New member

[Guest guest]

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

From: ktbugg54@... <ktbugg54@...>

egroups <egroups>

Date: Friday, July 14, 2000 9:36 AM

Subject: Re: [] new member

REMEMBER MONKEY BARS AT THE PLAYGROUND?

>I WANTED TO WALK THEM SO MUCH, BUT COULDN'T. ARMS JUST WOULDN'T LET ME.

>KATIE

>

OH WOW ! You just brought back a memory for me, the monkey bars at

school! I could never play on them and I wanted to very much like the

other children, but never could, I didn't have the strength for it. Now at

least there was a reason for it (too little to late for hurt feelings as a

child) ~>Becky M.

[Guest guest]

In a message dated 7/14/2000 2:46:52 PM Pacific Daylight Time,

ktbugg54@... writes:

<< IT'S EASIER FOR

ME TO DO IT ALL THE SAME SINCE THE FINGERS DON'T WORK WELL. I CAN , OF

COURSE

NOT CAPITALIZE ANY WORDS. IF IT HELPS, I DON'T MIND.

>>

For the same reason sometimes I don't use any caps. You do what you feel

comfortable with.

Welcome

[Guest guest]

KTbugg54, Lamar here,

It is well proven that lower case is kinder on the eyes. It takes much less eye

strain than caps, with every letter the same size. In " computerese " all caps is

considered to be SCREAMING as well. LOL

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

From: ktbugg54@...

egroups

Sent: Friday, July 14, 2000 5:45 PM

Subject: Re: [] new member

OH I BET I CAN BRING BACK MORE MEMORIES IF I TRIED. I ALWAYS MADE A DRAMATIC

ENTRY TO SOME OF MY CLASSES IN HIGH SCHOOL. WE HAD A BUILDING WITH 3 FLOORS.

MOST OF THE TIME I FELL DOWN THE STAIRS.

WHY IS IT EASIER TO READ LOWER CLASS SPELLING, JUST CURIOUS. IT'S EASIER FOR

ME TO DO IT ALL THE SAME SINCE THE FINGERS DON'T WORK WELL. I CAN , OF COURSE

NOT CAPITALIZE ANY WORDS. IF IT HELPS, I DON'T MIND.

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[Guest guest]

Hi , nice to meet you....

I am I dream of Jeanie age 39. I've had CMT since age 5. I'm married with 2

kids and a cat.

I've also had triple arthodesis on both feet plus heal chords lengthed, right

lower leg straightened and right ankle fused solid. I wear an AFO on my left

foot and use 1 to 2 arm crutches to get around. I also have an electric

Wheelchair with a lift seat that has changed my life. I now can cook and

clean. I take Welbutrin for my depression and vicodin for my pain. My hands

are also affected, they get weak quickly and if I over use they will hurt and

I won't be able to grip anything. hey are not deformed though. I also see a

Therapeutic Massage Specialist that has changed my life. I went from very

very sever pain to pain.

By the way..... Thank-you to everyone on this list for always being there

when I fall apart. Jeanie

[Guest guest]

sorry lamar, is this better. now i have to put on my glasses.

[Guest guest]

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

From: ktbugg54@... <ktbugg54@...>

egroups <egroups>

Date: Friday, July 14, 2000 4:32 PM

Subject: Re: [] new member

>OH I BET I CAN BRING BACK MORE MEMORIES IF I TRIED. I ALWAYS MADE A

DRAMATIC

>ENTRY TO SOME OF MY CLASSES IN HIGH SCHOOL. WE HAD A BUILDING WITH 3

FLOORS.

>MOST OF THE TIME I FELL DOWN THE STAIRS.

>

>I was the tallest in my class at the time, hum, coming to think of it maybe

I was the tallest in school at that time! So I was tagged, The jolly green

giant.

Well, that makes one feel good about them selves right? NOT! Then to top

it off, I was so clumsy, and sports were out, as I never could manage to

keep from tripping over my own feet. And I loved to play tennis, but was

very very bad at it! I too had those wonderful lets see the school from

this angle? The floor? Rolling down the slope from the school entrance!!!

Yikes! And I had to wear dress's or skirts back then eons ago. What fun!

Gee am I glad those days are over, (school) LOL, ~>Becky M.

[Guest guest]

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

From: Lamar son <lls@...>

egroups <egroups>

Date: Friday, July 14, 2000 8:23 PM

Subject: Re: [] new member

>KTbugg54, Lamar here,

>

>It is well proven that lower case is kinder on the eyes. It takes much

less eye strain than caps, with every letter the same size. In

" computerese " all caps is considered to be SCREAMING as well. LOL

> ----- So Lamar, quit screaming your laughter, Ha-Ha, gotcha,

lol~>Becky M.

[Guest guest]

I doubt any of us could do much in physical education. I sang in choir and I

play the piano some.

[Guest guest]

I couldn't do monkey bars either or walk on narrow forms, or run or do

handstands etc. I did physical education at school from the age of 5 until I was

13 and then one doctor decided I couldn't do it and stopped me. I didn't mind, I

used to play my French Horn instead, I could and still can do that

Love Sue XXXX

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

From: Maxwell

egroups

Sent: Friday, July 14, 2000 8:17 PM

Subject: Re: [] new member

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

From: ktbugg54@... <ktbugg54@...>

egroups <egroups>

Date: Friday, July 14, 2000 9:36 AM

Subject: Re: [] new member

REMEMBER MONKEY BARS AT THE PLAYGROUND?

>I WANTED TO WALK THEM SO MUCH, BUT COULDN'T. ARMS JUST WOULDN'T LET ME.

>KATIE

>

OH WOW ! You just brought back a memory for me, the monkey bars at

school! I could never play on them and I wanted to very much like the

other children, but never could, I didn't have the strength for it. Now at

least there was a reason for it (too little to late for hurt feelings as a

child) ~>Becky M.

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

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

[Guest guest]

I think has hit the nail on the head. People with CMT should learn when to

stop and take life easier. I know it is difficult but if you can do it you do

feel a lot better.

Love Sue XXXX

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

From: ktbugg54@...

egroups

Sent: Friday, July 14, 2000 3:28 PM

Subject: Re: [] new member

MY CHILD WITH CMT IS DOING FINE. SHE IS 26 YRS. SHE NEVER HAD AS MUCH TROUBLE

GROWING UP AS I DID. NEVER HAD THE SPRAINED ANKLES. ME, THAT'S ANOTHER STORY.

I FELL OFF OF THE SCHOOL BUS SEVERAL TIMES, RIGHT ANKLE SPRAINED SO MANY

TIMES I LOST COUNT. FELL AT SCHOOL, JUST WALKING FROM CLASS TO CLASS. I'VE

HAD TRIPLE ARTHRODESIS ON RIGHT ANKLE IN 94. LAST DECEMBER HAD ANOTHER

SURGERY TO REMOVE CALLOUS AND CORN CAUSED BY TOO MUCH PRESSURE. HANDS HURT A

LOT. JUST PACE MYSELF, AM LEARNING WHEN TO QUIT INSTEAD OF JUST KEEP GOING

LIKE I USED TO DO. ALSO HAVING A LOT OF MUSCLE SPASMS IN UPPER LEGS.

KATIE

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[Guest guest]

. You mentioning tennis made me realise something. When I did do physical

education at school, I could hold a badminton racquet and play but a tennis

racquet always felt heavy and to hit a ball with it nearly killed me. Now I know

why.

Love Sue XXXX

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

From: Maxwell

egroups

Sent: Saturday, July 15, 2000 3:01 AM

Subject: Re: [] new member

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

From: ktbugg54@... <ktbugg54@...>

egroups <egroups>

Date: Friday, July 14, 2000 4:32 PM

Subject: Re: [] new member

>OH I BET I CAN BRING BACK MORE MEMORIES IF I TRIED. I ALWAYS MADE A

DRAMATIC

>ENTRY TO SOME OF MY CLASSES IN HIGH SCHOOL. WE HAD A BUILDING WITH 3

FLOORS.

>MOST OF THE TIME I FELL DOWN THE STAIRS.

>

>I was the tallest in my class at the time, hum, coming to think of it maybe

I was the tallest in school at that time! So I was tagged, The jolly green

giant.

Well, that makes one feel good about them selves right? NOT! Then to top

it off, I was so clumsy, and sports were out, as I never could manage to

keep from tripping over my own feet. And I loved to play tennis, but was

very very bad at it! I too had those wonderful lets see the school from

this angle? The floor? Rolling down the slope from the school entrance!!!

Yikes! And I had to wear dress's or skirts back then eons ago. What fun!

Gee am I glad those days are over, (school) LOL, ~>Becky M.

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

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

[Guest guest]

Hi , welcome aboard the CMT train, I am new here also, I live in Coeur

D'Alene ID and enjoy reading the mail here. Most of the info is very good,

some is very funny and so on, hope you enjoy being with the rest of us. jr

[Guest guest]

, I take 40-60 mg of oxycontin for my pain, I know sometimes I am too

drugged to do anything, but it is better than the pain. I find the pain to

sometimes leave me totally gone! Sometimes it is bad enough I can only cry,

that is when I take that extra oxycontin and lay in my recliner and entertain

my family. I can get very goofy when I take that 5th pill. Anyone else have

a suggestion? -jr

[Guest guest]

Jr ...

Read my post on pot and pain.

[Guest guest]

In a message dated 7/18/00 9:53:57 AM, jross56922@... writes:

<< I take 40-60 mg of oxycontin for my pain, >>

Welcome.

What type of pain do you have? Nerve? Structural? Other???

Do you have a name? How are you doing other than the pain?

Good luck.

Kat

[Guest guest]

Hi JR

Hope you enjoy the group too. Learning a lot from everyone.

[Guest guest]

JR, right now i'm taking ultram. most of the time it helps, other times does

not. I'm like you, I lay in my recliner, try to relax, sometimes my muscles

jump every time I get relaxed and almost asleep. I do have a good MD, he

seems more interested in helping me to relieve the pain than anyone. Seems

like our MDA clinic just isn't interested in me. I live just outside

knoxville, tn.

katie

[Guest guest]

Hi JR, my name is Jeanie and I'm your neighbor from Oregon.

Have you ever tried a Therapeutic Massage Specialist? Not Reiki

The reason I ask is because last summer my CMT in regards to pain was out of

control. I was on Neurontin and Flexeril and Vicodin. At night I would take

up to 5 500mg of Vicodin, 2 to start and then 2 hours later another 2 and if

that didn't take care of it in half an hour I would take the 5th....

My pain was out of control. I would sit in bed crying and rocking myself.

When I'm in pain I rock myself and make a sound like nananananananana over

and over. It was the only way I could deal.

Then a miracle happened. I won a raffle. The raffle was for a free massage

session. I was going to give it to my dad who also has CMT but he refused it

so I used it.

Now I know that not every massage person is the same. But this is what

happened with mine.

That night I had NOOOOO PAIN. I decided to go back to him 1 week later and

had no pain for 1 WHOLE WEEK. Again I waited a week and returned. This time I

had no pain for 1 month, I was able to go off my Flexeril and Neurontin and

I'm down to 1 or 2 Vicodin a night. I still have pain. But NOTHING like what

I had before.

Do you ever visit Portland, Oregon.... ?? If so, I know Dan would fit you in.

He is affordable. He only charges $45.00 for a one hour session. This guy is

not doing this for money but to help people.

I hope you find relief soon..... Your new friend, Jeanie

****************

In a message dated 7/18/00 9:53:57 AM Pacific Daylight Time,

jross56922@... writes:

<< , I take 40-60 mg of oxycontin for my pain, I know sometimes I am too

drugged to do anything, but it is better than the pain. I find the pain to

sometimes leave me totally gone! Sometimes it is bad enough I can only cry,

that is when I take that extra oxycontin and lay in my recliner and

entertain

my family. I can get very goofy when I take that 5th pill. Anyone else

have

a suggestion? -jr

>>

[Guest guest]

Hi, Jeannie ...

I see you mentioned Portland ... just wanted you to know that I love that

city. Do you ever visit 's book store? Now THAT place is a REAL

addiction ..!!! )

[Guest guest]

Joyce, Lamar here,

If you have Type 1, even if you are a spontaneous mutation, you have a mutation.

Each child you have has a 50% chance of having CMT. Whoever told you otherwise

is badly wrong.

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

From: Martha Kamens

egroups

Sent: Friday, July 21, 2000 12:42 AM

Subject: Re: [] New member

Welcome Joyce. My name is Martha I am 46 and I live in Colorado. I have CMT as

well. However mine is a spontaious mutation. It means my family has no hystory.

It just happened. I am so glad you could join us.

Joyce <jp20@...> wrote:

Hi everyone,

I just want to introduce myself. I am 36, live in Ireland and have

CMT type1.

My brother and sister also have CMT but there is no other family

history. We

were told that we could not pass it on to our children, however my 12

year old

daughter is now showing mild signs!

My own CMT caused some problems duing my teens ten did not progress

until my late twenties when over about 5 years I progressed from

being very

active to being a wheelchair user.

Joyce.

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

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

[Guest guest]

Welcome Joyce. My name is Martha I am 46 and I live in Colorado. I have CMT as

well. However mine is a spontaious mutation. It means my family has no hystory.

It just happened. I am so glad you could join us.

Joyce <jp20@...> wrote:

Hi everyone,

I just want to introduce myself. I am 36, live in Ireland and have

CMT type1.

My brother and sister also have CMT but there is no other family

history. We

were told that we could not pass it on to our children, however my 12

year old

daughter is now showing mild signs!

My own CMT caused some problems duing my teens ten did not progress

until my late twenties when over about 5 years I progressed from

being very

active to being a wheelchair user.

Joyce.

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

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

[Guest guest]

Welcome Joyce.

I live in Shropshire (next to the W elsh border) in England and I have CMT2.

We only discovered in January why I couldn't walk and then we looked around and

discovered my father, my sister and my two eldest sons have it, but thank God

not anywhere near as severe as I have it. There also seems to be problems

'further a field' in our family but we'll see.

Have fun and you'll learn a lot from these guys - believe me.

Sue

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

From: Joyce

egroups

Sent: Friday, July 21, 2000 12:24 AM

Subject: [] New member

Hi everyone,

I just want to introduce myself. I am 36, live in Ireland and have

CMT type1.

My brother and sister also have CMT but there is no other family

history. We

were told that we could not pass it on to our children, however my 12

year old

daughter is now showing mild signs!

My own CMT caused some problems duing my teens ten did not progress

until my late twenties when over about 5 years I progressed from

being very

active to being a wheelchair user.

Joyce.

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

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

[Guest guest]

HI Joyce, and welcome. I hope we'll hear from you sometimes. We learn a lot

from one another. One biggie we learn is how different from each other we

are, with regard to how CMT treats us, yet we have a lot in common as well.

We were in Ireland in 1960 and my husband has been there recently, so I hear

it is as green and beautiful as ever, and the people are still friendly to

tourists.

Regards,

Kat in Seattle Washington, USA - the Evergreen State (if you don't count the

eastern half which is mostly brown unless it's irrigated).

So far in July we've had 3mm or .12 OF an inch of rain. So we are brown too.

The usual in summer for us.

[Guest guest]

Joyce, welcome

My name is Jeanie, I don't know what type of CMT I have, age 39 married 2

kids (no CMT w/kids). I live in Oregon, USA.

My CMT involves my legs, feet, and hands. I use arm crutches and a

wheelchair as needed. I wear one AFO.

Hope you enjoy the list..... Your new freind, Jeanie

[Guest guest]

Dear Moderator,

Thank you for enrolling me as amenber of the AIDS_-INDIA eFORUM.I look forward

for the experince sharing messages and other news which willbe really worth

knowing.

I am wrking inthe field of AIDS prevention and Control Programme under NACO as

the head of the Finace and Accounts Unit of the Kerala State AIDS Control

Society which is implementing the programme in the state of Kerala.I do a bit of

reaserch inthe cost effectiveness of the Programme and various methods of

monitoring and Evaluation. I also arrnge training programme for the NGOs and

other related personnel on my field One of my papers has been accepted for the

Barcelona Conference .

My prfile can posted in the Forum Lokking for further union

Yours sincerely

KRISHNAKUMAR

FINANCE OFFICER

KERALA STATE AIDS CONTROL SOCIETY

E-mail¨krishnakumar K.P " <kaypeekrishku@...>

_______________________________