Re: CMT doctors ask 2 questions - your response welcomed

[Guest guest]

It's the little things in life that matter, like fine motor control.

I am functionaly blind with my hands. I cannot do simple things like

pick up coins, tie my shoes without frustration, button my shirt

without looking, turn pages in a book. I only type 25 WPM and that is

the best I will ever do, even though I make my living at the keyboard.

I have to use major muscle groups to keep my balance because my fine

motor skills have virtually disappeared. This often leads to a

comical sway that makes me look drunk. A few nights ago I was locking

up the house and lost my balance and knocked my wife's favorite

picture off the wall. My 11 year old son came to my aid and cleaned

up the mess because he was afraid I would step on the glass without

realizing it, or cut my fingers because I used too much force when I

picked up the shards.

My wife and I laugh at the Visa commercial that shows a man struggling

to open a jar of pickles, then his wife grabs the jar and opens it

with a little flick of the wrist. The caption is, " Convincing your

husband to join a gym - Priceless. " This is my life.

I have been advised to avoid exercises that lift more than 30% of my

isometric maximum. This means that most forms of aerobic exercise are

out of bounds. I have to rest frequently to avoid over exertion and

exhaustion.

My mobility is limited to less than 3 miles a day, or I risk over use.

I would give almost anything to have normal fine motor skills and a

good sense of balance. Is that asking too much? I want to feel

texture, ice skate, play basketball - do normal things. I don't want

to fall against the wall and knock down pictures. I want to go to

arenas and walk up and down the stairs to my seat with confidence, not

wondering with every step if I am about to injur myself and others.

I am doing the best I can to live life to its fullest, but I am often

discouraged because my " fullest " is not really all that full. Paying

the price of overuse for a measly 3 mile hike is a harsh life.

I am faced with lifes harshness in almost every decision that I make,

including the decision that I made to simply type this message. I am

not sure how to make my life richer.

I am not sure how the limitations that affect almost every aspect of

my life can be aided or overcome. I wish I did.

Mike

[Guest guest]

Hi Gretchen:

I hope it is not too late to give a few of my thoughts on how CMT has

affected the quality of my life. What I am going to say may seem negative,

but I have a great outlook on life and I have ACCEPTANCE. Anyway here goes:

1. Keep in mind - I lived for golf, I had a real passion for the game. I

was used to playing over 50 rounds of golf each year, up to 2003. At this

time I could no longer walk 18 holes (so I used a cart, but that costs over

$30/round). My hands get so sore and I feel greater pain in my fingers for

3-4 days. I could not hold a golf club again for 3-4 days. I do not have a

solution for this one. Even a couple of Advil before I play doesn't work.

2. Shortness of Breath & Fatigue....As I told you a few days ago, my

shortness of breath is caused by my CMT. EMG/NCV on my phrenic nerve and

diaphragm, MIP & MEPS tests last week proved CMT was the cause. This causes

me to be fatigued and I usually need a nap each afternoon. My naps are

usually 1 - 2 hours. I find I am not able to enjoy the outside activities on

sunny days, especially the afternoons. Solution - I cram all I can do in the

mornings and evenings. This summer is going down as the BEST summer on

record for Southern Ontario. We had over 37 days over or at 84 degrees in

June to August. This fall is also the best. At 9 PM right now the

temperature is 60 degrees. Still T-Shirt weather, and I am missing out on

daytime activities. Solution(s)...I am now using a new CPAP machine at night

which gives me a more peaceful sleep and extra energy in the mornings. I am

also doing deep breathing exercises and I just got a palates CD from my

daughter. I also need to lose about 30 lbs....WALK WALK WALK.

3. PAIN - especially in my fingers/hands & toes/feet. I need to increase

the daily dosage of Neurontin. I am putting this off as it may be a cause of

my weight gain? And if this isn't enough, I have Osteo arthritis in my lower

back and scoliosis (vertical and horizontal). It actually hurts just to make

a fist with my hands when I am trying to loosen them up. I believe it is

hard on any of us who are fighting pain 24/7. This causes more fatigue.

4. Strength and Exertion. My hands used to be the most powerful part of

me. I am losing so much strength in my hands which means I can't do some

things I used to be able to do. Thank God I have a loving wife who does not

mind doing the " heavy work " . If I exert myself I start gasping for air which

forces me to sit or lie down for a few minutes. Talk about frustrating.

In closing there is no doubt that CMT has affected me physically, but at the

end of the day the quality of my life depends upon my attitude and

acceptance. At times I just need to drop back 10 and punt. Life is wonderful

to me because I make it that way. I am also the happiest I have ever been in

my short 56 years. If I want to be depressed all I need to do is sit down

and think only about me and get a case of the poor me. I choose not to get

into my head that way - I call it getting behind enemy lines. Don't go

there.

Kindest regards,