Excuse me, are you a rock star? Originally posted April 22,2009

Sorry, I just found this one from the past that I apparently forgot to post when I was "catching up". I was getting ready to post some thoughts on Torticollis, and remembered this.

Spasmodic Torticollis. Great name for a rock band, yes? Cervical Dystonia. Also a good one. Both sound like a lead-in for a heavy metal band with big hair. Well, we have entered the rock band era with my wife's disease. And now, the coliseum is proud to present.......Cervical Dystonia!!!

These two heavy metal names are both monikers of a disease of which my wife now is suffering. As a side effect of her primary illness, we get to sample an entire array of diseases - as symptoms of multiple system atrophy.

Cervical Dystonia is (in layman's terms - I am just now learning about this, over the last few hours) where the muscles of the neck spasm and/or contract on their own. It is annoying and according to my wife (and common sense) very uncomfortable to painful. When she gets tired, excited, or emotional more than a bit, her neck pulls her head towards her chest. This is actually called anterocollis when it happens this way. There are other names for pulling to the side or to the back. I am not sure how common this is, but in her case she cannot pick her head up on her own. I have to push/pull her head to the correct position and hold it there while things calm down.

Ain't life grand! Rock on, dude!!

What next?

I know I have not posted anything new since the recap of all the existing posts from my original blog. This is turning out to be more difficult than I thought. If you read the previous posts you may have noted a theme - I was typically writing from emotion or passion from the moment. To try to post "informationally" is harder than I imagined when I thought of doing this separate blog. I am still working on how to get motivated to write without it becoming just a medical chart of my wife's disease.

A quick update on that - we continue to battle the daily battles; dressing, eating, using the facilities, etc. All seem to be more difficult as days go by. We have been playing with the medications to try to work on what my wife sees as her most annoying symptom - the tremors. It amazes me how such a small change can in dosage can affect her so much. She is now taking 1 1/2 tablets of 25/100 Sinemet (carbidopa/levadopa) every three hours. We have tried going to two tablets every three hours. That one half of a tablet - 33% more totally sedates her. My daughter (that helps care for her during the day when I am at work) and I both have been amazed at how "drugged" that small increase makes her. We also tried 1 tablet every two hours, but that seems not to work as well. So we stay at 1 1/2.

I will continue to work on trying to formulate a format for this so I can do posts regularly. Like I said, I don't want it to turn into a medical chart; but I also realize I can't wait for a passionate moment to do a post like I did in the past. Any ideas or suggestions are welcomed.

If you know anyone with this disease, or you yourself have been diagnosed with MSA - my wife and I would love to hear from you. Drop me a response and we will get back to you. From what I read there are about 7 people per million that have this evil disease. That means there are not a whole lot of people, but there are enough that communication and fellowship is possible.