New Year with Family

Well, it’s been a while since I updated the diary so after a long winter break where I was able to spend some time with my kids, I thought I would make an entry.

It is January 2023. My oldest son, Tyler, is currently living at home with Michelle, Luke and me. We recently sold our old property where he had his own apartment. We moved into the new house and Tyler staying with us while we searched for a home for him. Michelle and I have been blessed with good income, so the plan was to sell the house and take some of those proceeds to buy Tyler his own house. With the crazy housing market it has taken us longer to find a home for him than we originally planned, but just yesterday we went under contract for a house for Tyler and hopefully we will close by the end of January. Until then, he is currently sleeping on our couch because all of the bedrooms in our new house are upstairs. 

Tyler continues to fight every day with his disabilities. He has had several surgeries to replace his batteries and recently he started taking a new medication. The research on this new drug has shown great promise. There is still a lot of research being done on the drug, but so far we have not seen any adverse affects on Tyler’s symptoms. 

Tyler is also working part time at the InterMed Group researching and normalizing the medical equipment database. Tyler is looking into studying and providing cyber security for medical equipment in the near future.

We were very excited to have Samantha spend her winter holiday with us. She started the break with a battery change. Samantha’s symptoms mainly impact her mobility, but as her battery started to die some of her symptoms started to progress, including her speech. Luckily they seem to have been corrected with the battery replacement. Being the fighter she is, not even 36 hours after surgery she jumped on a plane with her mother to New York City before Christmas. Although she was uncomfortable at times, Samantha and Michelle had an amazing trip.

She continues to do very well in school and is a senior in the capstone nursing program at The University of Alabama. She really enjoys learning, helping people, and will be an excellent nurse. Several times she has taken the opportunity to teach others what she has learned about movement disorders, specifically about Dystonia.  Her health is very important to her. She watches her nutrition and works out consistently. 

Luke is growing up to be a wonderful young man. He is one of the kindest and considerate people I know. In addition, he is an amazing brother. I still find it hard to believe how close he is with his siblings. He recently came to Michelle and I to ask for permission to get a tattoo when he turned 18. In order to get a tattoo we told our children that they must be an adult and choose a tattoo that has meaning. Luke chose to get the Tyler’s Hope for a Dystonia cure logo tattooed on his chest in support of Tyler and Samantha.

Luke continues to not show symptoms and has started to play some golf in between all his lacrosse practice. Luke has recently committed to play lacrosse at Belmont Abbey College. His health is also very important to him. He lifts weights every day and continues to eat a balance diet to put on muscle, consisting of lots of protein and supplements. 

​Saint Michelle continues to do whatever she can with the kids as well as with the foundation. She is currently on her way back from Tuscaloosa, Alabama as she drove Samantha back two days ago.

We are looking forward to the ribbon-cutting and grand opening of the Tyler’s Hope Center of Excellence at Duke University in March. That event will be coupled with a fundraiser at the Chapel Hill country club on March 20th. This will be the second Dystonia Center of Excellence with the first being at the University of Florida where they continue to push the envelope in dystonia research and care at The Fixel Institute.