Re: progression changes, help requested

[Guest guest]

Hi ,

You didn't mention what type of CMT is in your family. I am not sure what CMT I

have but I assume I have Type 1A.

I have written in the past about the strength I have been gaining in my hands

from taking Vitamin C. I Iost the use f my pinch muscles in the fourth grade. I

am now almost 40 and to my surprise I actually have some pinch now. I had my

hand strength tested when I first started vitamin c. I was a 5 on my right hand

a 2 on the left. After several months I was a 7 on the right hand and a 7 on the

left. My results actually had my doctor curious about vitamin C.

I have been sewing and ripping threads out all week with less then half of the

trouble and pain I used to have when I used my hands like this. I have gained

so much from just taking a vitamin.

I am sure I am in a progressive stage of CMT. My right foot is giving me trouble

now. The progression started way before I was taking vitamin c. Even with the

progression I am able to feel a difference in muscle mass. I can now move toes

that I have not been able to move since I was 4 or 5. I do hope that the

progression slows down soon so the vitamin c can start to catch some of it and

repair it.

Part of my progression is stress related.

I hope you go back into the archives and look at the ascorbic acid / vitamin C

posts. Also there is information on it in our Files section. If you have any

questions please let me know.

[Guest guest]

Hi ,

I'm in a 12 step program too. Yes, CMT can be difficult, but keep on

with the program. One of the best tools it has given me is writing a

daily " gratitude list " - even for such small things. You would be

surprised at all I can be truly gratefull for.

Whatever you do, do not pick up that first drink. Alcohol and drugs do

nothing to help our nerves, and will only make things worse.

I can't help you with the progression, but perhaps you willl get to the

point of acceptance on day. You can also work the 12 steps on CMT and

anything else for that matter. In the meantime, since you live in

Seattle, 2 of the absolute best CMT docs are there, and you may want to

check in with them to help get your health in order. They are Drs. Greg

and Phil Chance at the University of Washington.

Life is about change - always. Life is also a day at a time, or break

it down to living 5 minutes at a time if you need to. Please email me

privately if I can help in anyway. There is a Seattle support group,

I'll look up the info and post later.

~ Gretchen

[Guest guest]

:

Not being negative is very difficult. Everyone in this group has

been/will be negative sometime in life.

The late comic Henny Youngman had a shtick where said:

Henny: Doctor it hurts when I go like this.

Doctor: Don't go like that.

Simple but directly on point. Try not to focus on what you can't do.

Focus and do those things you can do.

Everyone (at least me!) wakes up every morning and tries to find out

what ability left in the night. If its gone, don't do it!

As to wives supporting us -- marriage takes two people who walk on two

legs each and make a single person who walks on three. Let the

testosterone go and support your wife by doing all the housework you

can. Me, I make breakfast, feed the dogs, shop on Tuesday to get the

5% senior citizen discount, help with dinner preparation, and sweep

the floor. These are all jobs she did before I took disability

retirement and am home.

Now, if God had meant men to use zippers and buttons, he wouldn't have

invented Velcro or snaps. I wear either pullover or western shirts

with snaps. Any trouser zippers can be replaced by Velcro, or add a

string/wire to the zipper tab that you can grab that still lies flat

and can lie hidden. I use plastic zip ties that both lie flat and give

me a knurled surface to grab.

As to drinking, use a sports water bottle that has a straw.

As to looking at the past to predict the future, forget about it. This

bloody disease has so many twists and turns. You may never reach the

levels you saw in your father. Besides, with all the new devices

becoming available, many crippling issues may soon be handled through

electronics or chemistry.

-- Larry

[Guest guest]

In a message dated 8/21/2006 9:24:15 A.M. Pacific Daylight Time,

shieldlp@... writes:

Not being negative is very difficult. Everyone in this group has

been/will be negative sometime in life.

Its just human to be upset and negative sometimes. I really get bugged by

people that never seem to be unhappy. I kinda hate them! lol