Re: Introduction and some tips...

[Guest guest]

Becky: I do understand people's need to vent, and I certainly also realize

that many are much more seriously impaired by their CMT than I am. I did not

mean to complain about other's postings or criticize any one in any way I

SINCERELY APOLOGIZE IF I HAVE OFFENDED ANYONE. I actually didn't think I was

complaining about others or telling people what to write I was just trying

to be honest about my own reactions, where I'm at, and what I've

experienced. I do realize that from what I've heard, that I could be in full

leg braces and/or a scooter myself in several years and I hope that I can

muster the courage to cope with that should it happen. I imagine that if it

does, I will have to...

[Guest guest]

I also understand that CMT is pre-programmed and that what we do may not

naffect the outcome. For exampl;e, I realize that exercise is detrimental

for some people with CMT. I certainly do not mean to sound as if I'm blaming

anyone for their CMT or it's expression: I know that my CMT does what it

does regardless of some of my best efforts to control it. I just meant to

remark on some of the things that have helped me and if they help even one

other person, that is great.

Thanks for listening.

- Marti

[Guest guest]

Really no need to apologize for anything. Your feelings were as honest as

his. He will continue to post and so will you.

have a great holiday weekend everyone

[Guest guest]

In a message dated 5/26/00 9:17:30 PM, mmc3737@... writes:

<< I just meant to remark on some of the things that have helped me and if

they help even one other person, that is great. >>

Exactly, that's what we're here for. We never know when something we've

learned will be of use to someone else. We're all in this together, even if

we are all different too!!! LOL Sharing is good.

Kat in Seattle

>^,^<

[Guest guest]

In a message dated 5/26/2000 7:25:23 PM Pacific Daylight Time,

mmc3737@... writes:

<< 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. >>

HI Marti, I have never been able to do the above things you mentioned.

The 'think I can' attitude only takes you so far until you have to admit to

yourself you really can't. When you have CMT sometimes you can't and it's not

your falt if you can't. For many of us complaining to each other is the only

complaning we do at all. If you feel like complainig we are hear to listen.

After all who can really understand where we are comming from unless they

have walked in are uncomfortable shoes. The support group can be scary at

times but that is life I guess.

I hope you find that cute brace when you do let me know:)

jenny

[Guest guest]

-----Original Message-----

From: mmc3737@... <mmc3737@...>

egroups <egroups>

Date: Friday, May 26, 2000 9:11 PM

Subject: [] Introduction and some tips...

>Hi Everyone:

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

>(not formally diagnosed yet),. 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 endurance, have a better

>gait, have more energy and basically feel my feet more. > I think it

has been both a blessing and a curse for me that

>most people don't notice my CMT at all.

>Becky M. here> If you wear full leg braces from toes to groin and or

use a wheel chair or scooter, its very noticable. Many persons with CMT do

have to use these things. Having a positive attitute is great but not alway

realistic as having a medical problem that takes away your former freedom or

ability to do the things you used to do can be depressing. This list is not

only for the " good, and or positive " but should also be for the " support " of

others with CMT. If that means telling of things one can no longer do then

so be it. Its great you have an upbeat attitude, I try to keep one too,

altho not always easy. I myself, like to hear of others problems with their

CMT, I can compare and learn from others share, give tips etc. There are so

many degrees of disabilities within the different types and subtypes of CMT

we are all different. Some the CMT is not noticable as you say yours is,

some is very noticable, whats good advice for some is bad for others, many

cannot ski, take walks, exercise, rollerblade, swim, ride mountain bikes,

stairmaster, so they have problems with weight. That alone can be

depressing. 5 years ago I belonged to our local health club I worked out 3-5

times per week was healthy as a horse. I now wear full legs braces and use

forearm crutches to walk. I don't have a weight problem, I should as I

cannot exercise, but for some reason don't. You state you are a mental

health professional, then you should understand the need to vent and to

voice problems one is having due to a disability. Stick with the list, you

will soon learn after scanning an e-mail if its going to be depressing to

you, then you can simply delete that e-mail and go on to the more upbeat

ones of your liking. >Becky M. P.S. To all who prayed for my husband,

THANK-YOU! He is much improved!

[Guest guest]

In a message dated 5/26/2000 9:10:46 PM Pacific Daylight Time,

mmc3737@... writes:

<< I do realize that from what I've heard, that I could be in full

leg braces and/or a scooter myself in several years and I hope that I can

muster the courage to cope with that should it happen. I imagine that if it

does, I will have to...

>>

It may not take several years. Or it may never happen. We all have to cope

what other choice do we have? One thing we have forsure is each other.

jenny

[Guest guest]

In a message dated 5/26/2000 9:17:18 PM Pacific Daylight Time,

mmc3737@... writes:

<< I just meant to

remark on some of the things that have helped me and if they help even one

other person, that is great.

Thanks for listening.

- Marti

>>

Some of the active stuff you can do would break my feet in 1/2 .. Fusions ya

know.

jenny

[Guest guest]

In a message dated 5/26/2000 9:41:24 PM Pacific Daylight Time,

rmax@... writes:

<< No offense taken, so many people who are less affected with CMT think

that ALL persons with CMT are like they are, I have run across this before.

So I didn't know if you were aware of the range of differences or not and

frankly I guess I'm just a bit touchy tonight, tired. Honey if you only

knew my history with my CMT and my problems at the moment!!!!!! You'd be

depressed for a month! LOL! Laughter is the best medicine, I try to turn

everything into a joke as far my situation goes, I'd rather laugh than cry

if possible. My husband has had some serious medical problems last 2+weeks

(in a coma but much improved now) and has just been diagnosed with M.S. to

boot! Boy won't we just make a pair! Have a great weekend to all,>Becky

M. >>

Becky I love you your a good Mom, wife and friend

jenny

[Guest guest]

Marti,Lamar here,

You have a very positive outlook. It is wonderful that you are able to do

things many of us never could and others have lost the ability to do. I

once could do many of the things you mentioned and found them good for me.

The negative aspect is that activity became my main escape mechanism. I

went from racing bicycles to being unable to keep my feet on the pedals of

an exercise bike. Climbing 100 foot pines to install antennas and prune

them to having a problem stepping up on a curb. You sound very near where I

was at 30. Now at 52 the tools that once worked no longer do. That is why

I am having to look for other means to relieve my stress. As a fellow

mental health professional, I am sure you have learned that the real values

of any support group are multi faceted. You vent frustrations, and find new

methods to cope as well as the empathy of others. (Anyone that has ever

worked with AA learns the value of their " drunk-a-logs " )

I applaud the tools you have found, but urge you to remember that many have

found that vigorous exercise, sufficient to cause a lactic acid buildup in

the muscles, is not advisable for those with CMT. The damaged muscles do

not recover as rapidly or efficiently and this can contribute to the

progression. 'No pain, no gain " is NOT true for CMT and exercise. I do

hope you are finding other things to enjoy and relieve stress in the event

the ones you describe are no longer available..

I am curious about the petroleum jelly and AFO's. I do not see how this can

work. I would think it would take a very heavy application to offer

protection from the straps rubbing, and that it would still be limited in

how long it would last. It would actually make the skin more tender and

impede the evaporation of perspiration thereby increasing the likelihood

of yeast or fungal infections. It certainly would provide no cushioning or

absorbency. Do you use a heavy application or light one? How often do you

re-apply? Since petroleum products weaken nylon, does it damage the straps

and Velcro? (I would think that it would at least make them " attract " dirt).

It sounds good, but I recall the skin damage I had from one day wearing mine

with short socks, due to irritation from the straps, and would hesitate to

try it. I have had three different ones and found the " Toe-Off " works best

for me in addition to it being lighter and more comfortable. I have heard

that clear AFO's are available that would be noticed less, but have not

found them..

As for vanity, I lost mine rapidly. When I got AFO's I could barely walk

without them. The same when I went to a cane to prevent falls. I had to

start using a walker following back surgery in Feb. but am trying to use

the cane again for some things. Assistive or adaptive devices become

friends, and what others may think is their problem. Shorts with my AFO no

longer worry me like they once did. In fact I find that now people can see

there is a problem, there are less stares and comments than when I staggered

like a drunk. ( I once had three breath tests in a roadblock before I

convinced the officers I had not been drinking---LOL)

Good luck on your endeavor to start a support group. I do have cousins in

sburg, VA (near Richmond) that have CMT. I would like to start one

myself, but have had no cooperation from MDA about sending out a notice. (I

know they can't give me the information, but they could advise of a meeting

or contact without violating confidentiality). I only know one other person

with it within 100 miles, so I have come up with no viable plan.

Welcome to the list.

----- Original Message -----

From: <mmc3737@...>

<egroups>

Sent: Friday, May 26, 2000 10:24 PM

Subject: [] Introduction and some tips...

> 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

>

>

> ------------------------------------------------------------------------

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/4053/10/_/616793/_/959394267/

> ------------------------------------------------------------------------

>

>

[Guest guest]

-----Original Message-----

From: mmc3737@... <mmc3737@...>

egroups <egroups>

Date: Friday, May 26, 2000 11:03 PM

Subject: Re: [] Introduction and some tips...

>I also understand that CMT is pre-programmed and that what we do may not

>naffect the outcome. For exampl;e, I realize that exercise is detrimental

>for some people with CMT. I certainly do not mean to sound as if I'm

blaming

>anyone for their CMT or it's expression: I know that my CMT does what it

>does regardless of some of my best efforts to control it. I just meant to

>remark on some of the things that have helped me and if they help even one

>other person, that is great.

>

> Thanks for listening.

> - Marti

>

No offense taken, so many people who are less affected with CMT think

that ALL persons with CMT are like they are, I have run across this before.

So I didn't know if you were aware of the range of differences or not and

frankly I guess I'm just a bit touchy tonight, tired. Honey if you only

knew my history with my CMT and my problems at the moment!!!!!! You'd be

depressed for a month! LOL! Laughter is the best medicine, I try to turn

everything into a joke as far my situation goes, I'd rather laugh than cry

if possible. My husband has had some serious medical problems last 2+weeks

(in a coma but much improved now) and has just been diagnosed with M.S. to

boot! Boy won't we just make a pair! Have a great weekend to all,>Becky

M.

[Guest guest]

-----Original Message-----

From: jacee17@... <jacee17@...>

egroups <egroups>

Date: Saturday, May 27, 2000 2:00 AM

Subject: Re: [] Introduction and some tips...

>In a message dated 5/26/2000 9:17:18 PM Pacific Daylight Time,

>mmc3737@... writes:

>

><< I just meant to

> remark on some of the things that have helped me and if they help even one

> other person, that is great.

>

> Thanks for listening.

> - Marti

> >>

>Some of the active stuff you can do would break my feet in 1/2 .. Fusions

ya

>know.

>jenny

>

, just reading all Marti does, wore me out! Whew! Just

kidding Marti, its great that your able to keep doing the things you enjoy.

And I hope you never have to slow down, my son now 10, has CMT also, so I

have hope he will remain active and live a full life as you seem to being

doing with your CMT. Welcome to the list, >Becky M.

[Guest guest]

In a message dated 5/26/00 11:57:52 PM, jacee17@... writes:

<< I hope you find that cute brace when you do let me know:) >>

Have you ladies checked out the Virtual Gait?

I know nothing about it, but it's different.

<A HREF= " http://virtualgait.com/pages/frames.html " >AFO VirtualGait Network:++

Graphite Orthoses and …</A>

http://virtualgait.com/pages/frames.html

Click on Orthotics (on the left of your screen)

Isn't that Helix something else???

The site has quite a bit of information on the various pages.

Kat in Seattle

[Guest guest]

Becky:

Wow, it does sound like you've had a hell of a hand dealt to you

lately! I agree with you on the laughter front.. My thoughts and prayers

are with you as is my laughter.

Thanks for your response.

- Marti

[Guest guest]

-----Original Message-----

From: Regan, MD <klydesid@...>

egroups <egroups>

Date: Saturday, May 27, 2000 2:41 PM

Subject: Re: [] Introduction and some tips...

>Hi all. Marc here >

>While, for me, " no pain, no gain " might not be a completely true statement,

>I believe " use it or lose it "

When I was first diagnosed, I exercised to build up my

muscles, I belonged to a local health club and was used to going 3-5 times

per week. I continued going and continued to loose muscles FAST. Seems

like the more I do the faster I loose, so I stopped. I do stretching each

day to keep my remaining muscles flexable. Its so strange how CMT affects

each of us in so many different ways. We are confused by our CMT being so

different for each of us, imagine how confused the medical profession must

be! >Becky M.

[Guest guest]

Hi all. Marc here. I want reply to the middle of a discussion

(unfortunately, I've had some problems with my email program and have loss

many messages). Anyway. What I would like to say is that CMT seems to take

many different forms (as we all are well learning here). As I have mentioned

before, I was affected young. CMT came on fast and hard for me in my

preadolescent years. By the time I was 14 I could no longer stand unaided

and was using crutches and AFOs to walk.

However, since the age of 16 or 18 there has been quite a small degree of

progression. I am still using the crutches in the same manner as I did as a

teen. During those teen years I began lifting weights in an attempt to

combat the CMT progression; I am still doing this.

The reason I feel that it is important to mention this is because for me it

has been so tempting to give up. All it has taken at different times in my

past to have me throwing in the towel was a few logical sounding or

scientifically backed sentences saying that I could not do this or that and

that this disease would progress, leaving me fighting for quality of life. I

was told by a doctor that I would be unable to sit up by 16yrs. of age and

would be dead by thirty or thirty-five. Crazy, huh?

It may wind up being true about the struggle to maintain quality of life; it

may be true now (maybe I just am careful not to look at in those terms)... I

do not know about the future - a future I may never see - but I do know

about today. Today I have a choice; smile or frown. It is as simple as

that - in the face of pain, disgrace, loss. I, personally need to focus on

what I CAN do, on what I HAVE, etc.

My point here is that, given the multitude of faces CMT assumes, we should

always face possibilities and the future as positively as possible. We must

support each other as we try to find the thing that works for each of us

individually.

I do not think that it is positive to say to fellow CMTers that vigorous

exercise, sufficient to cause a lactic acid buildup in the muscles, is not

advisable for those with CMT. While this may be true for some, I am proof

that it is not true for all. I know the statement to which I refer was

qualified by saying that many have found this to be the case. Still, I feel

such statements are potentially dangerous.

While, for me, " no pain, no gain " might not be a completely true statement,

I believe " use it or lose it " is. I must work my muscles, keeping them

strong and stretched, or they begin to atrophy.

Please understand that my intention here is not to challenge or dismiss

anyone's words of experience. I have simply noticed that SOME of the

messages seem to be more focused on limitations and what we can't do than on

what we can, on what we struggle with instead of what we excel in.

I firmly believe that CMT is a gift I have been given. Some call it a

disease or a syndrome or a birth defect; I call it a gift. Sometimes I do

not like this gift and resent the fact that it's been given to me, but my

attitude does not change the possibilities available to me. I have learned

so much through the course of my 41 years, much of which I doubt would have

been learned without CMT. I have learned tolerance and patience, and I've

developed a way of perceiving things creatively. When I approach a situation

I encounter obstacles which other folks might just run past. I must think

creatively about get passed such challenges.

I am sure that I am not saying anything that all of us don't know first

hand. But it is SO easy to forget, to become discouraged, to give up. I

know. I gave up for a number of years, drowning my confusion with alcohol

and numbing the pain with substances. And I had to fight to get back what

those years lost me.

I guess the bottom line is that I cannot afford to give up, to give in; I

need to stay very positive. This requires serious work. Mentally,

spiritually, physically, emotionally; you name it. I have pain and serious

falls and suffer embarrassment and frustrations... But I know that I must

get right back up again. You know, seize the day and all that. And if there

were any gift I could give to each of you it would be the spirit to do the

same.

I don't no exactly what it was that possessed me to write this, but... I

would love to hear about our successes, the obstacles we have overcome, our

hopes, dreams... These are so important for folks with disabilities (which

really includes everyone breathing air). Thanks for hearing me out. Peace,

Marc

----- Original Message -----

From: Lamar son <lls@...>

<egroups>

Sent: Friday, May 26, 2000 9:16 PM

Subject: Re: [] Introduction and some tips...

> Marti,Lamar here,

> You have a very positive outlook. It is wonderful that you are able to do

> things many of us never could and others have lost the ability to do. I

> once could do many of the things you mentioned and found them good for me.

> The negative aspect is that activity became my main escape mechanism. I

> went from racing bicycles to being unable to keep my feet on the pedals of

> an exercise bike. Climbing 100 foot pines to install antennas and prune

> them to having a problem stepping up on a curb. You sound very near where

I

> was at 30. Now at 52 the tools that once worked no longer do. That is

why

> I am having to look for other means to relieve my stress. As a fellow

> mental health professional, I am sure you have learned that the real

values

> of any support group are multi faceted. You vent frustrations, and find

new

> methods to cope as well as the empathy of others. (Anyone that has ever

> worked with AA learns the value of their " drunk-a-logs " )

>

> I applaud the tools you have found, but urge you to remember that many

have

> found that vigorous exercise, sufficient to cause a lactic acid buildup in

> the muscles, is not advisable for those with CMT. The damaged muscles do

> not recover as rapidly or efficiently and this can contribute to the

> progression. 'No pain, no gain " is NOT true for CMT and exercise. I do

> hope you are finding other things to enjoy and relieve stress in the event

> the ones you describe are no longer available..

>

> I am curious about the petroleum jelly and AFO's. I do not see how this

can

> work. I would think it would take a very heavy application to offer

> protection from the straps rubbing, and that it would still be limited in

> how long it would last. It would actually make the skin more tender and

> impede the evaporation of perspiration thereby increasing the likelihood

> of yeast or fungal infections. It certainly would provide no cushioning

or

> absorbency. Do you use a heavy application or light one? How often do

you

> re-apply? Since petroleum products weaken nylon, does it damage the

straps

> and Velcro? (I would think that it would at least make them " attract "

dirt).

> It sounds good, but I recall the skin damage I had from one day wearing

mine

> with short socks, due to irritation from the straps, and would hesitate to

> try it. I have had three different ones and found the " Toe-Off " works

best

> for me in addition to it being lighter and more comfortable. I have heard

> that clear AFO's are available that would be noticed less, but have not

> found them..

>

> As for vanity, I lost mine rapidly. When I got AFO's I could barely walk

> without them. The same when I went to a cane to prevent falls. I had to

> start using a walker following back surgery in Feb. but am trying to use

> the cane again for some things. Assistive or adaptive devices become

> friends, and what others may think is their problem. Shorts with my AFO

no

> longer worry me like they once did. In fact I find that now people can

see

> there is a problem, there are less stares and comments than when I

staggered

> like a drunk. ( I once had three breath tests in a roadblock before I

> convinced the officers I had not been drinking---LOL)

>

> Good luck on your endeavor to start a support group. I do have cousins in

> sburg, VA (near Richmond) that have CMT. I would like to start one

> myself, but have had no cooperation from MDA about sending out a notice.

(I

> know they can't give me the information, but they could advise of a

meeting

> or contact without violating confidentiality). I only know one other

person

> with it within 100 miles, so I have come up with no viable plan.

>

> Welcome to the list.

>

>

>

>

>

> ----- Original Message -----

> From: <mmc3737@...>

> <egroups>

> Sent: Friday, May 26, 2000 10:24 PM

> Subject: [] Introduction and some tips...

>

>

> > 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

> >

> >

> > ------------------------------------------------------------------------

> > Failed tests, classes skipped, forgotten locker combinations.

> > Remember the good 'ol days

> > 1/4053/10/_/616793/_/959394267/

> > ------------------------------------------------------------------------

> >

> >