Re: progression & wheelchairs

[Guest guest]

Ruth,

The best advice I can give you when it comes to a power wheel chair

is take it slow. Keep the speed low for a while until you can get

used to the feel of it. As you grow accustumed to the feel you can

gradually raise the speed. Always remember to look behind you when

your backing up. And warn others if your close to them so you don't

run their toes over. (I've dont it too many times to count).

Bumping into things is bound to happen whether you want it to or not. Be

patient. Driving gets better with time. The batteries will get you through all

of you days at home. Charge it every night. And when it comes to going places

always remember to scope your route out first in a car.

Make sure there are sidewalks all the way to your destination and ramps to get

across any street. It's going to me frustrating at times. There will end up

being some place you just can't go in your chair due to stairs or too tight

places. Just keep moving until you find something comparably or better. You'll

be fine and the adventures will begin as soon as you get out of the house with

your new chair. Good luck and God Bless!

Jane

[Guest guest]

Thank you Ruth and blessing to ya.....

Geri

[Guest guest]

Ah to be 76 and needing a wheel chair. You must have had a mild progression. I

am 30 and wonder if I should be in the chair every day. I try to use it only

for long distances but honestly I don't get around very fast or far anymore. I

really seem to be struggling lately.

Good for you. For as much as I hate my chair I hate missing life even more! I

agree with the others that it a opportunity to get around and LIVE.

Take care,

[Guest guest]

Hi all -

The viewpoints that you have all expressed regarding progression of

CMT and the use of wheelchairs has been wonderful! There are those

among us who abjectly refuse to believe that CMT patients may need

to use them on either a permanent basis or on an " as needed " basis.

My son, uses a manual chair to get around school because the campus

is large and he only has a few mintues to get from class to class.

He will be getting a new Power Assist chair this week which should

provide him with even more significant relief from his chronic

fatigue. He uses his chair for shopping expeditions, and anywhere

that he will be travelling long distances. He walks for shorter

trips to the store,to visit friends, to go outside to play for short

periods, and around the house. His chair gives him freedom to enjoy

being with others and being back in school full time this year!

It is nothing to fear...it keeps you in the game of life!

Just my opinion.

[Guest guest]

Yes, , I'm extremely blessed. Although I was a fat klutzy kid who couldn't

learn to skate or jump rope, I wasn't diagnosed with CMT until my 60's (don't

get me started on doctors who have their heads up their .......es). The fact

that my serious symptoms were late onset did give me years of relative

" normalcy " , whatever that means.

Age slows us all down. Everything takes longer & hurts more as we get older,

even at 30 & even for people without CMT. I'm sorry, , that things are

difficult for you. Someone gave me a quote from Albert Einstein, that the body

is only something to carry the brain around. I hope to stay feisty and frisky

in my brain, even if right now my body seems to be my enemy.

Ruth

Be kind. Everyone you meet is struggling with something.

[Guest guest]

Back atcha, Geri

Ruth

[Guest guest]

Ruth,

I have a " severe " case of CMT & started using a manual & power chair at

age 16. At 36 years of age I am " confined " to relying on a manuel one

inside & a power one outside. I no longer have the leg strength to

support my body. When I first got a power chair I practiced driving it

in my old apartments parking lot. It really is a challenge to learn how

to use it for the very first time. I crashed into a parked car & a

telephone pole. I didn't get hurt at all. It's now some 13 years later & I'm a

pro at it. I have never had my batteries die on me while out n'

about. I just make sure it is fully charged before I leave my apartment. Good

luck in your purchase.

Kerry from Wisconsin

[Guest guest]

Adam is 15 and could use a wheel chair now.