by Kari Kuglin
About 9 years ago, my dad, Jon Bolstad, the smartest and strongest man I’ve ever known, began falling down. It wasn’t often, but it happened enough that we started to worry why he was losing his balance so much. At over 6 feet tall, when he’d fall, it was always hard. Over the next couple of years, his speech started to slur. It was bad enough that people sometimes thought he was drunk, even though he never drank alcohol. It took years of doctor visits, online research and eventually a trip to the Mayo Clinic in June 2007 to finally diagnose him with progressive supranuclear palsy (PSP). This rare disease, affecting only five to seven people per 100,000, is a neurodegenerative brain disease that has no known cause, treatment or cure. It affects nerve cells that control walking, balance, mobility, vision, speech, and swallowing.
The past few years brought a steady decline in my dad and it was heartbreaking to watch. His beautiful blue eyes could barely stay open, but continued to sparkle when his grandkids were near. A man who spoke so intellectually that he could hold the attention of NASA eventually could no longer form words that any of us could understand. A man who always cleaned his plate, and often cleaned ours, had a feeding tube for over a year. A man who loved to cross-country ski, hike in the mountains, and take walks had to be hoisted into a wheelchair because he couldn’t stand up. A man who loved to travel and worked SO hard his whole life in order to be able to travel the world with my mom, barely got a chance to enjoy retirement. A man who wrote endless letters to editors and long, thought-out emails could no longer even use an iPad to communicate, let alone a computer. He was a physicist who used his vision, dedication and intelligence to run his own company for 20 years, based on his own invention that I’m not even smart enough to explain.
We lost this amazing man last April to PSP. Although I miss him every day, I am relieved that he no longer has to struggle. He stayed so positive through it all, much more so than I think I would. He swallowed his pride and allowed others to take care of his every need. He continued to fight until he couldn’t fight anymore. Watching the man that I looked to for advice and strength my whole life wilt away at the end was one of the hardest things I will ever do in my lifetime, but he showed me how to be strong. He showed me how to persevere. He showed me that when it really comes down to it, loved ones and spending time with them mean more than anything.
When he passed, he donated his brain to research to help find a cure for PSP. Last April, two weeks after he had passed, I ran a race in his honor and raised around $8,000 for CurePSP. Our family will continue to do what we can to support those that are currently dealing with this disease and to help find a cure. Although the disease affects many individuals differently, we can all be an amazing support system for one another. Thank you, CurePSP, for being that bond between us all and for your work to find a cure for this rare disease.