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ShiftKicker

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Joined
Mar 16, 2015
Messages
8,345
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I have been under pressure from 2 different occupational therapists, an internist and a physio to get wheels. However I also have one doctor who thinks it's sort of a blanket recommendation and doesn't think it's appropriate for me at this time.

I am still mobile on my own (though slow), have only fallen a couple of times (the dogs have learned their lesson) and still have pretty good balance. My issue is leg fatigue with any sort of exertion, tachycardia and heavier breathing with ANY effort including sitting up straight, and a deep and chronic whole body fatigue. My core is losing strength and I end up hunching over more and more as my day goes by. Walking poles, crutches and canes do not seem to mitigate any symptom- they actually contribute to my fatigue because of hand and arm spasticity and lack of coordination.

For those who moved to using wheels even though they were still independantly mobile, what was it that convinced you to do so?

many thanks
 
I have no idea what justifies getting the pwc but it does take a while. I have been working on getting one for my PALS since Jan. 2nd and it still isn't ordered. UGH!
 
I am sorry you are going through this. I am not there yet but it sounds like a chair with the ability to recline would contribute greatly to your comfort. It certainly did for my sister

Other than that conserving strength goes a long way.

It sounds like you are having enough respiratory issues ( heavy breathing and tachycardia) that that too would be a reason in and of itself.

I am sure Steve will be along soon to talk about the benefit he has found

Hollister has a saying too , something about sitting early and said she felt it helped preserve safety and function.

I know it is a hard pill to swallow as you are an athlete but it sounds as if the wise and proactive thing is to go with it. You do not have to use it full time if you are safe and comfortable out of it
 
I got the wheels because sheer exhaustion was stopping me doing things I wanted to do. I carried on walking around at home and in the garden for as long as I could. But for going out shopping, to the park, to a show in London my tiredness and slowness was ruining the experience.

Getting the power chair was liberating I didn't have to rely on other people and could conserve my energy for enjoying myself. So the decision was about quality of life being more important than hanging on to walking by myself.

Wendy
 
I was convinced when I started having trouble walking any distance over a hundred yards. I actually started in a manual chair from Craigslist that was very cheap but served it's purpose very well. It was always on hand when I needed it, it was compact making it easy to travel with, plus it was a blast to ride in. Still having good arm strength I could manage it by myself, I could wheelie that thing all day long, jump curbs, etc.

I'm not sure why so many people resist a chair until it is an absolute necessity. I firmly believe that getting a chair early on helped my legs last a bit longer and allowed me to still be a big part of my family's life for much longer.

If you are asking the question of when the answer is now. Your first chair doesn't have to be the one you will spend the rest of your life in. Check with local loaner closet, they will have something for you to try. DO NOT FEAR THE CHAIR It will be your friend.
 
"have only fallen a couple of times"

'Nuff said.

I know there is a psychological component, an independent attitude that says "I'll do without a chair as long as I can."

So it's your choice, of course, but I don't wanna hear it when you break yer face, ya know? :)
 
I think when you are falling using whatever assistance you use, its time to take it up a notch. If you fall with a cane, go for the walker (unless you are new to the cane and IT trips you, which happens!) if you fall with the walker, go to the chair. Or of course when as was Wendy's experience the pure exhaustion of walking is just to much.

Back in my healthcare days, I saw many people who did not want to get into that wheelchair (from non ALS issues like MS or just plain being, you know 98 years old with multiple issues) yet when they did talked about having so much more comfort and freedom.
 
I'm not sure how long it takes to get a chair in Canada, but here it takes awhile. I'm glad I listened to others on the forum and started the process in January. I still don't have it but I have a loaner. I can still walk but if I want to go somewhere crowded or where I might have to walk fast, I'll use it.

I've had a hard time psychologically coming to terms with it but seeing how Steve lives his life, with his chair as a helper, really changed my attitude.
 
HN said it all -- if you're asking, time to get the ball rolling. Better to ease into it now than have to rush into it later.

Best,
Laurie
 
If you have fallen, it's time. If fatigue is an issue, it's time. And hey, you are slowing every one down. Having a chair has made my world a lot bigger because not only can I travel farther, but when I get where I'm going I still have energy to do something. Get the chair, you will not regret it.
Vincent
 
I have a combo walker-wheelchair:

Airgo� Fusion� Side-Folding Rollator & Transport Chair

I mostly use it as a walker, but if there is a long run from parking, etc. then my hubby will push me in it. It has filled a niche, but I am in the same boat - looking to transition to a PWC soon. This winter I have become mostly house-bound since I can't drive anymore.
 
Hey shiftkicker, a roller like you shouldn't worry about pwc ,their only just bigger wheels!
You should see me flying around the streets, I give all the kids rides and even let them steer it in slow gear.
I call myself an uber drive as my wife will ride on my lap as we cruise town ,lots of fun.
Only takes one fall to be a game changer don't think you want that
The chair makes the difference!
If you want to be active as Steve and I are you'll be wanting something that can really go.
I speak highly on " Frontier" v6. I think Steve has multiplies chairs and goes for pemmobils.
It has always been said to me " it's better to have it when ya need it then to need it and not have it" .
I have resisted,denied ,everything along the way but as I see my pattern of destruction to my body I can't argue any more and just go with the flow. Good luck to ya girl! Pick out some kick a$$ ride pimp it out some with stickers,bling etc. and make lemonade from them lemons.
Love ya. Chally
 
One fall is one to many. Getting wheels is not a bad thing. It will give more independence and safety.
Patrick
 
Wow! Thank you all so much for the feedback. I ran out of "thanks".

With regards to falls- entirely my fault both times, and it was quite some time ago. I no longer step over dogs in the hallway or on the landing- I just tell them to move. They've made up for standing up just as I was stepping over them since by walking right by my side and providing stability.

My issue with the chair is not so much resistance because I don't want to accept disability, but more feeling like an impostor. "It's not that bad" is frequently what I say. I can still walk, just slower. While it has been recommended by a variety of different professionals, they might be evaluating with a different set of criteria. And yes, I'm fully aware my logic is not logical at all as I sit here and write it out.

Vincent, chally and Mike- your tough love is much appreciated. Vincent, nothing is more guaranteed to make me start locking up than thinking I'm slowing people down.

I will be avidly reading all of Steve's many posts about his experiences with his souped up wheels.

Thanks again
 
Wheels are good, broken bones and broken faces are not
Al
 
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