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. 
​
  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

July 1st was the first day for patients to be seen at the new UF Fixel Institute and Tyler was the first patient to be seen. The institute is also home of the first dedicated Dystonia Center which incorporates compassionate clinical care and research focused on Dystonia.  Tyler is currently doing work with InterMed and helps with whatever needs we have. He is living in an apartment behind us and attends lots of car shows. Tyler has had batteries replaced again this year but the surgeries went well.
 
Samantha just had her second battery replacement surgery in 6 months and although the surgery went well we are keeping an eye on the area for infections.
​
She is scheduled to go with St Michelle to visit the University of Alabama this week before her orientation and start of school the first week of August. She will be in the nursing program.
 
Luke is starting high school this year and is going to a new school - Oak Hall Academy. He leaves soon to participate in the UNC team camp for high school teams. He is working out and eating right. He is still symptom free of Dystonia but also continues to be one of the most ardent supporters of Tyler’s Hope and his siblings.

Tyler has had his struggles the last 6 months with some pain and pulling especially more so in his face. However, lately he seems to be in a good groove. We purchased a new house that has a separate “apartment” for Tyler to live in and everything is very friendly for disabilities. It gives Tyler even more independence and I see him taking more responsibilities and becoming more of an adult. Everything is on one floor and the main house has a chair lift for him to easily come see us or get a good meal. He can do his laundry and other things but of course we are not aloud in his place unless invited. He took this semester off of school and has been working with the InterMed group as well as working on his videography and photography at Tyler Staab Media. I was able to spend some good father son time with him in Charleston last week when Tyler came to the fundraiser we held there.

Samantha is in her junior year at Oak Hall high school and continues to get very good grades. She has taken advantage of the new house and had many friends over to swim, shoot pool, play bocce ball, or just hang out. She has some really good friends on the lacrosse team and supports them by going to all the games. Doesn’t talk to your dad too much about what college she’s going to attend but at least she’s planning. She is beautiful and mature and very smart. Lately she has had some issues with her memory so she is trying to get in to check for DBS settings and batteries.

Luke just finished his middle school lacrosse season and they won the bell by finishing the season undefeated. He takes no break from lacrosse is he has to travel teams he now is playing for. 

​Tyler, Samantha, and Luke have all of their birthdays in November December and January with the last one being Samantha’s 17th on January 29th. As usual the secret Pal has been there for each of them. Thank you for the caring and encouragement you show each of them, it makes a difference.
They all just finished exams and we are currently in Colorado for Christmas break. We feel very blessed to be able to take a vacation together like this as a family. The dystonia Samantha and Tyler battle every day can pose real challenges but especially when taking trips together across country. Both Tyler and Samantha have been able to get on the slopes through the National Center for Sports and Disabilities or NCSD. Tyler rated his experience in a chair on the slopes as a six on a scale from 1-5. Samantha only wanted to learn to ski by herself as if she has no disability and did a great job and improved each time however her turning to one side continues to be a challenge. It makes it fun to be able to really appreciate the things we tend to take for granted. Luke continued to learn the snowboard and with his energy and athleticism you cant get him down from the mountain.
We wish you a happy Hanukkah and a Merry Christmas!
May 2019 bring us new breakthroughs in the science to finding a cure and eliminating dystonia.
 
The Staabs

Tyler, Samantha, and Luke have started back to school. Tyler is at Santa Fe College and made straight As in his first year. Tyler continues to enjoy car shows and concerts. Tyler works part time for Intermed and started his own photography page. Tyler is trying some new drugs to help with his dystonia.

Samantha is taking a bunch of AP and honors classes again and made the Oak Hall varsity volleyball team. Her dystonia has been problematic and her battery is dying so this Thursday she will have surgery to replace it. It is increasingly difficult for her to walk right now as her DBS becomes less effective.

Luke is taking Numaspeed for speed and agility training and takes Jujitsu with Dark Side Arena when he is not playing lacrosse. Luke loves to bass fish out at our lake place and he is getting pretty good at it.

Saint Michelle continues to keep the Staab household organized and on time. ​