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.
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.
On Friday September 30th Samantha had surgery to replace a battery for her DBS that was failing and weak. We are hopeful that with the battery replaced she will have more mobility. Samantha was tripping and having more difficulty walking leading up to the surgery. The surgery went well other than the common problem she has of not being able to get a good IV started. She will be healing up this week but able to go to school and do most of her normal activities.
Tyler started college at Santa Fe and is taking a few casses this semester to get acclimated. Tyler also works for the InterMed Group during the week entering data in the service database. Tyler has been producing some fun videos for his interest in cars and some of the audo shows.
Luke continues to try to heel a bad lession on his knee and was given another six weeks of no pressure then they will re-evaluate his knee and hopefully clear him for rehab. Luke is doing wellin school and works hard to keep his grades up.
It has been a while since my last update and thank you to all of the people that have reminded me to do so lately. The Secret Pal has been consistent and the love and encouragement they get from the Pal cannot be measured.
Tyler is 18 and graduated from Queen Of Peace. He has really been struggling physically lately because his batteries are dying. He takes a small amount of medication now when he is really hurting and his surgery to replace the batteries is this Friday. He has started working doing data entry with InterMed Group but this week he took off work to spend time with a great group of his friends from Tennessee. These boys all met on line playing video games originally. They drove down to spend five or six days together and met in person for the first time. They have gone to the beach, lake, springs, and done a bunch of cool things together. It amazes me how understanding and helpful these kids are with Tyler. The first day, I saw Yaeger carrying Tyler down to the lake in his arms. These are...
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...
It has been a while since I last wrote an update. The blog started out to give an inside look into daily life with dystonia but it is hard to give an update when things don't change much. The blog is about dystonia and my family's struggles or triumphs with Dystonia, not about the foundation.
I have met several people this week that have had dystonia for many years and their families are affected(children and adults). I love meeting these people and sharing stories as well as encouragement.
Both Tyler and Samantha have been doing well by getting good grades in school and being active. Tyler and I recently went on a father/son trip to Idaho fly fishing on the Snake River. This was an incredible experience and a trip I will treasure and never forget. Other than being scared to death by a huge bull moose that wondered into our campsite, we spent time with one of Tyler's best friends and mentor, Stephen Griffin. Our other guide Ryan Todd took care of us by putting us on the fish and making sure we had the best adventure possible. These guys got a contraption that a vet made for people with one arm to be able to fish. It is a harness that strapped to Tyler's chest and held the reel in place while allowing him to take the rod off to cast and mend the line separately. He caught a ton of big fish and impressed me with his abilities. The contraption is unbelievable and will change the lives of many allowing them to fish when they could not before.
Sometimes things start to align and we push forward at an accelerated pace.
We are in the final steps of our Alignment grant which is funding a new collaboration of great universities and researchers with a potential huge outcome. The groups have demonstrated success in a new pathway towards treatments and a cure and have received additional confidence in their findings through the NIH.
The Tyler's Hope 10 for 10 program has been launched and one of the first people to participate is a great supporter of the Tyler's Hope foundation, Florida governor and future presidential hopeful, Jeb Bush. Both his financial and intellectual support are making a difference and will continue to push towards a cure for dystonia.
Beating Dystonia Daily:
Tyler has straight As in school and is in four honors and AP courses. Samantha always has straight As. They work very hard through some of the debilitating symptoms toward their honor roles at school and of course we are very proud of them. Luke does...
When we started this war on Dystonia, we knew that passion and emotion would play a huge role in our momentum, and that our ultimate victory would include challenges and heartbreak on the path to the finish. Tyler's Hope has become a force in the quest for a cure, our confidence is high and we should all be intensely proud to be pushing Dystonia into a corner. But is with a very heavy heart that I share with you the loss of one of our most promising warriors. Don Beardsley, Tyler's Hope Ambassador, husband, father, entrepreneur, and fearless friend, passed away Saturday after a massive heart attack. None of us were prepared for his loss.
Don was introduced to Tyler's Hope by my brother Ken at a bar (big surprise) after a golf tournament in Miami a few years ago. After hearing the details, and seeing pictures on the website, Don broke down into tears and made a vow to be a part of the solution. He had no connections to the disorder, just a huge heart and the recognition that his kids...