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Bad Balance

Senior member
Joined
Dec 10, 2010
Messages
815
Reason
PALS
Diagnosis
12/2010
Country
US
State
GA
City
Atlanta
Been a while...

I have several questions for them:

- will exercise use up my remaining muscles or just help tone them?
- I still think I will get 5's on the strength tests, but I have zero stamina...just need some regular routine ?

My prescriber does not want to write any more scripts until my breathing is checked.
I see the wheel chair looming and I hate it.
 
It's natural to dread the wheelchair. But when my husband finally "gave in" and began spending his days in the chair, he found he had more freedom to go where he wanted to and much more stamina. Of course it's just another milestone in the progression and that makes it very hard, but perhaps you'll regain some energy. --Diane
 
Try looking at the PWC as a means to increased mobility and less fatigue
 
Don't fear the chair.............It does take a bit of getting used to but you will soon appreciate it. My progression started in my legs & now I've got zero use of them. I can push up to stand & transfer but unable to take a step. I started out in a cheap manual chair that I picked up on my own, just to get me longer distances outdoors when needed. My arms were still pretty strong so it wasn't much trouble wheeling myself around & since I was not in it full time it gave me some time to adjust to the wheelchair lifestyle. Now I've got the super deluxe PWC & it is a lifesaver for me. I'm basically either in the chair, on the couch, or in the bed. I still take the manual chair when we go out as it is so easy & light to transport, the PWC is a tank to take along. I'm looking for a wheelchair van now to transport the PWC.

One thing people say on here all the time is to always to plan ahead. They are absolutely right. I didn't listen........now I'm playing catchup trying to complete an accessible bathroom downstairs. I thought that I'd be walking a bit longer & be OK without the bath. I was wrong, I lost the ability to walk very quickly. Get yourself a chair now, look on Craigslist or Ebay, you can find something very cheap to get you started. You don't have to wait for the doctor to order it for you, if you are starting to think that you will need it........You do need it.
 
I'm waiting on my pwc still... wish I had it already. I had heard the "think ahead" mantra so long on here that I asked for it my very first clinic visit. Now I NEED it, and it's still not here! Very glad it's at least in the works! I went to Wal gre ens and bought a manual transport chair. There was no way I could wheel myself with the big wheel regular chairs, and they're hard to get in and out of the car, so if you're in the same boat arm-wise already, go for the transport chair. My mom, dad, or friends wheel me around all over town. I remember the first time I consented to using a wheelchair shopper at a store (the regular wheelchair that has a basket attached and goes over your lap). I felt like a moron. But then I realized we were able to shop for 2 hours instead of 15 minutes and I LOVED the wheelchair from then on. You'll never know til you just go for it!
 
I agree, you will love the freedom the wheelchair will give you... I have a gorgeous new pwc but still use my scooter most of the time around the house due to my rugs need to get removed (they're braided, and I need them to protect the hardwood floors from my dog's nails!)... The scooter is awesome, more portable than the pwc, but less comfortable. I went to the flea market today for the first time in a couple of years and had a great time.

Word of caution; do not have insurance buy your manual wheelchair, they may then give you a hard time with a pwc.
 
I must say that if it wasn't for my scooter, I'd never be able to go anywhere. I choose to think of it as a means to let me get out and have a little fun. Falling and exhaustion from trying to stay walking sucks.

I didn't leave the house for months when my scooter died.

I hope you can find a positive in using one. PALS and falls are a bad mix!
 
Did you have your Clinic visit yet? How did it go?
 
Bad,

Please as someone said, Don't fear the chair. The alternative is where I have been since November 8. ICU/hosp ital, nursi ng home and now in a dun geon. My first order went in a few days after the 8. Bickering back and forth between nur sing home (their coverage) and my ins ur ance not wanting to pay while I was there, left me stuck in a bed for almost 8 months. Even after all that, I still had problems with approvals. I finally asked for a manager and it was settled in 24 hours. It should be here in 3-4 weeks. So please, start that process now. I have missed out on a good 4-6 months that I could have been mobile.

But that will all be behind me, when I let those tires burn rubber.
 
My clinic visit is scheduled for the 27th.

I appreciate the support. As long as it is possible, I will get around with a cane.
 
I see you are in Atlanta, I am sure they have a local ALS organiztion there. A representative from the local ALS organization in Nashville came to my home for a visit. She offered to loan us both a wheel chair and/or a power chair. Of course having one that is tailored specifically to you is most desirable, but your local ALS may have loaners also if you need something temporarily while you shop around.......cheers.....fp
 
I agree about the wheelchair, been sitting in mine a little over a year now, not the best but better than laying in bed. When you decide to get yours be sure and plan ahead most insurances and of course Medicare will only provide once every five years. What you buy has to stay with you without any upgrades. Your physician should be able to write a script that requires you to have the best available. For me, Promobile C 300, don't settle for less.

As for your visit to the clinic, in a notebook write down any and all questions. Leave space between each question so that you can write and the answer. Keep a log. I know you think that you will be able to ask the questions but in all the excitement, new surroundings, new people, you cannot remember the questions until after your experience. On the way home you will remember all the questions you wished you had asked. I was the same way each and every time I went to the clinic, not just the first time. It is too much to take in especially since this is your first experience. This is new to you and will keep you in awe.
 
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