heal it on my own-- with no improvement.  Then I got my doc to 
write a prescription for
a high profile ROHO, and referral to a wound care clinic.  The combination of 
the cushion and wound care
specialist got the sore to  heal within 1-month.

Now, 30 years post injury, my butt is skin and bones, plus I have a pelvic 
obliquity (my right ischium sits 1 1/2” higher
than my left)-- so bad that the left ischium gets red after sitting up in bed 
for a couple minutes.  I protect my skin by
using a ROHO Quadtro Select high profile cushion. Nightly mirror skin checks 
every show that the ROHO  protects
my skin, with no red areas.

Bob V



 On May 18, 2015, at 5:28 AM, wheelch...@aol.com wrote:
 
 Age, diet, smoker? and skin texture.  I hope your RN is certified in wound 
 care.
 I hope you continue to do well.
 Best Wishes
  
 In a message dated 5/17/2015 4:09:43 P.M. Central Daylight Time, 
 curlyle...@verizon.net writes:
 I got a sore close to my tailbone.
 My nurse says cover it with gauze and put silverdine on it everyday. Which i 
 have.
 
 What do you guys do when you get them?.
 I use like an egg crate foam on my chair and can lift myself at times up on 
 my elbows.
 Dont know why i got a breakdown.
 Give me some info please.
 

Re: [QUAD-L] Bowel rouitine question,

[Robert Vogel]

Hi Johnny,

I’m not sure what you are referring to.  However, I have been using a system 
called Peristeen made by
Coloplast that empties me out in 30 minutes and has eliminated accidents.

I am a T10 complete para, 55 years old, 30 years post injury.  I exercise, 
drink plenty of water
and get plenty of fiber, however my system has slowed down quite a bit over the 
past 5 or more years—probably
closer to 10, and I had a problem with chronic constipation.  I started using 
it a little over 2 years ago and
it started working the first time I used it. 
Here are a couple of links to articles I wrote about it in New Mobility:
http://www.newmobility.com/2014/04/peristeen-for-bowel-management/ 
http://www.newmobility.com/2014/04/peristeen-for-bowel-management/

Also, in my ‘survey of one’ since using it my hemorrhoids have dramatically 
shrunk and are no longer a problem:
http://www.newmobility.com/2015/01/dealing-with-hemorrhoids/ 
http://www.newmobility.com/2015/01/dealing-with-hemorrhoids/

Hope the information helps.

Sincerely
Bob Vogel

 On Apr 30, 2015, at 5:32 PM, DAVID LEWIS curlyle...@verizon.net wrote:
 
 i saw that they have a bowel stimulater on the net. 
 its only 9 inches. is there any attachment for that.
 i thought i saw some unique ones before./
 
 please show me any links.
 thank you.
 
 johnny

[QUAD-L] Arm Ergometers

[Robert Vogel]

Does anybody use an arm ergometer?  I am doing an article on exercise for New 
Mobility and am looking
to do a brief interview with somebody that uses an arm ergometer.  If you do 
please contact me at the list
or at: rhvsh...@mac.com mailto:rhvsh...@mac.com

Bob V

Re: [QUAD-L] Arm Ergometers

[Robert Vogel]

Hi Larry,

Thanks for the good question.  Here is an answer longer than you probably 
want—the first paragraph
provides the cliff’s notes. An arm ergometer (probably a better name out there) 
is a hand peddle
exercise device.  They come in table mounted versions as well as stand alone 
versions that you can wheel
right up to.  There are also a wide variety of quad grips available.

The reason I ask, is the article I’m writing is about exercise as a natural 
mood elevator.  I’ve had battles with
depression for many years and I find—working with my physician—that if I can 
get at least 1/2 hour of cardio
at least 4-5 times a week it is as effective as the antidepressant I was 
taking, hence I was able to  I stop taking
it under supervision of my physician.

I’m a T10 para and I’m able to transfer into my hand cycle that is mounted on a 
stationary trainer.  In an article 
I wrote in 2013 I had a great quote from a woman who wasn’t able to transfer to 
a hand cycle so she used a
table mounted arm ergometer to get her cardio.

Bob V

 On Apr 26, 2015, at 10:58 AM, Larry Willis lwillis82...@gmail.com wrote:
 
 Well, Bob, what the heck is an arm ergo Meter? Have arm, therefore measure.?
 
 Larry Willis
 Retired and proud of it
 
 
 Begin forwarded message:
 
 Resent-From: quad-list@eskimo.com mailto:quad-list@eskimo.com
 From: Robert Vogel rhvsh...@me.com mailto:rhvsh...@me.com
 Date: April 26, 2015 at 1:11:45 PM EDT
 To: quad-list@eskimo.com mailto:quad-list@eskimo.com
 Subject: [QUAD-L] Arm Ergometers
 
 Does anybody use an arm ergometer?  I am doing an article on exercise for 
 New Mobility and am looking
 to do a brief interview with somebody that uses an arm ergometer.  If you do 
 please contact me at the list
 or at: rhvsh...@mac.com mailto:rhvsh...@mac.com
 
 Bob V
 

Re: [QUAD-L] Arm Ergometers

[Robert Vogel]

Hi,

Thanks for the best wishes.  I totally agree with you in other forms of 
distractions, painting, gardening,
etc.  The exercise info I found is interesting and cool stuff.

Bob V

 On Apr 26, 2015, at 6:55 PM, wheelch...@aol.com wrote:
 
 Bob, I don't know if exercise is a cure as much as it is a distraction in 
 one's daily life style. Other forms of  distractions, painting, raised 
 gardening, cards, scrabble... are all tangible distractions  Time to break 
 traditional daily routines, like shopping or just going out in the cold and 
 get chilly. Distractions are not a promoted cure, but they are much better 
 than doing nothing.   I'm looking forward to your article.
 On a side note, did you hear that Permobil recently purchased ROHO?
  
 Best Wishes
  
 In a message dated 4/26/2015 12:12:24 P.M. Central Daylight Time, 
 rhvsh...@me.com writes:
 Does anybody use an arm ergometer?  I am doing an article on exercise for New 
 Mobility and am looking
 to do a brief interview with somebody that uses an arm ergometer.  If you do 
 please contact me at the list
 or at: rhvsh...@mac.com mailto:rhvsh...@mac.com
 
 Bob V