In my case i say its an abnormal movement of the neck. I do find i dont talk about it though because there is not much awarness of this condition. so i do tend to keep it to myself.

I tell people it is a neurological disorder similar to Parkinsons. Then I mention my symptoms, but they usually already see the tremors and spasms

My husband Howard's body is twisted all the way to the floor. Of course some days are worse then others, but this usually gets the conversation going.

We do make sure to explain that dystonia covers a wide range of disorder.
God Bless!

Janelle

I usually don't even try. For people I run into (literally) on the street, who usually inquire if i have had an auto accident or a fall, I just reply in the affirmative and say Thanks and I've got an appointment scheduled for tomorrow. (I occ. wear a soft collar---the "gate theory", and emotional crutch--and this suggests the accident interpretation)(no mechanical support--my chin cold crush a brick).
For those with whom I'd like to go into more detail, I just say that some chemicals in my brain are deficient in some areas which leads to some uncontrolled muscle movements; that some people get relief from various medications, and that it is quite painful at times. New meds arrive from time to time but nothing spectacular, and at my age i'll probably have it till I die. People either coddle me or are afraid I'm going to fall on top of them, but they get out of my way once I board the bus and lunge down the aisle. They are concerned that there's something wrong with my back and I have to tell them that usually I have no problems lifing using my lower back muscles; however turning with the object is a different thing as when I look to my right or left I basically have to pivot from my pelvis and move my feet. But for most people the auto acky works the best.

Dave,

The way you explain what the dystonia does to your frame sounds alot like what it does to Howard's. He has the twist to his neck but that isn't the worst of his. His is the perpetual cramping or seizing of the lower back muscles on the left side.

These pull him and twist him so his feet are facing south for example and his torso is facing west, then his head is faced north. a twist is the only way I can think to describe this.

I made him start using a cane early on because of the instant muscle spasms that hit when he isn't ready for them. When he is at home there is usually something for him to grab to catch himself but when we are out he could easily hit the floor. So I insisted he use a cane when away from home. He'll quit leaving home before he uses a wheelchair, that's just how he is.

thanks. Krstlmom. I skipped over something that is in the same category as your husbands disease. If I can walk I develop a kind of rhythm to it which smooths out some of the twisting motion. I don't drop right down on the floor---almost. At times I get such a piercing stabbing pain in in the bunched up muscles in my neck that I feel a jolt and have scarcely missed dropping to the ground. As I type here I maintain my body in perpetual twisting motion so that I can achieve that same sort of rhythm seated. Sounds odd, but if I try to sit still in a computer chair my head and neck turn to the right in a slow writhing motion, my butt and pelvis begin to slide around to the left and eventually i slide off the seat. Tell me,....does your husband's dystonia worsen rather dramatically if he encounters a social situation that causes anxiety, fear, tension or stress??
Also, did he ever take any psychoactice meds for a long time (I took Zyprexa for 10 years, and before that Trilafon for ten; practically any psych med could do it, but esp. the old phenothiazines). This is probably reserved for those who have Parkinsonism with dystonia. Family history? dave

Nope, no family history that was obvious.

He has only taken Amitriptyline (antidepressant, but caused weight gain), and imipramine (another antidepressant). The Dr keeps him on these for chronic pain, but mostly because I insist...when he's miserable so are we.

Yes, stress is huge when it comes to triggers. This time of the year is always bad. financial stress, family (his mom) stress, he hates bad weather when he can't get out. Other triggers are usually things that cause a startle response, loud noises, near misses (things flying at him like a frisbee), coughing, sneezes, and muscle strain.

He does the rhythm thing when he walks too. He also rocks when he sits. Another frustration is loss of small motor function. Writing, buttons, laces, etc.

The instant searing pain he gets is in the muscles between and above his shoulder blades, more upper back then neck. This surprise pain isn't fun for him, but it doesn't seem to bother him as much as the constant ache, pulling pain in his back muscles. This pain rarely if ever goes away or even gets *easy*.

The Neurologist that Howard was seeing in Detroit is the Director of the Parkinson's foundation. Dr. P. LeWitt has been studying the similarities between P.D. and Dystonia for a few years now. He has tried Howard on several drugs used to treat P.D. and for a while they have worked at least a little. Unfortunately they wear off.

Dr. LeWitt still consults with Howard's Dr. up here, but it's too hard for Howard to travel that far, as often as we needed to see the Dr. He has a Neuro. here in Saginaw now.

Howard has been fighting this since 03, and diagnosed since 05. Compared to some he's just getting started. Before 03, he was a black belt in Tai Kwon Do, and extremely active. We aren't sure but it's a strong bet that this whole thing was there all along but never surfaced until a minor wreck he had in Nov. of 02. it's possible the trauma from that triggered the onset of symptoms.
God Bless!

Janelle

It is caused by NERVES... mixed signals and short circuits

Your Autonomic Nerves sending the wrong signal out - effecting small fibers - everything that your body does or suppose to do automatically without you telling it to do it..

I think that this site will help you with resources and links, not only on pain management but how others have dealt with autonomic problems.

There are new topics everyday - a lot of research goes into the Neuropathyteam posts which provides many resources and links.

Go check out the posts that have Autonomic in the topic subject line.

http://dailystrength.org/groups/neuropathy

Sincerely,
The NeuropathyTeam
http://dailystrength.org/groups/neuropathy

I say I get spastic and do a demo.
I say I take meds for Parkinsons disease and muscle relaxants (so they know its serious)
I say its rare (so they don't feel like eejits for not having heard of it)
I say I might sit or move funny.... (so they can stare)
I sent clips from you tube to close friends
I add support groups and dystonia stuff to my websites and facebook to raise awareness
Most people will never understand it but they understand its a part of me and it's alot for me to deal with.
Otherwise I don't really talk about it
Strangers stare, friends are used to me gimping about, its part of me and my personality. Personally I fight dystonia, it's not going to make me depressed and its not going to beat me.......