Wednesday, May 27, 2009

Wednesday May 27th, 2009

Hi! My name is Joanna but everyone calls me Joey.
I have never done a blog site, so am not sure if I'm doing this right. I was encouraged by Tammy from the Dystonia site to make a blog of my latest challenge I am planning to conquer.

I have always been fascinated by people who run the Marathon and this past May after we had the Fargo one, I got bit with the Marathon bug! It is so inspiring. I talked to my parents and a couple of people and they all had the same reaction 'that this would not be a good thing for me'. Due to me having Dystonia ( a neurological movement disorder), since the age of 10 -11; I wasn't diagnosed until nearly 18 years later. Ah-ha finally a name. I lived my life as best i could - I do have a speech impairment so i use a device called a Lightwriter. It has made my world a whole lot easier on the communication aspects.

I live alone, have several friends and I have family nearby. I enjoy having my own place and having that independance.

I no longer work, I did for awhile at odd and end type jobs - nothing really satisfying though. I do volunteer through where I comment on others photobooks they create. It has become a passion of mine as well as photography.

About 2 years ago I had severe physical problems. I'd be moving along fine, then all the sudden would have what i call as a 'lock-up'. My body would literally freeze up. It was so bizarre. Anyway, i asked my neurologist at the time to watch what happens when I stand in one place for a minute or so. She was amazed. i literally had to get to the floor; which was a task in itself. Then I'd scoot to a chair and be fine for the time being. She put me on a medication that has been my miracle drug. i still have troubles now and then but nothing as intense as before.

I went to the Mayo Clinic in Rochester, MN Feb of '08 and they determined that in addition to my Dystonia I have Orthostatic Tremors. When I read about that online - it fit what i was experiencing to a tee.

So this is why my family and friends are a bit concerned I even want to try this Marathon. They aren't being negative just being honest, and i respect that.

I kind of forgot about it (but not really) then I came across a Twitter from the Dystonia Foundation about Brian's story and how he is running the Chicago Marathon in October. I realize that every body is different, every person with Dystonia affects them different. But it still inspired me, if he can do it - perhaps I can too.

I talked to one of my trainers (Kendall) and he said he is the eternal optimist about this kind of stuff. He read Brian's story and like I said before, he also said Dystonia affects everyone different. i did have a concern about the big crowds; which i don't do well in. He said theres nothing that can be done about the crowds BUT we can put you at the back. I also think it would be 'easier' if I ran/walked with someone so in case i had trouble, i could grab their arm and run with them until i got out of the crowds. There were 5,000 people in the 5k alone. Kendall said we'll take baby steps. He emailed today and said he'll talk to his colleagues about this and where and when we should start. I'll just have to try and see how well i do.

I did talk to my doctor about this and she is fine with it as long as this is what I want. I want to show myself and others that this can be done.

Even if after all the training, I find I'm just not strong enough to do this, then at least I will have given it a shot. Maybe my story will inspire others - to believe in the impossible, to believe in yourself - then anything can be achieved.

i do go to the gym twice a week. i use the rower, and other weight machines - all are ones where I'm sitting down. Stretching is my favorite thing and best for my body. It does concern me how my body will do - but i won't know until i try, right.

I guess once I get writing I can't stop. I'll write more once my training has started. :)

No comments:

Post a Comment