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Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.

From Kitchen to Cure!

Spotlight of Hope

Thank you to our Tyler's Hope 10 for 10 Participants
  • Governor Jeb Bush
  • Rick and Michelle Staab
  • InterMed
  • Scarborough Insurance
  • Front Street Commercial Real Estate Group
  • UF Health
  • Florida Farm Bureau
  • MD Publishing
  • A+ Medical
  • WaffleHouse
  • Endoscopy Replacement Parts, LLC
  • SunTrust
  • Scherer Construction
  • Koss - Olinger Financial Group
  • Crime Prevention Security Systems and Custom Home Entertainment.
  • Advantage Publishing 
  • Dr Brian Poplin
Dystonia International Patient Registry

Progressive Diary September 2015

By Rick Staab

It has been a while since I last wrote an update. The blog started out to give an inside look into daily life with dystonia but it is hard to give an update when things don't change much. The blog is about dystonia and my family's struggles or triumphs with Dystonia, not about the foundation.

I have met several people this week that have had dystonia for many years and their families are affected(children and adults). I love meeting these people and sharing stories as well as encouragement.

Both Tyler and Samantha have been doing well by getting good grades in school and being active. Tyler and I recently went on a father/son trip to Idaho fly fishing on the Snake River. This was an incredible experience and a trip I will treasure and never forget. Other than being scared to death by a huge bull moose that wondered into our campsite, we spent time with one of Tyler's best friends and mentor, Stephen Griffin. Our other guide Ryan Todd took care of us by putting us on the fish and making sure we had the best adventure possible. These guys got a contraption that a vet made for people with one arm to be able to fish. It is a harness that strapped to Tyler's chest and held the reel in place while allowing him to take the rod off to cast and mend the line separately. He caught a ton of big fish and impressed me with his abilities. The contraption is unbelievable and will change the lives of many allowing them to fish when they could not before.

Samantha started a new school, Oak Hall, for her high school. She made her JV volleyball team and works as hard as anyone I know to overcome her dystonia. Often she comes home bruised or bleeding but she loves playing.

Both Samantha and Tyler have had difficulties lately with their Dystonia. Samantha has had balance issue and Tyler has had speech problems and more pulling which has made it more difficult to sleep. After a visit to UF Movement Disorder clinic last week it was found what we expected in that both of their batteries were weak and need replacing. Samantha's was almost dead and as of this morning it is completely dead. They are both scheduled for surgery this Thursday. Samantha has gotten much worse since the battery died this morning and the dbs is not working. She was twisting in her back, her feet were turning in and made it almost impossible to walk, and her arms started to twitch and jump. This shows us how much the DBS surgery helps them and we often forget  what it has done.

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