Re:Digest Number 683; hands, exercise, Carolyn

[Guest guest]

Friends;

I too have very " old " hands! (been told I have hands

of a ninety year old woman) Lots of people would ask

me, " what is WRONG with your hands? " I have always

been really self conscious about my hands and would

try to hide them before I knew what was wrong. (I

assumed and even told people I had arthritis) I

couldn't button buttons; do zippers,hold a pen or

pencil very long, put on my own earrings (pierced) and

other fine motor skills easily. I have the " webbing',

wrinkles,skin and bones look,lots of lines and also

deformed joints.

I wore nail polish and even learned to do things like

the sculptored nails look to " pretty them up " .( oldest

daughter had to do them for me for I never had steady

enough hands to do my own)I also would wear lots of

flashey rings to distract from my hands. . LOL

Funny thing to me; a few years back, my mother ran

into one of my best friends I had in elementary

school; (I'd lost contact with her over the years for

I married and moved away at age 17 yrs) One of the

first things she told my mother is that she had always

admired my " dainty " hands; So small and petite. .

..(, you mentioned it was like they never quite

filled out)I had to laugh for I told Mom, " she

wouldn't think so now " . . .

My hands were the first clue , actually, in getting me

diagnosed with CMT. After going for a regular

physical,I ask him for a prescription for pain meds.

I'd lived with pain for better than 10 years and my

feet had starting hurting the same so decided to ask

for help. I felt for my kids sake, I should get

relief, for sometimes I wasn't very nice due to pain.

Made me very cranky and " nasty'.

My regular GP took one look at them and said, " nope

that isn't arthritis, arthritis don't cause muscle

wasting;something neuro-muscular is going on; most

likely you've got MS, MD(polymyositis) or Lupus! " He

ordered a complete blood test, which he didn't read

properly and told me (over the phone)everything looked

fine, accept I was severely anemic( I had been my

whole life and he wasn't telling me anything new; I'd

already told him that!). Of course, I swore doctors

didn't know anything, and didn't care! I'd wasted my

money on a $300.00 blood test ( demanded a copy of it

for my files), but wouldn't keep wasting it!

5 months later, after some severe back and knee

problems, I was referred to see a diagnostic doctor,

the same blood test was read and he discovered my CPK

was elevated almost 4 times the normal!

MORAL; Hands can and do tell allot! But, ugly and weak

as mine are, I am sure glad I still have some use of

them. However, limited and frustrating they are at

times!

RE: On Exercise. . . Doctors at Mayo warned me NOT to

exercise , but " Mildly and regularly active " is the

way my doctor advised! In other words, don't stop

walking and moving as much as you can but don't strain

to walk distance. . .find ways to do things without

stressing the muscles. . . remember the reason we have

weak muscles are two fold. . . #1 over use can " burn "

precious muscle tissue that our body (due to DNA

defect) does not have ability to regenerate or

rebuild!

#2 nerves are damaged so they do not stimulate

(misfire or slow conductions) normally to keep the

muscle functioning. . so we must find ways to manually

stimulate in areas this atrophy is happening so we

don't lose what we have. Deep Breathing Exercise

regulary is a good addition to any exercise rpogram

and you can do these laying or sitting! ( Oxygen is a

good stimulate for the whole body; drinking water is

addition of oxygen to system)

Well, I didn't mean to be so long winded but it's

hard to put into few words our lifetime experiences of

the path to finding CMT.

CAROLYN:

Lots of hugs, prayers and support are going out on

your behalf! Here's a little encouraging poem. . .as

you said it's not Sunday but sometimes a little

inspiration is in order. .

I ASKED GOD

I asked for a flower,

He gave me a garden.

I asked for a tree,

He gave me a forest.

I asked for a river,

He gave me an ocean.

I asked for a friend,

He gave me " YOU. "

=====

" I THANK GOD FOR MY HANDICAPS, FOR, THROUGH THEM, I HAVE FOUND MYSELF, MY WORK,

AND MY GOD. " - Helen Keller

" TO MAKE A FRIEND TAKES BUT A MOMENT. . . TO BE A FRIEND TAKES A LIFETIME "

" FRIENDS ARE LIKE PILLARS; SOMETMES THEY LEAN ON YOU; SOMETIMES THEY HOLD YOU

UP! "

LIBBY'S HOMEPAGE www.geocities.com/charcot_marie_tooth

(^-*) (CM)LIBBY IN ARKANSAS

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