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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
  • Brian and Amber Crawford
  • FIGG 
Dystonia International Patient Registry

Progressive Diary December 25th 2015

By Rick Staab

Merry Christmas!

 The secret pal has shown up a few times again lately. First on their birthdays and now again with Christmas gifts for the kids. I must confess that after many years I finally found out definitively who the Secret Pal/pals have been. I am sad to know because I really didn't know for sure and it was very mysterious. I am up at all hours of the day and never caught the ladies leaving the presents. The kids still don't know who it is and I'm not telling them unless the Pal wants me to?

Tyler has been lying on the couch the last few days recovering from a surgery he had to close back up his stomach after removing his feeding tube. He really wanted to get rid of the feeding tube so he did. The recovery is painful for a few days and even more so when your dystonia is always pulling on the muscles that are trying to heal. The next few weeks we will be watching to make sure Tyler doesn't develop any infections as this area is prone to infections. Tyler is graduating high school this year and continues to make good grades.

Samantha continues to be tenacious on the volleyball court and plays almost every day between her practices and games. Samantha is an excellent student and makes straight As in all of her advanced courses. She is 14 and does well with her dystonia. Although her mobility and balance is affected the DBS surgery has really improved her quality of life and abilities.

Luke is now 11 and not showing any symptoms of Dystonia. He continues to play lacrosse a lot and just started basketball. Luke works hard on his academics and makes good grades.

Saint Michelle continues to put hundreds of thousands of miles on the truck driving to practices and taking the ids to fun places.

We are thankful and feel blessed for all of our friends and family. We also thank all of Tyler's Hope friends who keep fighting the fight with us and look forward to the day soon that we find the cure. Every day is an exciting new development in the research for the cure and our drive to end Dystonia has not wavered. Big Love and Merry Christmas from the Staabs

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