Wednesday, June 15, 2011
Ok a week ago I went to see my neurologist for a check up and for results of genetic testing that had been drawn more than a month ago. Well the test hadn't been processed because of a paperwork mess up but my doctor is certain I have familial Dystonia , a genetic disorder that has no cure and he started me on a drug trial of levadopa , the same medication that is given to Parkinson's patients. Dystonia is movement disorder and there are over 30 different kinds of dystonia. I am being tested for the DYT-1 gene that affects the trunk as well as the arms and legs .
Anyway I started on 1 pill a day for 3 days , then 2 pills a day for 3 days then 3 pills a day for 3 days. The medicine made me feel dizzy and unsteady so I couldn't ride my bike very well and it made me sweat a ton so I didn't go to the gym for almost a week. I went today and I couldn't believe how weak I felt in Pilates after just a week of not being there. I then did upper body weights but interesting enough I wasn't weak lifting the weights. I had planned on doing the noon spin class but I felt so dizzy I just rode my bike home. Hopefully tomorrow will be better.
I haven't had much of an appetite since starting the medication. I have been making myself eat. There isn't any nausea which is often a side effect of the drug, and there isn't a headache , just a very full head feeling and a dizzy head feeling.
I am hoping this drug helps with the symptoms , I am up several times a night on nights when I am having symptoms of the dystonia and when I am doing pilates my feet and toes will twist and pull , even when I play cards just holding the cards my hands will start twisting . I have had these symptoms since I was a child, I can't do a flutter kick when I swim my legs will jerk and spasm , the pain is unbearable some nights I can't get out of bed when the pain and twisting begins and some nights I am dragging my twisting legs around trying to get them to calm down so I can go back to sleep. My mother had the same symptoms, her father too. Not until now did we have a diagnosis .
I do have hope.
I went to the research and support site for Dystonia and found a lot of information and sent it to my friends and family. My friend Peccy signed up to run for the Dystonia Foundation at the Chicago Marathon ( I feel so loved and supported ) and that was just in this last week all of this has happened. I sent her the information and she signed up. This is my friend who went from 250- 138 pounds by diet and exercise and found she loves to run and is now a marathoner, we met at the gym and we support each other in our health and fitness goals and life everyday.
This morning I woke up and signed online and found out I was named Motivator of the Day here on Sparkpeople, again. It made me smile. It made me Blog today. I had been avoiding blogging, trying to put down in words all that goes on and trying to stay positive , trying to make clear all of this when my head feels so foggy . I am so grateful for so many things and so many people in my life that I have met on this journey!
When I was at the gym this morning and I was on the pullover machine , lifting 105 pounds , I guess I was daydreaming, I heard ' HEY PAM ! THAT ISN'T A REST STATION' It was my friend Mike, he was on the elliptical , he is 10 years older and has had a metamorphosis over the last few years himself, and I could hear my friend Ruth who has worked with him and trained him her words coming out of his mouth. He woke me up out of my daydream, and I continued working out. My thoughts were ' I LOVE MY FRIENDS' " I LOVE MY GYM" I LOVE MY LIFE" " I AM SO GLAD I AM HERE"
So big hugs to everyone who read this and forgive me for clumsy sentences!