What Living With Parkinson’s Feels Like

“It was scary, because we didn’t have a lot of information, and we didn’t know what this diagnosis meant,” she says. “And to see your children and your husband try to grapple with this diagnosis — sometimes I think that was harder than me coming to terms with the diagnosis.”

Now Jackson’s focus is on giving back to the community. She authored a book, Thriving With Parkinson’s: Finding Joy After the Diagnosis, and she competed in the Mrs. Virginia competition (2020, 2021) to raise awareness of Parkinson’s disease. She’s also the host of a podcast that focuses on sharing resources and strategies for living with Parkinson’s. All of this has helped her move forward.

“You really go through a grieving process,” she says, because you compare what you thought your life was going to look like to what you’re actually left with now. After a couple of months of grieving, she came to a realization: “My story’s not going to end here. I have a lot left to do,” she says.

“I think it’s critical for people to find purpose in their life,” she adds. “I think that’s what makes people do well over people who don’t do well.”

Vikas Chinnan, 47, San Carlos, California

It just tires you out. It’s like constant motion

Vikas Chinnan was at the peak of his career when he was diagnosed with young-onset Parkinson’s at the age of 45. (Sixty is the average age for a Parkinson’s diagnosis; a diagnosis that comes before 50 is considered early onset. Receiving a Parkinson’s diagnosis before 40 — as Michael J. Fox did — is rare, though an estimated 5 to 10 percent of those with Parkinson’s experience symptoms before 50.)

One of his first symptoms was a faint tremor, a little engine inside his right arm. “It was very mild, but it was definitely noticeable, and I could feel it,” he remembers. “I could control it by thinking about it, or by holding my hand, or by stuffing my hand in my pocket. But as soon as I stopped focusing on it, the tremor would start up again.”

Vikas Chinnan, with his family, left; on a fishing trip.

Courtesy Vikas Chinnan

The tremor took a lot out of him. “It just tires you out. It’s like constant motion,” he adds. “Even though it’s involuntary, it actually does fatigue you quite a bit.”

Eventually, he realized that the tremors weren’t getting better — and they weren’t going away. So he scheduled a DaTscan, a brain-imaging test that tracks dopamine, a neurotransmitter that plummets in people with Parkinson’s. (Though much remains unknown about Parkinson’s, dopamine appears to be crucial for the disease. One type of treatment attempts to restore dopamine levels with medications such as dopamine agonists and enzyme inhibitors.)

The day he received his diagnosis, Chinnan and his wife took their two sons, now 15 and 12, out for ice cream. “We shared the news with them and said, ‘We have a lot to learn, and we’ll share more as we know it,’ ” he says. “They’ve really stepped up and been supportive, and taken on more responsibility as young men,” he adds.

Overall, he says, his experience has been about 90 percent positive. “The 10 percent that’s not great is living with something that is progressive, that there is no known cure for, that feels like a one-way street,” he says. Dealing with the symptoms is also difficult, he adds.

“The times when I think about the fact that it’s something that I will live with forever, and that all signs point to being in a wheelchair in 10 to 15 years — that’s daunting,” he says, “and kind of gets me down sometimes. And the idea that I’ll probably never wake up without stiffness or rigidity or pain ever again is a harsh, harsh reality.”

Still, “it’s not a death sentence,” Chinnan says. The diagnosis has transformed both his life and his career: He is committed to Parkinson’s advocacy, from raising awareness to expanding access to resources. He’s also thrown himself into new activities: boxing, tai chi, yoga and Ping-Pong.

Gregg Hummer, 66, Orange Park, Florida

I also started feeling depressed, for no reason at all

Greg Hummer, a member of the Parkinson's Support Group in Orange, FL.

Courtesy Greg Hummer

Gregg Hummer’s first symptom wasn’t the telltale tremor. “I started feeling tired all the time,” he remembers, so he started taking naps. As time went on, he says his naps became more frequent and longer lasting. But then his wife started noticing that he was having trouble keeping up with her while they walked together. “I also started feeling depressed for no reason at all,” he says.

Hummer changed jobs, hoping that would make things easier. The opposite happened. He struggled with learning new skills. His exhaustion wasn’t improving, and his depression was getting worse. “I found myself dropping things and losing my balance while doing simple tasks,” he remembers.

Then he started noticing a small tremor in his right arm. “I told the doctor, and he had me close my eyes and reach [my hands] over my head. I fell down over the examining table,” he says. After a trip to a neurologist, he was diagnosed with Parkinson’s disease.

Now he keeps busy supporting others with the illness. He chairs a local support group and leads an exercise group. Along with Chinnan, Hummer serves as a member of the Parkinson’s Foundation’s People With Parkinson’s Advisory Council. He’s also participated in clinical trials.

“Find a local support group and get involved,” Hummer says. “Exercise, read, learn something new. It can be a difficult journey, but you can live with this.”

Another bit of advice: “If you notice something different going on in your body, go to a doctor,” he adds. “It might be nothing. But if it is [something], taking care of it early can prevent more serious consequences. You have nothing to prove by not seeking medical attention. You have everything to gain by getting treated right away.”