Living with Dystonia

This past weekend I went to Chicago for the Dystonia Medical Research Foundation's Family Symposium. It was a joy to see familiar faces from past meetings and meet some new friends. Many of the children seemed encouraged to hear that many young adults like myself are living and enjoying life successfully with dystonia. I think it is particularly difficult for teenagers who have recently been diagnosed with generalized dystonia and have been in and out of hospitals dependent on their parents or nurses for care. When dystonia takes away your life it can be difficult working to take your life back. I also met several young people who have greatly benefitted from deep brain stimulation surgery (DBS) and others who have tried DBS only to have it removed due to infection or because it wasn't successful in treating the symptoms.

I also was saddened to hear of so many stories of dystonia being diagnosed as "conversion disorder" or other psychiatric misdiagnosis. This happened to me several times in the process of getting a diangnosis as well. Most of the people I talked to who have dealt with this diagnosis are female which may be attributed to a male dominated medical system or just to history. Sadly even specialists sometimes make this mistake when diagnosing "psychogenic dystonia" only to have a child later diagnosed with organic dystonia or genetic dystonia. I personally tend to question whether "psychogenic dystonia" even exists. It is so unfortunate that children with dystonia are still dealing with this ignorance and some are still suffering in abusive psychiatric hospitals before getting diagnosed and appropriately treated. This suggests to me that we are still no where near appropriately educating the medical profession about dystonia and are a long way from adequately understanding it. It also reminds me of the need to substantially reform psychiatric health care. People with a psychiatric diagnosis should be receiving quality health care as if they have any other diagnosis, but the reality is that they do not and abuse by the medical profession often enters the picture when a psychiatric diagnosis labels the patient.

Even in the midst of the difficult stories about the road to diagnosis and life with dystonia there were also many encouraging stories and discussions. We even had the pleasure of listening to Billy McLaughlin play for us. He said it was the first time he has played without having to explain his dystonia. We all understood. His music is beautiful and he exemplifies living successfully with dystonia.

Although some of the weekend was focused on education and awareness of dystonia, much was focused on living and coping with dystonia successfully. This was very encouraging to me and others who attended. I think it is very important for young people to know that they can make a difference in the world and be successful in whatever manner is ideal for their lives. By learning ways to cope and deal with dystonia today these children can reasonably hope to enjoy the future. I look forward to keeping in touch with my past friends and new friends from this meeting. Good luck to everyone living with dystonia keep fighting and know that you are not alone.

Dystonia Foundation Awareness Video

Check out this new dystonia awareness video.

Tummy Troubles

I haven't posted for a while mostly because I haven't been feeling well. I have had trouble with my stomach and gut for several years now. In 2001 I had a cholecystectomy (gallbladder removal surgery) because of severe pain that was attributed to gallbladder dyskinesia. Afterwards I continued to have problems with abdominal pain, nausea and constipation. At Mayo Clinic I was diagnosed with gastroparesis and irritable bowel sydrome. It seems to be a general gastrointestinal motility disorder. I have had ongoing symptoms related to this ever since but I do fairly well by adjusting my diet and it helped quite a bit to quit eating meat. I have enjoyed being vegetarian for over 3 years now. My symptoms (nausea and pain) have been a bit worse lately and so I just haven't felt motivated to blog. I have an appointment with a gastroenterologist in about a month. I haven't seen anyone for a while because I can't take most of the drugs used to treat gastroparesis because of my dystonia. I'm hanging in here and am still able to work for the most part, just feeling cruddy a lot of the time.

In spite of my health problems, I must say that on a good note we are having an enjoyable summer and have enjoyed swimming at the local pool, walks, and summer concerts in the park. We have a lot of fun and it is even more exciting with a 2 year old. Today we spent the afternoon in the backyard playing in the baby pool and the sandbox and lying in the hammock. Gotta love the summertime. The picture is of my son enjoying the new bike trailer that we got recently. He loves going for bike rides with Daddy.