A journey: Living with Parkinson's

Rochester's Steve Grinnell participated in the three-day ITTF Parkinson’s World Table Tennis Championship tournament in Pleasantville, N.Y., last month. Grinnell was diagnosed with Parkinson's three years ago. (Photo by Glen Randmer)
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Steve Grinnell has no idea how three years ago he wound up with Parkinson’s Disease. 

Doctors don’t know, either, as he says is often the case with this disease.

But at 48, Grinnell does know a couple of things as relates to his Parkinson’s. One is that it has greatly diminished his quality of life, leaving him with tremors, physical exhaustion, impaired balance, troubled grasping things with his right hand, slow right-arm movement and problems sleeping. That’s to name just a few of his symptoms from this progressive nervous-system disorder.

But what resonates even more with Grinnell when it comes to Parkinson’s is that he’s not going to let it own him.

Married, the father of boys ages 16 and 14, an education specialist in the bio-chemical genetics laboratory at Mayo Clinic, and a life-long sports enthusiast, Grinnell still has a life to live.


He’s bent on living it. That’s why ping pong balls can so often be heard bouncing in his house, Steve taking on sons Grahame and Griffin almost daily in table tennis.

"I don’t know what the future holds for me," Grinnell said, also noting that Parkinson’s can greatly shorten a life span. "But I want to be able to spend as much time with my wife and kids as I can. With some people, Parkinson’s is very progressive, and with others it is very slow. But one thing that can help you is staying active. It tends to slow that progression down."

His Mayo Clinic doctor, Rodolfo Savica, says exercise is crucial for Parkinson's patients.

"All of my (Parkinson's) patients who are doing well are working out and staying active," Savica said.


That in mind and also with a desire to learn more about his disease, Grinnell boarded a plane Oct. 11 bound for Pleasantville, N.Y., his table tennis paddle tucked in his travel case.

Pleasantville was the site of the first-annual ITTF Parkinson’s World Table Tennis Championship tournament, an event founded by Nenad Bach, an artist/composer/perform/producer who is also living with Parkinson’s.

Bach explained that the tournament was for well more than the 62 who played in it. 


"They didn’t just play for themselves," Bach said of the participants. "They played for the 10 million people around the world with Parkinson’s Disease who might be laying (on) their couches."

That’s what Grinnell is so desperate to avoid, a steady retreat from the active world he had forever embraced. His Parkinson’s has stripped him of his ability to continue with two of his biggest joys in life, playing tennis and coaching soccer. Still, there remain other outlets for him, including table tennis.

So, when the opportunity surfaced — expenses mostly paid in order for him to take part in the Parkinson’s World Table Tennis Championship tournament in New York — he couldn’t say no.

It was Grinnell’s co-workers at his Mayo Clinic lab who generously funded much of his trip, helping pay for his plane ticket, etc. after getting wind that such a tournament existed. 

They rallied around him, as did his wife, Jennifer, and Steve’s parents, who also pitched in. All of them wanted Grinnell to take advantage of this opportunity.

None pushed harder than Jennifer. She’d watched him go through the stages so often associated with early-onset Parkinson’s, with the denial and then grief. The New York trip would be an opportunity for Steve to commiserate with and learn from those going through his same painful journey.

"Having early-onset Parkinson’s can be very isolating," Jennifer said. "There aren’t a lot of support groups out there. That is one reason I pushed him so hard to go on the trip."

Still, Steve almost didn’t go.


"I was worried I'd be badly out-matched," Grinnell said. 


After three days spent playing in the tournament, his competitive side wasn’t pleased, as he went winless. But having Parkinson’s has begun to change his outlook on many things. That includes competition, which for so long drove him.

A quest to win table tennis matches wasn’t what this trip would be about. For Grinnell, its purpose was to stay active and do that alongside people in the midst of the same difficult trials as him.

It proved to be three of the better days of his life. 

"It was so good to commiserate with people going through the same stuff," Grinnell said. "Being with them, it validated what I am going through, seeing others with the same symptoms."

Their fight, drive and willingness to own their situation were what inspired him most.

While Grinnell has been living with Parkinson’s for four years, he was heartened after watching and meeting folks who have endured it for so much longer.

Grinnell’s hope now is that he not only stays inspired by his New York trip, but that he can inspire others in the Rochester area who are dealing with Parkinson’s.

Possibly a table tennis club in Rochester for Parkinson’s patients? He’d like that.

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