Friend with Dystonia

[Guest yoos]

Hi everyone!! It's been a while since I've posted on here.... I'm still using a windows smartphone though! (Dash)

I wrote the following email and sent it out, but I figured I'd post it on here as well... Thanks!

Hi,

I would like to start off by saying this is the first time I've ever sent a

message like this... This is totally legit and you can email me if you have

any questions. I have a very dear friend Millie who is suffering from a

genetic disease called Dystonia which has progressed rapidly and

aggressively this year. She's had focal Dystonia most of her life which

affected only one side of her body mildly and was not too painful. But for

the past year, and especially these last 6 months, her focal Dystonia has

shifted into generalized Dystonia. What that means is that instead of just

dealing with one side of her body having some functional difficulties which

have always been predicable and workable - she has now been on a rapid and

aggressive downhill decline physically. Each day that goes by new symptoms

appear making life more and more difficult. For those of you unfamiliar with

this condition - Dystonia is “a neurological movement disorder in which

sustained painful muscle contractions cause twisting and repetitive

movements or abnormal postures.” http://en.wikipedia.org/wiki/Dystonia

In the past six months things have progressed rapidly and aggressively. She

can barely walk 5 feet without getting exhausted and that is on the days

that she can stand straight - Dystonia causes severe muscle contractures

which often have her bent over in half. The pain is severe and she never

knows which muscles will be affected from day to day. At first it was just

one arm - now it is all over the body with multiple muscle groups affected

simultaneously. She has even cut almost all her hair off because she cannot

lift her arms to wash it. Friends are taking turns staying with her and

assisting her, as she cannot shower or dress herself anymore, nor can she

cook for herself. She has a hard time doing just the very basics, like

brushing her teeth or pouring a glass of water. She cannot walk but a few

feet without resting - and that is using two arm canes for assistance. Most

of the time she is in a wheelchair... But even sitting is painful due to the

muscle contractures in her hips and back side. Chronic and unremitting pain

has become a part of her life. Fortunately she is blessed to have amazing

friends that love her and help her each step of the way.

Fortunately there is a surgery that has been used on Parkinson's patients

that works great for Dystonia called Deep Brain Stimulation (which Millie is

scheduled for in NYC at Mt. Sinai September 2nd). It involves drilling 2

holes on top of her head going into both brain lobes. Leads are put in that

connect to wires that go over the head, behind the ear, down the neck, and

into a small box in the chest that looks like a pacemaker. Then the box is

programmed to send a specific voltage (different for each person) to their

brain. The programming takes a while to figure out - they must find the

perfect voltage that will tell the brain to stop sending abnormal messages

to the muscles so that she can function again:

http://en.wikipedia.org/wiki/Deep_brain_stimulation. To see some amazing

results of surgery: http://www.youtube.com/watch?v=wxcJHC7iBeo &

http://www.youtube.com/bl4ckhole

So after the surgery in September, when all the equipment will be installed,

her "pacemaker" will be programmed to adjust the frequencies so her muscles

can function normally again. Being that she needs to travel out of state for

the surgeries, her medical insurance will only cover 60% out of state with a

$5000.00 deductible. At the moment, she still works full-time from home, but

that is becoming more and more challenging each day.

So, a friend has created a "surgery fund" for Millie and I am sending emails

out to everyone I know for help. If you feel inclined to make a donation it

would be deeply appreciated. If you would like to do so you can do it with

Paypal from this link ( http://sherirosenthal.com/millie.html ) or simply

send a check to my friends home at: 420 Dover Highlands Trail, Ellijay, GA

30540 in her name - Millie Munoz. Please send this email to anyone you know

who would be interested is assisting Millie - we would really appreciate it.

I appreciate your time and willingness to read this email!

Thanks!

Mike