March 20, 2013
By Rick Staab: Update on a life with Dystonia
Update on a life with Dystonia: Michelle, my wife, continues to be a hero to me and my kids every day by driving them to school and picking them up all at different locations. Michelle stays active on the PTAs and when she brings them home after school she works with each of them to make sure their homework is completed. Tyler has continued to do well in school and has settled into Saint Francis High School as a freshman in 9th grade. He just switched to Saint Francis in January in large part to be more social and interact with more kids. The kids at this school are very supportive and nice.
Tyler has had back problems lately and we are trying to figure out the cause. His pain has been to the point where he has gone into the doctor to see if it is something besides his battle with dystonia. So far there are no indicators of anything else causing his back issues except dystonia sucks. The back pain is probably caused by his walking and contorting constantly without the proper posture. The doctors want to try Tyler on a baclefon dose and see if that helps him. If it does they want him to consider inserting a baclefon pump. I am against this but will let him decide. He has started to make videos with the GoPro camera he got for his birthday. He is not interested in learning to drive right now but we are hoping that will change if we retrofit a car for him to use.
Samantha was inducted into the National Junior Honor Society last night and the best part was her awesome dress she wore. I never get to see her in a dress like that and she looked beautiful. Obviously she does very well in school also. She is very competitive (got that from her mom) and always wants to be the best at whatever she is doing. It can be as simple as how fast to answer a difficult math question or a designed competition but she wants to win and gets really frustrated when her dystonia gets in the way. She continues to fight against her dystonia to be able to do everything everyone else does. She started her new season of volleyball and practices religiously. She has gotten better. Her team is blue this year.
Luke is Luke, and is working very hard to overcome his expressive writing disorder and a form of dyslexia. He finished his basketball season and is learning to play the guitar. He will be runnng in the Swamp Dash and bash MudRun for Tyler's Hope on April 27th with me.