Re: Power Assist Chair

[Guest guest]

I just have once piece of food for thought and would like to preface by saying

that everyone had to do what is right for themselves and their children but I

just want to share my experience.

I just would like to stress that it is really important that if you chose this

option for your son that you need to make sure that he has a different

opportunity for exercise everyday because it is so important.

I am currently 30 years old but my disease has progressed the most in the past 3

years. First off I got pregant with my son which is a blessing I will never

trade despite how it has effected my mobility and 2ndly I took a different job

which lessened the about of walking I had to do for work every day. I had very

much been looking forward to being able to focus on my job (medical coding)

without have to walk so much for a clerical portion of my job.

However, I noticed almost immediately that my body was craving the walking that

it had gotten every day. To make things even more interesting my job has become

a remote position so now I work from home and have even less walking required

everyday. It took me a little bit to realize it but the only thing that is

going to keep me out of a wheelchair (my personal goal) is to exercise

faithfully.

I am back in a regular routine again and actually enjoying every minute of it

because I know how important it is to my lifestyle. I have just found a new

class which I highly recommend if you can find one in your area. Group Cycling

on stationary bikes!! It is totally great for your upper thighs and butt and

helps your joints get into a good flow as well. I have absolutely no joint pain

when doing it and my thighs feel 10x stronger when I am done!

W.

[Guest guest]

Thank you . My son does get regular daily exercise including

swimming, walking the dog etc. and he also uses the stationery

bike. He only uses the chair to get to and from classes which zig

zag through a very large campus. He went bowling today....I

appreciate your sharing your story. I do agree that exercise is

vitally important to CMT patients.

[Guest guest]

It seems you are acting like your son got a new go cart or something

not a power wheelchair. I have never seen or heard of a kid with CMT

who used or needed a wheelchair. I bet he thinks it is fun like a

scooter or something. But if he uses it more and more he will become

dependent on it and will loose muscle tone.

The human body was designed to be upright. People who are dependent on

wheelchairs long term begin to have more problems not related to their

disability.

The kids you see with power wheelchairs have more serious forms of MD and have

lost the ability to walk even with braces. Everyone here suffers or knows

someone who suffers from CMT and we only want the best for your son, I just hope

you encourage your son to use his legs and maintain the strength he has.

Wearing AFOs just seem like a simpler and better solution to his problems. That

would eliminate the stress and strain he is having too and would have him use

his legs.

[Guest guest]

I know many other CMT patients and am around many others and I have

never seen one use or want a power asist chair. I'm sure that maybe

older patients might want one but this also might be due to growing

older. The scooter companies have ads all over tv selling older

americans on using power chairs and scooters and how Medicare or

Medicade will pay for them. I think I remember some of your posts

saying how great the power assist chair was and how excited you were

for your son getting one. That struck me as truly strange. I've never

met a mom like that esp without even giving AFOs a try. I really hope

your son's operations turn out so well that he can stop using the

chair even if that means using AFOs. I bet he would feel like more of

his peers at school walking around, even if it was with the assist of

AFOs. I have heard of many good outcomes from that operation so I am

hoping that will be true for him too. I believe the new research about

AFOs and CMT has found that they conserve energy helping the CMT

patient do more and enjoy life. It seems that way for me. So that

seems that would help your son and his fatigue problems.

Being a teen is hard. You're not a kid and not an adult. You want to

look like and be like your friends. It's important what you wear and

how you look. I bet if your son was up walking around campus with his

friends he would feel better about his CMT and his situation.

Bob

[Guest guest]

No mother in her right mind would ever want for their child to be in

a wheelchair. The reality is however, that a mother whose child is

nodding off in class, falls asleep in the car after school and comes

home and sleeps for 2-3 hours would be considered a negligent mother

when she ignores or fails to procure the tools availble to combat the

fatigue and improve the quality of his life. The chair helps

keep up with his friends in the halls. He parks it in the classroom

and sits in a normal desk and performs normal tasks. The beauty of

the chair is that he talks to me on the ride home from school and is

awake to do homework and eat dinner and play ....Am I excited about

the power assist chair? YOU BET I AM! AFOs were contraindicated

for our son. We needed to find a better way to help him handle his

fatigue.

We know only 1 other person who has CMT in our area and it's only

because I work in a very large school. I venture to say that other

than immediate family members, most of the people in this group feel

pretty isolated in their diagnosis. How fortunate for you that you

are around so many others with CMT that have all benefitted from

AFOs the way you have!

His power assist chair is not a scooter, nor did it come from a

commercial or a scooter store. I am not prone to impulse buying or

easily swayed by marketing ploys. Can you not just let this go and

agree to disagree. You are not a parent and really have no right to

continue to barrage this group with your assaults on our plan of care

for our son.

[Guest guest]

Hey -

Thank you so much for your support! has faced more in his 14

years than alot of CMTers do in their 80's. Yet, he has maintained a

wonderful sense of humor. He is compassionate, charming and smart.

(Yup, I am a proud mama) On the way into surgery the doctor asked

what color cast he wanted - I immediatley said Barbie pink with

sparkles! He immediately chimed in that his parents had no say in

his cast color, and told the doc he wanted a black one so that his

mom couldn't write on it in pink ink. I borrowed a white out pen

from the nurses station...we make the best of every situation in our

family!

I think that the freedom to express our thoughts, frustrations and

joys in this group is such an important part of my being able to

support my son in how he faces his daily challenges. I don't believe

it is in anyone's best interest to be so inflexibile that we can't

see the other persons perspective on things. I learn and also am

inspired by 99% of the posts on this site. I've met some wonderful

people who have shared so much of themselves that I am grateful for.

The 1% won't change that. I've got pretty thick skin.

doesn't have the classic " foot drop " either. His toes had

started to claw and so he was also ineligible to be assisted by

AFOs. I don't think that concept is too difficult to understand

either. If the surgery does what it is hoped to do, and AFOs are

then appropriate he will have them. Whatever he needs to help him be

a more mobile and involved person in life, he will have.

Again, thank you for your support and kindness...I look forward to

hearing more from you as well!

[Guest guest]

,

Just keep following your amazing instincts and research. I am lucky enough that

my CMT did not affect me until my 20's, but I can relate to going out during the

day and needing to take a 2 hour nap when I get home. I am so fortunate that I

went through school and college without being affected, but would have certainly

needed a power chair to have gotten from one end of campus to the other.

I do have severe foot drop and have worn AFOs for 20 years and have just gotten

a scooter 2 years ago. What a difference it has made in my life. I now do not

hesitate to say YES to going anywhere my friends or family want to go and it

actually has made my outlook brighter, because I am back to getting everything

done in a day that I want to rather then what I have the energy to do. I only

use it when I am going somehwere that requires a lot of standing or a lot of

walking and balancing.

I still drive, get out of my car and walk when going to a restaurant or whatever

is not very taxing on the body. We ALL have to do what is right for us and our

body and until anyone walks a mile (or 1/2 a block!) in our shoes, it is hard to

understand. One thing I do get, is CMT is so different for all of us. I would

never be able to do all the things Gretchen does, but I do realize I can do more

than others and ATTITUDE and SUPPORT are everything!

Jackie

[Guest guest]

Thanks Jackie! That's exactly the way we approach it. We are

blessed that we can still do the things we are able to! That and a

great sense of humor helps the bad days go by quicker!

You hang in there too! You sound like you are a very active person

as well!