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    PJOY17   138,418
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Would you believe one more diagnosis?

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!
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  Member Comments About This Blog Post:

ELAOPET 6/16/2011 12:00AM

    I HAVE HOPE.
Thank you for sharing this, you are worth of admiration for pushing the healthy way even when encountered with such hardships. You don't lose heart and that's all that matters.
BIG HUGS, CONGRATS ON THE MOTIVATOR TITLE AND KEEP GOING!
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JIBBIE49 6/15/2011 10:19PM

    How wonderful that your friend got down to a healthy weight of 138# after being up at 250#. That is fantastic. I think all of us can be athletes if we just find our real love.

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ADMIST5711 6/15/2011 7:05PM

    Hi Pam, I happened to bump into your log. First let me say I am sorry to hear of your diagnosis and the obstacles it may present. Second I just want to say Congratulations on ALL that you have accomplished and worked so hard for. I can see why you have been awarded Motivator of the Day for the second time. What timing! I am sure that helped you over this last weeks worth of stress due to your diagnosis.

I am happy to have had to opportunity to meet you and read your story. From what I have read I am sure you will find the strength to deal with this medical condition and rise above it. emoticon emoticon on your Motivator of the Day! emoticon Just keep emoticon those goals. You've done an amazing job!!!

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