Donna's introduction

[Guest guest]

Hello all,

I found through a referral from someone on the CMTA message

board, and I am delighted at what I have seen so far.

I am 60 and was diagnosed with CMT Type 2 about 15 years ago. My

father had it, although they told him only that he had a neuropathy.

Being a much more aggressive medical consumer, I went to several

neurologists until the disorder was given a name. Since then, three

of my five brothers have also been diagnosed.

I have been wearing AFOs for the last 11 years, starting with some

inobtrusive plastic ones that I covered with opaque pantyhouse and

wore with dress flats and business suits during my career as a state

elected official. Since I retired from public office in 2000 I have

graduated through custom hinged AFOs, off-the-shelf carbon graphite

Toe-Off and Ypsilon braces from Camp. I wear slacks and almost-

fashionable Ecco tie shoes to minimize the ugliness of these more

functional braces.

I have an appointment on Monday, January 24, to be evaluated for the

SAFO brace from Dorset. (Who knew that their US distributor would be

in New Hampshire?) My muscle deficit is so advanced that I doubt I

will be a suitable candidate for a SAFO. Hence, I have made

preliminary inquiries about getting fitted with Helios brace at Ortho

Rehab Designs in Las Vegas.

One of the reasons I retired was to concentrate on my health. I tell

everyone that from the knees up I am in the best shape I've ever

been. I swim 20 laps (5/8 mile) seven days a week, (I use a cane to

get from the locker room to the stairs at the pool) and do circuit

weight training three or four days a week to maintain the muscles

that still work. I lost 30 pounds at Weight Watchers and have stayed

below my target weight for over two years by limiting portions and

making healthy choices.

Even with all this effort my CMT is progressing and it is quite

difficult to walk more than minimal distances or on uneven or

slippery surfaces. I can no longer step up the six- or eight-inch

curb from the street to the sidewalk without hanging onto someone or

something. For the first time I've had to miss a meeting, not because

the driving was difficult (We're used to bad weather in New

Hampshire) but because even with my cane, the sidewalks were too icy

for me to risk a fall in getting to my destination.

In spite of this, I continue to be involved in public policy issues

as a board member for several non-profits, and as a guest speaker,

writer, mentor, and pundit. I do not ever want to be defined by my

disability, so I am trying to stay ambulatory as long as I possibly

can.

I would love to hear from anyone who has experience with SAFOs or the

Helios bracing system. My insurance won't tell me how much, if

anything, they will cover until the claim is submitted. The CMTA

article says the SAFOs are about $4500 and the esitmate on the Helios

is $10,000, so my financial exposure is significant should Blue Cross

not pay. Let me know if either of these has worked (or not)for you.

Thank you, Gretchen, for convening and moderating this useful news

group.

Donna Sytek

Salem, New Hampshire