Page created by: Sherry Rosso

December 22, 2018

My father, Donald E. Nelson, was a smart and devoted man who could not resist a pun, basketball, or a game of squash or tennis. He was well-rounded and poised for success when he graduated from East Aurora High School in 1958, a class co-valedictorian and many years playing percussion in marching band and orchestra. He'd taken the very first SAT exam, surprising the College Board exam designers with a perfect score. The test designers came to see him at his home in Illinois and requested he retake the SAT at home, in front of them, to make sure it wasn't a fluke, or to determine that he'd somehow cheated. Well, he got another perfect score. You can thank my father (or not, lol), perhaps, for the even more rigorous questions that followed this inaugural SAT "Don Nelson Beta test"! Graduating in 1962 from MIT, Sloan School of Management, led to his career as an Industrial Engineer at Union Carbide Corp. Perhaps it was the carbon and metals he was exposed to over the years, working literally next to and visiting frequently, the physical plants: he was diagnosed by the Mayo Clinic with Parkinson's Disease at age 34 in 1975, before they called it Young Onset Parkinson's, before Parkinson's was commonly diagnosed and generally known. In March of 1975, my siblings and I were 6, 3, and 13 months old. My mother was just shy of 30. They stepped into the great unknown of what would become a scary and difficult journey for them. No one knew how long he'd live, or what to expect in terms of quality of life and an ability to keep himself active and gainfully employed in his career. Medicine for Parkinson's Disease, it's regimen and efficacy, was fairly new to the marketplace. He experienced workplace discrimination in 1983 when he was "asked" to retire, rather than having his employer give him a vote of confidence in relocating him to another state when his regional plant was closing. He was having some physical struggles, but he was a brilliant industrial strategist.

Today, all my father's typical work/life struggles would have been mitigated by the current progressive and positive outlook on living and thriving with Parkinson's Disease. In 1998, Michael J. Fox, a perpetually youthful, popular actor, went public with his (1991) Young Onset diagnosis, creating the quick-incentive research platform of The Michael J. Fox Foundation for Parkinson's Research, while changing the perception of what it means to gracefully, powerfully, and purposefully live with a long-term illness. With this publicity, everyone now understood what it was my father had, instead of asking "What is that?" Seriously, that's what people said as we grew up. We lived near the Canadian border and figure skated in Niagara Falls, Ontario. One time, in our family van, crossing back into the states on the Whirlpool Bridge, an alarmed border guard questioned my father as to why he was shaking. When my father told him he had Parkinson's Disease, the guard peered into our van, saw my scribe case, decided my shaking father might have a machine gun, and pulled us over and interrogated us. He held us for two hours, believing my father had fabricated some kind of mysterious illness to cover up something else. True story: yes. This is not at all likely to happen in this way today. People know what Parkinson's is, and they know people are capable of doing things and thriving for many years to come. It's not only because of the demystification of Parkinson's, but because of advances in medicine and other avenues to treat and manage it.

After moving to the Detroit area in 1987, my father became a patient of Dr. Peter A. LeWitt, another amazing and pioneering Parkinson's advocate. Many years later, Dr. LeWitt joined the newly-formed Fox Foundation. Dr. LeWitt and my father respected each other, sharing humor to relieve stress, along with great compassion for this cause. Although dad's condition and duration of illness meant that he could not be the recipient of the new and hopeful brain implant (DBS) surgery, Dr. LeWitt made sure dad's medications were adjusted and tailored to his needs.

Don Nelson lived with Parkinson's for at least 29 years, passing away in Michigan in October 2003. He left behind a legacy that included more than just his three children, Sherry, Jody, and Doug, grandson Andrew, and his sister, Marjory. We forever remember his humor, his puns, his love of music, the mixed tapes he made for us, our childhood voice recordings we made together on his Macintosh audio and reel-to-reel stereo equipment, and, most importantly, his perpetual determination to get up every day and just do something. He didn't ever complain, he didn't give up.

By the time Michael J. Fox got his Foundation humming, dad could barely get one word past his throat. From 2001-2003, I wanted to hear what he thought about this positive energy surrounding a search for a cure for Parkinson's. I could not hear an answer, but I could see it sometimes in his eyes, his acknowledgement that this was a huge deal, a big leap forward.

Thank you, Michael J. Fox. With your organization and personal commitment, you've vastly improved the landscape that Parkinson's patients and their loved ones navigate every single day!