How Many Wheelchair Users?
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April 19, 2007 at 12:54 pm
I am just curious how many other people on this forum rely on wheelchairs, weather manual or electric?
My onset was in July 2006 and I can walk around my house with a cane but otherwise use a wheelchair to get around. I still go to rehab 2x a week (just cut down from 3x a week this month). My lower body fatigues so much more quickly than my upper body which I find really weird but I guess all of this GBS stuff is really weird… I cant count the times I heard the docs say something was weird about me through this ordeal. I am actually starting to get active and have strength to load my own chair in/out of the vehicle and started playing sled hockey recently (hockey for disabled people who cant play regular standup hockey). I am planning to start canoing this year and sure my upper body still does fatigue but nothing like my lower body. I can walk with assistance and am just starting to learn to walk with a single end cane (I walk really goofy cause I need to keep my arm locked out and leaning against my hip for support, but who cares… at least I’m doing it) but anything beyond walking out to my truck from my house I get so fatigued I cant stand any longer. I cant walk into gas stations because I get too fatigued walking that far and then having to stand for a minute and walking all the way back is just something that I cant do (yet).
So anyways just wondering how many people around here use a type of wheelchair and how frequently (daily activities, unable to walk at all,etc)? And also how far you are past the onset.
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April 19, 2007 at 1:58 pm
Hello,
I am mostly dependant on a wheelchair since 1999, around the house and going out. I can do some walking with a walker, short distances and that includes going out, but am quite limited when trying a cane. I use a manual and stay in it more then I should or need to, but I am caregiver to my mother (who I live with) and must remain mobile. Another reason I stay in wheelchair is because there is no-one to fetch and carry for me, so must keep my hands free. -
April 19, 2007 at 2:51 pm
There are some of our members who will have to use wheelchairs for the rest of their lives because they cannot walk at all.
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April 19, 2007 at 3:59 pm
Right I understand that, my neuro expects me to have to use a wheelchair for the rest of my life because I cant walk for more than a few feet. I am just curious how many other GBS’ers are like that? Are we talking 50%, higher, lower, etc. Just trying to get an understanding on how different people have recovered so far.
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April 19, 2007 at 4:06 pm
for the most part i use a cane to get around-outside of the house and other places. for long distances, anything beyond 1 mile or whenever my legs turn to mush, or with stairs, inclines or declines i use a wheelchair. i like to push myself as far as possible before i yell uncle and use my wc though.:D my 1st paralysis event was Aug 05, and since then i have had a total of 5 inhouse stays and 6 at home events, but have not gotten back to my normal yet.:rolleyes: my pcp made a dx last week of cidp based upon my ncv/emg tests, and the fact that i’m nowhere near my normal self yet with all the residuals, relapses, fatigue and pain.
its nice to see you again Doby, how ya been? Welcome Back!
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April 19, 2007 at 4:26 pm
[QUOTE=angel2ndclass22699]
its nice to see you again Doby, how ya been? Welcome Back![/QUOTE]Thanks, I was getting frustrated with the site going down all the time so I stopped comming here for a while and decided to come back again in hopes that it was stable now.
Things are getting better but as you can see from this post I am nowhere near where the docs originally expected. Man if I could walk a mile that would be awsome, but I am lucky to get to my truck walking. Thats cool, I’m not paralyzed from head to toe anymore so I am grateful for what I have. 9 months post and the very slowed progress I realize this is what I will be pretty much stuck with, while still seeing some very slow progress but I make due. At least my upper body is comming back… nowhere near where it was pre-GBS but definatly better.
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April 19, 2007 at 5:22 pm
Hi: I am two years post-almost my anniversary-and can walk with a cane for a maximum of 10 minutes without great fatigue-I can make myself do it longer but am exhausted for days if I do; with a walker can go about 20-30 minutes tops and after that I use a wheel chair. Jeff
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April 19, 2007 at 7:43 pm
Diagnosed 5/2006 with GBS CIDP-7/2006 I have had 5 relaspes in this time with the last being the end of January. I just started getting some balence back. I mostly walk in the house with the walker but use a w/c when I leave the house. I still don’t have endurance to go the distance with a walker.
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April 19, 2007 at 9:43 pm
it has taken me quite awhile to work up to the 1 mile mark, i have to start over from the beginning after each paralysis event i have.:( . i walk alot slower then the older people i see walking, passing me like i’m standing still-including my parents, who i walk with. there are days when i can’t even go walking because of the fatigue or on my aqua therapy days(2). i just hate not being able to walk like i use to walk-non stop-for mile after mile.:( maybe someday!:) keep up the positive attitude, Doby.
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April 20, 2007 at 12:08 am
I have/had a severe case of CIDP & was strictly in a power chair for 2 1/2 years. The summer of 2004 I began walking with a AFOs & a walker (minimally), & graduated to a cane by fall. I still use my powerchair as a computer chair & to read the newspaper, as the back support is great. I don’t have any balance, so going for a walk, just to go for a walk, is out of the question. In stores with shopping carts I can actually walk quite awhile. But if I need to go long distances, I will always need a chair. After over 5 years now, I am as good as I will ever get.
I think that many of our past members who were still in wheelchairs have moved along & no longer come to the forum. Also, many with extensive damage to their lower bodies have limited use of their hands & typing is difficult for them. People come & go on this forum, especially those who had GBS & made a good recovery; they tend to move along with their busy lives. Or many of them never even feel the need to visit a forum.
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April 20, 2007 at 4:57 am
Hi,
Freezer here from New Zealand.I am 3 years and 9 months on from onset.
Finally got home after hospital and then 1 and half years in a rest Home(nowhere else for me to go)At 52 years old-I wanted out of there.Sadly one of the few able to leave whilst still in the land of the living (if you get my drift)
I am totally paralysed still – use my head to operate things and soon to take stock of electric wheelchair- this will allow me to be more independent.
Life is infinitely better at home- I have been fortunate enough to get to live in a brand new property designed for people with disabilities-it is a new concept being tried out here. One house -shared kitchen but separate units on either side of the kitchen.I manage well as I live here with my wife.
It is owned by Ryder Cheshire Foundation.
I still manage to enjoy life,I have had to adapt-use talking books ,listen to more music,operate computer with my head etc.No point in being down as this is how I am.
However I always have hope.
Regards,
Freezer:cool:
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April 22, 2007 at 10:51 pm
[COLOR=red]Stuck in a w/c forever![/COLOR]
[COLOR=#ff0000][/COLOR] -
April 23, 2007 at 12:50 am
I’ll always be in a chair too.I can use a walker to get to the other side of the room,but that’s about it.
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April 23, 2007 at 2:00 am
Nate is 16 mos out from severe GBS and he is still wheelchair dependent.
He does pt twice weekly and still cannot walk more than about 20 steps without his knees giving out.
He uses his wc everywhere, including the house.
I’m trying to motivate him to try walking around the house some with his walker.
He says he’s still apprehensive to try it much.
He only got his AFO 2 weeks ago, then got the flu for almost a week so he hasn’t been real mobile yet with it.
His AFO was a godsend though. Its a perfect fit and it keeps his ankle straight up. He will need a new one in 6 to 12 mos though to get his foot straighter and bring his heel down. They do that deformity in stages.
His leg muscles and knees are still not coming back too well right now and he has very little balance unless he’s hanging onto something like parallel bars or a walker.
Only time will tell if he ever gets them back well enough to walk without assistance.
In the meantime, he uses his wc to get where he needs.
Trudy, natesmom
Nate, GBS 1-06
Discharged 9-30-06 -
April 23, 2007 at 8:17 am
I can walk indoors and a littlebit around the house, but otherwise I am wheelchair dependent. I have a manual wheelchair, but I can’t use my arms so I have to be pushed. But I don’t like being pushed:D, so I also have a handicap or mobility scooter (as I think it is called in the US), with cruise control.
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April 23, 2007 at 12:38 pm
[QUOTE=Natesmom]Nate is 16 mos out from severe GBS and he is still wheelchair dependent.
He does pt twice weekly and still cannot walk more than about 20 steps without his knees giving out.
He uses his wc everywhere, including the house.
I’m trying to motivate him to try walking around the house some with his walker.
He says he’s still apprehensive to try it much.
He only got his AFO 2 weeks ago, then got the flu for almost a week so he hasn’t been real mobile yet with it.
His AFO was a godsend though. Its a perfect fit and it keeps his ankle straight up. He will need a new one in 6 to 12 mos though to get his foot straighter and bring his heel down. They do that deformity in stages.
His leg muscles and knees are still not coming back too well right now and he has very little balance unless he’s hanging onto something like parallel bars or a walker.
Only time will tell if he ever gets them back well enough to walk without assistance.
In the meantime, he uses his wc to get where he needs.
Trudy, natesmom
Nate, GBS 1-06
Discharged 9-30-06[/QUOTE]I can only go a few feet also, but I did find walking around the house the best thing. Its important to walk as much as you can and the comfort of falling at home vs somewhere else is a bit of a motivation too. As my PT keeps telling me, people are more apt to try things at home than anywhere else. Once he get on better too, he may want to start experimenting with different shoes too. I have found a good pair of hightop tennis shoes that help with the foot drop so I dont need any AFOs so just a thought as he progresses that even if he does have some permanent foot drop, there are other options. I know of a guy who wore cowboy boots to prevent foot drop and another that wore work boots for the same thing. I am not suggesting he ditch the AFOs now but something to plant in is head anyways to give hope that even if he doesnt get over the foot drop he may not always need AFOs.
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April 23, 2007 at 2:03 pm
We got nate some really nice New Balance Athletic shoes a week or so ago and they work great with his AFO as long as we tighten the laces as much as is possible.
Otherwise they rub the top of his toes from his foot drop.
They hold his AFO and ankle very steady and he really likes the way it feels.
Now if I can just get him to walk more at home. If he would put his shoes on at home and not just his AFO, he could walk more. He’s like me in that though. He likes NO shoes.
I will tell him what you said about falling at home being better than out.
That one made me laugh cause its true. Nothing worse than a bunch of people either rushing to help or looking the other way cause they’re embarrassed.
Trudy -
April 23, 2007 at 2:50 pm
Welcome Freezer and glad you found us. Hope to get to know you better.
Jerimy
[quote=FREEZER]Hi,
Freezer here from New Zealand.I am 3 years and 9 months on from onset.
Finally got home after hospital and then 1 and half years in a rest Home(nowhere else for me to go)At 52 years old-I wanted out of there.Sadly one of the few able to leave whilst still in the land of the living (if you get my drift)
I am totally paralysed still – use my head to operate things and soon to take stock of electric wheelchair- this will allow me to be more independent.
Life is infinitely better at home- I have been fortunate enough to get to live in a brand new property designed for people with disabilities-it is a new concept being tried out here. One house -shared kitchen but separate units on either side of the kitchen.I manage well as I live here with my wife.
It is owned by Ryder Cheshire Foundation.
I still manage to enjoy life,I have had to adapt-use talking books ,listen to more music,operate computer with my head etc.No point in being down as this is how I am.
However I always have hope.
Regards,
Freezer:cool:[/quote]
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April 23, 2007 at 5:39 pm
Hi Doby,
You are an inspiration doing your very best to adapt and to continue to lead an active life.
When you mentioned trying to be able to load your wheelchair into your car by yourself, I remembered talking to my mother’s cousin who is 83. She told me that her nephew has just developed an invention that makes it easier to load a wheelchair into a car trunk. It’s in production, and that’s all of the details that I know right now.
I was excited to hear about this, because although I don’t use a chair myself, I know that so many of our “forum family” members do.
I have a device that I have that allows me to load my kayak onto the top of my vehicle by myself. It is a type of hydrolic lift assist, and works really well. I’m hoping the invention is something like this.
My mother’s cousin has promised to put me in touch with her nephew, so I can get more information. I’ll keep you posted when I know more.
Suzanne
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April 24, 2007 at 4:31 pm
Yeah there are a few different devices out there for loading a chair in if you dont have the stregth. I saw a few different ones at the local adaptive vehicle store. They range from lifts you sit on and load your chair in, to crane like items that can be run manually, electric and remote control to put the chair in the trunk, back seat, etc. My insurance bought me an ultralight chair so it is only about 20lbs. At first I couldnt lift it up but I have since regained enough upper body strength to lift it. I havent gained much of anything in the lower body so when I load it, I get into my truck first and then reach out to disassemble it like a paraplegic would from sitting in the vehicle.
I do have to wear a 4-point harness because I dont have enough back support to stay sitting upright in a vehicle but its all good, I am working with what I have and learning to deal. There are so many adaptive devices out there it is absolutely amazing. If a person has the resources to get out there and look around they will be amazed to see that they can do just about anything with adaptive methods and devices.
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April 24, 2007 at 8:10 pm
Hi, I have a power chair and a push type. Power for shopping and outdoor things, and push for shorter trips. I can walk some with a walker, but have alot of pain. Latest Dr. I saw thinks my feet are “shot”. Cant raise them at all. I love the power chair, I am 67 and really dont want to rishk anymore falls. I can hit the Malls and stores and leave hubby on the benches—girl watching!!! I have ruined alot of walls and doorways, but it gives me great independence I love Gene’s “bumper sticker”.
Thanks for being there, Regina -
April 25, 2007 at 10:29 am
Oh the pain, you said it. I get so caught up in being all about fatigue sometimes I almost forget to mention the pain that kicks in. I am strange in the fact that I can move my ankles but have problems with my knees and even more so my hips. I have L2-3 nerve root damage from spinal taps and those are the nerve roots that control the hips and knee functions. One ankle doesnt move correctly but the other does and when I start to get tired or sore (after a few feet) my feet start to pidgeon toe. But the pain still runs my entire leg, calves seem to get sore first for me, and of course the rest of the leg with quads, calves, knees, hips. It used to always be fatigue that was my limiting factor, now I find that the pain can be even more of a limiting factor that the fatigue some days.
I used to look at wheelchairs as big bulky industrial things but have since learned that you can get some light ones that can be a bit sleek and sexy looking too… they just cost more money!
Not good for everyone else that uses them, but I am glad to hear others that still do. It seems like everyone else I come across uses nothing to get around and for long walks relies on an assisted walking device such as cane, crutches, walker, etc. I was starting to feel along in that I needed to have a walking device no matter what for short walks and my wheelchair for anything beyond a few feet. There is definatly comfort in numbers!
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