January 3, 2025 - They do not complain

  Having not updated the diary for a long time. I will attempt to give you an update on Tyler, Samantha, and Luke to share both their triumphs and their struggles with Dystonia. I am very proud of each of them for the grace and character, each of them conduct their lives with. Yes I’m certain I am biased but how they conduct themselves and what they accomplish under the circumstances they deal with is nothing less than extraordinary.

  Tyler, who just turned 27, lives in a 3 bedroom two bath home he owns here in Gainesville, Florida on the north side of town. Tyler has a dog Rick Ross that he has had for several years and recently, approximately one year ago, added a second dog, smoke to his family. Ross is a white dog about 45 pounds and smoke is a tan colored dog similar to a shepherd and Smoke is about 70 pounds. Tyler gets paid to create videos of him playing games like Fortnite. Tyler is also a freelance photographer and creative designer for marketing and video production but continue to look for full time employment with benefits. As upbeat and positive as Tyler is, he continues to deal with many physical limitations caused by his DYT1 dystonia. Tyler‘s left arm poles up constantly as well as his left leg, keeping him in his wheelchair. Tyler’s speech is also hindered making it difficult for job, interviews, or sparking conversations with new people amongst other things. Tyler is very caring and very smart. My wife and I feel very blessed to have kids that are not dealing with addictions, get in trouble with the law, or any of the other vices I see other parents dealing with. 

  Samantha graduated from The University of Alabama with the nursing degree and is working for Baptist Hospital system in the ER at nights. She excels as a nurse because she’s always studying and learning new things and has tremendous compassion for her patients. She is an exceptional nurse. She is very determined with an unwavering willpower while caring deeply and has made God part of her life. She has become good with her money and saves. She travels and does big things on her days off. Sometimes I feel like she’s burning the candle at both ends, especially being on her feet for 12 hours at a time and adjusting to the night schedule can affect anyone’s sleeping habits, but it can affect someone with Dystonia even more so. Samantha recently had her DBS controller/batteries replaced with a new rechargeable system. She has had a very difficult time since that surgery with lots of things. She is trying to adjust her settings to address her difficulties, but it has been very difficult lately. Not only has she been in pain, she also has very difficulty walking or standing straight. Samantha eats very well and pays attention to her nutrition. Like her brother Luke she goes to the gym every day. An example of life with Dystonia is seen when Sam goes anywhere lately people tend to stare, and she does not like it. I think it’s a natural reaction for people to stare, but it’s difficult to deal with. Sam just turned 24 years old and Michelle and I spent a few days in Charleston with her for her birthday. 

  Luke turned 20 December 1st 2024. He was able to go snowboarding in vail Colorado with his best bud Tommy during the December break. Luke has learned golf and plays on his breaks along with going to the lake with friends and wakeboarding/skurfing. Luke remains very athletic but has put on lbs and muscle as he works out every day with weights and follows a good nutrition regiment. His hard work should pay off for him this year as he returns to play lacrosse(middie) at Belmont Abbey College. Luke is showing no signs of dystonia. He continues to be loving and supportive of his siblings in their battle with dystonia. Luke got his number back this year #40 (For T) and we are all excited to see him play with the passion he has always had. Luke has never missed a game, a practice or taken a play off because of injury. His steadfast work ethic and determination work in conjunction with a very disciplined approach to life I believe he has honed from playing sports. He constantly thinks of others and is always willing to be kind and helpful to those around him. Luke worked over the summer and made good money-again never missing a day. 
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  One of the things I am most proud of our kids for is how kind they are to others and often put others above themselves even though they struggle with the devastating affects of living with dystonia. They each spent more time this year with Tyler’s Hope for a dystonia cure.

​Rick