Introduction and some tips...

[Guest guest]

Hi Everyone:

My name is Marti. I am a 30 year old woman who most likely

(not formally diagnosed yet), has CMT. I was diagnosed with

Bilateral polyneuropathy of the feet and legs about 15 years ago. My

symptoms include foot drop (I have some modified AFO's and have been

given orthotics in the past), very high arches, short heel cords, icy

cold and hot hands and feet, occasional hand tremors, poor balance,

hammer toes --- you get the picture. When I was diagnosed, they were

not able to provide an explanation. The doctors said that it may be

inherited but they couldn't find a particular link (my Dad has nerve

deafness though and I have many relatives with flat feet). The

doctors also told me that it was not likely to be progressive, and

that's been the most troubling thing about realizing I probably have

CMT - the progressive aspect. I discovered this possibility when I

was dating a physician last fall; he said my symptoms were remarkably

similar to CMT " a very common " nerve disorder. I found the " very

common " quite odd because I have never met anyone else with my

symptoms.

Anyway, although I am a mental health professional, and I know

the great benefits of support groups, my feelings about this group

are mixed. While it's fantastic to hear about other people with

similiar problems, it's also very distressing - especially the less

optimistic stories. No offense , I'm glad that you spoke

honestly, but hearing your long list of the things that you " can't do

anymore " because of CMT, really depressed me. I try to take the

attitude that Gretchen mentioned in her reply. I think not having a

support group has been mixed. While at some points it's lonely, I've

also been able to be optimistic believing that maybe it won't

progress and that I can overcome my barriers. I do think that

attitude has helped. I have begun to exercise a lot more in the past

few years and that has made a huge difference. Since I began

exercising, I feel more sturdy, have more endurance, have a better

gait, have more energy and basically feel my feet more. I really try

not to let CMT hold me back: I ski (skiing is not much affected by

CMT as the boots brace the most affected areas), rollerblade, swim,

mountain bike (I did eight miles yesterday), do the stairmaster, go

on long walks (w/ AFO's), etc. I think, though, that it's a lot

easier to do these things and keep tabs on it, because I do not have

a weight problem.

I think it has been both a blessing and a curse for me that

most people don't notice my CMT at all. I hate to admit it's a

blessing because I really wish that disabilities were not as

stigmatizing as they sometimes are, but nonetheless, most people

don't notice it immediately and thus don't subject me to looks of

pity. It is also a curse because, since people don't notice it, they

often don't slow down for me, or make accomadations and it can be

difficult to explain. Sometimes people just assume I'm drunk or

something and that's awful.

I think the hardest part for me at this point in my life is how

it affect's my vanity. I'm ashamed to admit it, but it's true. I

absolutely hate shoe shopping because I can't wear any sort of a

heel, can't wear a flip-flop, clog or backless shoe, and my feet are

oddly shapen so they don't fit into so many of the shoes I would

like. I'm not much of a partier but I've also been refused drinks at

a bar (when I've had one drink or less), due to my poor balance. And

there are sports and activities that I don't/can't do. I try to stay

on the bright side though by doing everything that I can. I must

admit that I probably take more risks than I should at times, but I'd

rather be active and try something than sit on the sidelines all the

time. My vanity really limits me some now because I am not quite

willing yet to wear my AFO's with shorts. I also will not wear the

really ugly orthopedic shoes; I don't think they really helped much

anyway. I do find though, that New Balance makes orthopedic

running/exercise shoes for people with AFO's and orthosis and they're

attractive. I also really like my Birkenstock sandles and they've

helped my toes unfurl. One Tip folks: YOU DON'T NEED TO WEAR LONG

SOCKS WITH AFO'S: Just put petroleum jelly on your skin where they

would run - no friction or discomfort. It really works!

I began noticing CMT symptoms at around age 10 or 11. I didn't

see a doctor, though, until age fifteen when I tried to play Lacrosse

on the High School team and found myself running way behind my team

mates with my ankles turning often.. I actually made it through an

entire JV season!! It was amazing because, after the doctors

diagnosed my nerve damage, I didn't even have to take gym for the

rest of High School. Prior to diagnosis, I did sprain an ankle once

and also broke a bone on the top of my foot when I stepped on it

while trying to run up some stairs. Fortunately since that time I

havn't really injured it (despite not always being the most compliant

patient). I did do one REALLY stupid thing though: I tripped while

running in Birkenstock sandles with a glass bottle of Snapple in my

hand (not too smart). That resulted in disconnected tendons and

nerves in my left hand. My left hand recovered okay but always feels

numb now - not because of CMT but because of the injury. I'm sure

that won't help my prognosis in terms of my hands and the CMT...

Anyway, as I mentioned earlier, I've come a long way since the

diagnosis. I was really traumatized by it as a teenager especially

since I had only gotten rid of coke bottle glasses a few years before

(I was also born with cataracts). The contact lenses drastically

changed and improved my life and I saw the CMT as a sign from God

that I was doomed. Fortunately, in the years since I did discover

areas where I can excell and I got out of the " learned helpless " mind-

set. It did help me to understand where other people are coming from

though... Anyway, I'm glad that there's a lot of information and

support now for kids and teens with CMT: I could have really used it!

I would love to hear from others. I am especially eager to

learn about AFO advances. I would love to have better balance and

support in a smaller, more attractive brace but I am probably

dreaming at this point.

Anyway, I will be seeking out more medical info really soon.

I've been a full-time graduate student with very minimal health

coverage for the past two years. I just graduated last week and will

be beginning a new job (with good insurance), within a few weeks.

I'll also be moving to Virginia where I do hope to possibly start a

support group.

I think I've said enough for now. Hope to hear from you!

- Marti