Living With Dystonia
I just looked at a stack of emails related to my work with dystonia. I had many from patients who were seeking help or asking for awareness magnets for distribution. One message caught my eye. It was from Solstice Neurosciences, manufacturers of botulinum toxin B — MyoBloc. Di had written a set of questions for a presentation that I was to do in January for their sales reps in Houston. One question — Please share with us how this condition physically and emotionally impacts you and what is it like to live with dystonia — was a tough one, a question that I had not thought about although I had lived with the disorder for close to 20 years.
I could only think of the email that I had first received when I had begun to get involved as a patient advocate for patients with dystonia. That email had arrived unexpectedly and described the impact of dystonia so well. Jack had written:
I’m a 41 year old male who was diagnosed with cervical dystonia recently and I think its now spreading to my left arm. I have a knot in below my left shoulder blade that hurts a lot. My major symptoms are a constant yes/yes head tremor, muscle stiffness, and tightness on the left side of my neck extending down my left arm. I can’t hold my left arm up over my head for a long time. It begins to get weak, tight, and painful.
“Dystonia has destroyed me. I am an angry and bitter person, unable to cope. I am extremely depressed. I shower maybe three or four times a month. I sleep a lot to escape. I rarely brush my teeth and I don’t eat meals anymore. I just snack and drink diet Pepsi. I’ve had only three haircuts this year. Going to the barber is a nightmare. I don’t work. My 78-year-old mother supports me. I can’t do anything. I rarely leave the house anymore. I haven’t done anything socially since the dystonia began. If I need anything from a store I drive my mother there and have her go in for me.
“I never thought I’d become like this. Medication only helps for a short while. My neurologist can’t do anything more for me as I have no money. I cry a lot. I yell a lot. Dystonia is the most horrible condition. I hate it. I hate what it’s done to me. I’m jealous and contemptuous of people who have no muscle problems. They haven’t got a clue how sickening this disorder is…All I know is that I’m not going to grow into old age with it. I went to a support group once, but didn’t get anything out of it. I’m not being critical of them because I know they suffer too. But they were mostly women, married, and older than me. I can’t relate. I cannot stand the constant head shaking. I’m a weirdo. How do you cope with this hideous, crappy disorder?”
I thought reading this email would make a great impact. I never heard from Jack again. But his email described dystonia all too well. I could relate to it. However, living with a chronic disease involves making a choice: to live life to the fullest or to do nothing, and not live at all.
April 3rd, 2007 at 5:23 pm
i have generalized dystonia and what this man said i can relate to all of it. I thought i was puting my life back in order so I could get on with life. But here lately everything seems to be crashing in on me. I feel like I am cheated of a good life filled with me doing all kinds of things. I try to stay busy but sometimes I can not even get started. I have had people roll thier eyes at me and try to think of ways to walk away or some have actually turned and walked away like they did not hear me . I have struggled with family not caring enough to do some research to find out what I am dealing with. Today I was told I needed help like in sychiatric help. Yeah I do but it is due to people not caring enough to know what I am living with and to show they are reallly trying to understand. I have blown a fuse today but usually I am easy going and try to be nice to all. But what gets me is why we tend to strike out to the ones that has actually tried to help. I do not want to be a recluse but I feel as though that is where my life is headed.