How to Treat People With Cervical Dystonia

Cervical Dystonia or Spasmodic Torticollis, as it is sometimes called, is a neurological disorder of the muscles in the neck that causes painful muscle spasms and twisting of the head and sometimes upper body. Depending on the type of CD, the head can be turned to one side or tilted forward or backward. Sometimes contortions of the upper body occur also, causing a person to look twisted or bent over. All of these contortions are permanent and painful. Although the symptoms of cervical dystonia can be lessened by treatment, there is no cure for the disorder itself.
Although this disorder is not really rare (affects about 1 in 10,000 people) it is not well known among the public and people who have it often feel isolated, alone and embarrassed. They can struggle to fit into our society which so highly values external beauty and body ideals.
I wrote this article to educate people about cervical dystonia. I want people to realize what this disorder is and is not so that they can treat those who have it with dignity and respect.

Difficulty: Easy

Instructions

Things You'll Need:

• patience
• understanding
• willingness to learn

1. What cervical dystonia is:
   CD is a permanent physical disorder
   CD afflicts about 90,000 people in the U.S.
   CD varies widely among individuals
   CD is painful

2. What CD is not:
   CD is not contagious
   CD is not a psychological disorder
   CD is not whiplash
   CD is not a result of being shy or nervous

3. People with CD just wanted to treated normally like everyone else. CD comes in varying levels of severity. Some people have mild head twisting and some people are so severely contorted they can barely move. No matter what the severity, however, many of us who have it feel very self-conscious. Please don't stare, point, laugh, make jokes, etc. If you don't know what is wrong with someone, it is better to ask them politely than to draw false conclusions.

4. Learn some things you can do to help people with CD, especially if there is someone you interact with on a regular basis. For instance, if you know someone has difficulty turning their head to the right or left, make a point of speaking to them on their "good" side. It's nice to be able to look at someone who is speaking to you. Don't force someone into a situation that will be difficult for them to handle. One time I had to give a speech to a group of people and the way the projector and room were set up, the audience was on my bad side and I had to twist myself painfully to make eye contact with them.
   You do not need to treat CD sufferers differently than anyone else, just be thoughtful and courteous. Know the difficulties people with this disorder encounter and act accordingly. If you can do something to help someone they will most likely appreciate it.

5. Learn about CD so you can recognize it. Since most people don't know what cervical dystonia is, they make think someone with CD just has a stiff neck, has been in a car accident or is nervous or shy. Below are some very good websites with information about cervical dystonia and other types of dystonias (also called movement disorders).

Resources

• Dystonia Medical Research Foundation
• We Move
• National Spasmodic Torticollis Association