Welcome

[Guest guest]

Hi , I am 51. Yes, the future truly scares me, also. I try to ignore

it, but the thought always seem to be lingering in the back of my mind. It

sounds like our " bodies " are at about the same place.

Patti

[Guest guest]

welcome catherine. good to have you here. I look forward to reading more

about you,. Cathleen in Arkansas

[Guest guest]

Nice picture of you Francesca, in the Washington post front page

article, Tuesday, May 4, 2004; Page A01

TinyURL: http://tinyurl.com/3xfel

LongURL: http://www.washingtonpost.com/wp-dyn/articles/A64170-2004May3.html

Fantastic! You were the spotlight personality in the write-up.

Thank you for taking the trouble to interview, and for getting

the CR message out.

All you new members just joining -- This is a friendly group!

Please be sure to " check in " and say " Hello " by posting a new

message introducing yourself! -- Warren

=========================

On 04 May 2004, Francesca wrote:

> Welcome to all our new members. About 50 new people joined our

> group, in the last 24 hours no doubt due to today's front page

> article in the Washington Post.

> I expect we'll have more newbies before the day is out.

>

> I have my 15 minutes of fame! Nice picture of yours truly on

> the front page. I'll post the article.

[Guest guest]

> > Welcome to all our new members. About 50 new people joined our

> > group, in the last 24 hours no doubt due to today's front page

> > article in the Washington Post.

> > I expect we'll have more newbies before the day is out.

> >

> > I have my 15 minutes of fame! Nice picture of yours truly on

> > the front page. I'll post the article.

Hi All,

I personally have somewhat of an aversion to web sites requiring sign-

ins, so I include the below for those of us who may appreciate

alternative sites that seem to function directly for me. I hope that

the tables are not destroyed by the email system.

Cheers, Al Pater.

People from the United States and Canada,

http://my.webmd.com/content/article/85/98784.htm?lastselectedguid=%

7B5FE84E90-BC77-4056-A91C-9531713CA348%7D = CR human study saying 3

women were in it and the CRSociety has ~900 members on Apr. 2004.

http://mednews.wustl.edu/medadmin/PAnews.nsf/0/F76B2638BDB6CAE786256E7

6005D51F6 http://www.agi.it/english/news.pl?doc=200404191804-1195-

RT1-CRO-0-NF11 & page=0 & id=agionline-eng.oggitalia

http://www.wjactv.com/health/3020301/detail.html

Table 2: Risk factors for atherosclerosis

----------------------------------------------------------------------

------

Parameter CR Controls

P value

----------------------------------------------------------------------

------

Tchol, mg/dl 158 +/- 39 205 +/-

40 0.001

LDL-C, mg/dl 86 +/- 28 127 +/-

35 0.0001

HDL-C, mg/dl 63 +/- 19 48 +/- 11

0.006

Tchol/HDL-C ratio 2 6 +/- 0 5 4 5+-1 3

0.0001

TG, mg/dl 48 +/- 15 147 +/- 89

0.0001

TG/HDL-C ratio 0 8 +/- 0 3 3 5 +/- 2 8

0.0001

Syst BP, mmHg 99 +/- 10 129 +/- 13

0.0001

Diast BP, mmHg 61 +/- 6 79 +/- 7

0.0001

Fasting glucose, mg/dl 81 +/- 7 95 +/- 8

0.0001

Fasting insulin, mIU/ml 1 4 +/- 0 8 5 1 +/- 2

0.0001

Hs-CRP, ug/ml 3 +/- 0 2 1 6 +/- 2 2

0.001

----------------------------------------------------------------------

------

Values are means +/- SD

IU, international unit; Hs-CRP, high-sensitivity CRP; mmHg +/- 133 Pa

Table 3. Serial measurements of risk factors for atherosclerosis in

CR individuals

Parameter Pre-CR 1 yr CR

Present

----------------------------------------------------------------------

------

BMI, kg/m2 24.5 +/- 2.6 20.9 +/- 2.4 19.5

+/- 2.1

Tchol, mg/dl 194 +/- 45 161 +/- 31 157

+/- 38

LDL-C, mg/dl 122 +/- 36 89 +/- 24 86

+/- 17

HDL-C, mg/dl 43 +/- 8 58 +/- 13 65

+/- 24

Tchol/HDL-C ratio 41 +/- 1 2.8 +/- 0.5 2.5

+/- 0.4

TG, mg/dl 149 +/- 87 72 +/- 35 54

+/- 15

Systolic BP, mmHg 132 +/- 15 112 +/- 12 97

+/- 8

Diastolic BP, mmHg 80 +/- 11 69 +/- 7

59 +-5

Values are means +/- SD for 12 individuals.

" Our data show that CR

results in profound and sustained beneficial effects on the major

atherosclerosis risk factors, serum Tchol, LDL-C, HDL-C, TG,

and BP, that usually increase with advancing age. They further

show that CR provides a powerful protective effect against

obesity and insulin resistance, and provide evidence for a

decrease in inflammation, as reflected in extremely low CRP

levels. "

In addition, there is a popular press account of the study from

WebMD, which

quotes are very own Delaney and Khurram Hashmi.

[Guest guest]

,

I don't have children with CMT diagnosed yet. I just found out that is what I

have been battling and I am 51. We are discussing testing our adult children but

so far no one is complaining. I can relate to your daughter. I don't like

anything touching my feet either. I do give in and wear my " special shoes " It

has helped. Take care and good luck.

Lynn

[Guest guest]

Hi Dale,

I have four children (and am pregnant with my 5th child) and even the

same kind of CMT can affect people differently as our bodies are all different.

My oldest son is more severe than I am and I am 35 years old. Any questions you

have you

can email me anytime. The key for me is to have a positive attitude as much as

possible and to relax when my body tells me enough is enough.

Heidi

[Guest guest]

Hi Spy,

Thank you for your welcome. I am feeling very scared

right now, due to not knowing what this disorder can

or will progress to. My neurologist said it would

probably stay below the knees, that I would benefit

greatly from leg braces, and other than that I would

lead a " normal " life.

However, after reading some of the comments on the

chat group, it appears there are some very great

variations to this disorder.

If you are up to answering questions please let me

know, as it is a little intimidating discussing

certain things in the group as a whole. Who knows I

may become more confident with this as time goes by.

Thanks again.

Dale

[Guest guest]

HI, ,

Hey Glad to meet another CMTer in Southern CA! I am in the Antelope

Valley. Where are you? I am 36 and my story is about the same as yours.

[Guest guest]

Hi June, I was wondering where you have been keeping yourself. I'm

sorry to hear about the problems your having with your cut, that

sounds awful. You just be careful with it, you sure don't won't an

infection.

I hope that your Thanksgiving went well, and you had a nice day with

family. I did manage to cook dinner, but after all that, we have

decided to go out for Xmas. It was just way too much for me. But,

today I'm resting, and doing absolutely nothing, which is nice:)

Well, you just take care of you, and know that I'm keeping you in my

prayers, hugs T

> Due to a fall where I cut my elbow badly on my left arm on the

inside of the elbow. They tried to stitch it but the stitches

wouldn't stay in. My right arm is cut on the outside of my right

elbow but didn't require stitching. This, along with all my medical

appts and tests has kept me away from my computer, other than to read

my mail. Yesterday where the cut is on my left arm, split wide open

so I now have a very large bandage on it. I figure it can't open up

any more so to heck with it, which is why I am back.

>

> Seeing so many new members is heartwarming and I would like to say

from the bottom of my heart, I am so happy you found this unique

group to share with. Ken, your poem touched me and I have printed it

out to keep on my desk. Due to my advancing years I cannot for the

life of me get caught up enough to remember who posted what so I will

just say, to those of you in pain, that I pray you get some relief

soon and to all my wonderful, dear friends, try to not overdo with

baking, shopping etc. I love you all and look forward to getting to

know the new members who all seem to be a perfect fit with us.

>

> More later.

>

> Hugs & Love

> June

> The silly old lady that can't stay upright.

>

>

[Guest guest]

June,

So sorry you had a fall. I hope your cuts heal with no complications.

You've had so much going on lately between your knee and ankle.

Staying upright can be challenging! I hope your rheumy visit went

well today and your scan is ok so you can go ahead with the surgery.

Do you still see your grandsons a lot?

a

On Sat, 27 Nov 2004 15:38:20 -0500, June Dixon <juner24@...> wrote:

>

> Due to a fall where I cut my elbow badly on my left arm on the inside of the

elbow. They tried to stitch it but the stitches wouldn't stay in. My right arm

is cut on the outside of my right elbow but didn't require stitching. This,

along with all my medical appts and tests has kept me away from my computer,

other than to read my mail. Yesterday where the cut is on my left arm, split

wide open so I now have a very large bandage on it. I figure it can't open up

any more so to heck with it, which is why I am back.

>

> Seeing so many new members is heartwarming and I would like to say from the

bottom of my heart, I am so happy you found this unique group to share with.

Ken, your poem touched me and I have printed it out to keep on my desk. Due to

my advancing years I cannot for the life of me get caught up enough to remember

who posted what so I will just say, to those of you in pain, that I pray you get

some relief soon and to all my wonderful, dear friends, try to not overdo with

baking, shopping etc. I love you all and look forward to getting to know the new

members who all seem to be a perfect fit with us.

>

> More later.

>

> Hugs & Love

> June

> The silly old lady that can't stay upright.

>

>

[Guest guest]

Thanks T for your thoughts. Being Canadian, we had our TG in October buy my

niece is up from Ohio so my sister is having us all over for dinner. Christmas

is now held at one of my sons' house and my wonderful DIL's do all the work. All

I have to do is make the trifle and some pies, I just cannot do it any longer,

there are too many of us now and since it was them that wanted to continue the

tradition of a home cooked Christmas dinner, I leave it up to them. Both my boys

are accustomed to helping so I know their wives are not having it all to do.

Good idea that you are going out for Christmas. It makes no sense to make

yourself sick trying to carry on when your health does not allow it.

Hugs

June

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

From: Tawny

Hi June, I was wondering where you have been keeping yourself. I'm

sorry to hear about the problems your having with your cut, that

sounds awful. You just be careful with it, you sure don't won't an

infection.

I hope that your Thanksgiving went well, and you had a nice day with

family. I did manage to cook dinner, but after all that, we have

decided to go out for Xmas. It was just way too much for me. But,

today I'm resting, and doing absolutely nothing, which is nice:)

Well, you just take care of you, and know that I'm keeping you in my

prayers, hugs T

> Due to a fall where I cut my elbow badly on my left arm on the

inside of the elbow. They tried to stitch it but the stitches

wouldn't stay in. My right arm is cut on the outside of my right

elbow but didn't require stitching. This, along with all my medical

appts and tests has kept me away from my computer, other than to read

my mail. Yesterday where the cut is on my left arm, split wide open

so I now have a very large bandage on it. I figure it can't open up

any more so to heck with it, which is why I am back.

>

> Seeing so many new members is heartwarming and I would like to say

from the bottom of my heart, I am so happy you found this unique

group to share with. Ken, your poem touched me and I have printed it

out to keep on my desk. Due to my advancing years I cannot for the

life of me get caught up enough to remember who posted what so I will

just say, to those of you in pain, that I pray you get some relief

soon and to all my wonderful, dear friends, try to not overdo with

baking, shopping etc. I love you all and look forward to getting to

know the new members who all seem to be a perfect fit with us.

>

> More later.

>

> Hugs & Love

> June

> The silly old lady that can't stay upright.

>

>

[Guest guest]

Hi and welcome,

I too am new to this group but my experience in just a few days has been

tremendous. They are all very supportive, knowledgeable people who I'm hoping

to get to be great friends with.

I was just diagnosed with CMT type 2 a few days ago after living with feet pain

all my life. My symtoms have come on really fast recently so this is all a bit

of a shock to me. But the first thing I did was look for support groups and

forums and I think I have found a fantastic one right here.

Congrats on your baby. How wonderful for you. You sound like a very

positive person and I'm sure you're going to fit in fabulously here.

Elaina.

[Guest guest]

Welcome to you and your family,

I have just joined this group as well but feel I will gain alot of support,

encouragement and knowledge from all of the other participants. I can relate

to you feeling that maybe your dad feels guilty. I cannot seem to trace where

my CMT has come from. To our knowledge there is nobody on my mother's side and

my father's side I will never know. Since he passed when I was young and I

never got to know my siblings that I have from my father, there really is no way

of knowing where this has sprouted from.

Yet my mother feels awfully guilty. Even though there has never been any sign

of it on her side of the family, I think since she is the only parent I've ever

known she feels it's her fault.

You'll get a great deal of hope from this group. Glad you joined.

Elaina.

[Guest guest]

,

Hi, and welcome...I only heard a few other people mention things about their

voice. I know I mumble sometimes and am wondering if it's because I don't

have the energy to use my vocal cords like they're supposed to be. It's

embarrassing and has been like this for years.

I always tell people, " my ex never listened to me, so I talked to myself " , and

actually believed it, it could be true, but the more I hear people talk about

their speech, maybe I'm wrong.

Alot of times on the phone people think I'm a man at first. Anyway, this is a

great place to be and has helped me alot...Everything will be O.K.

Oh, one more thing, I'm trying different things recently, and I think the

vitamin c is helping me with endurance. Also am drinking green tea, at

least 2 cups a day, and love tea anyway, so there I go!!!

Take care,

[Guest guest]

Thanks Gretchen and B. for your kind welcome.

A bit about myself I suppose as I will be asking questions in this

forum from now on and you may want to know who is asking. I live in

Sydney Australia and am 41 yrs. From childhood my parents knew I had

problems with my feet. This was also the case with my Father who

hadn't been diagnosed with anything neurological but had a

considerable amount of orthapaedic surgery.

I was diagnosed pre-teen with a familial ataxia (no specifics). My

Father died young so I wasn't able to see any progression in him. I

have gone a route which (with my limited knowledge of CMT) many of you

have gone. Surgery in my early teens until about my mid twenties to

correct pes cavus, shortened achilles, muscle imbalance, etc. All

this seemed to work for sometime. I still didn't have much stamina

and tripped occasionally (much better than the horrific falls of

childhood when I wondered if I would still have knee caps left). In

the last six years things have got worse, with twisted ankles and

trips and stress fractures. Last year I got ToeOff AFO and this has

helped, though the lifespan of them is less than six months and

Australian Insurers pay less than 10% of the cost of one pair every

two years.

Things on the walking front went okay after using the AFOs. But the

neuropathy increased (not helped by huge amounts of alcohol which I

stopped using two years ago) as did the tremors I have had since

childhood. Last week I went to a Neurologist who provisionally

diagnosed CMT. I go for the EMG and conductivity tests in ten days.

The one thing is living here in Australia we are only 20 million

people. I hadn't known much about CMT (nor did my family doctor).

This forum is great. The issues I have had with the ToeOffs seem to

be shared and spoken about here (these problems only just being know

to the Orthotists in the clinic here), as do many other things I can

relate to. So thanks for sharing.

It is important to me to retain a full time job where I am able to do

hands on large computer installations. I want to keep mobile and

doing normal activities for as long as possible.

Wish me luck in stopping smoking - the Zyban started yesterday. This

is the first step in dealing with CMT.

My regards to all in this forum. Keep well, keep doing it and have fun.

[Guest guest]

Hi ,

I was told at the age of 28. I am 43 years old now and still going strong. I

had to give up work after a few years because I was in retail and on my feet

all the time. I just couldn't work any more. The company I worked for were very

good to me I was lucky in that way. I am now at home and doing what I can,

when I can.

All my best to you

[Guest guest]

Welcome ,

Glad you found us! I joined recently and have found everyone to be helpful.

Look forward to learning more about you.

Elaina/NY

[Guest guest]

Dear ,

I was diagnosed with CMT at 28 yrs. I have five children two of which have CMT.

One of my children is to be tested in July. So one can be positive about having

CMT and learning to deal with it or one can choose to be negative and become

very self-pitying. I choose the positive. I know it is challenging but one must

remember that CMT is only part of who they are.

Thanks,

Heidi

[Guest guest]

Welcome ,

I am 32/m married male. I have had CMT since I was a child but had a diagnosis

for over 7 yrs. I have learned to control CMT by diet and life style. I have CMT

type 2 if you want help in not letting this get out of hand email me back and I

can give you my number. My son has CMT. He is 4 and my wife has been with me

for 13 yrs so she knowns it well.

[Guest guest]

,

So glad to meet you and that you'll try to contribute to the Neuropathy

Conference there in MN. I live in MO, too far to travel, although I have some

friends in MN and have plans to spend this Christmas with them. MN is too cold

for me. I can't stand cold or heat, so I have a terrible time adjusting to

temperatures, and Missouri weather is so changable, my pain medication even gets

confused on what I'm taking.....LOL.

I have recently found wrist supports that help my hands tremendously, and I have

changed my soft orthodics to some hard plastic ones with interchangable inserts,

through Walkfit.com.

Hope to see more of your postings. I'd tell you to send some of your snow down

here, since we had very little of it this year, but I think Spring has Sprung!

Debbie

[Guest guest]

Welcome ,

I'm glad you found this group. It's helped me in the two short months I've

known about CMT. Hope to see you posting often.

Elaina/Upstate NY

[Guest guest]

Welcome , great place to get lots of information.

[Guest guest]

Hi and welcome.

My son is 15 1/2 and also has CMT. He wears his AFOs everyday for school and

whenever we are going to be out and about walking. I'm sure would very

much like to talk to someone near his own age that is going thru the same issue

as he is. Perhaps you could send an email to us direct? We are located in PA,

and you?

Take care

[Guest guest]

Hello ,

Welcome to the group. Your comment about walking to the right really made me

laugh as that is what I can do also. My kids have always commented on it. That

is one of the reasons that I use a cane now to help with the issue. Again

welcome!

Sharon

[Guest guest]

Hi ,

Welcome to the group. I know you will find this group very helpful,

I know I sure have. I know how you feel with the doctors I live in

KY and I have found very few doctors here that know anything about

CMT. All of the ones that I have seen tell me the same thing. But it

is good to have people to talk to that live with the same thing that

know what you are going through. I have trouble walking also, I

think it is time I get braces. I look forward to talking to you

more. Have a great day.

Sue