Re: ataxia

[Guest guest]

Hi Gretchen, And thanks for the welcome. Gee it seems welcome not to have to

explain ataxia everywhere I go. I get most of the information about the disease

right here at ataxia groups. Did they do a blood test on you? The way I

understand, that's the only way they can tell for sure if you have it. I'm still

a bit unclear about CMT.

I was always focused in my perception, just had poor balance. As I progress, the

dizziness is worsening. I am 63, my symptoms started when I was 56 I have spino

cerebral ataxia type 3 (SCA3). I understand, the severity of your disease is

determined by the kind you have, and how far it has progressed. At last count, I

think they are up to 27 or 28 different kinds. Frederick's, and SCA3 seem to be

the most prevalent.

I use a power chair outside, own my own home. My neighbor is like a daughter to

me, comes to check on me every day. Seeing to it I have enough food,and washing

dishes. The woman I was living with decided to leave. Her plan was to take my

truck(I don't drive) all the appliances out of the house, I was supposed to roll

over and play dead. I can't cook, no transportation. I'd have to go into a home.

Leaving her free with a new truck she hadn't payed a dime for.

Well it didn't quite go as planed. I took my power chair to a close by cafe for

two days, for something to eat, hired someone to spot the truck, and stole it

back, and had the locks changed. So she's living with another woman (I don't

even want to go there) with all her nick knacks, no income,no transportation,

and none of the appliances. And guess who the locale law enforcement protects,

they have been no help to me whatsoever. Told me to put a flag on my power

chair.

I'm over 50, will I ever learn. My neighbor is half my age, not married, has the

keys to my truck, and I give her money to shop with. I trust her. That's what

makes it all seem sane,she comes to help me every day. We have to trust someone.

Kenny/SCA3/63/Mo

[Guest guest]

Hi Kenny,

No, I have not had blood tests. My CMT was diagnosed first, and

originally by an orthopedic surgeon who watched me walk the halls of

his office building. (this was as a child) The DNA blood tests were

still about 35 years away.

Subsequent EMG/NCV testing on me showed all normal readings, with

reinnervation, suggestive of CMT Type 2.

CMT affects us all uniquely according to our own unique genetic code.

CMT also affects family members very differently.

~ Gretchen

[Guest guest]

Hi Gretchen,

Isn't that strange. Everyone with ataxia seems to have their own differences

also . Although we all my share the same symptoms, according to our rate of

progression, mine didn't start till my 50's, someone else my have started

symptoms at 20. My system will not tolerate certain drugs, while others may have

a drug usage history. God has surely made us all unique. I hope I can mention

Him once in a while here. I was severely attacked at a different group for just

a casual reference.

Kenny/SCA3/63/Mo

[Guest guest]

Hello Gretchen,

This is interesting as the orthopedic surgeon who operated on my toes

did not suggest any possibility of neural involvement about 59 years

ago. He said, " Your bones grew too long for your muscles and tendons. "

His conclusion was to remove some of the bones in my toes!

This doctor was the draft board orthopedic advisor and chief orthopedic

doctor for the famed Newington (CT) Childrens Home. I have seen that

operation in a surgeon's atlas, but I really think it never was an

operation connected to CMT. Later, we were concerned about my second

son and they suggested putting staples in his shin bones to control his

height development which I flatly refused to do.

EdM from NH

> No, I have not had blood tests. My CMT was diagnosed first, and

> originally by an orthopedic surgeon who watched me walk the halls of

> his office building. (this was as a child) The DNA blood tests were

> still about 35 years away.

[Guest guest]

Thanks Dennis,

I no longer drive, my son goes to a Baptist church, I'm sure I'd get some help

there, BUT I have an outstanding neighbor. She's thirty and I'm 63, kinda like

the unruly daughter I never had. For some unknown reason she treats me like I

was her dad. And, like a father I tell her, don't bother with that guy, you can

do much better than that. We just got over a squabble about her choice, or lack

of it, in men. She likes to drive my truck, so halls me wherever I need to go.

Now, about the CMT. I was diagnosed with ataxia, aside from the breathing

problem, it's like CMT. My swallowing problem comes from a lazy muscle. That

seems to be how ataxia works. The signals from my brain to the muscle seems to

be interrupted. If my brain tells me to scratch my back, I might poke myself in

the eye first, then scratch my back. It seems like, the more I think about doing

something, the less chances I'll have in getting it done. It just bothers me,

because the state goes to allot of trouble, sending help to people who don't

need it, while I eat from unwashed dishes because I can't wash them. I don't

even own any glasses to drink from. Far to dangerous. I use plastic whenever

possible, especially for drinking. If I drink from a cup, I have to be very

careful, or I'll choke. Not so with a plastic bottle. If I'm thirsty I can swig

the whole thing without choking.

Kenny