my introduction

[Guest guest]

Colette,

Thanks so much for getting back to me. I am hoping things will get better

soon, but if the past is any look into the future, it doesn't work that way.

I had the good fortune of one very special thing to come of all this mess in

my life and that is my meeting of my soon to be husband. At the time we met,

(ONE YEAR AGO TODAY, ONLINE!!! ONE YEAR ON THE 14TH IN PERSON!!!) I still

thought they were going to do surgery on my back not disable me.

It was January 16, 2000, when I first heard the word CMT_HNPP and it was June

before was able to get into s Hopkins and I got a clinical diagnosis, I

still have not had the genetic blood test. My health insurance refuses to pay

for it. It has been appealed three times and is now in the hands of the

Attorney General. " THEY WILL LOVE ME AFTER THIS ONE " right? In the last year

I have really gone down hill and I am fighting to get better.

This site has made a world of difference already, being able to connect so

easy with others, that aren't just living with me, or my friends who knew me

before it took this bad of a turn, my family that probably thought I had a

loose screw all these years, a new family, that's what you and the other

CMT'ers feel like to me. We are in a family of our own, because no matter

what the rest of them see or hear, they cannot feel what we live with. I

thank them for the love and the understanding they try to have, but there are

times when I can see the disappointment in their eyes. What happen to that

crazy, wild Mom they had. Despite all the years of he_ _, I had always

maintained a very busy life in between the episodes of severe illness. Even

my girlfriends seem like they are grieving over the loss of the friend I used

to be, they could call on a moments notice and I would be ready (Pain or no

Pain, I went) to go and do whatever, from coffee to dancing all night long,

except in cold weather and they knew not to bother. But I live at the beach

so in the summer it was beachin and dancin! The last time I tried to dance,

after breaking the leg, I had a ball, then started getting volts up my leg

and sat out the rest of the evening. I haven't been since, it kills me to

think of watching and not dancing. Now the only thing dancing is my fingers

on this computer. LOL

" Listen to your Body "

" ADD LIFE TO YOUR DAYS, NOT DAYS TO YOUR LIFE "

[Guest guest]

Correction on date first heard of CMT was January 16, 2001

[Guest guest]

thanks Hug appreciated...You guys will really spoil me too much.... I love

it.

Colette Zyrkowski, R.D., M.P.H.

Office of the Director

Epidemiology Program Office

(404) 639-3191 or (404) 639-4779

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

From: sylvershine@... [mailto:sylvershine@...]

Sent: Tuesday, October 09, 2001 5:08 PM

Subject: Re: [] My Introduction

*would give Colette a BIG hug*

I understand....try to keep your chin up....

It's definately hard to change ... I faced that this weekend.

I also had a knee problem a month or so ago ....

Welcome to the Newsgroup ...

*smiles*

On Tue, 9 Oct 2001 14:26:51 -0400 " Zyrkowski, Colette " <coz1@...>

writes:

> Unfortunately, I guess my has gotten to the point where I am

> different from

> the person than I was in the past. I used to be able to walk

> around. Oh

> I'd stumble a bit and fall every now and then. But hey, I'd just

> laugh it

> off. Then I had an accident which led me to a knee replacement.

> really bad

> accident. I fell in a hole and tore everything that would tear and

> broke

> everything that could break in and around the knee. so to put

> humpety

> dumpety back together again ... they replaced her knee. It was then

> I never

> reclaimed the great self I once knew. even with extensive physical

> therapy.

>

>

> So I walk so bad and fall so much I am in an electric scooter. So

> folks at

> work have seen me go from walking just three years ago to now

> basically

> charging down the hall in an electric scooter like a mad women.

> Same old

> smailing face.

>

> the reason I brought it up was that my one friend here thinks I

> should let

> folks know since they have watched me change. And now that I know

> what the

> problem is....

>

> By the way I am 47 years old... So it is hard for me to adjust on

> this. But

> some of the things the doctors asks about in my childhood. Starts

> to make

> things a little clearer to me.

>

> Anyway. Thanks for your advice... but most of all... Thanks for a

> place to

> have somewhere to chat and have some new friends ....

>

> Colette Zyrkowski, R.D., M.P.H.

> Office of the Director

> Epidemiology Program Office

> (404) 639-3191 or (404) 639-4779

>

>

>

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

> From: Ada Wylie [mailto:amw@...]

> Sent: Tuesday, October 09, 2001 1:16 PM

>

> Subject: Re: [] My Introduction

>

>

> Hi Colette. Regarding your question about telling co-workers:

>

> My CMT isn't " obvious " to those that aren't near and dear to me.

> So, only

> a couple of friends here at work know about it. (But I'm sure

> everyone

> here would agree that I am clumsy.) I'm not ashamed to tell

> EVERYONE....it

> just hasn't come up. Although, I've thought about conveniently

> leaving CMT

> information on the breakroom table.... -Ada

>

>

> At 12:07 PM 10/9/2001 -0400, you wrote:

> >Hi!

> >

> >I am new to and The first e-mail I read after joining is the

> one

> about

> >the career survey. It really sparked my interest. I have tried to

> join a

> >chat room and boy was that a mess. I guess I am not as literate as

> I

> >thought on the computer. But a listserve, now this I can handle.

> In fact

> >we have many of these at work and I believe that they help to focus

> our

> >energies quite well.

> >

> >So when I saw this message about careers, I thought it the perfect

> chance

> to

> >introduce myself to you all. My name is Colette and I live in

> Georgia. I

> >have only been diagnosed with CMT 1a and 2a three weeks ago. Can

> you

> >believe it a double wammy. I still am having a difficult time

> believing

> it.

> >But I guess the tests don't lie, especially the DNA for type 1a and

> the

> >nerve biopsy. I probably still am in shock and grieving and most

> days am

> >nearly a mess. But I am trying to take baby steps. Then today

> this e-mail

> >pops up at work and WAM! What a baby step for today. So I said to

> myself

> >take it! And here I am, instead of working. But I will get back

> in a few

> >to that too.

> >

> >I can't believe that it was it only four years ago that I could

> walk and

> >garden and take long beautiful walks around the lakes of Stone

> Mountain.

> >For those of you that don't have a clue about Stone Mountain, It is

> about a

> >six mile winding trail. I could take care of myself - no maid,

> no one to

> >mow my lawn, trim my bushes, ect. you get the picture. Well, I

> digress...

> >

> >One way to tell you about me is to tell you start with my career.

> My

> career

> >is my lifesaver. I absolutely love what I do. I work for the

> government.

> >Ok, Ok, you all can stop laughing now. Really, it has provided me

> with a

> >lot of challenges and support in my life. Sometimes in ways that

> most

> folks

> >will never know. Before I get into " the job " . Let me tell you

> about " my

> >family "

> >

> > " My family " , aka the government, as you well know, before being

> diagnosed

> >with CMT, is a very frustrating time, you know something is wrong,

> you are

> >in pain, falling down a lot, and crying to so many different

> doctors for

> >help with no answers that you want to scream every time you hear

> the words

> > " the tests are normal " . Am I just nuts or what. With all of this

> you take

> >a lot of time off of work for appointments and because you hurt so

> bad you

> >can't move. You run out of time to take off. What do you do.

> Take time

> >without pay? How can you pay your bills? More stress upon stress,

> your

> >conditions seems worse for this stress... and the cycle really

> takes its

> >toll. But for me the story is a little different because of " my

> family "

> >they have a wonderful program called the donated leave program

> where folks

> >can help each other out by donating vacation time to those in need

> either

> >for themselves or for those who have family who are very ill and

> they must

> >take care of them. Once I was out of work for a period of two and

> a half

> >years and folks around here donated over 3,600 hours so I could get

> the

> care

> >I needed and not worry how I was going to keep my house and eat.

> Basically

> >I work with a bunch of workaholics who do not use much vacation

> time. When

> >I was well earlier in my career, I did the same for others....

> >

> >Now for what keeps me happy. " My family " is very versatile. I can

> do just

> >about anything I choose. What I have chosen started out working

> out in the

> >community with pregnant women and children to assure they were

> eating right

> >and growing well, then off to state health departments to work on

> developing

> >policy a bit to ensure the care that mothers and children were

> getting was

> >appropriate and was resulting in good outcomes and finally I became

> what I

> >feared most a bureaucrat. Well at least of sorts. I didn't think

> it would

> >be so much fun to be a bureaucrat. I've been able to travel to all

> 50

> >states and provide them with my expertise in maternal and child

> nutrition

> >and health, epidemiology, and statistical knowledge. I've been

> able to

> >conduct some research and I've honed my management skills.

> >

> >So what else do I keep myself busy with. Well someday, I would

> like to

> >create jewelry. I love to collect gemstones and rocks, and

> minerals. I am

> >fascinated by nature. So if I am ever ready again, I would love to

> go back

> >to the zoo to volunteer, not at the children's zoo, but maybe

> somewhere

> >behind the scenes where they need help. I am quite the collector

> of

> >Svowrski Crystal figurines... I love to sit at night with the

> lights out

> >except for the light in my case and watch the sparkle come off the

> >figurines. It is so peaceful. I only collect flowers, birds, and

> fish.

> >Don't have a specific reason, but one has to put a limit

> somewhere...

> >

> >My favorite place to be is sitting on my back deck. My back yard

> has

> >bunches of trees. My neighbors to the back decided to do nothing

> with

> their

> rds so they just left their trees. In the summer, I can't see them

> so I

> >have bunches of privacy. In the winter, I love the crunch of

> leaves the

> >animals make. I have sighted over 60 varieties of birds from my

> deck. Of

> >course I feed them. Why else would they come to my yard! I also

> have

> >snakes, chipmunks, box turtles, squirrels, opossums, raccoons, and

> an

> >occasional fox. I love nature it helps to renew my strength. Plus

> I just

> >have to sit there and it comes to me.

> >

> >Now that I have CMT, I don't know how much of that, if any will

> change.

> For

> >the last three and a half years while I have been searching for an

> answer

> to

> >my problem to my muscle weakness, limb pain, and numbness. I have

> been

> able

> >to work. Traveling has been difficult for me, so I have stopped

> making

> >trips... But if a meeting is in Atlanta, I still am able to speak

> at them.

> >I can get into the office each day. So for now, I say that things

> are

> >fairly ok on the job front.

> >

> >As for time off for therapy (PT and Psycho) and the doctor that I

> still

> need

> >quite frequently right now, I depend on " my family to help get me

> through

> >those days.

> >

> >And now it looks like I have found new family who I can share

> something

> >else which is very special my CMT experience.

> >

> >What I would like to know is how did you all break the news to you

> work

> >about CMT or did you?

> >

> > Foundation: http://www..org

> >

> >

> >

[Guest guest]

Hi , When I was 16 I wanted to talk to other people with CMT so bad. I

felt like I was the only one in the world with " IT " . I am greatful we have

the internet now. Nice to meet ya!

33

5 kids

California

[Guest guest]

Hi, my name is Alan and I thought I would respond to your surgery

question. I have CMT and also have a badly herniated lumbar disc.

My ortho doc said that he would not want to do open back surgery on

someone with CMT because the nerves and muscles react poorly to the

shock of surgery and recovery time is longer than for " normal " folks.

Just something to pass along.

Alan

> Hi everyone,

> Just a brief history of myself... I am 35 years old (pushing 36 in

> the next few weeks...that's dreadful to think of). I had been told

> that some of my cousins and father had CMT and not until I took a

> pretty bad fall in '92 was I " offically " diagnosed with CMT Type

2.

> Things remmained rather status quo in my life... learning to

> wear " good " shoes and watching where you walk etc... In 1997 I

opened

> a window and turned my head at the same time and heard a popping

> sound and had terrible Left arm pain... not to bore everyone with

all

> the medical garbage (and I can say that because by profession I am

in

> the medical field!) it took 22 months and 8 doctors (some of which

> were " specialist " ) to figure out I had a ulnar nerve entrapment

> (nerve conduction studies did not show an entrapment until after

> someone made a diagnosis). I had the surgery in '99 and was

feeling

> great! No pain, no multiple dose of pain meds, sleeping great...

> Life was GREAT! Of course, it can't be a happily ever after

> ending... I fell in an unsanded parking lot walking into work this

> January. By the time I saw a doc. that afternoon I could not even

> turn my head. Once again I went through the system, finally

someone

> decided perhaps an MRI could shed some light on this pain. C5-6

was

> herniated in my neck and when I met with the neurosurgeon it was a

> classic herniation and the fact I had a hx of CMT was not an issue

> and everything should be fine. Well I decided that if it were that

> classical and he was so optomistic let us go ahead. 3 days post op

> my fingers began getting numb on both sides (pre op it was just on

> the left) and progressively going up my arms. By 8 weeks post op I

> felt as if I was wearing a thick pair of elbow length gloves. The

> symptoms range from numbness/ pain/ tingling/ burning/ coolness. I

> have little to no strength and difficulty with fine motor and some

> gross motor skills (espically being out in the cold). They have

done

> repeat nerve conduction studies that are showing no changes from my

> previous studies. The doctors in this area do not have much

exposure

> to CMT patients and my primary care MD is looking into the Boston

> area. My question is... has anyone experienced such a dramatic

> change in symptoms after surgery (my legs do not seem any worse

then

> pre-op? And what is your opinion on Neurontin? I have dosed

myself

> up to 300 mg BID without any affect that I can say made a dramatic

> change in my symptoms. Any thoughts would be appreciated, thanks

for

> listening to my story!

[Guest guest]

hello

this is my first visit to a chat room. I was

" officially " diagnosed with CMT about a month ago, as

i was under another surgeon who didnt recognise CMT.

I have numerous operations to both my feet over many

years. I am now awaiting surgery in the next 6-9

months, I am awaiting to have a triple arthrodesis,

even though i have lots of surgery i am still very

nervous. I have two small children. My eldest(7) is

showing signs of having CMT. there are many members of

my family (maternal) who have CMT. I have tried to

lead as normal a life as possible, as i find most

people are understanding once you have explained to

them. I hope i havent waffled too much.

__________________________________________________