Don Nemke: Eight Decades of Determination

by Chelsea Moeller

Don Nemke recently turned 80. If you’re lucky enough to sit with him awhile, he’ll regale you with small town tales of 10-year-olds driving tractors and growing green beans on the family farm, brothers making their mark ski racing and playing high school baseball. You’ll hear about humble beginnings, hard-working parents, and the rise of five ambitious siblings. You’ll even hear how he was the self-proclaimed third-best dancer in his school.  

What you won’t hear are any complaints. 

Diagnosed at age 18, Don lives with advanced facioscapulohumeral muscular dystrophy (FSHD), relying on a powerchair, numerous other innovations, home care and the love of his life, Roz, to navigate each day. 

His diagnostic odyssey is both familiar and foreign: the early expression of the condition was subtle enough to overlook and, even so, he was accurately diagnosed in the 60s by a small-town doc who knew what he was looking at when most others wouldn’t have.  

Don knew from an early age that his life would be altered, but there wasn’t much more to know about FSHD at the time.  

A hard-wired project manager at heart, Don set to managing his life with logic-driven decision-making. “I researched FSHD and changed what I was going to major in to accommodate my projected disability. The goal was to get the best education and accurately project a schedule of the years ahead – of how much time I might have to accomplish the things I wanted to accomplish.” 

While the progression of FSHD is in many ways unpredictable, Don’s forecast was largely accurate, the most glaring exception being his assumption he wouldn’t get married. He met Roslyn “Roz” Rudnick in college. They were wed right after graduation but not before the difficult discussion about whether to have children. With no hope for a medical intervention, they chose not to pass the gene to the next generation. They will celebrate 57 years together this year. 

Together, Don and Roz have built a beautiful life. Despite being a city girl, Roz, a middle school teacher, learned to hunt deer and spent every summer weekend fishing. They indulged their love of travel, visiting all 50 states – many of them twice. While they’ve been tested by the trials of FSHD’s steady march, these two are passing with flying colors. “I owe my entire adult livelihood to Roz for her support,” Don said. “She indulged all the things I wanted to do while I could still do them.” 

In kind, Don helped Roz establish the Nemke Scholarship Fund, which supports local students facing financial hardship. 

Don and Roz have been supporting FSHD advancement in one way or another for decades, first through participation in clinical research and then through steadfast philanthropic support of the FSHD Society, which he credits with filling the information and connection void. 

Don braved biopsies, blood draws and nerve conduction tests, completed surveys and, later in life, frequented the University of Arizona where a medical professor used Don to demonstrate what to look for when diagnosing FSHD. Pioneers like him who dared to dream of a solution are the reason there’s hope for a meaningful treatment today. 

When asked what he’d tell someone newly diagnosed, he says he’d encourage them: “You don’t have to sit back. You can do so much more than you think you can.” 

What’s clear as Don reflects on his life, is that he followed his own advice. He succeeded professionally, adventured widely and loved deeply.  

He did not question the cards he was dealt, but rather focused on how best to play them. While FSHD was ever present, impacting his career, the shape of his family, the age and location of retirement, the duration of his hobbies – it did not drive. It rode shotgun but Don called the shots.