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What Living With Parkinson’s Feels Like

Three people share their experiences of living with the disease — and its early symptoms


spinner image three people living with parkinsons disease from left greg hummer teresa jackson and vikas chennin
Courtesy Greg Hummer; Teresa Jackson; Vikas Chennin

Parkinson’s disease is often associated with one of its more common symptoms, tremor. But over the years, we’ve learned that living with the neurological disorder is about so much more than managing movement. The disease can impact everything from mental health to memory, energy levels and more. It can feel all-consuming.

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“Parkinson’s can be scary [and] traumatic,” says 66-year-old Gregg Hummer, an underground silver miner turned sales professional who was diagnosed with the disease in 2014. “But you can still live a fulfilled life with this condition.”

Learn how this is possible, as three people share how Parkinson’s has shaped their lives.

Teresa Jackson, 60, Stephens City, Virginia

I just could not get my legs lifted

By the time Teresa Jackson went to the doctor for the visit that led to a Parkinson’s diagnosis, she had spent about a year noticing one new symptom after another. There was the pain and stiffness in her left shoulder and left hand — and then, the tremor on her left side.

At one point, she realized she couldn’t put her clothes on a hanger. She also started having trouble with coins: A cashier would give Jackson her change, and she just couldn’t seem to put it in her wallet. And on video calls, her daughter in Northern Ireland told her that her phone was moving.

When she walked around, “everything was very intentional,” Jackson recalls. “When I moved, it was with great concentration.”

spinner image teresa jackson with her family her husband their dogs her adult children and their spouses
Teresa Jackson, with her family, center; taking a family portrait.
Courtesy Teresa Jackson

Still, “Parkinson’s was never on the radar for me,” she says. But one day she became concerned about her mobility. This felt foreign to her, because after 35 years in the health care system, she was the type to take the stairs, not the elevator, up to the fourth floor.

“I noticed that I just could not get my legs lifted,” she says. “It was like I was losing my ability to move quickly or to run down the stairs. And I thought, You know, if there were to be a fire in this building, I don’t know that I would make it out. It was that difficult getting down the stairs.”

When she did eventually get a diagnosis, she was left feeling not just stunned but unprepared. Jackson was handed a prescription and told to make a six-month follow-up appointment. That was about it.

“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.

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“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.”

spinner image vikas chinnan in two photos one with his family and one on a fishing boat holding a very large striped fish he caught
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.

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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

spinner image greg hummer wearing a polo shirt with the logo of the parkinsons support group on the left chest
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.

It can be a difficult journey, but you can live with this.

—Gregg Hummer, 66, Orange Park, Florida

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.”

Video: Mom-Daughter Duo Hike 2,200 Miles to Fight Parkinson’s

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