Dystonia and TD Awareness

This week is dystonia awareness week. So far I have given away nearly 50 dystonia magnets from Care 4 Dystonia and several dystonia ribbons and pamphlets from the Dystonia Medical Research Foundation. I have also been sharing the film, "Twisted", with some of my friends. I am always curious as to why there are so many people who haven't heard of dystonia when there are nearly 500,000 people living with dystonia in North America alone. In addition, there are thousands of people living with tardive dyskinesia (TD) and drug-induced movement disorders that are not even included in this number. We need to continue to raise awareness.

Many people with chronic psychiatric disabilities or developemental disabilites develop tardive dyskinesia from neuroleptic medications. Have you ever observed a person with a disability who is pacing, rocking, making bizzare movements or faces? This is tardive dyskinesia. It is not because of the person's disability...it is a disabling movement disorder associated with the medications they have been prescribed. A friend of mine with TD started a great website for people with TD to meet, post and learn more about living with TD.

As for my TD/dystonia...I am lucky that it isn't severe dyskinesia like a lot of people with TD have and like I dealt with in the beginning. Dystonia has been treating me a bit better the last week or so. I am now up to 60 mg of baclofen per day. I also take ativan and naproxen. I am in the process of trying to find a better pain killer as naproxen has given me ulcers in the past and doesn't work very well for the severe pain in my left foot and my neck. My doc prescribed Ultram but I have decided not to use it because some of my friends with dystonia have had dystonic attacks associated with it. This is probably because it has antidepressant properties (norepinephrine reuptake inhibition). Antidepressants can also cause or worsen dystonia but typically are not as risky as the neuroleptics that directly block dopamine receptors. I have used Darvocet for dystonia pain in the past and I think I can probably tolerate it best compared to other opiates, like morphine, which leave me with severe cognitive problems, dizzy, vomiting and talking nonsense. Not good side effects for a Ph.D. candidate. I will head back to the doc in a month or so and I finally got an appointment with my neurologist albeit I have to wait until September. Crazy.

In the meantime life goes on. This weekend my little brother will be coming to visit. I miss him so much and can't wait to give him a big hug. He is an emergency room nurse and is a very busy guy. I don't get to see him enough. I will have to give him some dystonia awareness magnets to share with his nurse friends. We are looking forward to spending the weekend together.

The picture is of my favorite flowers...petunias. I took the picture after we planted them earlier this Spring.