Say hi to Scott Schloesser. He’s a regular attendee at our weekly support group. Read more about his road to a diagnosis below.
My name is Scott Schloesser, and I have been a member of the Hope for Ataxia community since I learned of it at the beginning of the summer. I am 41 years old and live in Minnesota with my wife and two boys (ages 9 and 7). I was diagnosed with Ataxia earlier this year. I am still undergoing genetic testing at the University of Minnesota in hopes of a more clear diagnosis. The most common types have already been ruled out, so we may not find an answer.
I started feeling symptoms of something going wrong at the age of 35. At that point, I was a middle school teacher and was one of the lucky few that truly loved my job. I got to teach a college prep class for students who had the potential to be the first generation in their family to go to college. I really enjoyed developing relationships with students and helping them through the challenges of middle school. I also enjoyed playing adult hockey (beginner level) and running around, chasing my two toddler boys.
Like so many people with Ataxia, the road to a “label” was a long one. I had trouble with balance, dizziness, and stamina. It seemed to progress. There were a lot of doctor appointments with numerous neurologists and various specialists and still no answers. Finally, in January 2020, Dr. Bushara from the Ataxia Center at the University of Minnesota gave me a diagnosis of ataxia and asked if I was ready to go on disability.
At that point, I had already made a lot of modifications to my daily life in order to perform the duties required by my job. I stayed next to the wall during passing time and always had something I could reach to for stabilization, but I was feeling like I didn’t have anything left by the time I got home in the evening. I had a decision to make: keep teaching but having nothing left for my family or file for long term disability. Luckily, I opted for the long-term disability and haven’t regretted it since.
At 41 years young, it has taken me a while to adjust to the change. In the beginning, I knew I wasn’t becoming a stay-at-home parent with the ability to do all the dad-type things, but I wasn’t sure what that would mean or how it would look. I knew I wanted to spend my time looking forward and finding my new “normal,” rather than getting stuck in the past and focusing on what I can no longer do.
I’ve been able to use many of the mental health skills that I taught in my middle school lessons. Doing things like journaling and meditation have allowed me to focus on the present (most of the time). I often write down the things I am grateful for. I try to use a growth mindset when presented with a new challenge. (This is a technique that adds “yet” to the end of any “I can’t” statements. For example, “I can’t get up those stairs, yet.”) I try to remember that we are going to have tough days and tomorrow will be another chance to make memories.
What is the new “normal” for me? Most days, I still try to get some exercise by doing light stretching and using a foam roller. Going on walks now includes the use of walking sticks. For bike rides with my family, I use a trike. I attend the Hope for Ataxia support groups on Fridays. Since I have the most energy in the mornings, I prep for the meal early in the day. I play guitar with my boys, read books, listen to podcasts, and play board games with my family. I teach guitar lessons to Veterans with PTSD through Guitars for Vets. I am getting better at saying I need a break and taking naps. For golf, I have moved up to the red tees (making the holes shorter), use a cart, and don’t keep score.
In an ideal world, would I want to be able to do more? Sure, that is a no brainer. However, then I wouldn’t have used the last 8 months to be a better father, husband, and son. I see Ataxia as the next phase in my life and I’m ready for the challenge.
Thanks for sharing your story with us Scott Schloesser!
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