WOW! Thank You ALL for your heartwarming response...

[Guest guest]

To MY Family,

When I woke up this morning, I had received an email from the author of

the MDA article, with a subject line that simply read, " It's UP! " I

couldn't wait to read it, yet I was a bit hestitant. However, my fears

were quickly put aside when I read the wonderful job the author,

Medvescek, had done. I was happily surprised that she honored

her word, when I asked to her to put a link to information about

Dejerine-Sottas/CMT in the article (and if you've checked out that link,

you can see how little info there is on my disease.) However, I wanted

to give the readers (without CMT) a chance to learn more about CMT!

I have received so many wonderful replies from many of you, that I just

wanted to express my gratitude to all of you, not just in response to

the article, but - for EVERY word, bit of advice, moment you've taken to

REALLY listen - for your guidance and your well wishes.

I was waiting, and it was hard to wait, to answer the question regarding

'continuing to let the child play the piano,' until this article came

out. Please,let them play, let them learn, let them explore, let them

grow, not into 'disabled' adults, but adults who MAY be somewhat unable

to do EVERYTHING. Besides NO ONE can do EVERYTHING, right? There are

many healthy, so called 'normal' or 'able-bodied' people who choose NOT

to live life to it's fullest. Let your children do whatever they are

interested in doing, support them, encourage them, help them find

creative ways around their obstacles, and be their to catch them if they

fall - help them up and they will choose, on their own to continue, or

try a new direction. Just love them and support them. I may seem a bit

emotional on this subject, but I was 17 when I was rediagnosed

accurately with Dejerine-Sottas and I made my own personal choice to

stop the 'bad' gene. I had a tubal ligation when I was 18. I have always

intended to adopt a child and it is TOPS on my list, when I am

finacially secure to due so.

I grew up in the days, without bike helmets, seatbelts or knee pads - we

learned the hard way that you don't speed down a giant hill on your bike

with no hands - It was also a time without support groups and even more

importantly a time of unitentional 'ignorance.' Because my doctor told

my mother I would never really experience any affects of this disease

when I was a child, she never put 2 & 2 together - the painful leg

cramps at night, falling down and knocking out my two front teeth only

weeks after the permanent ones grew in, waking up and not having the

ability to make a fist for most of the day. When you belive that

something is 'normal' to you since childhood, it IS NORMAL to you. Heck,

here's two good anologies - I grew up in Amish community and I believed

that Amish people lived everywhere - I saw the Vietnam war on TV and

thought Vietnam was somewhere across the Susquahanna River, near

burg. Normal is what you believe is normal. We are fortunate in

some ways. I received an email from a woman who read the article who has

ALS. Here's what she wrote:

" Dear Judy,

Good luck with your film career. It's great to see your determination

even

though you have Dejerine-Sottas Disease. Don't let anything stop you!

I'd

trade places with you in a heartbeat. How about you? I have Lou

Gerhig's

disease also known as ALS. People like me and many others with MDA

related

diseases are in your corner, rooting for you to make a big name for

yourself. "

" I'm looking forward to seeing your movie! "

" You go girl! "

G.....

So let the children play, let us all reach for the stars. My mother

named me Judy " Garland " Piersol, not only because she adored her, but

because she wanted me to to take the journey over as many 'rainbows' as

I could.

So thank you again for your encouraging words, for I believe we are ALL

fighting the good fight.

Peace & Love to each and everyone of you.

Judy Garland Piersol

aka-Judy g