Re: Welcome Jyll

[Guest guest]

Hi Jyll, and welcome to the forum. I think most doctors would advise

against genetic testing if you are without symptoms. With positiive

tests, you are tagged with a pre-existing condition which may affect

your ability to get health and life insurance. Plus, if you know what

type your family has, I'm not sure what benefit you'd get from genetic

testing.

One thing about your dad. His foot sounds like my foot! The reason I

mention this is that just today I got a brace called an SMO

(Supramalleolar Orthosis) which is specific to this condition. It

really seems to stabilize my foot. It's something he might want to

consider.

Helen

[Guest guest]

Oh, I know there is no way to predict anything... I just hope to

gleen some knowledge and ideas from all of you so I can help to make

recommendations to my dad. Although, I also think he will probably be

innundated with advice once he sees his family for the first time in

years. Hmmm, didn't think of that! They haven't seen what a hard time

he has getting around...and they will jump on him like crazy, I bet!

I appreciate the welcome...

(it's freezing here and it's not even November! Yikes! I am so, not

ready for winter!

>

> Thanks for your introduction, Jyll, and again, welcome to .

Don't

> know how we can help 'stubborn' Dad, but sometimes using even a

cane,

> or taking a supplement like Vitamin C can make a big difference in

> one's quality of life. There isn't a doctor or other person on this

> planet that can 'predict' how Dad's CMT will progress/or not

progress.

> I hope he has a good time visiting the relatives.

>

> ~ Gretchen ( Founder and ELC)

>

[Guest guest]

Well, I have no clue what type we seem to have...I could email my

aunt and have her tell me.

Yes, we were discussing thsoe supports/braces when all of my

brothers and sisters were here for my mom's memorial. Trying to get

dad to consider one. He does have dropsy...I think that's the

term...with that foot. But, yeah. My nephew who is a dentist/oral

surgeon and my brother who is an EMT, and I (who only play a Dr. in

my family)were trying to get him to just check into getting support

for that foot and ankle...

Hah...we will see. These ex-military guys are hard heads! I just

don't want him falling any more. And I think if he had some

stability, he would feel more confident getting around, more stable,

and could prevent the spills he has. I do not mean to make it out as

if he falls all the time or even frequently, but he will get to

hurrying, that foot will get hung up, and down he goes. And he is

not a big man, by any means! He's about 5'5 " and MAYBE, MAYBE

dripping wet, 130 lbs! He has lost muscle already, you can tell

that. And I think he gets more tired...

Anyway, I think his neice, the Dr will probably send him home with

all sorts of advice and recommendations, so that will be good. She's

my age...

Good to get to know you all!

Jyll

>

> Hi Jyll, and welcome to the forum. I think most doctors would

advise

> against genetic testing if you are without symptoms. With

positiive

> tests, you are tagged with a pre-existing condition which may

affect

> your ability to get health and life insurance. Plus, if you know

what

> type your family has, I'm not sure what benefit you'd get from

genetic

> testing.

>

> One thing about your dad. His foot sounds like my foot! The

reason I

> mention this is that just today I got a brace called an SMO

> (Supramalleolar Orthosis) which is specific to this condition. It

> really seems to stabilize my foot. It's something he might want to

> consider.

>

> Helen

>