Re: [QUAD-L] Colostomy Sweating

[RONALD L PRACHT]

 
Since I have been a quad 21 years ago I mildly sweat(dysreflexia) whenever I an 
having a bowell movement, fart or anything much going on there. Not the same 
thing as you exactly but I would be concerned if something changes from the 
norm you experience. Only you know what you feel on a daily basis with the bag. 
The problem is convincing a doctor that you know what your talking about. Every 
time I go into the hospital the staff has to look up autonomic dysreflexia, 
scary thing.
Ron On Saturday, March 30, 2019, 4:36:19 PM CDT, Eric Olson 
 wrote:  
 
 I think a GI doctor would be best 

On Sat, Mar 30, 2019 at 3:11 PM Greg  wrote:

  I got to go see  a doc this week, I'm sweating extremely bad when going. I've 
not seen a doc about my colostomy since I got it. Do I see a: Internal Medicine 
Doc. Wound Doc. Gastroenterologist. 
 
 Thanks, Greg
  
  

Re: [QUAD-L] Sores

[RONALD L PRACHT]

 I used a full electric blanket yrs ago after my injury. One night I rolled on 
my side and the blanket got wedged between my knees. When I woke up I had two 
burns with blisters on the insides of my legs. Thats the danger, if the blanket 
gets on the skin  ith weight and you dont move.
Ron 
On Thursday, January 31, 2019, 9:21:31 AM CST, Greg  
wrote:  
 
  I never thought an electric blanket would get that hot.
 I have burned my self so many ways. The worst was dropping a cup of coffee. I 
had an insulated cup that got so hot it burned my hand and leg. I rest my cup 
on a pillow on my lap often leaning it on my stomach. I'v burned my stomach 
many times.
 Greg
 
 
 
 On 1/31/2019 1:03 AM, Dana Wray wrote:
  
 
     I am so sorry. We need to really check our roho’s  every day but we don’t. 
I have heard of many people getting burned On heating pads  and electric 
blankets, since I first joined the Quad-list.    I recently was burned when my 
hot coffee glass’s straw broke . It was a Drink Aide straw attached to 
insulated mug that I got at CVS. We   Were duct  taping it together. A 
caregiver was not carefully watching and it  siphoned .I am now I am using a 
Fleximug by Fleming. You can order different lengths of straws. We don’t know 
we are getting burned because we can’t feel.  I have had long straw siphon 
quite a number of times causing burns, but I didn’t need surgery. They did need 
debriefing and  wound care appointments for several weeks . 
  It is terribly unfortunate that the Roho  Corporation cannot make a device to 
check the quantro cushion  for the proper air distribution . Why sell a product 
that can cause wounds on Spinal cord injuries. It has happened to me several 
times .   Dana C 4-5 44 yrs post   
  On Fri, Jan 25, 2019 at 7:08 PM Greg  wrote:
  
  I wanted to dress up a bit for a photo, jeans instead of sweats. Only 1 day 
and I got a sore on my butt. It was not bad, but kept  getting worse. Found out 
I was bottoming out my Roho. The cover I used was a bit too big. So the Roho 
was spreading out too much.
 
 Now last night my shoulder really hurt so I used a heating pad. Like a mini 
electric blanket 2x2 feet. It left a big burn blister about 2 inches. 
 
 Greg
   

   

[QUAD-L] Wanchiks writer?

[RONALD L PRACHT]

Does anybody know where I can buy a Wanchiks writer for a right handed quad?I 
know sammons preston is not out there anymore. For people that dont know what 
it is..its a device that goes onto your hand that allows a pen to be 
inserted and you write. Also I cant find the old phone holders that you can 
attach to anything and gives you something to grab onto.
Ron

Re: [QUAD-L] What would you say & do?

[RONALD L PRACHT]

 It depends on the situation. If she was new or been with a person for awhile. 
I think back to b4 I was a quad and how I felt then and what I possibly would 
have said. In the end, shes not your friend.just a person to get you 
through the day. Letting it go is probally the right answer although I know 
hurtful words can haunt you. Concentrate on Pete and your health. Over the 
years I have but told it all from, "Jesus will heal you" to" I would have just 
pulled the plug".  
Ron PrachtOn Saturday, January 5, 2019, 7:26:37 PM CST, Greg 
 wrote:  
 
  I would probably let it go.
 Unless she was overtly rude and treated you bad, like you were less of a 
person.
 A lot of people say things not thinking first.
 If I was injured but got my movement back, I'd thank God every day I was not 
me now.
 Same basic idea
 
 Greg
 
 
 
 
   
 She asked me 
 "How long have you been a quad"?
 I told her  46 years and she said as she looked to the ceiling  ... very 
loudly 
 "I thank God everyday that I'm not you"!
 
 What would have said and done?
 Bobbie 
   
 
 
   

Re: [QUAD-L] Strange Question

[RONALD L PRACHT]

 
I was injured in 98. I had a burst appendix for 5 days and almost died. I 
grabbed onto the back of a car and flipped my chair. I flipped my chair 
backwards and hit head on couch. Ive been hit by a car. Almost drowned. been at 
the point of heat exhaustion with no water or a/c several times. Had ad from a 
full bladder and couldnt insert tube. my van engine died going down a hill and 
i had no brakes. On and on.
RonOn Thursday, December 20, 2018, 7:47:09 PM CST, Lori Michaelson 
 wrote:  
 
 Unfortunately, too many times to even list them all.
On Thu, Dec 20, 2018 at 6:13 PM Greg  wrote:

  Since your injury, how many times, because of your injury, have you come 
close to passing?
 
 Me, 3 Times...
 
 OD, medication interaction.
 
 Almost fell in Pool when no one was around, seatbelt on. (I no longer use a 
seatbelt, only chest strap if I go out by myself. Actually a few close calls.
 
 Choking, eating bread, it got stuck very bad. Could not breath. Semi heimlich 
got it out.
 
 Greg
  


-- 
"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
  

[QUAD-L] Was Wondering where Dianna went

[RONALD L PRACHT]

I haven"t seen Dianna Lawson post on here in a long time guys. does anyone know 
if shes ok?

Ron

[QUAD-L] Whats the best bowell routine laxatives

[RONALD L PRACHT]

Hey guys,
Im a c7 quad coming up on 21 years post. Ive done the every other day bowell 
routine on a bowell chair. I use majic bullets with bisacodyl and miralax the 
night b4. im on a bunch of pain meds and its slowing my system to a crawl. 
Whats the best laxatives to take to combat this?How much miralax should I take 
and when?
Wheelchair has blocked me on the list and gotten others to do so as well. I 
never knew what I had said in the past was offensive to him. I think its wrong 
to hide behind a name and do things to people without letting them know you are 
offended. Anything I said was in good humor. Thats the problem with our country 
today. Ive been on this list many years and have lots of knowledge to share, 
its a shame wheelchair feels he is god of the quadlist.
Ron

[QUAD-L] Movie question

[RONALD L PRACHT]

Has anybody been to see the Freddie Mercury movie, Bohemian Rhapsody??

[QUAD-L] Hand controls for a Ford Fullsize Van or other

[RONALD L PRACHT]

Hey I have a perfect set of Monarch 1-A hand controls that were on my 84 Ford 
Van for 2 yrs until the engine blew. The state bought them for me and paid like 
1500.00 with all the options back in the early 2000s. They are push for brake, 
pull down for gas. Im a c7 and they worked well for me. I have all the linkages 
to connect to the gas and brake. They could be used for other vehicles with 
different mounting kits. i can get numbers, pics or whatever if someone on here 
is interested. I will make you a better deal than you could ever get depending 
on shipping cost. im in St. louis. They were stored indoors so great condition.
Ron 

[QUAD-L] Further details on my infection saga

[RONALD L PRACHT]

 I had an issue going on a month ago where the cathe tube wouldn't go in at 
all. Instead on scoping my penis and figuring out what was blocking it they put 
a bard foley bag on for a month. Well two Fridays ago a mild fever started 99.6 
and the urologist is only there on thursdays. His office wouldn't give me an 
antibiotic or let me come in. Finally after calls back they let my mom drop a 
urine sample two Fridays ago. The urologist never called nor did the office and 
my fever stayed under 100. Finally last Wednesday my mom called the urologist 
and they refused to do anything because they were waiting on the lab results. 
My mom physically went up there and they said the lab had lost the urine sample 
but found it. After a lot of begging they gave me cipro for 7 days without a 
result from the lab.  My fever went down to normal after I  started taking the 
cipro but yesterday my fever came back and was 100.6. I believe that all the 
waiting has allowed the infection to start in the kidneys at this point. Ive 
only got 6 cipros left and all the offices are closed until Tuesday. the 
emergency room calls this urologist so not much point to go there. Im not sure 
how dangerous this situation is at 100.6 with being on cipro. I can get the 
fever down with ibupophen, naproxen and the works. Im drinking glass after 
glass on tea to try to help. I don't know if I should let this go until tues, 
call the urologist through the exchange or go to a walk in urgent care center. 
the urne has no blood, looks decent overall just a little brownish. crziest 
deal Ive been in for awhile. the urologist allowed this infection to get out of 
control pretty much, they wouldn't budge on the lab results that never 
came...to this moment the lab never called me.
Ron Pracht

[QUAD-L] When should a quad worrywith a foley

[RONALD L PRACHT]

 Ive had a foley catheter for approx.2.5 weeks. I started taking Flomax and it 
changed the color, then it started smelling( the urine) I felt kinda weak today 
and checked my temp and Im at 99.7. With a foley when should you get an 
antibiotic? is it normal to run with light fevers with a foley? this is new to 
me. Ive catherized or 20 years and rarely got an infection.
Ron Pracht

Re: [QUAD-L] Need help with options to help catheter go in

[RONALD L PRACHT]

I appreciate you boys giving me input. I will repay the favor. When one of you 
gets a free moment could you give me a basic rundown of the upkeep of a 
superpubic? Basic things and probs Im going to run into. When you hook up a bag 
to your bladder and it doesn't expand anymore...is that an issue? 
The truth is a superpubic may actually improve my life. ive never been able to 
go to any weddings or family events straight cathing because I couldn't wear a 
suit cause I had to wear slip on pants to access myself to cathe . Family 
events were always a no because I couldn't get in the bathroom . With a 
superpubic I may be able to attend my first event without planning like its a 
vacation. Ive wanted to go to a racetrack event but friends wont go with me due 
to the straight cathing situation. with a bag I could go most of the day and 
drain it in the grass, lol.
Ron 

On Tuesday, May 1, 2018 1:33 PM, Greg <g...@eskimo.com> wrote:
 

  Ask your doc, but I think if  you dont like the Suprapubic, you can just take 
it out.
 Greg
 
 
 On 5/1/2018 11:02 AM, RONALD L PRACHT wrote:
  
 
 I cant understand how this can change in the matter of a few days but it did. 
Im home alone most days and have little help. ive got to keep the foley in a 
month, then the deciding starts. Im sure when they pull the foley that the 
catherization tube will slip in at first. Will it stay that 
way.probally not. Im on Flomax now and oxybutin, im hoping that 
helps.not sure if it will. I don't fully understand why the 
spincter is spasming or staying closed. I guess I will try anything to get it 
working, but at some point Im going to have to look into a superpubic. I cant 
see  how a condom cathe could work very well long term, and wont work at all 
without removing the spincter. I just don't want to make the wrong decision. 
Ive already screwed up on my syrinx and letting the docs put a patch in my 
stomach after my appendix burst in 2011. I just want to know when the  smoke 
clears if the superpubic sucks that I did all I could to keep what little life 
I have rolling. I have very little support guys. Thanks for the help.  
  Ron 
 
  On Tuesday, May 1, 2018 12:13 PM, Quad Dude <thequadd...@gmail.com> wrote:
  
 
 Hi Ron, 
  The only 2 alternative solutions I can think of will likely be unappealing to 
you. 
  Since it appears your bladder sphincter is clamping down too hard, you could 
get a sphincterotomy which debilitates the bladder  sphincter and allows for 
the free flow of urine, however, you would need to wear an external (condom) 
catheter from that point forward. 
  Another possibly more appealing solution could be to get a suprapubic 
catheter placement. This is done through a simple surgical procedure which 
creates a pathway from your abdomen directly to your bladder and your bladder 
would empty through this pathway via a Foley catheter. The side benefit of this 
method of bladder management is it "frees Willie" and can make day  to day 
management a bit easier. The procedure is also reversible as the passageway 
from the abdomen to your bladder will close on its own over a relatively short 
period of time (multiple hours or days) if you remove the Foley catheter. 
  These may have already been discussed with your urologist. I definitely 
encourage getting 2nd opinions before opting for any surgical procedures, 
urology or otherwise. 
  I hope you find an acceptable solution that works for you. 
  Steve - C4, 30 years, auto accident   
 On Tue, May 1, 2018 at 4:37 AM, RONALD L PRACHT <r.pra...@sbcglobal.net> wrote:
 
Im a c7 quad, 20 years post that has been straight cathing for 20 years 
with little issue. Three years ago I started leaking a bit but just dealt with 
it until the tubes wouldn't go  in( pass sphincter) without an hour of pushing 
and sometimes 5 tries. 3 months ago things got so bad that my bladder was full 
and I couldn't insert the tube at all and my body went into  severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube  was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or  decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give  me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well  which never has 
happened. Finally the doc came in and tried to get a foley in and finally did 
after awhile. The blood wasn't coming from the bladder, it must have knicked a 
wall. My last  urologist visit they ran a camera in and it looked great no 
false pas

Re: [QUAD-L] Need help with options to help catheter go in

[RONALD L PRACHT]

I cant understand how this can change in the matter of a few days but it did. 
Im home alone most days and have little help. ive got to keep the foley in a 
month, then the deciding starts. Im sure when they pull the foley that the 
catherization tube will slip in at first. Will it stay that 
way.probally not. Im on Flomax now and oxybutin, im hoping that 
helps.not sure if it will. I don't fully understand why the 
spincter is spasming or staying closed. I guess I will try anything to get it 
working, but at some point Im going to have to look into a superpubic. I cant 
see how a condom cathe could work very well long term, and wont work at all 
without removing the spincter. I just don't want to make the wrong decision. 
Ive already screwed up on my syrinx and letting the docs put a patch in my 
stomach after my appendix burst in 2011. I just want to know when the smoke 
clears if the superpubic sucks that I did all I could to keep what little life 
I have rolling. I have very little support guys. Thanks for the help. 
Ron 

On Tuesday, May 1, 2018 12:13 PM, Quad Dude <thequadd...@gmail.com> wrote:
 

 Hi Ron,
The only 2 alternative solutions I can think of will likely be unappealing to 
you.
Since it appears your bladder sphincter is clamping down too hard, you could 
get a sphincterotomy which debilitates the bladder sphincter and allows for the 
free flow of urine, however, you would need to wear an external (condom) 
catheter from that point forward.
Another possibly more appealing solution could be to get a suprapubic catheter 
placement. This is done through a simple surgical procedure which creates a 
pathway from your abdomen directly to your bladder and your bladder would empty 
through this pathway via a Foley catheter. The side benefit of this method of 
bladder management is it "frees Willie" and can make day to day management a 
bit easier. The procedure is also reversible as the passageway from the abdomen 
to your bladder will close on its own over a relatively short period of time 
(multiple hours or days) if you remove the Foley catheter.
These may have already been discussed with your urologist. I definitely 
encourage getting 2nd opinions before opting for any surgical procedures, 
urology or otherwise.
I hope you find an acceptable solution that works for you.
Steve - C4, 30 years, auto accident
On Tue, May 1, 2018 at 4:37 AM, RONALD L PRACHT <r.pra...@sbcglobal.net> wrote:

 Im a c7 quad, 20 years post that has been straight cathing for 20 years with 
little issue. Three years ago I started leaking a bit but just dealt with it 
until the tubes wouldn't go in( pass sphincter) without an hour of pushing and 
sometimes 5 tries. 3 months ago things got so bad that my bladder was full and 
I couldn't insert the tube at all and my body went into severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well which never has happened. 
Finally the doc came in and tried to get a foley in and finally did after 
awhile. The blood wasn't coming from the bladder, it must have knicked a wall. 
My last urologist visit they ran a camera in and it looked great no false 
passage or issues. The question is why is the tube not getting past the 
internal spincter? I suggested trying Flomax and im already on oxybutynin. if 
there is no blockage or false passage then the spincter has to be in spasm or 
not opening right? What else should I do? I have this foley now for a month 
that I didn't want but I got anyway. I guess if I take the Flomax and 
oxybutynin and after the four weeks remove the foley and im sure the tube will 
go in but within a week it might start giving me trouble again. I don't really 
understand how the spincter could give me this much trouble and if it is what 
else I can do. I fear that im going to get a permanent bag soon because they 
are tired of me. maybe they can rescope me to be sure next time as 
wellim at a loss.

Ron



   

[QUAD-L] Need help with options to help catheter go in

[RONALD L PRACHT]

 Im a c7 quad, 20 years post that has been straight cathing for 20 years with 
little issue. Three years ago I started leaking a bit but just dealt with it 
until the tubes wouldn't go in( pass sphincter) without an hour of pushing and 
sometimes 5 tries. 3 months ago things got so bad that my bladder was full and 
I couldn't insert the tube at all and my body went into severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well which never has happened. 
Finally the doc came in and tried to get a foley in and finally did after 
awhile. The blood wasn't coming from the bladder, it must have knicked a wall. 
My last urologist visit they ran a camera in and it looked great no false 
passage or issues. The question is why is the tube not getting past the 
internal spincter? I suggested trying Flomax and im already on oxybutynin. if 
there is no blockage or false passage then the spincter has to be in spasm or 
not opening right? What else should I do? I have this foley now for a month 
that I didn't want but I got anyway. I guess if I take the Flomax and 
oxybutynin and after the four weeks remove the foley and im sure the tube will 
go in but within a week it might start giving me trouble again. I don't really 
understand how the spincter could give me this much trouble and if it is what 
else I can do. I fear that im going to get a permanent bag soon because they 
are tired of me. maybe they can rescope me to be sure next time as 
wellim at a loss.

Ron

Re: [QUAD-L] Ask For Help

[RONALD L PRACHT]

Things such as a legbag or an adjustment I wouldn't ask for a stranger to do 
unless I was in dire straits and its a matter of living or dieing. I was in my 
manual chair once trying to get home from the mall on a hot day. I started 
passing out a guy pulled over in a truck and I said man, Im in trouble. He 
picked me up and put me in his truck and took me home. People will help if they 
see you struggling.
Ron 

On Wednesday, April 26, 2017 10:47 AM, greg  wrote:
 

 Hey guys, How do you feel about asking 
strangers for help? And how far would you go… I use to HATE asking strangers 
for help. Now I do all the time. Usually just simple things like: Asking if 
they can hand me something, or pick up something I dropped, etc. Yesterday I 
was at the store and they were giving out samples of shrimp. They asked if I 
wanted one. It looked so good, I had to try it. So I asked if hey could scoop 
it in my mouth for me. I did that once before with  stuffed mushroom.  Have 
you, or would you ask a stranger to empty your legbag? If not, what if you were 
so full, you are going through AD? Adjust you in your chair? Greg

   

Re: [QUAD-L] Sex

[RONALD L PRACHT]

If you have an adjustable bed I can tell you about a neat trick to please your 
female partner she will love. Raise the end of the bed all the way up, have her 
lay back on the end. Drive your chair forward into the end of the end of the 
bed between her legs and go for it. Three orgasms will do it if you are good.
Ron  

On Friday, April 21, 2017 9:32 PM, Johnny C...  wrote:
 

  Do any of you use 
vibrators to stimulate yourselves and if so do you know any good ones..or in 
that department ..?? something i can use as a quad?


   

Re: [QUAD-L] 44th Anniversary

[RONALD L PRACHT]

Your a tough woman bobbie. You could write several books on your adventures and 
life experiences. I have always enjoyed your posts on the list. I don't care 
for holidays much since quadom, but we do what we can. Keep on rolling for your 
50th. Be sure to give Pete a big hug for him being a part of your big story. 
Ron 

On Saturday, April 15, 2017 8:39 PM, Bobbie Humphreys 
 wrote:
 

 April 17th will be 44 years since I flew over the handle bars of a 250 
Kawalski motorcycle  

I just now tried to call 3 friends, just to talk, but no one answered. 

So I decide to contact my peps.

I'm feeling blue this year for some reason, most likely because I've been stuck 
in bed with a minor wound.
I'll be getting up Easter Day at least. Pete's brother, Jim, is coming over ... 
we're the same age and always have a blast.

Have a great day everyone!
Bobbie 

"Be the change you want to see in the world". Gandhi

   

[QUAD-L] Things got interesting today

[RONALD L PRACHT]

 I was almost in trouble today people. I got ready to attach my handcycle and 
headed out as normal. Made it just over a mile and dysreflexia started in with 
a combination of the sun and my blood pressure started creeping up like a 
monster. For some reason since I take pain pills a small amount of urine 300cc 
turns my body  dysreflexic and needs to catherize immediately. I turned around 
and started home but as soon as I peddled up the hill my vision was going a 
bit. Luckily I finally made it to my moms garage and took the handcycle off and 
tried to catherize in a urine bottle right then and there. As soon as the urine 
started coming out it got better, then I splashed some water all over my head. 
It reminded me of that story of the quad in the power chair that went to the 
park on a 95 plus day and got stuck I the sand. The guy was found dead face 
down in the sand a few hours later. What makes these challenges as a quad even 
tougher is people...even family don't get it at all. They think you are 
making it up for fun or something. Its starting to suck with standard 
catherizations, especially getting out of bed every few hours during the night 
to cath. I wish I had a nurse in the family or something so I could attach a 
bag during the night at least but I guess Im not tough enough and need to stop 
whining.
Ron

Re: Fwd: [QUAD-L] Getting Old

[RONALD L PRACHT]

Pain is something personal. No one knows how bad another persons pain is unless 
they have dealt with pain themselves and even still we all handle it different. 
The true judge of pain is..can you sleep, do tasks without 
stopping..basically real life changing pain stops normal daily living. 
Every day at least a handful of times under my breath Im praying "god help me 
deal with this", when it get really bad its "god take me out of here". I never 
cried at all the first half of my injury, but there are times now that when Im 
alone I break down for a couple minutes. That's real pain, when it stops you 
like a brick. To do my handcycle now it takes multiple pain pills and I pay for 
it for days. I could talk to a person 5 minutes and know if they have life 
altering pain by these questions. Doctors use the same technique.
Ron  

On Thursday, April 6, 2017 9:05 AM, Jeffrey Gaede  wrote:
 

 I feel like I've been pretty blessed when I hear what you guys have been 
through; what you are currently going through.  I used to wonder a lot about 
phantom pain.  I didn't know if I was actually feeling what you're feeling and 
I have learned long ago to somehow just ignore what was taking place or that 
maybe I'm just not feeling what you are feeling.  I am 38 years post injury and 
I can stop at any moment in the day and think about what I'm feeling throughout 
the paralyzed portion of my body.  I can feel, at this moment, an intense 
tingling in my left calf, it feels like bumblebees living throughout my left 
leg, I've got this weird numb kind of hurt in my right leg, my gut and/or 
abdomen is just uncomfortable, both my feet and toes feel weird at the moment, 
with a somewhat intense tingling feeling.  I could go on and on but I have no 
idea if I learned long ago to just ignore this for the most part and deal with 
life or if you guys are feeling something completely different.  I've started 
having this "restless legs" situation just over the past couple months.  I 
think it's actually been going on longer but it's gotten to the point where it 
causes dysreflexia, so that's not good.  But I've been having one of my 
attendants exercise them some before she leaves and it helps.  It didn't help 
much last night but it's been helping.  I've got the same itchy scalp problem.  
In fact I've even got a couple small scabs on the back of my head where I 
rubbed it raw at times.  I really try to resist but obviously I haven't tried 
hard enough.  I don't know, Dudes.  Obviously, getting older affects everyone, 
paralyzed or not.  And I agree that those first number of years were much 
easier in some ways and yet I went through a whole lot of learning the hard way 
about some things that I know to avoid now.  No one said it was going to be 
easy, but you would think being paralyzed was enough and from there you could 
at least not be in pain, deal with sores, just be relaxed instead of stressed 
and not knowing which way to turn with what's going on with your body.  Nope.  
Just doesn't work that way.  For those of us who choose to live after becoming 
paralyzed, it's a hard road.  But we must be getting something out of it to put 
up with all this crap!  Jeff

  From: Bryce Willis 
 To: "quad-list@eskimo.com"  
 Sent: Thursday, April 6, 2017 6:42 AM
 Subject: Fwd: [QUAD-L] Getting Old
  
Yep,I can identify with you guys. I have that same knife in my shoulder. My 
legs are so stiff and spastic I feel like I am planted in concrete. My stomach 
hurts like the devil every time I eat. And finally, burning mouth syndrome 
makes simple eating an ordeal. Oh, let's not forget the pressure sores on my 
hip and butt. I am just tired and wore out. L.Willis, age65, 46 years post.

Sent from my iPad
Begin forwarded message:


Resent-From: 
From: greg 
Date: April 5, 2017 at 11:50:58 PM EDT
To: 
Subject: [QUAD-L] Getting Old




Yeah, I'm going on 35 years as a quad. The last 10 have gotten worse with pain, 
tightness, etc. And sometimes it's the stupid little things that make life 
harder. My head itching for one. I just got a pet glove brush, I'm cutting it 
out and Velcro on my headrest. Can't get the top of my head which is the worst, 
but the sides itch too. My “Phantom” pains on my butt are driving me nutz. My 
shoulder is my #1 pain now. After every test possible, still can't find the 
knife I know is stuck in there somewhere. I think I have a Gremlin playing 
games with a knife. He comes and goes, leaving no evidence. Xray, MRI, 
CAT-Scan, Nerve Test, Gallstones, Thyroid. Some days I just hold my arm and 
rock. Other days you can poke and prod and its perfect. Moving to AZ and 
“Bagging” my bowel routine are the 2 best things I ever did to help issues. 
Greg ---Yep, Greg all this weird stuff is part of a quads life I thinkI'm 
going on twenty years as a quad, the 1st 10 years 

Re: [QUAD-L] Check out this article

[RONALD L PRACHT]

Never say never about a nursing home. All is takes is your family to die off. 
Money cant save you in most cases. The key is enjoy today.
Ron 

On Wednesday, March 22, 2017 4:41 PM, Jeffrey Gaede  
wrote:
 

 I didn't need to read this to know I'll never be going into a nursing home…

  From: Lori Michaelson 
 To: da...@immortaldesigns.co; quad-list  
 Sent: Wednesday, March 22, 2017 2:28 PM
 Subject: Re: [QUAD-L] Check out this article
  
​Nursing homes are another death sentence for high level quads.  They have no 
idea what our care requires​ let alone wound care, power chair care, lift care, 
& with ONE aide assigned to 25-27 patients & only 10 minutes of care to each. 
Worldwide.
On Wed, Mar 22, 2017 at 2:37 PM, Danny Espinoza  
wrote:

There was just a paralyzed person that was in the news for dying in prison 
https://www.youtube.com/watch? v=LAKUMYuLz-g=share Our prison system in 
a lot of cases is a death sentence for us no matter how bad the crime and there 
are many cases like this. The cost is another concern he should be forced to 
wear a monitor/be on house arrest for the remaining time+probation IMHO but 
that’s just my 2 cents right or wrong.
-Danny From: Lori Michaelson [mailto:lorilivin...@gmail.com ] 
Sent: Tuesday, March 21, 2017 9:12 PM
To: greg ; quad-list 
Subject: Re: [QUAD-L] Check out this article I also factor in that the liberal 
media loves to word things that can make part of any story untrue and, with 
this article, something just doesn't jive.  On Tue, Mar 21, 2017 at 7:45 PM, 
greg  wrote:
I understad both sides, but they should keep him locked up.Not a good guy. He 
might not rape again, but can still do harm.Otherwise it gives us quads no 
reason to not go do crime. I could tape a gun to my hand. Might not be able to 
pull the trigger, but they wont know that.Lets start a Quad-Squaud Gang. Bank 
Robers on wheels. Greg> http://www.dailymail.co.uk/ news/article-2234046/Court- 
orders-> release-repulsive- quadriplegic-rapist-prison- costs-care-him.html


 -- "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] Check out this article

[RONALD L PRACHT]

You drive don't you? You could still be a threat and so could the rapist in the 
article. It wouldnt be fair to the possible new victims. He wont live much 
longer in jail anyway.  

On Tuesday, March 21, 2017 9:45 PM, greg  wrote:
 

 #yiv6030785435 #yiv6030785435 --body{font-size:14pt;}#yiv6030785435 
LI{display:list-item;margin:0.00in;}#yiv6030785435 
p{display:block;margin:0.00in;}#yiv6030785435 body{}#yiv6030785435 I understad 
both sides, but they should keep him locked up.Not a good guy. He might not 
rape again, but can still do harm.Otherwise it gives us quads no reason to not 
go do crime. I could tape a gun to my hand. Might not be able to pull the 
trigger, but they wont know that.Lets start a Quad-Squaud Gang. Bank Robers on 
wheels. Greg

> http://www.dailymail.co.uk/news/article-2234046/Court-orders-> 
> release-repulsive-quadriplegic-rapist-prison-costs-care-him.html

   

Re: [QUAD-L] Hoyer lift not working

[RONALD L PRACHT]

I picked a used hoyer lift up off craigslist for 125.00. They sell cylinder 
rebuild kits on ebay for the Invacare model. It depends on if you can be 
without it a few days and can get someone to take the cylinder off and take it 
apart.
Ron 

On Thursday, March 16, 2017 11:45 AM, Derrick  
wrote:
 

 I had a simple "o" ring break in pump.
it caused the cylinder to leak air/oil and it would not hold compression 
& pump up.
i would have a mechanic take pump apart. there uis not a lot of parts in it.
Derrick in PA but feels like north pole


On 3/15/2017 9:21 PM, Bobbie Humphreys wrote:
> I got into bed, then tried to pump the lift back up, but it would not move.
> Could it be the hydrolocks?
> Help, Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
>



   

[QUAD-L] Looking for a free place to watch You b4 Me quad movie

[RONALD L PRACHT]

 Can anybody hook me up with a link to watch the new flick You b4 Me?
Ron

[QUAD-L] Great Quad movie "Waterdance"

[RONALD L PRACHT]

 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
  
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1992 The Waterdance
 The Waterdance 1992 Movie  |   |

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[QUAD-L] great quad movie "waterdance"

[RONALD L PRACHT]

  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. Just type in waterdance in the youtube search. 
Tried to send the link but it wont let me.
Ron

Re: [QUAD-L] Power wheelchair getting stuck on oriental rug.

[RONALD L PRACHT]

One possible answer would be buy some duralock plastic Velcro and stick the 
edges down. Im sure this wont be popular with the housekeeper. Or like you say 
find some plastic edging to lay on the start of the rug, might still need the 
plastic Velcro though called duralock.
ron 

On Thursday, March 9, 2017 6:22 PM, Dave Krehbiel 
 wrote:
 

 We have 
hardwood floors, and in one room we have an oriental rug. At first I was able 
to drive my chair into the room without any problems. But lately, my wheelchair 
seems to be grabbing the Oriental rug, and the rug and up wrapped around my 
drive wheels.  Maybe it is because the rug is getting older. Maybe it is 
because I'm driving a different wheelchair. But I'm wondering, has anyone else 
had this problem? I'm considering buying one of those clear plastic mats people 
buy to put under their desks in office spaces, and to use that as a sort of a 
pathway for bridge onto the rug.  Does anyone have any experience or 
suggestions or ideas?  Thanks so much, and take care,  Dave Krehbiel 


|  |   This email has been checked for viruses by Avast antivirus software. 
www.avast.com   |




   

[QUAD-L] New nike self-lacing shoe

[RONALD L PRACHT]

 I was looking around and saw a quad on youtube wearing the new self lacing 
tennis style shoe. You put it on and press a button and the laces tighten on 
their own. They are made by nike and list for 720.00..lol. Maybe someday 
they with go for a couple hundred and I will buy a pair.
Ron

[QUAD-L] my shower chair search is over

[RONALD L PRACHT]

 I have used a guardian self propel shower chair for 15 years. A cushion was 
made for it 10 years ago, but it finally cracked and is held together with duck 
tape but still limping along. After about 2 years of searching, talking and 
compiling information I was looking for a used Raz mobile shower chair. I have 
heard these are one of the best chairs you can get these days, but the price 
with options can be as much as 2 grand. Last night I was looking on e-bay and 
found a barely used raz shower chair, stainless steel, 24 inch wheels on back, 
5 inch on front, 18wx19deep, removable flip up legrests, nice high backrest 
with adjustability. Even has heavy duty brakes similar to a normal quickie 
chair. The price was 400, but I was able to negotiate to 350.00 plus 65.00 
shipping= 415 total. Im hope it all works out but its worth the risk for such a 
cool chair. I find so many deals on medical stuff on ebay and most of the time 
it pans out. Last year I bought my rio firefly power handcycle and that was a 
great bargain. 
ron 

Re: [QUAD-L] Raining

[RONALD L PRACHT]

Come on down to Missouri(Misery)where a quad has to hibernate between 
Nov-April. Every year I think Im going to be tough, but cant fight below 30 in 
my old quad years.
Ron 

On Sunday, February 19, 2017 5:19 PM, greg  wrote:
 

 I hate these rainy days. 
I get so sore.
Its hard to believe 60 and sunny feels so much bete than 72 and rainy. I'd 
rather 60 and sunny than 80 and clowdy.I drink hot stuff all day, then feel 
blah from dinking too much sweet stuff. Hot Coco, Coffees, Cider.
rain rain go away...Greg

   

Re: Fwd: [QUAD-L] Cipro Warning

[RONALD L PRACHT]

If that's the case then they need to offer an alternative b4 a person is peeing 
razorblades and bleeding . Ive never been told I had an option. 

On Friday, February 10, 2017 9:24 PM, greg  wrote:
 

 #yiv5660032499 #yiv5660032499 --body{font-size:14pt;}#yiv5660032499 
LI{display:list-item;margin:0.00in;}#yiv5660032499 
p{display:block;margin:0.00in;}#yiv5660032499 body{}#yiv5660032499 The problem 
with Cipro and Levaquin are not a super bug, but blowing up your heart. 
etc.Reading the numbers is scary. Joints, muscles, etc.Sounds like you can use 
it fine many times, then bam it happens.Greg

> I take cipro 1-2 times a year as a defense to a uti that presents> as at 
> least some blood in the urine. Once every few years the first> round of cipro 
> isn't enough and it gets stepped up to something> stronger. These doctors 
> have been giving people antibiotics every> time they have a discomfort, even 
> if its viral which anyone with> any sense knows a virus has to run its 
> course. The worry is a super> bug will come from to many antibiotics on the 
> average whiner. I> personally don't believe anyone is going to have a problem 
> taking> antibiotics in moderation. Sometimes doctors wont give them even> 
> when it makes sense to. In those cases just go to the ER or the> walk in 
> places if its during the week. In my opinion a quad that > cant weigh a 
> doctors advise probally wont live long.>>> Ron>>> On Friday, February 10, 
> 2017 4:47 PM, greg  wrote:>>> Me too, I took it anyway.> I'm 
> alergic to Macrobid, so not many option that work for me. Greg Well 
> that's wonderful. Cipro and levaquin have always been my go->> to drugs. 
> Larry WillisRetired and proud of it>> Begin forwarded message:>>> 
> Resent-From: quad-list@eskimo.com>>> From: greg  February 9, 2017 at 10:58:35 PM EST>>> To:  [QUAD-L] Cipro Warning> Just got a UTI. I always used Cipro, but they 
> have a new danger>>> warning. So importent, its called a "Black Box" 
> waning>> FDA Says Risks May Outweigh Benefits for Antibiotics 
> Levaquin,>> Cipro Posted May 16th, 2016    by Michelle Llamas & filed under>> 
> FDA News & Recalls.  >> Did you experience aortic complications after 
> taking>> fluoroquinolones? On May 12, 2016, the U.S. Food and Drug 
> Administration announced>> it is requiring a stronger black box warning for 
> common, popular>> antibiotics called fluoroquinolones that include Levaquin>> 
> (levofloxacin), Cipro (ciprofloxacin) and Avelox (moxifloxacin) —>> 
> medications taken by more than 26 million Americans each year. "The U.S. 
> Food and Drug Administration is advising that the>> serious side effects 
> associated with fluoroquinolone>> antibacterial drugs generally outweigh the 
> benefits for patients>> with sinusitis, bronchitis, and uncomplicated urinary 
> tract>> infections who have other treatment options," the FDA said in a>> 
> Drug Safety Communication. "For patients with these conditions,>> 
> fluoroquinolones should be reserved for those who do not have>> alternative 
> treatment options." The agency's action comes after its FDA Advisory 
> Committee>> meeting in November 2015. This is not the first warning for 
> these>> drugs released by the FDA. It previously added boxed warnings in>> 
> 2008 for tendon rupture and tendinitis and again in 2013 for>> permanent 
> nerve damage called peripheral neuropathy. The new boxed warning advises 
> patients and doctors that these>> antibiotics may cause potentially permanent 
> damage to muscles,>> tendons, joints, nerves and the central nervous system. 
> In>> patients with minor infections such as sinusitis and bronchitis,>> the 
> risk outweighs the benefits, the FDA panel found. In these>> cases, other 
> treatments are often available and the agency>> strongly discourages doctors 
> from prescribing them.

   

Re: Fwd: [QUAD-L] Cipro Warning

[RONALD L PRACHT]

I take cipro 1-2 times a year as a defense to a uti that presents as at least 
some blood in the urine. Once every few years the first round of cipro isn't 
enough and it gets stepped up to something stronger. These doctors have been 
giving people antibiotics every time they have a discomfort, even if its viral 
which anyone with any sense knows a virus has to run its course. The worry is a 
super bug will come from to many antibiotics on the average whiner. I 
personally don't believe anyone is going to have a problem taking antibiotics 
in moderation. Sometimes doctors wont give them even when it makes sense to. In 
those cases just go to the ER or the walk in places if its during the week. In 
my opinion a quad that cant weigh a doctors advise probally wont live long.
Ron 

On Friday, February 10, 2017 4:47 PM, greg  wrote:
 

 #yiv4794151013 #yiv4794151013 --body{font-size:14pt;}#yiv4794151013 
LI{display:list-item;margin:0.00in;}#yiv4794151013 
p{display:block;margin:0.00in;}#yiv4794151013 body{}#yiv4794151013 Me too, I 
took it anyway.I'm alergic to Macrobid, so not many option that work for me.Greg

> Well that's wonderful. Cipro and levaquin have always been my go-to> drugs.>> 
> Larry WillisRetired and proud of it>>> Begin forwarded message: 
> Resent-From: quad-list@eskimo.com>> From: greg >> Date: 
> February 9, 2017 at 10:58:35 PM EST>> To: >> Subject: 
> [QUAD-L] Cipro Warning>> Just got a UTI. I always used Cipro, but they 
> have a new danger>> warning. So importent, its called a "Black Box" 
> waning>>> FDA Says Risks May Outweigh Benefits for Antibiotics 
> Levaquin,> Cipro Posted May 16th, 2016    by Michelle Llamas & filed under 
> FDA> News & Recalls.  > Did you experience aortic complications after taking> 
> fluoroquinolones?>> On May 12, 2016, the U.S. Food and Drug Administration 
> announced it> is requiring a stronger black box warning for common, popular> 
> antibiotics called fluoroquinolones that include Levaquin> (levofloxacin), 
> Cipro (ciprofloxacin) and Avelox (moxifloxacin) —> medications taken by more 
> than 26 million Americans each year.>> "The U.S. Food and Drug Administration 
> is advising that the serious> side effects associated with fluoroquinolone 
> antibacterial drugs> generally outweigh the benefits for patients with 
> sinusitis,> bronchitis, and uncomplicated urinary tract infections who have> 
> other treatment options," the FDA said in a Drug Safety> Communication. "For 
> patients with these conditions,> fluoroquinolones should be reserved for 
> those who do not have> alternative treatment options.">> The agency's action 
> comes after its FDA Advisory Committee meeting> in November 2015. This is not 
> the first warning for these drugs> released by the FDA. It previously added 
> boxed warnings in 2008 for> tendon rupture and tendinitis and again in 2013 
> for permanent nerve> damage called peripheral neuropathy.>> The new boxed 
> warning advises patients and doctors that these> antibiotics may cause 
> potentially permanent damage to muscles,> tendons, joints, nerves and the 
> central nervous system. In patients> with minor infections such as sinusitis 
> and bronchitis, the risk> outweighs the benefits, the FDA panel found. In 
> these cases, other> treatments are often available and the agency strongly 
> discourages> doctors from prescribing them.

   

Re: [QUAD-L] Rehab/housework

[RONALD L PRACHT]

I love hearing your story Lori. What happened to your father? What did you do 
after your mother died for care?How did you get involved with school in those 
dark ages for disabled?
Ron 

On Saturday, January 28, 2017 9:35 PM, Lori Michaelson 
 wrote:
 

 Same as Larry. None because I was flat on my back for the longest time with a 
tracheotomy and a halo. I first could only get up any manual chair (this was 
1980) and did not get my first (Everest & Jennings) wheelchair until much 
later. 
My mother was dying of cancer so she sent both of my sisters up to where I was 
at at rehab at Sunnyview Hospital in upper New York State to learn my care 
before I went home.
I don't know if they sent me home early because of my mother deteriorating 
rapidly or because it was time for me to do so. 
I came home in November of 1980. Before going to rehab I was first in ICU for 
around 3 months or a little longer near by my home and then after needing my 
neck fused (and still having a tracheotomy) I was moved to another nearby 
hospital that had a very small rehab unit for me to receive range of motion, 
etc. but all of this time I was flat on my back. I was also there at the 
hospital a total of 3 or 4 months before I went to rehab.
I was injured at age 15 and did not come home until I was 16 1/2. A total of 13 
months. I then lost my mother only 6 months to pancreatic cancer that she 
fought for a long long time. It took her a long time to get diagnosed as well. 
I remember her getting sick before my accident but she just thought it was the 
flu or a bug or something because she had periods of nausea (unexplained) and 
probably some other things but being only 14 and wrapped up in my own teenage 
life I wasn't paying too much attention. Then my accident happened and it still 
took her a long time to get diagnosed after I was an inpatient and diagnosed as 
a quadriplegic. 
I lost my father when I was only 13 so that was a terrible terrible terrible 
terrible terrible 3 years. 1978, 1979 and 1981.
While I was in rehab my mother had an addition built onto my one sister's home 
and purchased a brand-new full-size Dodge van for my transportation.
On Sat, Jan 28, 2017 at 4:00 PM, Larry Willis  wrote:

None. I couldn't even feed myself.

Larry WillisRetired and proud of it

Begin forwarded message:


Resent-From: quad-list@eskimo.com
From: Bobbie Humphreys 
Date: January 28, 2017 at 5:09:05 PM EST
To: quad-list@eskimo.com
Subject: [QUAD-L] Rehab/housework



When you al were in rehab, how much training did you get for doing housework, 
like cooking  laundry, vacuuming, making a bed or grocery shopping ?
I had many classes, in OT, on how to do all of the above when I was at Kessler 
Insitute.
Bobbie 

"Be the change you want to see in the world". Gandhi





-- 
"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] Why keep pushing on

[RONALD L PRACHT]

What it comes down to is there is no option other than suicide to get out of 
it. What has helped me is the realization that life is short for everybody and 
in 50 years nobody will know the difference who was a quad or not. Life is a 
gift, even as a quad and each of us have to find our own reasons. I dont know 
if you have heard the song by garth brooks called the dance, but it talks about 
lifes pain and gifts. In order to get out of the pain you would of had to miss 
the dance. Think about all the special things you have done in your life. We 
have to struggle harder to find purpose each day that the average person thats 
for sure. I think a quad knows and appreciates the little things life gives us 
more. Listen to the song and maybe that can help. 

On Friday, January 27, 2017 11:57 AM, Paul Jacobson  
wrote:
 

 love From: Jeffrey Gaede Sent: Thursday, January 26, 2017 6:34 PMTo: Quad-list 
Post Subject: [QUAD-L] Why keep pushing on Why do people keep pushing on? I 
mean it's bad enough to be substantially disabled, but it doesn't stop there. 
People, in general, don't want to be around you. It's difficult to go places 
and do things; average things that most people do all the time. And you know 
from experience that illnesses and such can pop up at any moment, much more 
easily than the average person. You try like hell to avoid being dependent on 
the government but it's nearly impossible, even if you work full-time. That 
means you constantly have someone with which to answer. Someone with their own 
rules, who can't begin to understand you and what you go through on a daily 
basis. I could see where if you were recently disabled then maybe you haven't 
been through enough to realize what life is going to throw your way, but what 
about those of us that have been around a while? What keeps you pushing on… Jeff

From: greg 
To: quad-list@eskimo.com 
Sent: Thursday, January 26, 2017 6:30 PM
Subject: [QUAD-L] Bd
 I hate going to bed. I 
freeze the first half hour no matter how warm I get my room.Shake like I'm 
convulsing.I'd stay in my chair 24/7 if I could.Plus I just hate not being able 
to move around.Greg



   

Re: [QUAD-L] Bd

[RONALD L PRACHT]

I use a triple thick carhartt hoody, beanie hat, covers over head, stand up 
heater on. I wish I would of went with a heated bed but got a tempurpedic 
instead. I tried the heated blanket approach years ago but got burned. The 
worst part is every 4 hours or less I have to get up and straight cathe. Im on 
my own at night  and it harder than it was. Winter is a battle for a quad that 
only a quad could understand.
Ron   

On Thursday, January 26, 2017 9:16 PM, Lissette Whitehead 
 wrote:
 

 #yiv5877282904 #yiv5877282904 -- P 
{margin-top:0;margin-bottom:0;}#yiv5877282904 I don't like the cold weather at 
all, makes my body ache, the parts I can feel anyway. I keep my heater on a lot 
which helps. Also sleeping with a beanie and using a down alternative comforter 
keeps me warm at night. I know that feeling though, sometimes I try to stretch 
a bit to trigger spasms so the blood circulates a bit.

Lissette Whitehead
416 W. San Ysidro Blvd.San Ysidro, CA 92173www.lwgripgloves.com
       

From: Danny Hearn 
Sent: Thursday, January 26, 2017 6:51 PM
To: greg; quad-list@eskimo.com
Subject: Re: [QUAD-L] Bd Happens to me a lot also Greg...Especially in the 
winter months, I get worn out in my chair but when I 1st go to bed and I get 
like that I feel the same, I heat a bed buddy neck warmer and at times my wife 
can turn me and it gets better, but it is a miserable feeling. Dan H**

On Thursday, January 26, 2017 8:31 PM, greg  wrote:


I hate going to bed. I freeze the first half hour no matter how warm I get my 
room.Shake like I'm convulsing.I'd stay in my chair 24/7 if I could.Plus I just 
hate not being able to move around.Greg



   

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

[RONALD L PRACHT]

I was scheduled to go to craig and get surgery. They had looked at my mri, gave 
me a surgery date and all. Then they called and said they couldn't take my 
united healthcare insurance. I was devastated, it made my so upset. 
Ron 

On Tuesday, January 24, 2017 2:59 PM, Lori Michaelson 
 wrote:
 

 I meant to say at the end of my recent post that 'Again, posttraumatic 
syringomyelia or aggravated syrinx makes quadriplegia a walk in the park.'
On Tue, Jan 24, 2017 at 12:47 PM, Lori Michaelson  
wrote:

That is exactly how I found out that I had a syrinx (posttraumatic 
syringomyelia) - I had never heard about it before 1994 and after 4 1/2 years 
of weird symptoms (nothing with my back - pain or anything) and then after my 
pupil dilated... I said to myself "That's it... something is WRONG." So I got 
right on the phone with Craig hospital in 1994 and a neurosurgeon called me 
back with my inquiry telling me to have an MRI done because it sounded like I 
had Syringomyelia."
All I knew was that I had never heard of it before and therefore I was scared 
to death. I didn't have the resources back then to travel all the way to Denver 
from the Northeast so I had the MRI done by my physiatrist (who confirmed the 
neurosurgeon's guess at Craig Hospital at what I had). Therefore I got 3 
different opinions in 3 entirely different areas in New York state and chose 
one.
In one way it it doesn't seem nearly 23 years ago with my diagnosis but I did 
not get operated on until 1995. That took care of my original symptoms but 
then, 2 years later, pain started slowly sliding in from my lower neck all the 
way down my spine and around my right shoulder blade (where my syringo pleural 
shunt is). My follow-up MRIs showed for several years that the shunt was still 
draining despite the pain has getting worse.
I had one primary care physician make a pretty good educated guess as to why 
the pain slowly began spreading and that was because he said that the shunt was 
probably woven through quite a bit of nerve and muscle which makes sense. My 
pain under my right shoulder blade and the entire area covers ALOT of muscle 
and nerve. The guests at the muscle is right because if I overuse my right 
arm... my pain gets much worse. In fact, I used to use my fist or the eraser 
end of a pencil to type for many years and avoided going to use voice 
recognition software but after I did... I never went back. I began to use 
Dragon around 2003.
Now the pain is tolerable as long as I don't get moved wrong or as long as a 
caregiver does not accidentally press into that area. For some reason, it just 
hurts for days or weeks or longer when a caregiver accidentally moves me wrong 
or presses into that area too hard. 
My worst experience was in the middle of December 2016 (last month) when I was 
getting moved up in bed and felt my pain area being pressed into quiet hard 
even though I was not doing anything different and it has not only triggered 
pain but spasms.
Again, posttraumatic syringomyelia or an aggravated syrinx makes syringomyelia 
a walk in the park.


On Mon, Jan 23, 2017 at 10:50 PM, Robert Vogel  wrote:

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 peoplein 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/201 
1/01/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 

Re: Fwd: Re: [QUAD-L] Back, pain, back!!!

[RONALD L PRACHT]

Everyone that has a spinal injury has a cyst of some sort at the injury site. 
When that cyst fills with fluid and causes symptoms is when its called post 
traumatic syringomeyelia. Some individuals with syrinxes go their whole injury 
without any sort of medical intervention. An mri will reveal the extent of 
growth of a syrinx and of its existence. The only time surgery is a must is 
when noticeable function is lost, most of the time when this happens the syrinx 
is extending upwards. Pain is common and usually gets worse as time goes by. 
Some paras get relief from draining the syrinx with a needle and sometimes a 
shunt is put in. This is frowned upon by nueros when advising quad patients w/ 
syrinxes because if you lose any function from messing with it from surgery you 
will lose arm function. If you are in a position where surgery is a must 
contact scott falci and charlotte starnes in Englewood colorodo hospital for 
advice and have them take a look at your mri free of charge. Don't do anything 
quick until you understand what you are dealing with.
Ron 

On Friday, January 20, 2017 11:25 AM, Danny Hearn  
wrote:
 

 Larry, it is determined by an MRI...but these days they don't even want to 
operate unless a person is losing movement...the operation to try to help is 
very expensive and dangerous and don't always even help and in some cases can 
make a person worse. The doctors in St. Louis, Mo. told me they won't dare 
touch mine. Dan H** 

On Friday, January 20, 2017 11:08 AM, lwillis82153  
wrote:
 

 How does one know if he has a syrinx?


Sent via my Samsung Galaxy, an AT 4G LTE smartphone
 Original message From: greg  Date: 1/19/17 
4:42 PM (GMT-06:00) To: quad-list  Cc: 
quad-list@eskimo.com Subject: Re: [QUAD-L] Back, pain, back!!! 
I keep a small pillow on my lap at all times. I use it for many things.I put my 
phone or tablet on it when using them. I put a lot of things I eat on it. Like 
I just had a slice of pizza. I set it on a paper towel and set it on the 
pillow. I can then just lift the pillow up to eat it. When I try to hold the 
pizza, I drop it too often.
Greg > I, also, stack towels in front of me to lay my arm to relieve neck> pain 
pain from my syrinx.> Bobbie>> "You must fail in order to succeed">>> On Jan 
18, 2017, at 11:00 PM, Larry Willis>>  wrote: Ok 
guys, things are getting serious. My neck and right shoulder>> hurt so bad I 
want to cry. It seems to start in the back of my>> neck and radiate into my 
right shoulder joint. The only thing>> that helps is to stack some thick towels 
in front of me and lay>> my arm on top of them. Does anyone have a better 
solution? I've>> tried salves and lotions, Percocet and ibuprofen. Nothing.>> 
Btw,one year ago this week, my wife MELISSA, had her harrowing>> experience 
with a pacemaker. Prayers for her and a few miracles>> for all of us! Night 
peeps. Larry Willis>> Retired and proud of it

   

   

Re: [QUAD-L] New Chair

[RONALD L PRACHT]

Ive gotten two manual chairs since 1998. My first one was an action mvp and the 
second and current chair is a quickie 2 which I have held together from ebay 
parts from (2001-2017). I have replaced everything on the chair at least once 
except the red frame, which is wobbly because its a folder. Ive had 10 sets on 
rear tires, 4 sets of casters, 2 jay backs, 3 jay 2 cushions, 8 sets of scissor 
brakes, 6 sets of sideguards 7 seatbelts, 4 seat platforms, I found every part 
either at sportaid, ebay or somewhere else online. In 2001 I got lucky and was 
presented a brand new p-222 special edition Darryl Gywnn Racing power chair. 
That chair has some guts, it will climb places you shouldn't go. The first week 
I had it I took it close to a mile on rough grassy hills to get to the lake and 
popped a front tire. I was stupid and got air filled front casters(8x2) and to 
make it worse you couldn't take the wheel off without taking the tension off 
this spring system used for the suspension. I  called the dealer that presented 
it to me and he said, I learned the hard way with a chevy nova not to take 
things apart I couldn't handle, he was telling me not to get my father to fix 
it, but the price was 180.00, so my dad pulled it apart in the living room and 
I replaced the air filled tires with foam filled. That chair now sits in the 
corner with dead batteries and Im still in my quickie 2.
The biggest problem how things are handled with mobility solutions for the 
disabled is inequality. One guy gets a house given to him, free vans and 
another guy is given one hospital chair. Nothing is equal or even close to 
fair, the squeaky wheel and the best insurance plans get the most and the best. 
We need something that's equal across the board for every disabled individual. 
Im so tired of one golden boy or girl getting everything while someone else is 
laying in a bed that they cant get a new mattress for with half a dozen bed 
sores. Am I the only one that's heard the stories and had disabled friends die 
over a wheelchair cushion they never got?
Ron  

On Thursday, January 19, 2017 8:39 PM, greg  wrote:
 

 #yiv1725865668 #yiv1725865668 --body{font-size:14pt;}#yiv1725865668 
LI{display:list-item;margin:0.00in;}#yiv1725865668 
p{display:block;margin:0.00in;}#yiv1725865668 body{}#yiv1725865668 I was at St. 
Joseph's wheelchair clinic, with a dealer rep. 
They said Medicare wont cover seat raisers anymore for any reason.Even with a 
docs orders. We are going to write it up and hope. I'll try appealing.Have to 
at least try.Greg > A medical doctor that specializes in rehab medicine, can 
order such> based on your medical needs. Best Wishes  >> In a message dated 
1/19/2017 7:07:42 P.M. Central Standard Time,> g...@eskimo.com writes:> Had 
an appointment>> yesterday, getting fit for a new chair. They said my AARP>> 
Medicare Replacement does not cover seat elevators or bigger>> motors. I 
understand not covering faster motors, but I need the>> seat raised to get 
transfered. It costs like $2,500-$3,000 to add>> it. Same for bigger motors. 
Thats $5-6,000, just for that. Plus>> 20% Ouch... Greg

   

Re: [QUAD-L] testing

[RONALD L PRACHT]

I made the mistake of using my real name for the list. Somebody I know was 
searching my name via google and found some info they didn't like and it was 
bad. I didn't realize years ago there was the ability to look at all previous 
quad posts. Now I watch what I post.
Ron  

On Monday, January 16, 2017 7:32 PM, "diannal...@aol.com" 
 wrote:
 

 yes, I already have g-mail. I may have to just change for the list  only.


-Original Message-
From: Danny Hearn 
To: Jim Lubin ; diannal767 
Cc: quad-list 
Sent: Mon, Jan 16, 2017 4:19 pm
Subject: Re: [QUAD-L] testing

I used to use AOL years ago and would get kicked off from time to time and 
would sign up again but now I have yahoo and seldom have a problem anymore . 
Dan H** 

On Monday, January 16, 2017 1:26 PM, Jim Lubin  wrote:
 

 you could get a free gmail account and either:   
   - forward your gmail to your aol email
   - use gmail to retrieve your aol email.
I use gmail as my main email and have it setup to get my mail from aol, 
hotmail, msn and comcast accounts via pop3. I found gmail has better spam 
filters. 
On Mon, Jan 16, 2017 at 9:44 AM,  wrote:

I use AOL so get kicked off all the time.



   

   

Re: [QUAD-L] Shoulder

[RONALD L PRACHT]

I take a supplement with Glucosamine, Chrondroitin and Msm to fight the 
shoulder issues I had. What an expert told me I was dealing with was an 
impingement. Can you lift your arm straight up without pain? When does the pain 
start to your knowledge? That's the questions to start with.
Ron 

On Tuesday, January 10, 2017 4:59 PM, greg  wrote:
 

 My shoulder is getting 
worse, more frequent. It feels like an ice-pick jammed under my shoulder blade. 
The pain comes and goes. Might be gone a week, might last a week. Might be gone 
a day, a month, then last a day or month. It's a lot more often now. My pain 
meds don't even dull it. Though I can't feel most of my arm, it feels like its 
shooting pain down my arm, but also like a numbness down my arm. Like I banged 
my elbow. I can deal with that part. It's the feeling of an ice pick jammed in 
there that really hurts. I've had Xrays, CatScan, MRI, Electric Stimulation, 
Pinched Nerve Tests, seen docs, neurologist surgeon.  Nothing… Can't find a 
thing. It all started with a mole. It felt like a sliver in y back when it 
touched something. So they removed it. Then the same feeling came back later 
even though nothing is there. No mark, red spot. It's just getting worse. I'd 
cut my arm off it I thought it would help. Cortisone shots help the first few 
times, but the last one did nothing.  $@!*# Greg 

   

Re: [QUAD-L] Medicare

[RONALD L PRACHT]

The people against national health insurance are the people that have great 
insurance through their employer. They say screw everyone else. We need an 
across the board national healthcare for everyone, then if you want better or 
extra coverage buy it.
Ron  

On Thursday, January 5, 2017 8:27 PM, Danny Hearn  
wrote:
 

 I'm with you GregI wish they could have a National Insurance where all 
states had coverage and was not so confusing to all, The big Insurance Co. are 
ran for profit, but I think they could still do well enough even with a 
National coverage. Dan H** 

On Thursday, January 5, 2017 6:24 PM, greg  wrote:
 

 #yiv1540485406 #yiv1540485406 -- body{font-size:14pt;}#yiv1540485406 
LI{display:list-item;margin:0.00in;}#yiv1540485406 
p{display:block;margin:0.00in;}#yiv1540485406 body{}#yiv1540485406 There is no 
perfect insurance option, but I think the best option would simply to have a 
National Medicare. Then if you want extra, you can buy it. I never understood 
those against government insurance that say their reasons are they don't want 
government making medical decisions. Yet they think having insurance companies 
that make profits by denying you make the decisions is better??? Insurance co. 
gives bounces for denying you, even if its covered, knowing a lot of people do 
not appeal. I hate the Obamacare system. Way to confusing, but I'm 100% for 
National Insurance. Greg

   

   

Re: [QUAD-L] Chairs

[RONALD L PRACHT]

I own a p-222 . I believe that is a package above the standard. Its a tough, 
fast chair though. 
ron 

On Monday, January 2, 2017 5:42 PM, greg  wrote:
 

 These are the chairs I'm 
thinking of. I haven't had rear wheel in 25 years.Does anyone know if the P-222 
is standard 8.5 or that a speed package? Quickie P-222, Rear 8.5Quickie Mid, 
QM-720Permobil M300 Mid, 6-7.5 Thx, Greg

   

[QUAD-L] If you won 500,000 how would it change your life as a quad?

[RONALD L PRACHT]

 I often imagine what I could do if I had more finances and let my mind wander. 
What would you guys do?
Ron

Re: [QUAD-L] Thieves

[RONALD L PRACHT]

I woke up one day to a horror. Someone had bought 11 computer monitors on my 
paypal using my name, but it was caught. 

On Saturday, December 31, 2016 4:50 PM, Johnny Cammon 
 wrote:
 

 Nodoubt..wow Yes that was a close one.good thing your bank caught that 
Larry!
On Sat, Dec 31, 2016 at 11:33 AM, Randy Anderson  
wrote:

I changed mine to.

On Sat, Dec 31, 2016 at 2:00 AM, Gail Holmes  wrote:

I've been ignoring these notices too long as well. 
Thanks for reminding us and I'm also glad it wasn't worse for you.

Sent from my iPhone
On Dec 30, 2016, at 10:45 PM, Lori Michaelson  wrote:


I have been getting more suggestions from PayPal about protecting accounts so, 
yes, everyone do exactly what Larry suggested! Easier said than done when 
having so many of them but geez Larry... very fortunate to have your bank catch 
it all except $75 but $75 is $75 in any case. *Sigh*
HAPPY NEW YEAR EVERYONE!!!
On Fri, Dec 30, 2016 at 3:36 PM, Larry Willis  wrote:

Guys, my paypal account was just scammed, three transactions for almost $3600. 
Thank goodness my bank caught all but $75. Change your passwords often, guys, 
and make them cryptic. Larry

Sent from my iPad




-- 
"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







   

[QUAD-L] What did fellow quads get for christmas?

[RONALD L PRACHT]

 I got a portable dvd player for my table by my bed. An Atari portable to 
relive my childhood games. A hobby mat to work on my r/c models. Other misc 
junk.
How about you?
Ron 

Re: [QUAD-L] Holiday

[RONALD L PRACHT]

I need to make some changes to my quadself for the new year but im stuck in a 
rut. 

On Sunday, December 25, 2016 8:27 PM, "jume9...@comcast.net" 
 wrote:
 

  Happier new year to all of you!! Can't be worse eh?Meredith
Sent from my LG Mobile
-- Original message--From: Bobbie Humphreys Date: Sat, Dec 24, 2016 
11:22 AMTo: Nichole Rohling;Cc: Ismael Cavazos;quad-list@eskimo.com;Subject:Re: 
[QUAD-L] Holiday
My gift  is you all being there whenever we need each other all year longI 
love ❤️ and respect each and every one of you Have a healthy New Year!Bobbie 

"You must fail in order to succeed"
On Dec 24, 2016, at 12:24 PM, Nichole Rohling  wrote:



#yiv2437609273 #yiv2437609273 -- _filtered #yiv2437609273 {} _filtered 
#yiv2437609273 {font-family:Calibri;} _filtered #yiv2437609273 
{font-family:Tahoma;}#yiv2437609273 #yiv2437609273 #yiv2437609273 
#yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 
oNormal, #yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 
#yiv2437609273 #yiv2437609273 #yiv2437609273 oNormal, #yiv2437609273 
#yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 
#yiv2437609273 oNormal 
{margin:0in;margin-bottom:.0001pt;font-size:11.0pt;}#yiv2437609273 a:link, 
#yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 
#yiv2437609273 #yiv2437609273 oHyperlink 
{color:blue;text-decoration:underline;}#yiv2437609273 a:visited, #yiv2437609273 
#yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 #yiv2437609273 
#yiv2437609273 oHyperlinkFollowed 
{color:purple;text-decoration:underline;}#yiv2437609273 
span.yiv2437609273EmailStyle17 {color:windowtext;}#yiv2437609273 
span.yiv2437609273EmailStyle18 {color:#1F497D;}#yiv2437609273 
.yiv2437609273MsoChpDefault {font-size:10.0pt;} _filtered #yiv2437609273 
{margin:1.0in 1.0in 1.0in 1.0in;}#yiv2437609273 div.yiv2437609273WordSection1 
{}#yiv2437609273 Merry Christmas  From: Ismael Cavazos 
[mailto:ismaelcavaz...@gmail.com] 
Sent: Saturday, December 24, 2016 6:24 AM
To: Blue
Subject: [QUAD-L] Holiday  Hello my friends quadriplegic I want to wish you 
from my family to your family a Merry Christmas and a safe and enjoy your 
Christmas and God bless you

   

Re: [QUAD-L] pain pills causind A.D.

[RONALD L PRACHT]

I take the 10mg standard oxycodone( 6 per day) and 20mg oxycodone time 
release(2 per day). Its changed dramatically on how it helps the pain. In the 
beginning one 10 mg pill help for 6 hours, now fast forward 4.5 years the same 
amount lasts about 2 hours. Its scary because you get dependent on the drug and 
if you stop you hurt like crazy, cant sleep and go nuts. Drugs change the way 
your brain functions and its very difficult to get off by yourself. Its 
impossible to understand unless you have been through it.
Ron  

On Friday, December 23, 2016 7:09 PM, "jume9...@comcast.net" 
<jume9...@comcast.net> wrote:
 

  Hi Ronald, I take 20 mg. And they are round small and grey. What mg. Do you 
take? Is there a label on the side of the bottle stating a change? If not bring 
them back to the pharmacy. I have never had the head sweating. As a matter of 
fact pain meds help with A.D.  Do you think you might have an infection or 
constipation?  I'm curious, do you feel after 4 yrs that the oxy does not work 
as well as in the beginning? Meredith
Sent from my LG Mobile
-- Original message------From: RONALD L PRACHT Date: Thu, Dec 22, 2016 6:48 
PMTo: Quad-list Post;Subject:[QUAD-L] pain pills causind A.D.
 Why would taking oxycodone cause my head to sweat and go into mild 
dysreflexia? Ive been on it for 4 years and it never did this to me. I hope its 
not stomach lining damage or something??
Ron

   

Re: [QUAD-L] pain pills causind A.D.

[RONALD L PRACHT]

It is a different shaped pill, usually I get round ones but this time they are 
elongated oval shape. Could be a little different causing the issue. I was 
concerned of my stomach lining maybe getting screwed up.
Ron  

On Friday, December 23, 2016 12:52 PM, Larry Willis 
<lwillis82...@gmail.com> wrote:
 

 Ron, have you had a new prescription filled lately? Sometimes I'll get a batch 
that cause me to itch terribly. With the next bottle the itching goes away. Bad 
batch, I assume. Are you taking it in combo with anything else?

Larry WillisRetired and proud of it

On Dec 22, 2016, at 9:46 PM, RONALD L PRACHT <r.pra...@sbcglobal.net> wrote:


 Why would taking oxycodone cause my head to sweat and go into mild 
dysreflexia? Ive been on it for 4 years and it never did this to me. I hope its 
not stomach lining damage or something??
Ron


   

[QUAD-L] pain pills causind A.D.

[RONALD L PRACHT]

 Why would taking oxycodone cause my head to sweat and go into mild 
dysreflexia? Ive been on it for 4 years and it never did this to me. I hope its 
not stomach lining damage or something??
Ron

Re: [QUAD-L] Drone Flying

[RONALD L PRACHT]

Watch a quad on youtube named chriscolwell. He is a c4-5 that has adapted and 
perfected the adaptation of the sticks to fly a drone. Awesome guy to learn 
quad things from, he has like a thousand vids.
Ron  

On Tuesday, December 20, 2016 9:28 AM, greg  wrote:
 

 I wish I could fly a 
Drone. They look so cool. I just can't operate the duel joysticks. But I saw a 
new joystick coming out on a drone called Shift Drone. Looks cool. I think a 
lot of us could do it. It has a ring like thing that goes over your thumb. You 
just move your thumb to fly it. I can't use my thumb, but it looks like it 
would work if you can move your arm a bit. Suppose to come out this next year. 
Greg

   

Re: [QUAD-L] New Law Expands Access To Special Needs Trusts - Disability Scoop

[RONALD L PRACHT]

Any funds in the trust are not viewable to Medicaid, lawyers, divorce or any 
other source. Its essentially "hidden" money. The old drawback was the cost and 
the fact you must put a family members name first on the trust.
Ron 

On Sunday, December 18, 2016 3:16 AM, Dana Wray <daano...@gmail.com> wrote:
 

 Does your trust affect your ability to get Medicaid funded care? I think 
you're limited to having $2000 in your checking or savings account to qualify 
for Medicaid.Dana C 4-5 quadriplegia, 42 years post injury.
On Sat, Dec 17, 2016 at 1:25 AM, RONALD L PRACHT <r.pra...@sbcglobal.net> wrote:

This is awesome Jim. I paid big money to get mine set up, but its the way to go.
ron 

On Saturday, December 17, 2016 12:09 AM, Jim Lubin <jlu...@eskimo.com> 
wrote:
 

 https://www.disabilityscoop. com/2016/12/16/new-access- 
special-needs-trusts/23140/
New Law Expands Access To Special Needs Trustsby Michelle Diament | December 
16, 2016
Tucked inside a larger bill signed by President Barack Obama this week is a 
tweak to federal law that’s designed to make it easier for people with 
disabilities to save money.
Under the new law, individuals with disabilities can create a special needs 
trust for themselves rather than relying on others to do so.
Previously, such trusts needed to be established by a parent, grandparent, 
legal guardian or a court.
The change outlined in a bill known as the Special Needs Trust Fairness Act was 
approved unanimously by the U.S. Senate last year and passed the House of 
Representatives in September.
But due to some differences in the House version, the measure returned to the 
Senate and was ultimately bundled within the 21st Century Cures Act, which 
Obama signed Tuesday.
The option for people with disabilities to create their own special needs 
trusts takes effect immediately.
“This provision replaces an antiquated law that was unfair and outmoded in its 
treatment of people with disabilities,” said Sen. Chuck Grassley, R-Iowa, who 
sponsored the Special Needs Trust Fairness Act.
“Those who want and need to set up a trust to help pay for their care should be 
able to do so, plain and simple,” Grassley said. “This measure allows 
individuals to act in their own interests with their own assets without having 
to rely on a family member or the courts.”

   



   

Re: [QUAD-L] New Law Expands Access To Special Needs Trusts - Disability Scoop

[RONALD L PRACHT]

This is awesome Jim. I paid big money to get mine set up, but its the way to go.
ron 

On Saturday, December 17, 2016 12:09 AM, Jim Lubin  
wrote:
 

 
https://www.disabilityscoop.com/2016/12/16/new-access-special-needs-trusts/23140/
New Law Expands Access To Special Needs Trustsby Michelle Diament | December 
16, 2016
Tucked inside a larger bill signed by President Barack Obama this week is a 
tweak to federal law that’s designed to make it easier for people with 
disabilities to save money.
Under the new law, individuals with disabilities can create a special needs 
trust for themselves rather than relying on others to do so.
Previously, such trusts needed to be established by a parent, grandparent, 
legal guardian or a court.
The change outlined in a bill known as the Special Needs Trust Fairness Act was 
approved unanimously by the U.S. Senate last year and passed the House of 
Representatives in September.
But due to some differences in the House version, the measure returned to the 
Senate and was ultimately bundled within the 21st Century Cures Act, which 
Obama signed Tuesday.
The option for people with disabilities to create their own special needs 
trusts takes effect immediately.
“This provision replaces an antiquated law that was unfair and outmoded in its 
treatment of people with disabilities,” said Sen. Chuck Grassley, R-Iowa, who 
sponsored the Special Needs Trust Fairness Act.
“Those who want and need to set up a trust to help pay for their care should be 
able to do so, plain and simple,” Grassley said. “This measure allows 
individuals to act in their own interests with their own assets without having 
to rely on a family member or the courts.”

   

Re: [QUAD-L] Weather

[RONALD L PRACHT]

you are right, humidity or something close to it changes it all
Ron 

On Tuesday, November 29, 2016 8:51 AM, greg  wrote:
 

 I have a remote for a 
space heater, I attach it to he cord of my bed remote. I can use it, but must 
pull my arm out from the covers, but often can get it back under.It must be air 
presure, etc., because I turn my heat up so my house is just as warm as always, 
yet I'm ll bundled up, yet freezing shaking, cold.Greg

   

Re: [QUAD-L] Pain, sleep, and other trivia

[RONALD L PRACHT]

I get so cold while Im in bed I wear a hoodie and a knit cap to try to stay 
warm. I even put a heater next to my bed I can turn on. Its crazy but I do 
little pushups to try to get my body heat up. My syrinx is killing me and the 
amount of pain killers I take is increasing. Im scared but nobody understand 
and I try to make it.
Ron 

On Thursday, November 24, 2016 8:29 PM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:
 

 I get so cold while Im in bed I wear a hoodie and a knit cap to try to stay 
warm. I even put a heater next to my bed I can turn on. Its crazy but I do 
little pushups to try to get my body heat up. My syrinx is killing me and the 
amount of pain killers I take is increasing. Im scared but nobody understand 
and I try to make it.
Ron 

On Thursday, November 24, 2016 8:10 PM, Danny Hearn <ddh...@sbcglobal.net> 
wrote:
 

 Yep, Larry...at night my sleeping has been rough, neck,shoulders and mid spine 
area kills me...I always seem to do much worse in the winter/cold & rainy 
monthsI hope we survive another winteralready longing for spring.  Dan 
H*** 

On Thursday, November 24, 2016 7:56 PM, Bryce Willis <lwillis82...@msn.com> 
wrote:
 

 Hey guys. For the last two months my neck and shoulders have hurt so much I 
can't sleep at night. I don't know if it's arthritis or sleeping like a 
pretzel. Anyone else have this problem? Hope everyone had a great day! Larry 

Sent from my iPad

   

   

   

Re: [QUAD-L] Sunburns

[RONALD L PRACHT]

I wanted to thank you Lori for that long , vivid story you told. Over the years 
I have enjoyed your brutal honesty in your posts. I think when your a quad you 
see things in more detail and very different from the average person. Im glad 
you are doing a lot better than you were awhile ago. You proved a lot to 
yourself being able to get your strength back up after the loss of your man. 
Many people couldn't have made it after that hit and would have laid down.
Ron 

On Monday, November 21, 2016 2:12 PM, greg  wrote:
 

 #yiv7458489419 #yiv7458489419 --body{font-size:14pt;}#yiv7458489419 
LI{display:list-item;margin:0.00in;}#yiv7458489419 
p{display:block;margin:0.00in;}#yiv7458489419 body{}#yiv7458489419 I often put 
about 6 miles on a walk, a much as 10. Though haven't as much lately. My 
batteries are just not holding a charge long enough. Just last month I got new 
batteries, yet after 3 miles, I'm barely moving. They are coming out in 2 weeks 
to check it out. In order to get the batteries exchanged, they have to check if 
something is causing this. Charger says its full, chair meter says full. Chair 
is very old, I just started the new chair process. Greg

> What area in Arizona? How many miles do you put in on a nice> 
> day..tell about your adventure!>>> On Friday, November 18, 2016 6:15 
> PM, greg  wrote:>>> This is sunburn season here in AZ. 
> Finely cooled off enough to> spend the day in the sun. I spent the day just 
> cruising around. Now> my face is burning red, flushed, tight, nose itches. 
> Gonna hurt> tomorrow.>> Greg

   

Re: [QUAD-L] Sunburns

[RONALD L PRACHT]

What area in Arizona? How many miles do you put in on a nice day..tell 
about your adventure! 

On Friday, November 18, 2016 6:15 PM, greg  wrote:
 

 This is sunburn season here in AZ. Finely 
cooled off enough to spend the day in the sun. I spent the day just cruising 
around. Now my face is burning red, flushed, tight, nose itches. Gonna hurt 
tomorrow.  Greg

   

Re: [QUAD-L] Groin rash

[RONALD L PRACHT]

How can a doctor really examine a quad other than bring in a photo? I think 
quads that run to the doc at every whim aren't going to live very long. You got 
to clean between your legs in the shower, then dry it out. Get clean of any 
accidents as quick as possible. Use cream when it gets red. My fee is $350.00 
for that.lol
Ron 

On Thursday, October 20, 2016 2:54 PM, "jume9...@comcast.net" 
 wrote:
 

  You shoul see Dr. But in the time antibiotic cream could help ease the 
redness. Niastation cream is good through presription. 
Sent from my LG Mobile
-- Original message--From: Date: Thu, Oct 20, 2016 7:49 AMTo: 
lissw...@hotmail.com;quad-list@eskimo.com;Subject:Re: [QUAD-L] Groin rash
 See a doctor, There are creams that you need a prescription for. It is 
treatable. I have had it too.  In a message dated 10/19/2016 2:54:58 P.M. 
Eastern Daylight Time, lissw...@hotmail.com writes:
 Hello everyone,

I hardly ever write here but I read the emails frequently. This time I need 
help though.
I've had a terrible rash in my groin/inner thigh area for about 2 months now. I 
have tried different ointments, corn starch,
Chamomile and nothing works. I'm 10 years post injury and this has never 
happened to me before. I have no feeling there but
when I'm being cleaned my body get pain reactions, strong spasms, chills and my 
face gets really hot.
Anything someone could recommend? Do I need to see a doctor?

Thanks in advance and best regards to all.

  From: g...@eskimo.com
To: quad-list@eskimo.com
Date: Tue, 18 Oct 2016 16:47:43 -0700
Subject: [QUAD-L] Internet

 #yiv1030099096 #yiv1030099096 --.yiv1030099096ExternalClass 
{font-size:14pt;}#yiv1030099096 .yiv1030099096ExternalClass LI 
{display:list-item;}#yiv1030099096 .yiv1030099096ExternalClass p 
{display:block;}#yiv1030099096 .yiv1030099096ExternalClass {}#yiv1030099096  
I've been having very bad internet problems, so I had them come out. I've been 
paying for fast cable internet. I found out the modem / router they put in a 
long time ago can't  handle those speeds. So Its been slower than it should 
be... Good news is, our area is one of the first with Gigablast. 1gbps. And its 
less than I pay now. Can't wait. Greg=


   

Re: [QUAD-L] How to i get my Quickie p-222SE Power chair to free wheel

[RONALD L PRACHT]

I got it. Had to keep jamming the motor engage lever back and forth and she 
broke loose. About killed my quad self.
Ron 

On Wednesday, September 28, 2016 7:42 PM, "wheelch...@aol.com" 
<wheelch...@aol.com> wrote:
 

 A trans-motor, consist of 3 separate components.  The Motor, the Gearbox and 
the Magnetic Break. You might be moving the Free Gear Lever, but if the pin 
that is connected to it, is not properly secured it will just rotate and not 
move.  How old are your batteries?Best Wishes In a message dated 9/28/2016 
7:37:58 P.M. Central Daylight Time, ddh...@sbcglobal.net writes:
  Ron...many of the power chair makers have a tech line to call for helpmy 
chair guys used to always call when they had problems, perhaps quickie can give 
you the answer.  Dan H** 

On Wednesday, September 28, 2016 7:32 PM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:


 I have a 2001 Quickie P-222 Power Chair that the batteries are dead beyond 
the ability to charge. I pulled the motor disengage level on each of the two 
motors and it still wont move. Is there something that disengages the brakes or 
something Im missing to get the chair to roll? Thanks my dads mad and I need an 
answer. Thank you in advance. 
 Ron




   

Re: [QUAD-L] How to i get my Quickie p-222SE Power chair to free wheel

[RONALD L PRACHT]

Batteries are 10 yrs old. They were the sealed lead acid. im assuming they 
dropped below the chargers ability to charge them, need to be taken out, but 
now I just need the thing to freewheel. It has he brushless system which was a 
new idea in 2001. its the chair Darryl Gwynn gave me, very little 
use...runs great if it has proper batteries . Only a few were made in this 
paint design. I would sell it to someone if they are interested.
Ron  

On Wednesday, September 28, 2016 7:42 PM, "wheelch...@aol.com" 
<wheelch...@aol.com> wrote:
 

 A trans-motor, consist of 3 separate components.  The Motor, the Gearbox and 
the Magnetic Break. You might be moving the Free Gear Lever, but if the pin 
that is connected to it, is not properly secured it will just rotate and not 
move.  How old are your batteries?Best Wishes In a message dated 9/28/2016 
7:37:58 P.M. Central Daylight Time, ddh...@sbcglobal.net writes:
  Ron...many of the power chair makers have a tech line to call for helpmy 
chair guys used to always call when they had problems, perhaps quickie can give 
you the answer.  Dan H** 

On Wednesday, September 28, 2016 7:32 PM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:


 I have a 2001 Quickie P-222 Power Chair that the batteries are dead beyond 
the ability to charge. I pulled the motor disengage level on each of the two 
motors and it still wont move. Is there something that disengages the brakes or 
something Im missing to get the chair to roll? Thanks my dads mad and I need an 
answer. Thank you in advance. 
 Ron




   

Re: [QUAD-L] How to i get my Quickie p-222SE Power chair to free wheel

[RONALD L PRACHT]

There is a little something Im missing. It must be the brake that clicks when 
you let off. Someone on here has to know , if not a jack and a furniture dolly 
are in order, lol.
ron 

On Wednesday, September 28, 2016 7:37 PM, Danny Hearn 
<ddh...@sbcglobal.net> wrote:
 

 Ron...many of the power chair makers have a tech line to call for helpmy 
chair guys used to always call when they had problems, perhaps quickie can give 
you the answer.  Dan H** 

On Wednesday, September 28, 2016 7:32 PM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:
 

  I have a 2001 Quickie P-222 Power Chair that the batteries are dead beyond 
the ability to charge. I pulled the motor disengage level on each of the two 
motors and it still wont move. Is there something that disengages the brakes or 
something Im missing to get the chair to roll? Thanks my dads mad and I need an 
answer. Thank you in advance.
Ron

   

   

Re: [QUAD-L] Sore near my tailbone, got to stay off, need advice.

[RONALD L PRACHT]

I take it and order it as well. They say you cant overdose on it. ron 

On Thursday, September 22, 2016 4:50 AM, Carolyn Boyles 
 wrote:
 

  Also be sure to get plenty of Vitamin C. If you're not on blood thinners or 
other prescription medications that would prohibit its use, then you need to 
take 6,000 mg a day. But don't get it from a grocery store or pharmacy. Find 
out what the most absorbable type of C is online (my memory escapes me at the 
moment) and get it from a vitamin specialty store. If you don't have one 
locally, Vitacost.com is a good place to buy supplements. Hope this helps.
  
 On 9/21/2016 9:46 PM, cviewe...@aol.com wrote:
  
 
 I too had a pressure sore and the wound Doc said to keep off it. I spent 6 
months in bed and only got up once a week to go to the wound Doc. It finally 
did heal and I am back in my chair with a Roho cushion all the time.  Be sure 
and eat plenty of protein. I did not want to stay in bed either BUT the sore 
did heal,   Rose      In a message dated 9/21/2016 6:43:58 P.M. Eastern 
Daylight Time, curlyle...@verizon.net writes: 
  Hi, i have a sore starting near my tailbone thats having trouble healing 
because im always on it. My wound doc says i have to relive the pressure at 
times by shifting my hips side to side. Even when im sleeping on my back i have 
to do that. He said about a wedge. I looked online but i think before i order 
one. Can you guys please give me some advice on what you use or used. Thanks 
alot.  
  
 

   

Re: [QUAD-L] Dreams

[RONALD L PRACHT]

It doesn't happen to often. I was reading something that was trying to say that 
you can get yourself in tune for such a dream. I just simply am having a dream 
but realize its a dream while the dreams going on. I didn't know if such a 
thing had a name. I thing its a lucid dream. Im sure Im not the only person on 
the list to have one. When Im in a lot of pain I dream more. 

On Wednesday, September 21, 2016 9:45 PM, alcibiates2 
<alcibiat...@yahoo.com> wrote:
 

 Yes, I have had dreams that I seemed to be in control of. I was doing drugs at 
that time. Best Wishes,John s 

 Original message 
From: RONALD L PRACHT <r.pra...@sbcglobal.net> 
Date: 09/21/2016 7:10 PM (GMT-05:00) 
To: Quad-list Post <quad-list@eskimo.com> 
Subject: Re: [QUAD-L] Dreams 

Has anybody had a dream that you realized was a dream therefore did what you 
want. I think its called as lucid dream.
ron 

On Wednesday, September 21, 2016 11:16 AM, Danny Hearn 
<ddh...@sbcglobal.net> wrote:
 

 Sometimes I dream that I can get up out of my chair and walk but not smoothly, 
I walk like a disabled person but everyone around seems thrilled about it, not 
sure what that dream is about but I have had that type a few times.   What do 
you guys think of the exoskeletons that were originally invented for the 
military but in the future they want to make available to the public, when they 
can get the cost of them down to a more affordable price range. Dan H** 

On Wednesday, September 21, 2016 10:42 AM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:
 

 Sometimes Im in a chair, sometimes not.but Im always fighting or cant 
keep up. something is always wrong even if a chair isn't involved.
Ron 

On Wednesday, September 21, 2016 9:22 AM, greg <g...@eskimo.com> wrote:
 

 #yiv8548817661 -- body{font-size:14pt;}#yiv8548817661 
LI{display:list-item;margin:0.00in;}#yiv8548817661 
p{display:block;margin:0.00in;}#yiv8548817661 body{}#yiv8548817661 When you 
dream, are you paralyzed, walking, or both? I go back and forth. I'd say:50% of 
my dreams I walk.25% of the time I'm in my chair.25% of the time I'm both. Like 
I'm in my chair, but I can get up and walk, but its very hard and I strugle. 
Like I'm paralyzed, but I get up and strugle to get up to go to the bathroom. 
Very wierd feeling. Greg

   

   

   

   

Re: [QUAD-L] Dreams

[RONALD L PRACHT]

Has anybody had a dream that you realized was a dream therefore did what you 
want. I think its called as lucid dream.
ron 

On Wednesday, September 21, 2016 11:16 AM, Danny Hearn 
<ddh...@sbcglobal.net> wrote:
 

 Sometimes I dream that I can get up out of my chair and walk but not smoothly, 
I walk like a disabled person but everyone around seems thrilled about it, not 
sure what that dream is about but I have had that type a few times.   What do 
you guys think of the exoskeletons that were originally invented for the 
military but in the future they want to make available to the public, when they 
can get the cost of them down to a more affordable price range. Dan H** 

On Wednesday, September 21, 2016 10:42 AM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:
 

 Sometimes Im in a chair, sometimes not.but Im always fighting or cant 
keep up. something is always wrong even if a chair isn't involved.
Ron 

On Wednesday, September 21, 2016 9:22 AM, greg <g...@eskimo.com> wrote:
 

 #yiv2001430326 -- body{font-size:14pt;}#yiv2001430326 
LI{display:list-item;margin:0.00in;}#yiv2001430326 
p{display:block;margin:0.00in;}#yiv2001430326 body{}#yiv2001430326 When you 
dream, are you paralyzed, walking, or both? I go back and forth. I'd say:50% of 
my dreams I walk.25% of the time I'm in my chair.25% of the time I'm both. Like 
I'm in my chair, but I can get up and walk, but its very hard and I strugle. 
Like I'm paralyzed, but I get up and strugle to get up to go to the bathroom. 
Very wierd feeling. Greg

   

   

   

Re: [QUAD-L] Dreams

[RONALD L PRACHT]

Sometimes Im in a chair, sometimes not.but Im always fighting or cant 
keep up. something is always wrong even if a chair isn't involved.
Ron 

On Wednesday, September 21, 2016 9:22 AM, greg  wrote:
 

 When you dream, are you 
paralyzed, walking, or both? I go back and forth. I'd say:50% of my dreams I 
walk.25% of the time I'm in my chair.25% of the time I'm both. Like I'm in my 
chair, but I can get up and walk, but its very hard and I strugle. Like I'm 
paralyzed, but I get up and strugle to get up to go to the bathroom. Very wierd 
feeling. Greg

   

Re: [QUAD-L] Smart911

[RONALD L PRACHT]

I was wheeling in my neighborhood and a fire truck stopped and the guys told me 
to call in and tell them Im paralyzed, my address and where I sleep in the 
house.
Ron 

On Tuesday, August 2, 2016 9:23 AM, "wheelch...@aol.com" 
 wrote:
 

 If it is not available in your ZIP, ask your Fire Dept... why?   It might be a 
great project.Best Wishes In a message dated 8/2/2016 9:14:34 A.M. Central 
Daylight Time, quadjkin...@gmail.com writes:
 I put my zip in and found out that the only area there supporting is in 
Evanston il. I guess I'll have to wait until theres more avaiibiiltystill 
in all ! a good tool for emergencies.. 
 On Tue, Aug 2, 2016 at 7:22 AM,  wrote:
 
  Very Smart.  The info is private and never shared.   Create your own 911 
Profile.   Best Wishes    In a message dated 8/1/2016 11:10:36 P.M. Central 
Daylight Time, jlu...@eskimo.com writes: 
 https://www.smart911.com/ 
  Plan Ahead For Any Emergency 
 Give 9-1-1 the information they need to help you fast.





  

[QUAD-L] history of the treatment of spinal injuries

[RONALD L PRACHT]

 http://pmj.bmj.com/content/81/952/108.full.pdf

Re: [QUAD-L] 18 Years today

[RONALD L PRACHT]

Im in my 18th year as well Nicole. Quad life is like a space mission, you 
travel through unknown territory and no matter how much you prepare its still 
not enough, lol. You are doing well though, I always enjoy your posts.
Ron 

On Monday, June 27, 2016 6:58 PM, nichole rohling  
wrote:
 

 18 years ago today I performed my Olympic 
dive J changing my life for forever………I was 29, my son 13 and daughter 19 
months  Thank you all for your many years of advice and help.  Nickic5/6

  

[QUAD-L] catherization tubes available

[RONALD L PRACHT]

 I have boxes of sealed 200 count dover 14 French cath tubes. They are the 
stiffer rubber easier for quads to insert, individually packaged...200 per 
box.If anyone is interested let me know and I will give you a steal of a deal. 
Price will depend on shipping cost. 
Ron

Re: Fwd: [QUAD-L] Chris Karson Passes At 46 Years.

[RONALD L PRACHT]

Im very sorry for such a loss. The only good is he went out on top doing what 
he wanted and that's more than even many abs get. God bless
Ron  

On Sunday, June 5, 2016 2:28 PM, Larry Willis  
wrote:
 

 Wow..just, wow! I am speechless. All my love, sympathy, and prayers go out 
to you.

Larry WillisRetired and proud of it

Begin forwarded message:


Resent-From: quad-list@eskimo.com
From: Lori Michaelson 
Date: June 5, 2016 at 3:07:32 PM EDT
To: "wheelch...@aol.com" , quad-list 
Subject: Re: [QUAD-L] Chris Karson Passes At 46 Years.



Oh W ... I never expected this to land in my inbox this morning and I am so 
saddened by the news that I hardly know what to say to you. Except for one very 
important thing... he left a wonderful legacy! Just looking at all he has 
accomplished speaks volumes in itself and by knowing that he was raised by 
you... I know that he was a wonderful young man to keep going and doing all he 
could when he could. 
He passed away doing something he that he had a passion for and that he loved 
and that is also important. If you set up an online obituary for people to 
light candles or express their feelings... please let us know about that also. 
http://www.legacy.com/obituaries/local is a good one. I can only speak for 
myself but you can also put up at least one picture of Chris on this website as 
well as the obituary.
Huge hugs across the miles... ~Lori
On Sun, Jun 5, 2016 at 9:59 AM, nichole rohling  wrote:

I am so very sorry for the extreme loss you have suffered. My utmost sympathy 
to you and your family. I pray that God holds you in his embrace and you are 
given peace that surpasses all understanding. Once again I am so sorry for your 
loiss. Nickic5/6 From: wheelch...@aol.com [mailto:wheelch...@aol.com] 
Sent: Sunday, June 05, 2016 1:04 AM
To: quad-list@eskimo.com
Subject: [QUAD-L] Chris Karson Passes At 46 Years. My son Chris passed today.  
It wasn't his fault.  Injured at 19 years with a C4/5 SCI injury from a vehicle 
crash, he went on to attend at graduated Ball State University with a degree is 
Family Science and Social Service.  During his rehab period and while attending 
Ball State U, he designed, supervised the construction of North America Fastest 
Drag Van (10 Seconds @ 1/4 Mile).  His travels in racing took him all over the 
Midwest.  During the same period, Chris became friends with custom vans and 
custom vans in North America.  He became a Vanner and partnered with the 
Midwest Vans Limited and celebrated with them at so many "truck ins" and 
Nationals (Nats)  Chris, always found time to speak at prisons, to imates and 
juvenile centers with his special messages, several times a year. He inspired 
thousands of people over the years. Today, as he was returning from a car 
showing, sitting in the tow van, when his driver was towing his trailer and 
drag van,  along with 4 other custom vanners in a convoy,  his van was hit head 
on by a mini van driving at a high rate of speed the wrong way.  The force 
of the crash caused the mini van to catch fire and the fire spread to Chris's 
tow van.  His driver was able to escape thru the broken driver's window and was 
pull to safety while his van friend's tried to open the doors of the tow van 
and deploy the gate lift. The fire was intense. The impact forced Chris and his 
chair up against the lift ramp and he had a seat belt on. His friends burnt 
their hands and arms while trying to get Chris out of the van... to no avail 
and then the fire department and rescue arrived.  Chris lost his life quickly, 
per the corners conversation to me.  Its late this night and I am trying to 
reflex all that has happened today as well as Chris's sudden passing. You have 
to see his Facebook and the comments that continue to pour in from around the 
world as the people media reacts.  You can visit his website: 
http://www.karsonracing.com/ and see for yourself how he inspired others.  His 
facebook:  Chris Karson. As most can tell, my heart is heavy with grief and the 
thousand of people he affected.Best Wishes



-- 
"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] quad movie-You Before Me

[RONALD L PRACHT]

I watched another quad movie called "The Sea Inside Me", where the guy gets 
paralyzed diving I believe and lives for 20years and its clearly seen as a 
burden to at least his brother, then he meets a woman that becomes his friend 
and eventually helps him commit suicide. Another movie that follows the same 
problem was "Million Dollar Baby", where Clint Eastwood pulls the plug on a 
girl that he trained to fight, her family was to worried about going to 
Disneyland to care.
Ron 

On Thursday, June 2, 2016 1:44 PM, Danny Hearn  wrote:
 

 No, I did not know much details about the movie Ben, thanks for the info.  Dan 
H** 

On Thursday, June 2, 2016 1:34 PM, Ben Mattlin  
wrote:
 

 #yiv8436753723 #yiv8436753723 -- filtered {font-family:Helvetica;panose-1:2 11 
6 4 2 2 2 3 2 4;}#yiv8436753723 filtered {panose-1:2 4 5 3 5 4 6 3 2 
4;}#yiv8436753723 filtered {font-family:Calibri;panose-1:2 15 5 2 2 2 4 3 2 
4;}#yiv8436753723 filtered {font-family:Tahoma;panose-1:2 11 6 4 3 5 4 4 2 
4;}#yiv8436753723 filtered {panose-1:2 11 6 6 2 2 2 3 2 4;}#yiv8436753723 
p.yiv8436753723MsoNormal, #yiv8436753723 li.yiv8436753723MsoNormal, 
#yiv8436753723 div.yiv8436753723MsoNormal 
{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;}#yiv8436753723 a:link, 
#yiv8436753723 span.yiv8436753723MsoHyperlink 
{color:blue;text-decoration:underline;}#yiv8436753723 a:visited, #yiv8436753723 
span.yiv8436753723MsoHyperlinkFollowed 
{color:purple;text-decoration:underline;}#yiv8436753723 
span.yiv8436753723EmailStyle17 {color:black;}#yiv8436753723 
.yiv8436753723MsoChpDefault {font-size:10.0pt;}#yiv8436753723 filtered 
{margin:1.0in 1.0in 1.0in 1.0in;}#yiv8436753723 div.yiv8436753723WordSection1 
{}#yiv8436753723 You all are aware of the controversy around "Me Before You," 
right?  It's no spoiler to say the quad decides he's too much of a burden on 
his girlfriend and "nobly" commits suicide.  The movie portrays this as a 
righteous and romantic sacrifice, a bold and loving choice.  Pretty offensive 
and potentially dangerous, if you ask me (which no one did).  
__BEN MATTLIN
www.BenMattlin.comwww.MiracleBoyGrowsUp.com  From: Danny Hearn 
[mailto:ddh...@sbcglobal.net] 
Sent: Thursday, June 02, 2016 9:57 AM
To: Jim Lubin; quad-list@eskimo.com
Subject: Re: [QUAD-L] quad movie- Who's Driving Doug  Sounds like it may be a 
good movie Jim, have you guy's heard of the coming movie about a guy in a 
wheelchairI think it's called - You Before ME, the Band X Ambassadors do 
some  of the music for it, Anyhow I think it may be a good one also.   Dan H*** 
   

   

  

Fw: [QUAD-L] Shower Chair

[RONALD L PRACHT]

 On Wednesday, May 25, 2016 9:30 PM, "diannal...@aol.com" 
<diannal...@aol.com> wrote:
 

 I wish I could help somebody. I have a large Invacare shower chair, I would 
give it away. it'll soon be on craigslist. over the toilet chair, big back 
wheels, everything is plastic, hardly used, I've always hated it. so big my 
feet tangled. I give up on showers. I could get pics and dimentions if any one 
wanted to make a trip to ohio.dianna.sending this to you because my mail to 
quads list gets returned.


-Original Message-----
From: RONALD L PRACHT <r.pra...@sbcglobal.net>
To: Quad-list Post <quad-list@eskimo.com>
Sent: Wed, May 25, 2016 5:35 pm
Subject: Re: [QUAD-L] Shower Chair

Ive got some answers. Will post later. Im in the exact situation. They don't 
make the guardian stainless anymore, Im a 6'2 225. I found some possible 
solutions. Talk later.
Ron 

On Wednesday, May 25, 2016 3:07 PM, "sjg1073...@aol.com" 
<sjg1073...@aol.com> wrote:
 

  does anyone know where i can find a rehab shower commode chair. i've been 
using drive medical shower chairs since my accident 26post. they dont make the 
one i use its silver 5'' caster wheels and a bucket underneath so my care giver 
can help me. a lot have chair with no hand room underneath the seat. i'am on my 
last chair from them but the seat is sinking down and on amazon they $450  just 
for a new seat. i tried invacare chair but its not tall enough i'am 6'3  195. 
any ideas would be great, thanks Steve c6,7 quad  il 
  

On Thursday, May 19, 2016 6:25 AM, "wheelch...@aol.com" 
<wheelch...@aol.com> wrote:


I could be mistaken, but I thought Guardian was acquired by Invacare.  Call 
Invacare Customer Service and ask if the cushion is available as a part.   Best 
Wishes    In a message dated 5/19/2016 4:56:34 A.M. Central Daylight Time, 
r.pra...@sbcglobal.net writes: 
  Im in a search for a rolling shower/commode chair  I found one called a 
Ezeelife aluminum shower chair. Im probally going with the 20 inch model with 
the 24 inch rear wheels for user mobility. Its blue and has a rigid plastic 
back approx. 18 inches high. Im a tall guy 6'2 so I really need a long seat, 
but the 17 inches might have to do. The price is running about 495.00 plus 
95.00 for the 24 inch rear wheels from Medical products Unlimited. The chair I 
have used for 15 years was a stainless steel Guardian with a custom seat  that 
was 18 inches wide by 20 inches deep. I was lucky to get that custom seat at 
the time. Does anyone have any shower chair suggestions or anything to add? I 
might call my case manager and see if she can call a place called adaptability 
and let me roll in there and see what old ones they could cobble up for me. It 
sucks when your shower chair springs a leak, lol. 
 Ron 





   

  

Re: [QUAD-L] Shower Chair

[RONALD L PRACHT]

Ive got some answers. Will post later. Im in the exact situation. They don't 
make the guardian stainless anymore, Im a 6'2 225. I found some possible 
solutions. Talk later.
Ron 

On Wednesday, May 25, 2016 3:07 PM, "sjg1073...@aol.com" 
 wrote:
 

  does anyone know where i can find a rehab shower commode chair. i've been 
using drive medical shower chairs since my accident 26post. they dont make the 
one i use its silver 5'' caster wheels and a bucket underneath so my care giver 
can help me. a lot have chair with no hand room underneath the seat. i'am on my 
last chair from them but the seat is sinking down and on amazon they $450  just 
for a new seat. i tried invacare chair but its not tall enough i'am 6'3  195. 
any ideas would be great, thanks Steve c6,7 quad  il 
  

On Thursday, May 19, 2016 6:25 AM, "wheelch...@aol.com" 
 wrote:


I could be mistaken, but I thought Guardian was acquired by Invacare.  Call 
Invacare Customer Service and ask if the cushion is available as a part.   Best 
Wishes    In a message dated 5/19/2016 4:56:34 A.M. Central Daylight Time, 
r.pra...@sbcglobal.net writes: 
  Im in a search for a rolling shower/commode chair  I found one called a 
Ezeelife aluminum shower chair. Im probally going with the 20 inch model with 
the 24 inch rear wheels for user mobility. Its blue and has a rigid plastic 
back approx. 18 inches high. Im a tall guy 6'2 so I really need a long seat, 
but the 17 inches might have to do. The price is running about 495.00 plus 
95.00 for the 24 inch rear wheels from Medical products Unlimited. The chair I 
have used for 15 years was a stainless steel Guardian with a custom seat  that 
was 18 inches wide by 20 inches deep. I was lucky to get that custom seat at 
the time. Does anyone have any shower chair suggestions or anything to add? I 
might call my case manager and see if she can call a place called adaptability 
and let me roll in there and see what old ones they could cobble up for me. It 
sucks when your shower chair springs a leak, lol. 
 Ron 





  

Re: [QUAD-L] Shower Chair

[RONALD L PRACHT]

That's COOL! ...looks indestructible. thanks for the link.
Ron 

On Thursday, May 19, 2016 7:29 AM, Fragile <swl...@gmail.com> wrote:
 

 Here are some that I've been tempted to try, a little on the pricey
side, but can be folded up into a suitcase.
https://goesanywhere.com/

On 5/19/16, RONALD L PRACHT <r.pra...@sbcglobal.net> wrote:
>  Im in a search for a rolling shower/commode chair  I found one called a
> Ezeelife aluminum shower chair. Im probally going with the 20 inch model
> with the 24 inch rear wheels for user mobility. Its blue and has a rigid
> plastic back approx. 18 inches high. Im a tall guy 6'2 so I really need a
> long seat, but the 17 inches might have to do. The price is running about
> 495.00 plus 95.00 for the 24 inch rear wheels from Medical products
> Unlimited. The chair I have used for 15 years was a stainless steel Guardian
> with a custom seat that was 18 inches wide by 20 inches deep. I was lucky to
> get that custom seat at the time. Does anyone have any shower chair
> suggestions or anything to add? I might call my case manager and see if she
> can call a place called adaptability and let me roll in there and see what
> old ones they could cobble up for me. It sucks when your shower chair
> springs a leak, lol.
> Ron



  

Re: [QUAD-L] Shower Chair

[RONALD L PRACHT]

I found a replacement Invacare seat for 95.00 plus shipping.Its a u shaped deal 
but only like 16 deep. I guess I could mount it a little forward to accomadate 
it being short. I like the cutout towards the back of chair for easier 
transfers.Or I could just take my existing cushion off the guardian chair and 
have my dad wrap it with grey nogahide and staple it on the bottom side of 
cushion to hold it. Hard to know what a person should do, but it has to work.
Ron 

On Thursday, May 19, 2016 8:15 AM, Danny Hearn  wrote:
 

 Ron, I'm on my 2nd Guardian shower chair nowI got my 1st  when I came home 
from rehab, then had to buy my 2nd one out of pocket from EBAY, They are Okay 
but seem to hold and leak some water from under the arm rests i think. I know 
you had that seat coated or fixed some years ago but don;t know if any place 
does that today, you can order replacement seats but i think most are just 
standard sizes. Good Luck, let us know what you end up going with.  Dan H** 

On Thursday, May 19, 2016 6:25 AM, "wheelch...@aol.com" 
 wrote:
 

  I could be mistaken, but I thought Guardian was acquired by Invacare.  Call 
Invacare Customer Service and ask if the cushion is available as a part. Best 
Wishes In a message dated 5/19/2016 4:56:34 A.M. Central Daylight Time, 
r.pra...@sbcglobal.net writes:
  Im in a search for a rolling shower/commode chair  I found one called a 
Ezeelife aluminum shower chair. Im probally going with the 20 inch model with 
the 24 inch rear wheels for user mobility. Its blue and has a rigid plastic 
back approx. 18 inches high. Im a tall guy 6'2 so I really need a long seat, 
but the 17 inches might have to do. The price is running about 495.00 plus 
95.00 for the 24 inch rear wheels from Medical products Unlimited. The chair I 
have used for 15 years was a stainless steel Guardian with a custom seat that 
was 18 inches wide by 20 inches deep. I was lucky to get that custom seat at 
the time. Does anyone have any shower chair suggestions or anything to add? I 
might call my case manager and see if she can call a place called adaptability 
and let me roll in there and see what old ones they could cobble up for me. It 
sucks when your shower chair springs a leak, lol. 
 Ron 


   

  

[QUAD-L] Help getting my shower chair seat dipped?

[RONALD L PRACHT]

 I have an older Guardian roll around shower chair. Im a big, tall guy so years 
ago I had the seat cushion custom made then dipped in a grey plastic coating. 
An organization called Adaptability actually had the cushion made for me. It 
tore a hole in it and is getting water inside and making the transfers hard. 
Does anyone on the list know a place where I can get a new cushion dipped/made? 
Im thinking if I mail them the one I have they can make it from that. Any ideas 
appreciated. I would buy a whole new mobile shower chair but im tall and 
getting a proper fit is hard..
Ron 

Re: [QUAD-L] A quadriplegic moves his hand thanks to a chip in his brain,

[RONALD L PRACHT]

I was going to go to craig hospital in Colorodo for my syrinx surgery. I had an 
appointment with dr. Scott Falci and everything seemed wonderful . Somehow they 
decided they wouldn't take my United Healthcare insurance and they wanted 
50,000 dollars to start out of my pocket, lol. I was so upset because my family 
thought that any old surgeon could work on a syrinx and that's far from the 
case. So I had to start pain meds and that has turned me into a less capable 
man. I often wonder what wouldof happened if I could of gotten my surgery. It 
was thought I would spend at least 17 days in the hospital.
Ron 

On Saturday, May 14, 2016 10:26 PM, Gail Holmes  wrote:
 

 What hospital were in for the shunt placement for syringomylia?
What went wrong?

Sent from my iPhone
On May 14, 2016, at 5:53 PM, Lori Michaelson  wrote:


I do not watch that show but I saw a little bit about it somewhere and, like 
Bobbie, I would never ever have that type of surgery done. After almost dying 
from the shunt placed in the occipital lobe of my brain for syringomyelia back 
in 1994... I won't even have another neurosurgeon touch my spinal cord unless I 
was on my deathbed.
~Lori
On Sat, May 14, 2016 at 2:01 PM, Bobbie Humphreys  
wrote:

No, I never have.I would never do that kind of surgery, ever!Bobbie 

Smile Everyday
On May 14, 2016, at 3:46 PM, Jim Lubin  wrote:


Do any of you watch The New Screen Savers?
https://youtu.be/PlQIBd6MMLE?t=6m15s







-- 
"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] Bowel Problems / Syrinx

[RONALD L PRACHT]

Ive never heard of a post traumatic syrinx causing bowell issues with a quad. 
Syrinxes are very complicated in their symptoms though. If you read about it, 
ore than likely it will confuse you.  Ron 

On Thursday, May 12, 2016 12:15 PM, nichole rohling 
 wrote:
 

 I was having issues last fall with having to 
call my caregiver to come and get me on my shower chair about 2 hrs after I 
would get in bed. I would have diarrhea or very loose stools.Dr. started me on 
a probiotic and it did help. Only had to call caregiver once from November to 
last Thursday. I had to call Thursday night, Sat, Sun and last night (I took 
lomotil Monday and didn’t have to call Mon or Tues)I called Craig’s nurse 
hotline and she gave me several possibilities as to what we need to 
check.Syrinx was 1 of them ad I have been having a very odd excruciating pain 
in my shoulder joints.Anyone with a syrinx experience bowel issues? Or anyone 
experience bowel issues like I am.We’ll be checking a number of other things 
too but just asking for others’ thoughts, experiences.  Nicki

  

Re: [QUAD-L] Question for everyone! Update on Nancy

[RONALD L PRACHT]

Its really troubling that a doctor cant properly organize getting a urine 
specimen back in a timely manner. I would feel like they were giving me the run 
around or not taking me seriously. Think about it...if a young mother 
brought her little daughter in to get a specimen checkeddo you think 
they would run her around? I would just go in and ask the doc to give me around 
of antibiotics then you could doctor yourself when need me.
Ron  

On Friday, May 6, 2016 8:22 PM, "wheelch...@aol.com"  
wrote:
 

 'There are a couple of OTC meds for UTI's.  Call your doctor's office and 
leave a message that if he doesn't get back to you in 12-24 hours, you will 
take several OTC meds .  This way, the ball is in HIS court. Best Wishes In a 
message dated 5/6/2016 4:42:37 P.M. Central Daylight Time, 
quadjkin...@gmail.com writes:
 Nothing but competence on their part something 
terrible. Hope you all feel better soon. And God bless!!!  
 On Fri, May 6, 2016 at 1:42 PM, Lori Michaelson  wrote:
 
  I have known Nancy for a couple of decades also and if you get this Nancy... 
you are definitely in my thoughts! Because of a sore I spent that many months 
in bed and then a total of, statistically speaking, 3 years in bed by only 
being able to get up 3 to 5 hours a day because it was a Stage III wound and 
any pressure or bumps or any type of "internal shearing" would open it back up. 
 I thank everyone else who has responded to my inquiry! starting this past 
Monday I began to be UTIs symptomatic and the pain has gotten worse. My doctors 
office keeps claiming they can't get the results from the laboratory or the 
home health agency who took the urine specimen over 3 weeks ago! I have been 
calling them every single week but they keep saying they can't find the 
results. My home health agency nurse who got the results finally had to call my 
doctor's office yesterday but now I need to wait for my doctors office to call 
me to get on an antibiotic of some type because my bladder pain and my flank 
pain is so very bad. No fever but I do not want it to get to that stage 
[systemic] which he could easily do if not treated. And here we are going into 
a weekend! 
 Incompetence is running rampant in this country. 
 ~Lori C4/5 complete quad, 36 1/2 years post Tucson Arizona   
 On Fri, May 6, 2016 at 5:54 AM,  wrote:
 
  Thanks for the update on Nancy.  I've known her since the early 90's when we 
would chat in AOL disAbility Chats.   Best Wishes    In a message dated 
5/5/2016 10:29:40 P.M. Central Daylight Time, daano...@gmail.com writes: 
 
 
|  
|  
|   
|  |  
| Nancy Davis Gillen | 8:06am May 5  |

 I'm feeling much better, but im going on 7 months in bed because of a sore. 
I'm going crazy! Please pass on to the quad list. Thanks for keeping me in your 
thoughts.  |

 |


 |
| View Conversation on Facebook
This message was sent to daanoo2...@yahoo.com. If you don't want to receive 
these emails from Facebook in the future, please unsubscribe.
Facebook, Inc., Attention: Community Support, Menlo Park, CA 94025 |

 |

Sent from my iPhone   
On Apr 30, 2016, at 4:33 PM, Lori Michaelson  wrote:

 
   Greetings my quad list friends and friends [since 1995 for me], 
 Sometimes after so much time goes by and either we are kept busy doing happy 
things or are stuck in bed with a wound... we often lose track of each other 
and exactly who is who and what is about that person. 
 I know we have lost one of the most wonderful contributors here [Dave Kelmer] 
and I believe that Bill Jenkins (in Florida) was the one who told us of his 
wishes. This was back in 2009. 
 Having said that, here is what I would like from each one of you to refresh my 
old lady mind.  I feel like I have aged a lifetime over the last 4 years after 
losing my husband and unable to live with family any longer. 
 * Name  
 * Age
 
 * Date of injury 
 * Town and state where you are from (unless you would just like to state the 
state you are living in). 
 * Are you a quad or a para? If you are a quad ... what level of injury are 
you?  
 * Complete or incomplete injury?  
 And any other information you would like to offer. Thanks a bunch in advance! 
 Best to you all! 
 Lori Michaelson - age 51. How did that happen?!?!!! C4/5 complete quad, 36 1/2 
years post. Unable to drive. 
 I can feed myself if prepared and placed in front of me. Food needs to be cut 
up if necessary. 
 Grew up in a small town in New York State and lived there for 36 years but 
after meeting my husband he got transferred a couple times which first took us 
to Virginia and then to Tucson Arizona. I was devastated with his unexpected 
passing at only 63 years old on June 11, 2012 and over 90% of me went with him. 
Went to live with sister and brother-in-law in northeastern Pennsylvania for 3 
years but, despite hiring morning and evening caregivers ... my sister 

Re: [QUAD-L] One Comment and Two Questions Needing Advice On

[RONALD L PRACHT]

All over the internet you can find things to keep coolthey have 
something sold called a Misty Mate they will mist water of you. I use the old 
trusty small spray bottle 3/4 filled with water, when I over heat, just spray 
your head and your golden. Always wear a hat and sunglasses as well, avoid 
prolonged direct sun. Quads kinda heat up in sun and at that point where you 
are over exerted its very hard to cool down. Stay in the shaded areas and use 
water to cool down every 20 mins, treat yourself like a radiator.
Ron 

On Thursday, May 5, 2016 9:02 PM, Carolyn Boyles  wrote:
 

  First, thanks to all of you. I have learned so much I didn't know since 
joining the loop. Second, both my husband and myself have medical conditions. 
We are on prescription medications. In the job he has just started he has to 
drive himself all over the state unlike his previous job where there was always 
an investigator with him. Also, we aren't getting any younger. We know it is 
possible that a situation might arise for either one of us where we have to 
call for an ambulance but might not be able to communicate what is the 
immediate concern, our medical histories, and what prescription drugs we are 
on. I know there are companies in the US that make a variety of products for 
this purpose. I have seen an ad for Road ID. We tried medic alert bracelets for 
just basic information, but they just don't hold up over time (but for that 
matter, neither have we:-)). I am looking for recommendations of 
products/services in the US for something we can carry with us to communicate 
necessary information. Third, before my injury, I sweated like a pig. Since the 
injury unless I'm about to go into autonomic dysreflexia, I don't sweat. I live 
in a hot, humid Southern state in the US. I am looking for recommendations on 
gear I can buy to keep me cool. I have a baseball cap that holds water in it, 
but it's not enough. Please advise. Thanks. Carolyn
  

  

Re: [QUAD-L] New spinal cord injury movie

[RONALD L PRACHT]

Everybody that lives as a quad has a different situation. The most important 
factor is a support system. Some of us have tons of support and some have very 
little. In any case we all still have life and we try to do the best we can 
with what we have left. The guy with the crushed legs is no different, he is 
doing the best with what he has. Life is for the living and we all are still 
among the living striving to make the best outcome we have. Is a blind person 
worse off than a quad? Is a person with aids better off than a para? Who really 
knows, we are just a group of quads here trying to help each other with one 
issue at a time. Ive had great times as a quad and horrible. At this moment Im 
in pain and trying not to take more pills than I need to. I did complete my 
power cycle this week and Im going to go on a big adventure this week 
regardless. Im trying to find good still as often as I can.
Ron  

On Sunday, May 1, 2016 10:26 PM, Joan Anglin  wrote:
 

 #yiv1646520249 #yiv1646520249 -- _filtered #yiv1646520249 {panose-1:2 4 5 3 5 
4 6 3 2 4;} _filtered #yiv1646520249 {font-family:Calibri;panose-1:2 15 5 2 2 2 
4 3 2 4;}#yiv1646520249 #yiv1646520249 p.yiv1646520249MsoNormal, #yiv1646520249 
li.yiv1646520249MsoNormal, #yiv1646520249 div.yiv1646520249MsoNormal 
{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;}#yiv1646520249 a:link, 
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span.yiv1646520249MsoHyperlinkFollowed 
{color:purple;text-decoration:underline;}#yiv1646520249 
p.yiv1646520249msonormal0, #yiv1646520249 li.yiv1646520249msonormal0, 
#yiv1646520249 div.yiv1646520249msonormal0 
{margin-right:0in;margin-left:0in;font-size:12.0pt;}#yiv1646520249 
span.yiv1646520249EmailStyle18 {color:windowtext;}#yiv1646520249 
.yiv1646520249MsoChpDefault {} _filtered #yiv1646520249 {margin:1.0in 1.0in 
1.0in 1.0in;}#yiv1646520249 div.yiv1646520249WordSection1 {}#yiv1646520249 I 
feel rather differently about living life as a quadriplegic.  None of us is 
able to know what other people do behind closed doors, nor do we know what 
pain, suffering, and agony other people go through.  I have a friend who I feel 
has it much more difficult than I do.  True, he has use of all of his limbs, 
and he can walk with the help of a walker.  Because of an injury to his legs 
where they were totally crushed, he is in constant pain which has not responded 
to any of the treatments.  He is only 35, was an agriculture teacher who was 
chosen as one of the state’s outstanding teachers.  He is no longer able to 
work, has four children who can’t understand what happened to daddy.  He tries 
so hard to keep involved in his children’s lives, be a great husband to his 
wife, but in recent months has lost over 60 pounds, cannot sleep more than an 
hour at a time.  He’s not a quadriplegic, but I will take my life over 
his.Would I choose to be a quadriplegic!  Absolutely not.  But im one, I hate 
many aspects of this life, but I have chosen to make the best of it.  I look up 
to all of you who have been quad so many many years, Bobbie, Nan, Lori, and too 
many others to name.  My 25 years has also been a roller-coaster, but I will 
choose to ride it as hard as I can rest of my life.Sorry, I’ll get off my 
soapbox now.  Joan  From: Lori Michaelson [mailto:lorilivin...@gmail.com] 
Sent: Sunday, May 01, 2016 2:19 PM
To: HOSNI AL-KHATIB ; quad-list 

Subject: Re: [QUAD-L] New spinal cord injury movie  I feel the same way that 
you do Hosni ... I just did not want to come out and say/sound cynical. I was 
married and my life was like that but I lost it on June 11, 2012 when my 
husband passed away. Yes, it is fiction so for able-bodied people... it gives 
them the wrong impression as to the real life of a quadriplegic. Things like 
this can and do happen but, for the most part, our problems are too much for 
others to take on.  On Sun, May 1, 2016 at 4:47 AM, HOSNI AL-KHATIB 
 wrote:
Hi My Friends  This Is Not The Real Life Of A Quadriplegic Person,It's All 
Fiction My Friends,Life Is So Hard For Us...What Can I Say,And I Don’t Want 
Fake Kindness And Sympathy Just Because I’m A Quadriplegic. GOD Bless You


  -- "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] New spinal cord injury movie

[RONALD L PRACHT]

The biggest thing people or the movies don't get is that not walking is the 
least of a paralyzed individuals problems and everybody isn't paralyzed from 
the waist down. Most also believe that people that can move their arms a little 
are not quads. The movie is fun to watch but doesn't show any of the 
nitty-gritty rubber glove work that's involved with quadriplegia and that's ok 
because very few would watch a real life quad movie. People don't want to know 
the truth.
Ron 

On Sunday, May 1, 2016 4:19 PM, Lori Michaelson  
wrote:
 

 I feel the same way that you do Hosni ... I just did not want to come out and 
say/sound cynical. I was married and my life was like that but I lost it on 
June 11, 2012 when my husband passed away. Yes, it is fiction so for 
able-bodied people... it gives them the wrong impression as to the real life of 
a quadriplegic. Things like this can and do happen but, for the most part, our 
problems are too much for others to take on.
On Sun, May 1, 2016 at 4:47 AM, HOSNI AL-KHATIB  
wrote:

Hi My Friends
This Is Not The Real Life Of A Quadriplegic Person,It's All Fiction My 
Friends,Life Is So Hard For Us...What Can I Say,And I Don’t Want Fake Kindness 
And Sympathy Just Because I’m A Quadriplegic.GOD Bless You



-- 
"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] New spinal cord injury movie

[RONALD L PRACHT]

Hey Hosni, how have you been doing man. I haven't heard from you in awhile.
Ron  

On Sunday, May 1, 2016 5:47 AM, HOSNI AL-KHATIB  
wrote:
 

 #yiv0914586217 #yiv0914586217 --.yiv0914586217hmmessage 
P{margin:0px;padding:0px;}#yiv0914586217 
body.yiv0914586217hmmessage{font-size:12pt;font-family:Calibri;}#yiv0914586217 
Hi My Friends
This Is Not The Real Life Of A Quadriplegic Person,It's All Fiction My 
Friends,Life Is So Hard For Us...What Can I Say,And I Don’t Want Fake Kindness 
And Sympathy Just Because I’m A Quadriplegic.GOD Bless You

  

Re: [QUAD-L] New spinal cord injury movie

[RONALD L PRACHT]

touching movie bobbie 

On Saturday, April 30, 2016 4:31 PM, Gmail  
wrote:
 

 https://m.youtube.com/watch?v=Eh993__rOxA
Check out this trailer of a new movie of a male high level quad.Bobbie 


Smile Everyday

  

Re: [QUAD-L] FIngerless gloves

[RONALD L PRACHT]

You can look at Wal-Mart in the workout section they have several different 
kinds. Ebay has hundreds of fingerless workout type gloves. Those are the 
cheapest places to pick them up, medical outlets charge more
ron 

On Friday, April 29, 2016 11:49 AM, "wheelch...@aol.com" 
 wrote:
 

 The cheap way is a regular pair of gloves.  Just remove the fingers and thumb 
shields on both gloves.  There are more than a dozen of companies that make 
fingerless gloves.  They make all kinds of gloves so you have to look a bit 
harder. Best Wishes In a message dated 4/29/2016 10:52:31 A.M. Central Daylight 
Time, ddh...@sbcglobal.net writes:
 Does anyone know of a site to buy some type of fingerless glove or pad for the 
top of ones hands? when I lean over or pick up things I have to hand on with 
top part of my hand for balance and the underside of my chair arms are cutting 
and tearing the skin up on top of my hands. ( nothing wrong with inside palm of 
hands only topside of hands )  Thanks for any idea's !  Dan H***


  

Re: [QUAD-L] 911 Emergency app tells rescuers HOW to find and save you at the touch of a button | Daily Mail Online

[RONALD L PRACHT]

Have any quads on the list let the fire department know they use a wheelchair 
and what bedroom they are in?
Ron 

On Wednesday, April 27, 2016 10:45 PM, Jim Lubin  wrote:
 

 
http://www.dailymail.co.uk/sciencetech/article-3023155/The-app-save-LIFE-Emergency-service-tells-rescuers-save-touch-button.html

https://www.rapidsos.com/


   

Re: [QUAD-L] Freezing, yet it's 90

[RONALD L PRACHT]

The hotter it is outside the more the air conditioner runs inside even if the 
thermostat is turned up a bit. The humidity lowers inside combined with the 
fact you are a quad is probally making you cold. Its hard to fight this because 
your movement is limited. If you have a fever chills would be worse, but you 
probally don't. I remember you telling us about this at other times.
Ron 

On Wednesday, April 27, 2016 10:04 PM, greg  wrote:
 

 I am just not sleeping. Tried everything. 
It's a few issues, not falling asleep, waking up every 10 minutes, Waking up at 
2am and not get getting back to sleep, etc. Lately it's feeling cold. It was 
really bad for awhile, but the last few months were better. Now it's back. Even 
if I fall asleep, I wake up uncontrollably shaking cold. But I know I'm not 
cold. I can feel he heat coming off my body. If I uncover, I get colder as the 
air touches me, but then I get better. After awhile I get cold again from bare 
arms. It's like I'm overheating and it makes me feel shaky cold. I'm talking 
can't drive my chair I'm so shaky and tight. Though I know I'm not cold, the 
only thing that helps is going out in the sun. Now the uncontrollable shaking 
is in the day too. But from the Air Conditioning. It not fair to everyone else 
to let it get too hot inside. But even if I set it at 82/83, when it comes on 
it blows just as cold. The hotter it is outside, the warmer I dress inside. 
It's just worse than normal. Maybe I'll go get a UTI test tomorrow. Greg

  

Re: [QUAD-L] just another day in quadadise

[RONALD L PRACHT]

I tried as hard as I could yesterday to get the power handcycle (rio dragonfly) 
adjusted, hooked up and running but failed in my attempt. My manual chair 
(Quickie 2) has leg rests that stick out pretty far and the drive wheels 
plastic mud guard was getting caught on the legrests footplate. I had to abort 
the mission and I got a mini saw and cut the mud guard off. I read the 
directions through again and next time I find a person to assist my chances 
will improve on getting my first drive completed. Its going to work but I want 
it to be right. Once I get it all adjusted I should be able to attach and 
detach myself. So, I will keep you guys informed and take a pic when Im done 
with it attached. 
Ron 

On Saturday, April 23, 2016 10:01 PM, Joan Anglin <poaj...@sbcglobal.net> 
wrote:
 

 #yiv3058961832 #yiv3058961832 -- _filtered #yiv3058961832 
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{}#yiv3058961832  It is frustrating to make plans on and then waits and nothing 
happens, but people’s lives are busy too and I’m always grateful when someone 
does take the time to help me, even if it’s their time frame and not mine. Ron, 
I hope you have a good time with the Rio, I will be jealous but hope that you 
can enjoy it soon.  Joan   From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Friday, April 22, 2016 9:37 AM
To: RONALD L PRACHT <r.pra...@sbcglobal.net>; Quad-list Post 
<quad-list@eskimo.com>
Subject: Re: [QUAD-L] just another day in quadadise  Glad you got it Ron, you 
are right about trying to not get mad or hold resentments towards people 
because all that does it harms the one holding that stuff inside...On other 
hand though if a person tells you they will come in one of the next 3 days it 
is a shame they can't at least call and let you know about it, could be he just 
forgot or had other things of life come up on him. hope  you get it going soon, 
let us know. Dan H**  On Thursday, April 21, 2016 10:49 PM, RONALD L PRACHT 
<r.pra...@sbcglobal.net> wrote:  Well peeps,    I get my rio dragonfly( 
attachable powered handcycle) from ebay last week and I was happy about 
potential fun I would have with it this spring/summer. This guy I know told me 
he would come and help me get it fitted either tues, wed or thurs of this week. 
in preparation I read the manual , put some of it together, charge battery and 
get it set up to make it easy as possible for when he comes. I wait all week 
and the guy never shows up or even calls me. I told myself that I wasn't going 
to get mad so I rigged the legs of the cycle on jack stands in my room and was 
able to adjust them to the right length by myself. Its all together now and 
adjusted as well as charged. If my mom will just hold the front of the bike, Im 
going to try to attach it tomorrow for the first time. I would have tried that 
myself but the front end has a spring that brings the wheel back to center when 
you turn and that needs adjustment I think. Somehow..someway Im going 
to get this thing going by hook or by crook. I guess anything you want bad 
enough you can figure out, but it sure is a big deal to do the simplest things 
as a quad.  Ron  

  

[QUAD-L] just another day in quadadise

[RONALD L PRACHT]

 Well peeps,    I get my rio dragonfly( attachable powered handcycle) from ebay 
last week and I was happy about potential fun I would have with it this 
spring/summer. This guy I know told me he would come and help me get it fitted 
either tues, wed or thurs of this week. in preparation I read the manual , put 
some of it together, charge battery and get it set up to make it easy as 
possible for when he comes. I wait all week and the guy never shows up or even 
calls me. I told myself that I wasn't going to get mad so I rigged the legs of 
the cycle on jack stands in my room and was able to adjust them to the right 
length by myself. Its all together now and adjusted as well as charged. If my 
mom will just hold the front of the bike, Im going to try to attach it tomorrow 
for the first time. I would have tried that myself but the front end has a 
spring that brings the wheel back to center when you turn and that needs 
adjustment I think. Somehow..someway Im going to get this thing going 
by hook or by crook. I guess anything you want bad enough you can figure out, 
but it sure is a big deal to do the simplest things as a quad.
Ron

Re: [QUAD-L] 43 years today

[RONALD L PRACHT]

Both you ladies are amazing! I know Ive fought to hard and burned the candle to 
much to make it to 40 years post. I doubt I will get 30 yrs post b4 im gone. 
Big accomplishment you guys have made. 

On Wednesday, April 20, 2016 9:03 PM, "daano...@gmail.com" 
 wrote:
 

 Graduations Bobbie! We are so close in years paralyzed. It will be 42 years 
for me on July 26. Sometimes it seems like a century. LOL I know you have had 
many struggles with skin breakdown and I I hope they are OK. Thank you for 
everything you share about your life.
Dana 41 years, C4-5

Sent from my iPhone

> On Apr 17, 2016, at 2:09 PM, Gmail  wrote:
> 
> 
> Today marks 43 years since I had my accident.
> Wow, dose time fly.
> I've been so lucky for family and friends support and am greatfull for the 
> opportunity to experience the many events in the past 43 years that I almost 
> didn't survive to experience.
> I forgive the person who helped me to learn how to ride the motorcycle and 
> I'll never forget the friends that stood by my side through out the years.
> Bobbie 
> Smile Everyday


  

Re: [QUAD-L] New mobility device

[RONALD L PRACHT]

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 <ddh...@sbcglobal.net> 
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 
<r.pra...@sbcglobal.net> 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

   

  

[QUAD-L] New mobility device

[RONALD L PRACHT]

 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] Lower extremity edema in feet and ankles

[RONALD L PRACHT]

I wish I could show you the exact style to get. Mine have stretched out and 
formed to my swollen feet and they are fairly easy to get on. My feet look good 
at the end of the day in them, no sores or problems and I trust them. I bought 
three pairs one white, yellow and red. The tongue of the shoe is factory sewn 
so you down have to pull the tongue out . the ones I have even have little pull 
tabs that a finger can go through to pull them on. They are made for 
triathletes, so they have a lot of breathing holes, which helps. I could send 
you a pic of my feet in them or send you a link to the exact style that works 
the best.
Ron  

On Sunday, April 17, 2016 7:04 PM, Lori Michaelson <lorilivin...@gmail.com> 
wrote:
 

 Ok, I found the nike kukini's but I was wondering what your feet are like at 
the end of the day after being in them all day?
~Lori 
On Sun, Apr 17, 2016 at 5:33 PM, RONALD L PRACHT <r.pra...@sbcglobal.net> wrote:

Well Lori, the reason is lack of movement. When I swam just twice a week my 
feet were in decent shape. Four years later and Im barely able to cram a shoe 
on. Im told the only way to fight it is with passive movement, like in some 
sort of lower exercise for like 20 mins at a time. I found a stretchable shoe 
called nike kukini that's very forgiving. Its upsetting to see yourself swell .
Ron 

On Sunday, April 17, 2016 4:23 PM, Lori Michaelson <lorilivin...@gmail.com> 
wrote:
 

 Yes Dianna, 
I know exactly what you are talking about. Many people who are in the hospital 
for a longer period of time often wear them. Just one more hassle for me and 
then when I get up in my chair, because of gravity, it all starts over again. I 
would not want to wear them while in my chair since they need to be plugged in 
[if I remember right]. So why they are doing this [or have been doing this for 
such a long long long time] I have no idea.
Thank you anyway!~Lori
On Sun, Apr 17, 2016 at 1:53 PM, <diannal...@aol.com> wrote:

always, more so in the summer. I found some foot jewelry online that gives the 
appearance of sandalsbetter than bare feet. now for the medical advice. my 
wound doctor had me approved for special compression pumps. I will have to 
research the name of these but an hour in the morning and night you zip them on 
your legs. from ankle to above the knee. it reduces by pumping air in and out. 
i'll get back with you.dianna


-Original Message-
From: Lori Michaelson <lorilivin...@gmail.com>
To: quad-list <quad-list@eskimo.com>
Sent: Sun, Apr 17, 2016 2:08 pm
Subject: [QUAD-L] Lower extremity edema in feet and ankles

I was wondering if any of you have had to deal with lower extremity edema 
whereby you can't even wear tennis shoes/sneakers or anything but sandals that 
stay open and there is only a Velcro strap that allows the top of the sandals 
to close or buckled straps to allow for the stretching/lower extremity edema in 
my feet?
This began with me probably 3-4 years after I began to work and was in the 
chair by 8 AM and did not lay down until 8 PM or 9 PM on weekdays.
But it has gotten much worse since then and then in 1998 I had to stop wearing 
shoes or tennis shoes/sneakers and resort to what I spoke about above.
The only thing that helps it is me laying flat with my feet straight up and 
down against a pillow whereby my lower extremities are equal to my heart. In 
other words, they go down overnight but not always.
Yes, I will wear compression stockings and did so before moving to Arizona in 
the summer of 2001. I wore Jobst stockings for the first couple of years after 
moving away from the humidity of the Northeast but I eventually did not need 
them. When I moved back to the Northeast to be with family after losing my 
husband my lower extremities became worse so I thought when I moved back here 
they would get better but nope!
Yes, I tilt back my chair several times a day because that is all I have time 
for and I am not up in my chair all that long anyway.
Now, I do not have any heart problems or anything. It is all because of gravity.
I very much wish I could go back to wearing sneakers but even with my 
compression stockings... my feet and ankles swell and I can't risk any skin 
breakdown.
Best,
~LoriC4/5 complete quad, 36 1/2 years postTucson Arizona

-- 
"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] Lower extremity edema in feet and ankles

[RONALD L PRACHT]

Well Lori, the reason is lack of movement. When I swam just twice a week my 
feet were in decent shape. Four years later and Im barely able to cram a shoe 
on. Im told the only way to fight it is with passive movement, like in some 
sort of lower exercise for like 20 mins at a time. I found a stretchable shoe 
called nike kukini that's very forgiving. Its upsetting to see yourself swell .
Ron 

On Sunday, April 17, 2016 4:23 PM, Lori Michaelson  
wrote:
 

 Yes Dianna, 
I know exactly what you are talking about. Many people who are in the hospital 
for a longer period of time often wear them. Just one more hassle for me and 
then when I get up in my chair, because of gravity, it all starts over again. I 
would not want to wear them while in my chair since they need to be plugged in 
[if I remember right]. So why they are doing this [or have been doing this for 
such a long long long time] I have no idea.
Thank you anyway!~Lori
On Sun, Apr 17, 2016 at 1:53 PM,  wrote:

always, more so in the summer. I found some foot jewelry online that gives the 
appearance of sandalsbetter than bare feet. now for the medical advice. my 
wound doctor had me approved for special compression pumps. I will have to 
research the name of these but an hour in the morning and night you zip them on 
your legs. from ankle to above the knee. it reduces by pumping air in and out. 
i'll get back with you.dianna


-Original Message-
From: Lori Michaelson 
To: quad-list 
Sent: Sun, Apr 17, 2016 2:08 pm
Subject: [QUAD-L] Lower extremity edema in feet and ankles

I was wondering if any of you have had to deal with lower extremity edema 
whereby you can't even wear tennis shoes/sneakers or anything but sandals that 
stay open and there is only a Velcro strap that allows the top of the sandals 
to close or buckled straps to allow for the stretching/lower extremity edema in 
my feet?
This began with me probably 3-4 years after I began to work and was in the 
chair by 8 AM and did not lay down until 8 PM or 9 PM on weekdays.
But it has gotten much worse since then and then in 1998 I had to stop wearing 
shoes or tennis shoes/sneakers and resort to what I spoke about above.
The only thing that helps it is me laying flat with my feet straight up and 
down against a pillow whereby my lower extremities are equal to my heart. In 
other words, they go down overnight but not always.
Yes, I will wear compression stockings and did so before moving to Arizona in 
the summer of 2001. I wore Jobst stockings for the first couple of years after 
moving away from the humidity of the Northeast but I eventually did not need 
them. When I moved back to the Northeast to be with family after losing my 
husband my lower extremities became worse so I thought when I moved back here 
they would get better but nope!
Yes, I tilt back my chair several times a day because that is all I have time 
for and I am not up in my chair all that long anyway.
Now, I do not have any heart problems or anything. It is all because of gravity.
I very much wish I could go back to wearing sneakers but even with my 
compression stockings... my feet and ankles swell and I can't risk any skin 
breakdown.
Best,
~LoriC4/5 complete quad, 36 1/2 years postTucson Arizona

-- 
"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: Fwd: [QUAD-L] knee pillow

[RONALD L PRACHT]

For awhile I took a little pillow and rigged some Velcro straps on it to hold 
it on my right leg. I sleep on left side,so I would gently set the pillow on my 
left knee. Now that my stomach is bigger is holds me further on my side and I 
can take the right leg and lay it beside the other leg.
Ron 

On Friday, April 15, 2016 3:31 PM, Bryce Willis  
wrote:
 

 I do. I developed a pretty substantial sore on the inside of my right knee. I 
sleep on my left side. I put a pillow between my knees every night, but the 
pressure was apparently still too much. The divider has helped tremendously so 
far. My knee is held in the air and is finally starting to heal a bit. I am not 
familiar with the folding variety. I highly recommend the standard one though. 
Got it on Amazonof course. (Amazon has a hugely big large humongous 
warehouse about a mile up the road. UPS plant is at the end of my street.) 
Conspiracy? Hm... Remember, first it was Roebuck..and I haven't seen 
Mr.Sears in years! Beware, peeps.

Sent from my iPad
Begin forwarded message:


Resent-From: quad-list@eskimo.com
From: Derrick 
Date: April 15, 2016 at 2:00:39 PM EDT
To: quad-list@eskimo.com
Subject: [QUAD-L] knee pillow



Does anyone use a knee pillow to keep knees from touching while keeping hip 
aligned when you sleep on yourside?
Allgero Medical has one that unfolds to keep feet from touching bed. Then there 
is a dozen on Amazon.

I wonder if the pillows that unfold for feet slide apart or come undone.
So, is best to get a pillow for each purpose?
Thanks,
Derrick
i got hip pain and need to keep hip aligned while sleeping on side. I sleep on 
back 97% of time but I would do more if I can keep hip from not hurting.




   

Re: Fwd: [QUAD-L] Just a question and a statement

[RONALD L PRACHT]

She has to dwell on survival until living gets to a point where she can breath. 
Lori is one of the smartest quads on the list and I have no doubt she will 
handle this. God cant help a stopped train, as long as you keep pushing you 
will reach the next stage of life. My offer to Lori or any person in here. I 
have a fair share of knowledge and will talk to anyone in need on the list. 
Maybe I cant do more than listen, but we should be helping each other more. 
After 7pm my minutes are free.
Ron 

On Sunday, April 10, 2016 6:48 PM, Larry Willis  
wrote:
 

 Lori, your post just leaves me speechless. My heart goes out to you. Sometimes 
life, especially quad life, seems more than the human spirit can handle. It may 
sound trite, but turn your heart toward God and hold fast to His promise. Above 
all, don't despair. Please don't dwell on all the negatives in your life. It 
will bring you down like a rock. Try to stay positive. You are in my thoughts 
and prayers. God bless.

-- Forwarded message --
From: Lori Michaelson 
Date: Sunday, April 10, 2016
Subject: [QUAD-L] Just a question and a statement
To: quad-list 


I have been lost without my beloved husband who was absolutely everything for 
me. My primary caregiver [while hiring morning caregivers and teenagers to 
clean for us], a computer software/hardware engineer who used to work for NASA, 
a photographer, a genealogist, a mathematician and statistician, pretty much my 
doctor without being able to write prescriptions for me because he went to 
medical school and worked in the medical field for several years before getting 
his degree in mathematics because of the time he was going to medical school 
there was reversed discrimination going at the time - colleges taking "persons 
of color" to meet their quota over white/Caucasian Americans.
I had everything on June 10, 2012 and the next day, after a cardiac arrest and 
unable to revive, I lost all of that and more. We shared our love for Golden 
retrievers and we used to love to do things together both indoors and out. 
I was doing better when I was able to live with family until they wanted me to 
"move on" and I have fallen apart since.
After moving back here is unaware my husband and I lived for 11 years and 
whereby the weather and the accessibility is awesome but I had no idea that, 
over the last couple years, primary care physicians are not taking patients who 
are on pain medications and Medicare certified home health agencies are being 
discriminatory when it comes to a quadriplegic if they're only insurance is 
Medicare.
I began to have my symptoms of a UTI last Thursday and need to get a urine 
specimen to be set out for culture and sensitivity. My husband used to purchase 
the urinary test strips to, every once in a while, and just for the hell of it 
and for curiosity get the results for my urobilinogen, glucose, ketones, 
bilirubin, protein, nitrate, pH level, blood, specific gravity and leukocytes. 
He could read those test strips because he used to be a cheap slap technician 
and did not for a living so I knew how long to wait for each and every result 
for each of those things (less than 30 seconds however). He could not do a 
culture and sensitivity because, obviously, we did not have the laboratory with 
 laboratory, the slides, the petri dishes and everything else required. 
After his passing, I began to have more non-systemic UTIs. This is probably 
because different people begin to do my bowel regimen and even though they were 
as clean as possible... I knew my husband would do a better job and making sure 
I was clean down there. That was clear since I did not have any non-systemic 
UTIs prior to his passing. 
I now feel so alone whereby I feel that my family could have "shared the care" 
but they wouldn't and I have so very little family left (2 much older sisters 
and 2 nieces).
After moving to Arizona the first nurse who changed my catheter insulated the 
balloon inside my urethra and I discovered this after she left and it was left 
in my urethra for a good 45 minutes before she could get back and I am 
suffering from the consequences of that even now. I have had spontaneously 
urinary leaking around the catheter. My urologist (who is familiar with there 
are neurogenic bladders) is at a loss as to what to do except for to increase 
my oxybutynin (which she did do the maximum dose) but it has not solved the 
problem completely. 
She offered to increase the size of my catheter but there are pros and cons to 
that. A bigger size Foley catheter will stretch my urethra even further. Yeah, 
I know, I could go with a suprapubic catheter but I have never had any problems 
before that nurse did that to me and since my urologist has been in my bladder 
twice to remove stones (the last one was in late 2012) she says my bladder 
looks like a bladder that has never had a catheter in it - it looks 

Re: [QUAD-L] A free van

[RONALD L PRACHT]

Simple. Either keep it, which is probally far fetched to keep 2 mobility vans 
going and parked or sell it to a person who needs it. I sold one on ebay and 
got good money or you can try your hand at craigslist, but without a title its 
not much good..you need that.
Ron 

On Thursday, April 7, 2016 2:46 PM, Gmail  
wrote:
 

 A man who lived in my apartment building passed away 4/1 Ken had MD he was 52
His family knew we were close and Pete helped him a lot.
Today they offered to give his van to me for free!
It's a full size 1999 Ford E 150 with very low mileage because he couldn't 
drive, only his AIDS or family drove his van.
My question is what should and shouldn't I do in this situation?
I do want to look into donating the van.
The family can't find the title so their going to DMV to get the paper work.
Right now my van is in the shop till mid May until a new custom gas tank is 
built in CA
Bobbie 

Smile Everyday

   

Re: [QUAD-L] a question

[RONALD L PRACHT]

Ive read all about people that have a sexual desire to be with a disabled 
individual, be disabled themselves or have a certain disabled fetish like 
crippled feet or legs. Ive had men come on to me for that reason, women pretend 
to be disabled and phone me. There are paralyzed girls online that make a 
living doing videos for these crazy people. I say give them what they want and 
cut out there spines and give it to people that really want their normal life 
back, lol.
Ron 

On Wednesday, April 6, 2016 1:17 PM, "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.diannawheelchair wanna be'ssomething to that sort.


-Original Message-
From: Robert Vogel 
To: Larry Willis 
Cc: quad-list 
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  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] Re: Shoulder Replacement Surgery?

[RONALD L PRACHT]

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] itching

[RONALD L PRACHT]

Some people say that opioids cause pretty bad scalp itch
Ron 

On Friday, March 18, 2016 2:03 PM, greg  wrote:
 

 I thought I had my head 
itching under control, but the coconut oil topped working. I finely went to a 
Dermatologist. About scalp itching and a mole nerve. Can't do much about the 
mole nerve. I need to see a Neurologist, about maybe killing the nerve.She gave 
me a bottle of Tarsum, you put it on before you shower, let set. Over The 
Counter, but you have to get the pharmacy to order it usually. Hopefully it 
helps,Greg

   

Re: [QUAD-L] MRIs

[RONALD L PRACHT]

What I do with appointments now is I have THEM write the appointment on their 
sheet and give it to me. Then I bring the sheet on my clipboard and if there is 
any confusion I hand them the conformation they wrote. Either this method or 
appointment conformation is the way to go because its a full day of preparation 
for a quad to attend an appointment.
Ron 

On Thursday, February 11, 2016 5:01 PM, greg  wrote:
 

 Just had a couple MRIs 
and X-raysI showed up Tues early morning, and they tell me it's not until 
Thurs. But they called Mon to confirm it. But it's done. I hope they find 
something. But nothing too bad,I hate those MR I machines. I find if you tip 
your head back just a bit, you can usually see out the back end a little. Not 
so cloustrophobic. For the first time they gave me glasses with a mirror angled 
45 degrees. So I could see out the bottom into a window they were behind. 
Helped quite a bit.Greg

   

Re: [QUAD-L] Imitations

[RONALD L PRACHT]

It would really depend on the situation how I would perceive a person imitating 
me. A gf or mother could get away with a lot, in your case a bro is ok, but a 
stranger doing that could upset me. I can say Ive had people imitate how I push 
my chair and gfs being funny. A guess its all in the situation..Ron another day 
in quadadise.I saw this really inventive quad today on youtube called 
cripple concepts .
 

On Thursday, February 11, 2016 10:18 PM, Gmail  
wrote:
 

 Has anybody ever had someone imitate you as a quad?
Like, I wave to my brother and he waves back with his hand in a fist.
Pete inmates how I hold a mug and drink or working a remote for TV.
I always end up laughing so hard I cry.
Bobbie 


Smile Everyday