Stepping into the Spotlight

ALS is a disease that takes from people. It takes your ability to eat the food you love, to hug the people you love, to speak the words you love to say. Ron Presby loved serving people and, in 2015, ALS took away his ability to serve others.

Ron (Left) with his husband Bob

It took Ron Presby 35 years to marry his loving husband Bob Shuman. They met back in the 1980’s, their lives diverged like two rivers taking different paths at a fork, they came back together 18 years later and they have been together ever since then. Fate, it seems, had a funny way of bonding Ron and Bob and fate reared its head in an entirely different way when, just a few months after they could finally marry in Pennsylvania, Ron was diagnosed with ALS.

Until those symptoms began to manifest, Ron didn’t think much about ALS. Sure, he had heard about the disease, but it did not have much impact on his life. His life was about people and it still is, even as the disease progresses. He lived in New Jersey as a young child, moved to California when his parents divorced, then back to the Philadelphia region.

It was around the dawn of the new millennium when Ron met Bob for the second time. Bob had been a member of American Bandstand and was a lot of fun. Life had a way of bringing the two together.

Ron’s life has been full of opportunities, big and small. His professional life has been eclectic but each step has been rewarding in its own way. For years he worked in super markets, but he hated unloading trucks so, as anyone would do, he took a course in dental technology and worked constructing teeth. It was a fun, comfortable work experience, but Ron didn’t feel totally fulfilled, so Bob told him to take another course to learn a new skill. It worked before, so why not now? Ron learned how to do graphic design and got a job in advertising at the Philadelphia Gay News. While that was rewarding in many ways, it also wasn’t exactly the right fit for Ron’s goals and personality.

Naturally, the path of super markets to dental technology to graphic design led to a career in catering. For some, that direction may seem puzzling, but for Ron it felt right. He had a paper route when he was younger, liked interacting with people, and the ad for the job saying “no experience necessary” all combined to make this a seemingly perfect next step in his life.

During all of these professional jumps, Bob was by Ron’s side, supporting his decisions and making it easier to leap when others may have told him to take the safer approach. Bob did what you’d hope any loving partner would do by giving Ron the trust and backing to do what he felt was right.

After working in catering for a few years, something suddenly wasn’t right though. In fact, something was very wrong. Ron was working with a catering company with Penn Museum called Restaurant Associates. He went from that ad saying “no experience necessary” to a management position. They served many big parties and events and he enjoyed it at every step. The company also catered events at Longwood Gardens each winter, which was always beautiful and fun.

It was at Winterthur that ALS would really make itself known.

“I was at a point where I had fallen a lot,” said Ron, looking back on those last days in catering. “I had slipped on the snow at Winterthur and kept falling. Some workers helped me up and it just shook me thinking about how hard it was to get up and that it was getting more and more difficult each time.”

Those falls were the final straw. Ron had also had issues with carrying dishes at events, but the thought of ALS never entered his mind. Even after the global awareness from the ALS Ice Bucket Challenge, Ron thought it would be anything but that. After a few tests, the neurologist confirmed the news. That was February 2015 and Ron’s life was forever changed.

It was clear that Ron could no longer do his job in catering. He had spent so much of his life serving others, but now he was in the awkward position of having others serve him.

“I couldn’t believe it at first,” said Ron. “I also thought that I could escape it, that this wouldn’t affect me like it affects others. After all, I was always so independent and active. ALS took my independence and it was hard to have others help me.

At the same time though, having reached 60 and never having anything horrible happen to me, even with ALS, I am grateful for all that I’ve done and all that I can still do now.”

There is a lot that Ron can do and he continues to find more outlets to enrich his life. In the past, Bob and others suggested one class or another to guide him on his path, so he took classes on designing mosaics and painting furniture. His family calls him an artist, but Ron considers himself a craftsman. Now his sister comes to visit and they create things together. His crafts bring family together for a positive experience instead of dwelling on the negative.

Ron and Bob with Ron’s grandson in Disney World. Ron feels grateful for every moment spent with his family.

This new life with ALS feels odd to Ron Presby. He is not used to being the center of attention, whether in a small group or a big crowd. When the laws changed in Pennsylvania in 2014 and he was able to legally marry Bob after being together for 17 years, they had a simple ceremony at Penn Museum where Ron worked with 30 guests and then had lunch. He didn’t need anything lavish because he was happy with what he already had in life.

That makes it even more special that Ron would agree to speak at The ALS Association Greater Philadelphia Chapter’s Hot Chocolate event at Adventure Aquarium. He will quite literally be the center of attention all while people are serving him with treats and drinks. At this point, he’s happy to take another chance and allow himself to be the focal point because this cause is so important to him.

Said Ron, “I want to make people aware of ALS and let them know about the research that is bringing so many of us hope. The ALS Association is a great resource and so are my family and friends. Maybe I can’t walk far, but I can still stand, and I’m pleased to stand to help others in whatever way I can.”

Ron suggests that others may call his positive outlook a ‘fool’s paradise,’ but he still prefers to take on this challenge with the same smile that helped him face so many challenges in the past. He is living a life of gratitude and The ALS Association is just as grateful that he is willing to share his story to inspire others to join his cause.

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