Look out for Papa Smurf!

Sunday, October 4, 2009

Look out for Papa Smurf!

This is my get-up for the Bank of America Chicago Marathon. Look for blue on October 11th!

I called this my "blue man" outfit and while I was still contemplating wearing it for the race I wore it to one long run. I expected to hear all sorts of blue man group jokes and the first one to see me says, "Hey, papa smurf." I hadn't even thought of that, 20 years ago, probably; but this came well, out of the blue. I about fell over laughing.

I should have shaved but oh well, I probably won't before the race either so at least you know what to look for. The lighting caught the reflective strips causing me to "Shine." Sorry for the stupid grin on the bottom one, I thought it had already taken the picture.

Had a great time watching the mighty Spartans from Michigan State defeat the former evil empire, now the evil fallen empire; Michigan State 26 Michigan 20. But is always nice to keep your in-state rival in their place.

Besides that it was a pretty crappy weekend, most of the week actually. It was rainy and 50's all week here. Three or four times I walked the dogs in the rain, never fun when you have 3 of them. Drying them off afterward is the worst part, 12 paws to clean and 3 underbellies to get; and if it is raining hard, their backs. Today we had a recovery day. Robyn still had a fever at noon and the kids were just getting over something and I didn't feel well all last week. So none of us left the house, besides me to walk the dogs.

Since this is race week and I won't be blogging to much longer I just want to say I am honored to be asked to do this and humbled by all the support; from those suffering with dystonia, have a loved one suffering, and especially those simply supporting our efforts who could easily turn their back on us but choose not to. I have talked a lot about qualifying for Boston and that is my goal. If I run a perfect race and the conditions are right it may happen but I want you to know I will finish this race for you no matter what happens. I will not let you down, I will finish this race if I have to crawl the entire way and it takes me 24 hours.

Quote of the day: When the world says, "Give up,"Hope whispers, "Try it one more time."~Author Unknown

1 comment:

DMRFOctober 6, 2009 at 8:10 AM
From all of us at the DMRF, we thank Brian for all of his hard work to make a difference!!!
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My Story

Most of it contained in the blog somewhere but I will summarize here: I started to notice symptoms during my freshman year of college. They were subtle little hints like I was more difficult to chew and had some twitching in my face. And when I got nervous my voice would become very tight and strained, this was true from middle school but was getting worse. By the end of my sophomore year I knew something was physically wrong, it was nothing mental. I was luckily diagnosed very quickly compared with most dystonia patients around 1990. I quickly sought treatment, and quickly ran throuh the numerous meds I had tried, Botox was used but I became immune, surgery was done in 1995 which helped my pain greatly but didn't do anything for the voice. In 1999 I went to NYC, to a doctor I considered the finest mind in the dystonia field at the time, and he suggested an experimental study they were doing called Deep Brain Stimulation (DBS). This was the first I had heard about DBS, I went back to my aunts house in NJ and thought about it for a few days and decided against it at the time. I still think it was the correct decision but I also made a wrong decision out of desperation during that visit. Instead of waiting for them to improve the DBS technology I opted for a palidotomy, which permently alters the brain. The surgery left my speech garbled instead of breathy when I went in. I was now following the progress of DBS and checked it out in Chicago in 2001, decided to hold off a litle longer. In 2004 I went back to Chicago and opted for the surgery at this time, fully aware the affects on the voice were really an X factor, but likely no change. I had the surgery done but the DBS had yet to be turned on, that came a month later. So I laughed when people said I looked better during the first month! After a month passed and my body adjusted to the new hardware I had installed it was turned on and the facial spasms started going away with each fine tuning that came once a month. I love to talk to dystonia patients (the nicest people on the planet, not quite sure why that is - maybe it is the empathy that comes with realizing you have to live with dystonia.) Feel free to email me at Brianst@sbcglobal.net.

DMRF's Accidental Hero - I run because I can!

Sunday, October 4, 2009