How to explain cervical dystonia to someone who is dystonia-free

I assume this could summarize living with cervical dystonia in the real world. One step to either side, you'll find yourself either with a tilted (or twisted or jerking) head embarrassing yourself or in a very unpleasant situation struggling hard to keep your posture. The line you have to walk to play along with the ‘rules’ is, indeed, a bit thin. Putting yourself together and keeping posture is easier to say than actually done. Much fun in a crowded place, I can tell...

Everyone could try this, even if not struck by any movement disorder. But let's stick for a second with cervical dystonia, shall we? Get on a — preferably crowded — train (or somewhere you can't get out easily; recommended: an (express) bus likely to be stuck in a traffic jam), turn your head to one side (your choice) as much as you pass your personal threshold of possible embarrassment. Turn it a bit more (yes!), then a bit more (still, no kidding), and keep it like that. Ride the train for a couple of stations (or stay where whatever location you'd chose).

I am serious, try it! That's what I occasionally tell people how they could feel my experiences. The mere imagination seems to be enough for most, if not all, of them. Again, give it a try! Nothing to lose, except your ‘street rep’... ;-)

The above first appeared here...

Also check out this site.... 

How do others explain dystonia?

" 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"


" 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....... ""

These and other comments are here...

1 comment:

  1. It's so difficult knowing how to explain to other people what I have! I usually just say 'a type of Parkinson's' - it's easier that way. Your post has some ideas though. I haven't seen this blog before.