Re: adaptions

[Guest guest]

Jackie,

I will look into the vocational rehab in NJ if we have one and see what they

recommend.  I actually have at my job an EEO/ADA/AA Officer who does nothing but

find ways to make sure any accomodations is needed but there was nothing at the

job specifically that would help because my problem is mostly pain and pain not

from working the job and I have no problems doing my job functions.  I come home

many days and just drop and forced to take too many pain killers. 

I love my job though and thats the one thing that keeps me active mentally and

physically and the one place I feel " normal " .  I can not see myself staying home

without having a lot too do.  I guess my stubborness gets in the way some times

and I take on too much.  I am not sure if you or anyone experience this but for

me sitting more then 20 mins at a time cause me stiffness and muscle cramps so I

am trying to avoid a wheel chair but a scooter is something maybe I can use

eventually. 

The walker I have tried once and it kept making me trip myself and fall forward

even with the breaks.  It could be that I need to learn how to use them but as I

stated before no one will prescrible me one or show me what to use.

I have been thinking a lot about the Helio Braces and thinking I need to take

the trip to LV.  I have heard wonderful things about them.  Thanks for the info

I appreciate it much

Andy

________________________________

From: Jackie Sachs <jackiesachs@...>

Sent: Friday, October 10, 2008 10:59:47 AM

Subject: Re: You have CMT ohhh sorry we can't help you........Hot

Potato.........

Andy,

I too at age 25 was told by a very renowned neuromuscular doctor at one of the

best known hospitals in the world that I have CMT and will probably be in a

wheelchair at age 40 and no need to go to physical therapy, just do what I do

naturally in a day, that is enough. I believed him and regret that I did not

push the exercise program more when I was younger. (47 years old now).

Do you have a department of vocational rehab in your state? When I was having

difficulty walking far in my office years ago, I went there and they came out

and did an evaluation of my workstation and then ordered me a scooter to use at

work, plus some ortho pillows and other stuff for when I am sitting at my

computer to keep my body from tiring. This was all paid for by the state.

Also, have you considered one of the 3 wheel walkers that has the seat to use at

work. Last night, I had my mother walk in my house with one and I was amazed at

how her gait improved. She walking walking fast and with her head and shoulders

held up and her confidence from losing balance improved greatly. Just try to use

those type of adaptive devices at work to allow you to continue working and save

your energy for your daughter.

I know what you are going through. I was a working single parent for 18 years

and I could never have gone on disability for healthcare and financial reasons.

If your quads are fairly strong, you should check out the Helios braces at Ortho

Rehab Designs in Las Vegas. They work wonders for balance and proper gait and

Mitch will work with you for an entire week to make sure the braces fit properly

before he will allow you to go home! If you quads are extremely weak, you may

want to keep researching.

Hang in there!

Jackie