Saturday, August 6, 2016

Summer and storms...

Wow! It's been a long time since I posted anything. I had kind of a rough Spring and Summer. Have you ever heard of a Dystonic Storm? That's what I have been dealing with for the past few months. It's also called Status Dystonicus. It's sort of a rare complication of Cerebral Palsy. I have dystonia, which just means that I have abnormal muscle tone because of my CP. So, the Dystonic Storm is my muscle tone being way too high and I was moving my arms constantly. It's really annoying and difficult to sleep. It also makes me sweat a lot and my heart rate gets really high. I was also having some pain in my wrists and arms. I even had some really bad muscle spasms. The storm went away, but then kept coming back. I'm really lucky to have awesome doctors, especially Dr. Pavone! She's a physiatrist, which is like a physical rehab specialist. I'm feeling so much better now! The medicine I have to take for the storms makes me really tired, so a lot of the summer I've been either storming or really tired. I'm looking forward to finishing up my summer feeling all better!

I can't believe I am going to be a SENIOR in high school this year! High school has been the best years of my life so far. I will be sad when I leave because I have made so many friends and gotten to know the teachers and staff really well. My dream job is to come back to my high school and work there as a teacher or maybe a counselor. I think college will be awesome, too. I'm not sure where I'm going yet, but I have some ideas. I think I want to either be a teacher or maybe a psychologist. I also really love animals, especially dogs, so I might do something that works with animals. Maybe I could be a dog psychologist that teaches a class! My life has been running by too fast. My mom wants me to go back to Kindergarten!

In between storms, I have had a great summer. I went to visit my cousins in Kansas, I went to Iowa for a weekend to visit friends and family. I have hung out with my friends a few times, but not as much as I want to! Enjoy the rest of summer, I know I plan to!



  1. Hang in there Jack! The possibilities are endless for you. I can not wait to see the path you choose.

  2. Hang in there Jack! The possibilities are endless for you. I can not wait to see the path you choose.

  3. This is an awesome blog. Great job, Jack. It's all very inspiring.