It started with a tremor in his pinky finger. Within a year, his hand began to shake. Greg’s doctor diagnosed it as an essential tremor, possibly nerve damage caused by an old sports injury.
Back then, almost 15 years ago now, Greg didn’t let the tremors throw him off. A type-A personality, who focused on his work, he considered himself a “warlord of commerce.” He wasn’t the kind of person who stopped to smell the roses. He didn’t let little things slow him down. He just kept grinding it out.
It wasn’t until 2011, two years after those first little tremors, that he noticed something else was amiss. It was during his daughter’s wedding. The wedding was beautiful. Everyone said so. And many of the guests also repeatedly said how wonderfully fragrant the flowers were, particularly Greg’s daughter’s bouquet. The wedding was his moment to stop and smell the roses, and yet:
“I couldn’t smell a thing.”
Afterward, Greg did a simple internet search using “tremors” and “loss of smell.” The results made him realize there was a good chance it was Parkinson’s disease. Three months later, in April 2011, a neurologist gave him the official diagnosis, he had Parkinson’s.
For many people, a Parkinson’s diagnosis triggers sadness, fear, denial, or anger. For Greg, a confident and driven person, the diagnosis sparked action.
“I don’t have time for whining and feeling sorry for myself. I just said, ‘I’ve got Parkinson’s; let’s figure it out.’”
Figuring it out
Greg, a 23andMe Parkinson’s research participant who has been raising awareness about the disease for years, shared his story with us recently. Like a lot of conditions, Parkinson’s disease affects people differently.
“I say if you know someone with Parkinson’s, that means you know one person with Parkinson’s,” said Greg. “It’s different for all of us.”
It’s heartening to see the recent wave of popular movies that include characters with Parkinson’s disease. Shows like Shrinking or the crime series Kaleidoscope have included characters living with the disease. And, of course, Greg has been inspired by Michael J. Fox and his work raising awareness about Parkinson’s and money for research. He’s already seen the recently released Fox’s documentary Still twice. Greg said there are many parallels with his own journey.
Beyond the raw view of what it’s like dealing with a severe movement disorder, Fox’s attitude hit home for Greg. Fox, whose Parkinson’s also started with a tremor in his little finger, has been a tireless advocate for research. And even with the pain and difficulty of living with a slowly debilitating disease, Fox has had the wisdom to see that his Parkinson’s has forced him to look at the world differently.
“Sometimes in meditation, I can find … that perfect place of serenity and peace and not questioning anything,” Fox said in a recent interview. “I couldn’t do that (before). That’s where the title of the movie comes from. I had written in one of my books I couldn’t be still until I could no longer be still.”
That resonated with Greg, who has taken up art and writing poetry since developing Parkinson’s.
“Trust me, if you knew me as a warlord of commerce in my business days, you would have never expected me to get into art and poetry,” he said. “Now I’m kinder. I’m gentler. I take more time and look people in the eye. I listen.”
Some of what he has been able to create, even with a condition that causes his hand to shake, baffles him. One of his drawings, a beautiful image of a hand, a brain, and a butterfly, he did one night when he couldn’t sleep.
“Anybody who knows me knows I can’t draw a lick,” he said, then holding up his trembling hand, he added. “If you see my right hand, you’d say that’s impossible, but it happened. I drew that in one sitting.”
For Greg coming to terms with his Parkinson’s meant taking stock. After his diagnosis, he understood that one part of his life was over, but another had begun. He didn’t want to focus on what he couldn’t do.
“I wanted to make a list of new things I could do,” he said.
Although not religious, Greg said he is “faith-oriented.” What he means is that he believes in God, and he believes God has a plan for him. He doesn’t know the plan yet. He’s still figuring it out.
“I’ve accepted I have Parkinson’s for a reason, but I have no clue what that reason is other than to help people,” said Greg.
Part of his approach has been to be engaged, whether connecting with people recently diagnosed with Parkinson’s disease or participating in local or national groups. He’s applying the skills he honed over the years in business to Parkinson’s. He wrote a book, Rising Above Parkinson’s. Whether working as an “ambassador to the Parkinson’s community” or as a “Parkinson’s Warrior,” he’s following his instincts.
Greg knows that hope is not a plan, but having hope can give you the courage to move forward. For Greg, it also helps inspire him to be engaged in research efforts, even if he knows there is a good chance that he may not benefit from that research. He is active with the Parkinson’s Foundation, the Davis Phinney Foundation, as well as Jax Hope in Florida and Parkinson’s Pointe in Colorado. He’s also an active participant in 23andMe’s Parkinson’s Research community, even though he does not appear to have known genetic variants in genes associated with the disease, such as LRRK2 and GBA.
“I want to do everything in my power to end this disease in my lifetime,” said Greg.
There was never a doubt that he’d participate in research, and along with participating in 23andMe research, he has contributed to more than 50 other studies.
“I want Parkinson’s to wish it had never met me.”
He knows that by participating, scientists may learn more about the condition that could help him and others. And he is doing all of this while also dealing with his health issues. The tremors on the right side of his body have made it difficult to eat, shave, and drink.
Recently he underwent a surgical procedure called Deep Brain Stimulation (DBS), which involves placing thin metal wires in the brain that send micro electrical current to the brain meant to help reduce his dyskinesia, the involuntary and uncontrolled tremors. It’s too early to tell if the procedure has helped him as his doctor works at properly calibrating the treatment. That said, since the operation, he has been able to smell for the first time in 15 years.
But beyond the treatment, Greg said there are still things that are revealing themselves about his condition. In the drawing he made one night when he couldn’t sleep, there were things in the image that he is only now starting to process. On the butterfly’s wings are little details that he believes represent the procedure he underwent, for instance. And on the hand, in tiny letters, is his name. Not long after drawing that, he saw a verse in the Bible, “Behold I engraved you on the palms of my hands.”
“God is holding us in our hand with our name etched on his fingers,” said Greg. “God has given me a gift to talk about this, and I want to reach and inspire people and give them hope.”