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.
Tyler continues to look for treatments and participate in what he can to help us in the research. The disabilities caused by his Dystonia like every day living very difficult. Tyler continues to have a great attitude and is currently living at home in his own place. He’s looking for a full-time job that he could perform with the challenges of his disabilities yet he also has a photography business.
Samantha is a full-time student who has returned to the University of Alabama where she continues to get all A’s in her pursuit of a nursing degree. She is finishing her second year at the University of Alabama. Samantha just underwent surgery for one of her batteries placed in her abdomen for her DBS system.
Luke continues to be are you very mature and supportive little brother and it’s not showing symptoms of Dystonia. Luke is an active athlete and focusing now on lacrosse. He is in 10th grade
July 13, 2019
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.
Living with Dystonia - 2018
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.
The Holiday Season
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 Hope Weekend
The Hope Weekend went very well and we raised a lot of money to put towards the cure for Dystonia. The Streitmatter family, including their youngest son Austin, were a tremendous hit and addition to this year’s weekend. Austin Streitmatter showed us the tremendous progress that has happened for people with Dystonia and a commitment by the strong family to help fund the research to finish this and find a cure.
Tyler recently had a birthday and once again the secret pal showed up at our house with a birthday present. Tyler continues to do well in school at Santa Fe College. He goes to a lot of car shows and drifting competitions. Tyler and I were invited to a private tour of the Jacksonville Jaguars facilities and I competed in the punt pass and kick competition. We had fun and Tyler came home with Jaguars gear like a signed football, shades, pads, umbrella, etc.. Tyler has spent a lot of time creating and fine tuning his video and photography skills lately. He has a website and Instagram called Tyler Staab Media.
Samantha has been busy with school, volleyball and now she goes to the gym regularly. We have been able to go to a few gator football games(ugh) and she goes to concerts with her friends.
Luke finished his cross country season and ran well in the states. He continues to take Numa speed, jujitsu, his lacrosse is starting back, and he made his varsity basketball team. Tonight he got his jersey and was able to get number 40. He is excited that he was able to get this number in basketball as well because he plays “For-T”. I know whenever he does this it inspires me and means a lot to his siblings. Luke’s birthday is December 1st and Samantha‘s birthday is January 29.
Keep the prayers coming that the research finds a cure soon.
- Husband to Saint Michele and proud father to great kids
The Month of September was Dystonia Awareness month and I was very proud of our daughter Samantha for introducing this and promoting it at her high school, Oak Hall. Samantha did everything on her own. I didn’t realize all she was trying to do for our foundation and to create awareness until she was done. I love when my kids get very involved in Tyler’s Hope and what we are trying to accomplish because they know and see the difference it makes. Samantha sold over $600 worth of t-shits and socks and Luke sold a few pairs of socks to his lacrosse friends. Many of Samantha’s schoolmates now participate in Tyler’s Hope Tuesdays by wearing their shirts and taking pictures for social media. Tyler, Samantha, and Luke approach the fight with dystonia and funding the cure with great strength and grace and we are very proud of them.
Back to School
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.
Mary Staab or Mom as I know her, went the distance and laughed at Alzheimer's challenges. She did battle with that disease for over ten years, and never lost her sense of grace, gentle kindness, and compassion. Mom was a passionate supporter and driver of our cause both financially and emotionally. Mom was very sweet all of the time but was clearly a strong woman that you did not want to tangle with and taught us to stick up for what is right by standing up to the "playground bullies" like Dystonia. She loved her grandkids very much and wanted us to do anything we could to cure dystonia. She called it quits on her time, and left us literally minutes after making sure that she saw each of her children and her sister Fran (and Larry) for one-on-ones. Her legacy in tact, the timing was nothing short of a miracle.
At 11:11 a.m. yesterday, we said goodbye to the most powerful and loving influence in our lives, and now have the responsibility to be kinder, try harder, think more creatively, and love those that need it most in her honor. I have a thousand stories to tell about both of my parents and I am comforted by the undeniable sense of humor, compassion, and fearlessness that they used everyday and that I see reflected in my siblings.
Anyone that doubts the hand of God after experiencing the events of the last two days with her is simply not paying attention.
Tyler recieved an Impact Award this week for the impact he has had in our community. It was a tramendous recognition and it brought tears to my eyes thinking how proud we are of him and Samantha for inspiring people to make a difference even when faced with incredibly difficult circumstances. Both Tyler and Samantha deal with their dystonia very gracefully. There positive attitutdes are important for MIchelle and Luke and I as well as others that see what they do through the foundation work and in their daily lives. When Tyler's award was announced he recieved a standing ovation. Very cool. Oh yeah, Tyler had just had surgery a few days before recieving the award to move his battery pack under his pectoral muscles.
Samantha is turning 16 soon and may start driving(uh-oh). She gets straight A's still and is take all honors or AP classes. She definetly did not get that gene from me. She did however get the giggle gene from me as I often times find myself giggling uncontrollably because she is giggling uncontrollably. Her spanish pronunciation is horrific so if you speak with her ask her to say something in Spanish. Samantha continues to play volleyball and for now saint Michelle continues to drive her all over the state to play. She joined the gym recently and goes to exercise and work out.
Luke has no symptoms of dystonia but has been battling 20+ weeks of no exercise and no pressure on his right knee. It os ealing up and he hopes to be cleared of wearing his brace this Monday. He had his first concert last night at school where he is learning to play the drums and played the snair drum, suspended symbols, and the bells. He is currently studying for his finals this week and hopes to finish the semester strong. He is anxious to get back to playing lacrosse and being active.