DYSTONIA support group?

[novelchick]

anyone living in villages suffering with dystonia?? feel as if i'm the only one around trying to make it through a day with this disorder.

[villager99]

have you checked out the stroke, ms parkinson or post polio support groups where many cope with similar though not identical issues of muscle contractures and spasms

[novelchick]

dystonia is unique in and of itself. Although parkinsons patients may experience dystonia not all dystonia patients experience parkinsons. There is a parkinsons support group here but no dystonia. Cervical dystonia (which i have) is a disorder which is caused by the basal gangia part of the brain. the brain tells the neck muscles to twist, pull, lean 24/7 and it is extremely painful!! You have no control over your neck muscles and over time your body gets misaligned because the head/neck can actually lean on shoulder. There is no relief so your neck constantly spasms and tremors also go along with it. Botox is the only relief but that does not work most of the time and for me it pretty well no longer works. It is very difficult to get through a day while in pain all the time but i do try to stay positive, think of all the good in the villages and join every activity i can even though it is extremely difficult to get through a day. But the alternative is to stay home depressed which i refuse to do. Most people are not aware of Dystonia, do not know what it is and how dibilitating it really is so therefore you can't really discuss it with people because they won't understand. Unlike a knee replacement or another problem that can be helped dystonia is always with you. The pain never goes away because the pulling and twisting never go away. It's a rare disorder but it would be comforting if there was some type of support group if anyone else in villages suffers with this disorder.

[swrinfla]

novelchick:

Have you tried putting an inquiry in the Recreation News, each Thursday. There's almost always a column seeking members for new groups (sports, social, etc.). I don't see why the same couldn't be used to start a group of your own.

Dystonia sounds horrible. I can certainly understand why you want to meet others, as I've found support groups are usually just that. I suspect, however, that the population with dystonia must be pretty small (?) which would reduce your recruit base!

My thoughts are with you.

SWR

[novelchick]

i haven't tried the rec news because it is such a rare disorder i doubt i would find anyone with it. maybe one or two people. i just try to keep a positive outlook on life, enjoy life here in the Villages, join all activities i can, while i can, and take each day at a time. That is all we can all do. Best Health to everyone

[graciegirl]

Your illness sounds so difficult and I am very sorry that you have to deal with it. I would try the recreation news. It is such a great benefit to have a support group and even if you meet one other person with Dystonia, it would be a good thing for both of you.

If you are being seen by an M.D. here for your illness, perhaps he or she would know of another patient, or you might ask at Shands Hospital at Gainesville if they have a support group. Usually rare disorders have support groups sponsored by large teaching hospitals and the one at the University of Gainesville would be the closest I believe.

Good luck and kind thoughts.

[villager99]

i've received botox treatments for spasticity from bernadette santos, m.d. at florida physical medicine and rehabilitation medicine in lessburg. i believe she treats dystonia patients so her office might have dystonia support group info.
here in the villages we did have a small support group for folks living with different physical challenges to socialize and network but unfortunately it disbanded after a few years.
however new support groups are always being formed.
i mentioned some of the existing groups in my prior post as i thought contacting their officers or members might be a place to start to network.

[novelchick]

i do go to Shands Hospital to neurology for my condition every three months so maybe my next appt in Feb i could ask but i doubt they would know a support group in or near the Villages.

[Shirleevee]

One of our grandsons was diagnosed with Torticollis, a cervical Dystonia when he was two years old. His head rested on his left shoulder. He had years of PT and is now doing well. Because of his age at the time, the tendons and muscles were able to be rehabilitated.

I hope you find a support group....

[novelchick]

oh My God your poor grandson!! that is awful i never heard of anyone so young with it. i have met teens with it but never a 2 yr old. i wish your grandson yrs of good health , i will pray he will not have to live with it forever and maybe by the grace of god, it will leave him!! my prayers are with you and your grandson.

[raymond1234]

Hello....... This is my 1st post, but I have been reading the boards for a couple weeks to learn about the Villages and the surrounding area as my Dad and I are coming to look around from 3/1/10 to 3/7/10. I just happened to run across this post and I was so happy to know that I'm not alone. I too suffer from Dystonia (cervical dystonia). I was beeing treated in Bethesda, Maryland @ NIH prior to moving here to Somerset, Ky 3-years ago. I will check in to or find a support group for this since I know what its like to feel isolated.

Great boards and great info. Thanks for allowing me to particapate.

Raymond

[Pturner]

Dear Novelchick, I am saddened to hear of your painful disorder. I admire you greatly for trying to stay active and positive, and also for eaching out to others. Thanks for helping to educate us about this disorder. While most of us cannot know what you are going through, please take comfort in the fact that we care! Kind wishes.

Best to you too, Raymond.

[Shirleevee]

oh My God your poor grandson!! that is awful i never heard of anyone so young with it. i have met teens with it but never a 2 yr old. i wish your grandson yrs of good health , i will pray he will not have to live with it forever and maybe by the grace of god, it will leave him!! my prayers are with you and your grandson.

Thank you.........