Re: Hello and a Few Questions

[Guest guest]

Hi . I have a few suggestions that might help. First, get a pencil grip

and try putting it on your brushes. It will make them easier to hold. Second, as

far as walking at night. Try during the day to do some chores sitting down. I

have a stool that I sit on when I am doing dishes, I bring the laundry basket to

the couch (or better yet, Hubby does it for me, I fold them there.) I might

suggest a cane or walking stick, to help you keep your balance, a walker with a

seat might help you too, you can walk and if you get tired you can sit down for

a rest. If you want to be alone, I suggest you invest in a small hand held

walkie-talkie. They are light weight and you could summon help if you fall or

something. They are good for up to two miles. Or you could get a cell phone, but

you have to pay fees. For more information I suggest you get in touch with the

Muscular Dystrophy Association, they can help. Also visit the CMTA web site

www.charcot-marie-tooth.org

There are many chat rooms available to talk to others with CMT. Use Keyword

Charcot-Marie-Tooth. It will tell you where the chats are.

Welcome, and if I can be of any other assistance please e-mail me anytime.

Grmifo91@... wrote:

Hi Everyone, My name is Michele and was dianosed with CMT this past Jan.

I've known for a long time that I was inflicted, but have, until recently,

been in denial.I have a few questions. I'm sure they already have been

answered by someone, sometime, but I'm new in CMTUS, so please bear with me:

I love to paint and draw, but in the last few months, my hands cramp up and I

have alot of trouble with numbing and pain . It's mosty my right hand, since

that is the one I hold my brush or pencil with. Question: Is there anything I

can do at the time or before I start to paint, that will prolong the time I

can paint? I only last about 45 minutes to1 hour in the morning and even

shorter in evening, 15 minutes, tops. Question 2: My balance is very screwy

in the evening, and I have had to stop walking and practically stop all

activities in the evening, due to the increase of falling. Any ideas? I love

to go out and be outside, but if I've had a busy day, and my legs are tired,

I'm desperately afraid I'll fall blocks from home and not be able to get

myself up. Some of my family have walked with me, but I want to be able to

be by myself again and do my walking meditation. Are those days gone now?

Question 3: Does anyone know of a book about coping with this disease and

coming to terms with the future? Thank-you for any ideas and advice you can

give me. This is all new to me and I'm sure in time I'll accept my future.

Many Blessings, Michele

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

border= " 0 "

alt= " "

src= " http://adimg.egroups.com/img/5075/10/_/616793/_/960588345/ " >

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

[Guest guest]

---Hi Michele! My name is Sherry. I have had CMT all my life. I was

in denial until I was about 21 years old. It just was alot easier to

deny then it was to face that there is something wrong. It gets

easier just give yourself time. If you have always been a happy go

lucky person do not let the news that you have CMT change that

because you are still the same person.I have just lately started to

have problems with my hand also.I have gotten a pen that has a rubber

end on it and it makes it real easy to hold. I also paint and draw.

It was written to me about the brace tht is used for carbal tunnel

a'nd t has helped alot. My hand does not get tired as fast.It took a

little bit of time to get used to the brace,but now I can paint and

draw again.I did get all of these ideas from all the great people on

this site. I hope this helps a little.

Good luck your friend

Sherry

In CMTUS (AT) e, Grmifo91@a... wrote:

> Hi Everyone, My name is Michele and was dianosed with CMT this

past Jan.

> I've known for a long time that I was inflicted, but have, until

recently,

> been in denial.I have a few questions. I'm sure they already have

been

> answered by someone, sometime, but I'm new in CMTUS, so please

bear with me:

> I love to paint and draw, but in the last few months, my hands

cramp up and I

> have alot of trouble with numbing and pain . It's mosty my right

hand, since

> that is the one I hold my brush or pencil with. Question: Is there

anything I

> can do at the time or before I start to paint, that will prolong

the time I

> can paint? I only last about 45 minutes to1 hour in the morning

and even

> shorter in evening, 15 minutes, tops. Question 2: My balance is

very screwy

> in the evening, and I have had to stop walking and practically stop

all

> activities in the evening, due to the increase of falling. Any

ideas? I love

> to go out and be outside, but if I've had a busy day, and my legs

are tired,

> I'm desperately afraid I'll fall blocks from home and not be able

to get

> myself up. Some of my family have walked with me, but I want to be

able to

> be by myself again and do my walking meditation. Are those days

gone now?

> Question 3: Does anyone know of a book about coping with this

disease and

> coming to terms with the future? Thank-you for any ideas and

advice you can

> give me. This is all new to me and I'm sure in time I'll accept my

future.

> Many Blessings, Michele

[Guest guest]

When I went to physical therapy, that was a question I

had since I both draw, paint & write. He also

suggested shaking my hands after every five minutes,

going much slower, and resting periodically.

The best advice he gave me is to buy some tubing

insulation (that cylindrical foamy stuff) in a variety

of diameters, cutting them into a length of a few

centimeters, and slipping my pen, pencil or brush

through them. It gives me a much better grip, since i

don't have to clamp my hands as tightly around it, and

it can do whatever I have to do for a much longer

time.

They have them in hardware stores, and in the

catlogues I get for physical therapy stuff. I have

the websites written down somewhere around here, and

when I find them I'll let you know. They're really

alot of help.

.

__________________________________________________

[Guest guest]

Hi Michele:

I also love to paint but I don't have a lot of time to do it. If I did it

for extended periods, my hands would probably be fatigued. For tiny, skinny

brushes, I might try to make them fatter somehow so I didn't have to make

such a tight fist.

Re: your walking, I would strongly suggest you try some forearm crutches.

You'll never again have to worry about your balance and you'll be out

walking again. If you have drop foot that causes tripping, orthotics can

really help.

I do not know of a book on this disease, but I'm new to the group.

Best wishes,

Melody Cleary

Hello and a Few Questions

> Hi Everyone, My name is Michele and was dianosed with CMT this past Jan.

> I've known for a long time that I was inflicted, but have, until recently,

> been in denial.I have a few questions. I'm sure they already have been

> answered by someone, sometime, but I'm new in CMTUS, so please bear with

me:

> I love to paint and draw, but in the last few months, my hands cramp up

and I

> have alot of trouble with numbing and pain . It's mosty my right hand,

since

> that is the one I hold my brush or pencil with. Question: Is there

anything I

> can do at the time or before I start to paint, that will prolong the time

I

> can paint? I only last about 45 minutes to1 hour in the morning and even

> shorter in evening, 15 minutes, tops. Question 2: My balance is very

screwy

> in the evening, and I have had to stop walking and practically stop all

> activities in the evening, due to the increase of falling. Any ideas? I

love

> to go out and be outside, but if I've had a busy day, and my legs are

tired,

> I'm desperately afraid I'll fall blocks from home and not be able to get

> myself up. Some of my family have walked with me, but I want to be able

to

> be by myself again and do my walking meditation. Are those days gone now?

> Question 3: Does anyone know of a book about coping with this disease and

> coming to terms with the future? Thank-you for any ideas and advice you

can

> give me. This is all new to me and I'm sure in time I'll accept my future.

> Many Blessings, Michele

>

> ------------------------------------------------------------------------

> Never lose a file again. Protect yourself from accidental deletes,

> overwrites, and viruses with @Backup.

> Try @Backup it's easy, it's safe, and it's FREE!

> Click here to receive 300 MyPoints just for trying @Backup.

> http://click.egroups.com/1/4936/10/_/616793/_/960588344/

> ------------------------------------------------------------------------

>

>