Re: Question about braces, falls, pain, disability, etc...

[Guest guest]

I too fell really bad 1 1/2 years ago and had a compound fracture. I ended up

in nursing facility for 7 1/2 months. I could put NO weight on that leg for 5

months and with CMT using crutches is out of the question.

Before the fall I had the plastic AFOs.......now after surgery I have the metal

braces that attach to a pair of shoes. Much better, because they can manipulate

those to keep my knees from buckling. Really pretty cool.

I, too fell, because of my knees just giving out. Over tired and that is not

good.

Hope this helps, .

Sincerely,

Connie Lasko

P'burg, OH

[Guest guest]

,

I am so sorry you are experiencing all of these things at such an early time in

your life. I have CMT 1B and am 60 yrs. old and I have been going through what

you're experiencing since my CMT became worse at age 50.

The braces you're referring to are The Helios out of Las Vegas. They are very

expensive $6,000 for each one! My orthotist hooked me up w/an afoot that is

awesome. I don't know what it's called, but it has a small metal shaped foot

that goes into your shoe first and continues up the back up your leg. It does

not go to the knee, so you can bend your leg better than w/that plastic junk.

Near the top it has soft padding that adheres to the brace with velcro and then

a velcro'd strap goes around the top and near the ankle to keep you attached to

the brace.

My gait is so bad w/out this brace, but when I put it on and wear slacks, no one

call tell I have a problem! In the summer when I wear shorter pants, I have

people/friends ask when I broke my leg! They had no idea I had any kind of

walking issues. Insurance does pay for these and they are not that expensive.

Oh, and then you need the orthotist to mold an orthotic that will fit in you

shoe over this. That way you don't feel the metal and you're very secure and

snug in your shoes.

I worked at a law school when I had to go on disability as age 48. It is

nothing to be turned down the first time! They don't know much about CMT and

think we'll go away. Not! You keep applying on your own and w/your doctor

(preferably a neurologist) and after 2 denials, you can hire an attorney who

specializes in disability insurance. DO not hire them until you've tried all

this on your own b/cause they will be able to claim up to 1/3 of your first

check, which will be a fairly large check, as it will include back payments from

the first time and first month you applied. If they only go w/you to a

disability hearing, which is done for almost everyone, they can only claim a

very small part of that $ b/cause you will have done all the long term work

yourself. Don't be afraid to ask for a hearing, and don't be afraid to then

hire a reputable attorney to go with you.

Give your attorney all of your symptoms and be very up front w/your issues.

Take pix of your bloody knees, scars, trips to ER. All of this will help. Also

go to the CMTA site and copy what CMT is. They have great descriptions and if

you don't subscribe to that newsletter, you should!

Also, did you know you are eligible to me seen by the MDA (Muscular Dystrophy

Association—Jerry's Kids)? Yep, we're one of his kids. Look for your nearest

MDA clinic. I go to Duke's MDA, since I live in NC. They are so helpful and

they will help you immensely.

As for cold hands. I have those too! Lyrica is my best hope and it does help

some. You should go to Restoration Hardware and buy their hand warmers. Just

keep them in your pockets. They're great. Look for them online if you don't

have that store near you.

Best of luck. Feel free to contact me if I can help in any way!

Mags

[Guest guest]

Hi ,

You may want to look into Knee Ankle Foot Orthotics.KAFOs.

For the cramps, perhaps a switch to Baclofen or Robaxin? For pain - what about

the Duragesic patch? You wear it on your skin, change it every 3 days. Ask your

doc.

I imagine with 2 3 year olds you are very active and moving fast. This can cause

imbalance, then falls, so if it's possible slow down. Can you get some help with

the children?

Braces made out of carbon fiber may be better suited for you.

As for SSDI, apparently the Agency is not convinced you can no longer work.

That's all they care about. It is common to be denied the first time. Appeal

this and ask for a Hearing. In the meantime, write down all the work activities

and tasks you can no longer do (handwrite, type, answer phone, lift, squat,

carry, kneel,walk distance,etc)

Then contact Nosscr at http://nosscr.org or call them at 800-431-2804 to ask for

names of attorneys who know Social Security Disability Law in your city. First

call is always free, so you can call a couple and see who would be best for your

case. Your attorney is paid by Social Security, not by you, and not until a

favorable decision is made. Your attorney can review your SSA File to see what

evidence is lacking, can get it, and together present your case before an

Administrative Law Judge.

It is part of the " process " to be sent to a SSA " doctor " who knows nothing about

CMT, and yes, it is usually in a run down clinic or part of town.

Gretchen

[Guest guest]

Jen,

Sorry to hear about all of your challenges- no fun. And the twins must be two

or three? Yikes! I have a two year old myself and a 7 year old. When she was

2-3 was a huge challenge, too. The toddler years are tough on those of us with

strength and energy issues - tough on anyone from what I hear

I am 38 with type 1A. When I got disability at 33, they really liked scientific

paperwork- the results of my electronic nerve conduction tests, genetic test (if

you can get that), and other paperwork- including a paper trail through years if

possible. Ultimately, what decided my case was that I needed to show a year of

being unable to work, and I needed (still need) surgery on both feet with a 6

month recovery time for each.

My disability was through the teacher retirement system, so it's a little

different, but the info might help.

I wish you the best of luck and health!

Lenka