Power Assist chair

[Guest guest]

How lucky you are that you don't need a power wheel chair or any

wheelchair. If only all CMT patients were as lucky as you! The reality is that

many CMTers do use wheelchairs, or scooters or rollators and their ages vary as

to when they need to start using assistive devices.

Unfortunatley, some are very young and the disease progresses faster in them

than in others, so as a result, the prospect of using a POWER

ASSIST chair allowing mobility to hang out with friends and go to

school was and is a big deal! It's not a power chair...it is a power

assist chair. They are relatively new to the market and still require

manually pushing the wheels.

We didn't ask for one, again, due to the nature of his symptoms it was suggested

to us by a physician as a way to help him get through a day without experiencing

tremendous fatigue. When he has recovered from both of his surgeries hopefully

he will not need to use the chair...but until that happens, the chair works for

him. Don't take that away from him, or make negative comments about it because

in their life experience AFOs worked.

Just because we've never heard of a child with CMT needing to use a wheelchair

doesn't mean it isn't so. Just because we have successfully used AFOs doesn't

mean everyone can.

Everyone is different in this world...some of us seem to grasp this

quickly and others still struggle to make the world believe that their approach

is the only way to go. I believe that whatever works for you is

outstanding...but it might not work for me...and that's o.k, but my way is

outstanding too, and the lady down the street has what works for her etc, etc,.

The difference is, I won't ever suggest that my way is the only way...I am open

to new concepts, new trials and the fact that each day is an opportunity to

learn and grow from other peoples experiences, not an opportunity to demean or

consistently get in a zinger to someone who is pursuing a different path.

[Guest guest]

I wish I would have ...could have had a " Just " a w.chair when I was in school. I

was so tired and I couldn't hardly stand it! Perhaps I wouldn't have hated

everyday and my life!...Still gives me the shivers to even think of how

miserable I was and how know one got it!!! I'm now 66!. Do what ya got to

do.....to make you life as painless as you can. The stress can be a real bummer

know matter how old you are or young!

Geri

[Guest guest]

Hi ,

I haven't been a member of this group long, but I have found your posts about

, parenting, and life to be very inspiring. is very fortunate to

have such a wonderful, caring mother!

One of the things I really appreciate is the detail you provide about his

situation. He has faced far more challenges than many with CMT face in a

lifetime and it's very encouraging to see how you and he manage it all with such

a positive attitude.

How cool for that he can use the power-assist chair to get around school

and then park it at the classroom door and be a " normal " kid in the classroom!

I bet he's the envy of a lot of kids as he rides around!!!

I would like to get one myself someday. I love my scooter, but it's not always

practical for every situation. For those of us dealing with severe fatigue,

these mobility devices can be the difference between being house-bound vs having

freedom to leave the house, enjoying a measure of independence, and continuing

to participate in the world around us. (It's not unlike driving a car. We

could get more exercise if we walked everywhere, but we can sure get a lot more

done if we drive!)

As for AFOs, like , I've never had any doctor recommend them. As I

understand it, AFOs are prescribed primarily for foot-drop, which I don't have.

CMT does affect each of us differently and therefore, our medical needs are

different. If my situation changes in the future and my doctors prescribe AFOs,

I too would give them a try...after, of course, asking everyone's opinion here

about what kind I should get!

, it was a post you wrote a few months ago that initially motivated me to

sign up and participate in this type of group format. I certainly hope you

continue to post!

[Guest guest]

I just want to say get over it all ready! It is great that you never had to

have braces until you were 30yrs. old. A lot of us with CMT aren't that lucky.

You should be very graetful and not be criticizing anyone for the choices they

make. I guess the ones of us that have had to deal with all the supportive

devices early in life know what it's like. Lighten up on us please.

My granddaughter is 6 years old and was just diagnosed with CMT and is already

having having trouble in PE classes. Her Dr has gave her strengthening exercises

to do here at home and the PE teacher works with her. But let me say if my

daughter or I see that she needs a power assist chair she will have have it

regardless of what the Dr or anyone else has to say about it.

Myself (I am 43 yrs old. have had CMT all my life) and my daughter(she was

diagnosed at the age of 7 with CMT) knows what it was like to go to school

everyday and deal with it.

Let me say that everybody needs to do what's best for them to make their life

easier and less stressful. I applaud all parents for standing up for their

children and making there lives better and more manageable.

, hang in there you have a lot of support on here.

Sylvia

[Guest guest]

Thank you Geri for your post. I so appreciate your support...

[Guest guest]

Thank you Sylvia! Your support means so much to me. It has always

been my philosophy that you have to deal with what your given head on

and still live life to the fullest. You've done it, your daughter

has done it...and your granddaughter will do it. With each generation

the tools to make living life to the fullest have evolved and

provided a better quality of life!

I am all for that!