[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.