Linda Nickelson presents a painting by her daughter on Wednesday that depicts a red tulip, a symbol of Parkinson’s Disease. (Dylan Savela/News Advocate)
MANISTEE COUNTY, MICH. — Its cause is unknown and a cure is yet to be discovered, but on a daily basis Parkinson’s Disease affects 1 million Americans, and millions more counting friends, family and caretakers.
A disease involving the malfunction and death of neurons in the brain, Parkinson’s can carry many symptoms of varying degrees and can be treated, or controlled, in a number of ways.
A treatment, of sorts, that is perhaps overlooked is the love and support from those around, especially fellow Parkinson’s patients.
Since 2002, Jeannie Lewis and Linda Nickelson have headed the Manistee Area Parkinson’s Support Group that meets the third Thursday of each month (excluding January and February) at the Munson Healthcare Manistee Hospital’s Education Center, Room #1.
“It’s a place where people understand what you’re going through,” Lewis said, “because nobody could possibly understand unless they’ve been there and gone through it themselves.”
In honor of April’s designation as Parkinson’s Awareness Month, Lewis and Nickelson held a presentation entitled “Living with Parkinson’s” at the Manistee County Senior Center on Wednesday.
“Parkinson’s not only affects those who have the disease. It also affects spouses, family members and friends,” Lewis said. “It can affect our ability to work, participate in normal activities, and eventually our ability to care for ourselves. …
“I am amazed at the strength of the members (of our group) who live with this disease and care for and support each other,” she said. “We have Parkinson’s, but it does not have us. It’s part of who we are, but it does not define us.
“A diagnosis of Parkinson’s can be devastating, but living with it does not have to be.”
EFFECTS OF PARKINSON’S
Since neurons produce dopamine — a chemical that sends messages to the part of the brain that controls movement and coordination — the amount of dopamine produced decreases as Parkinson’s progresses, leaving a person unable to control movement normally.
Symptoms of Parkinson’s vary from person to person, but may include tremors, slowness, stiffness and impaired balance and coordination.
Dr. James C. Buswinka, DO, of Munson Manistee Hospital, said its effects don’t end there.
“When you say ‘Parkinson’s’ most people think about tremors,” he explained, “but it’s actually a disorder that affects people in much greater ways than the shaking.
“It has a lot of other symptoms that are, what we call, ‘non-motor’ symptoms that can affect your sense of smell, how your bowels work and your memory. The symptoms are highly variable,” Buswinka said. “Some people never get a tremor at all, but see changes in the way they move and walk.
“It can sometimes be challenging to diagnose, because people can present a very different set of symptoms.”
Buswinka said the disorder gets worse over time, but the rate at which that happens is quite variable as well. Parkinson’s most commonly affects people after the age of 60, but in rare cases can affect those in their 20s.
“It’s not really understood why people develop Parkinson’s Disease,” Buswinka said. “There are a lot of Parkinson’s experts who feel this is probably a combination of the genes we carry, but also the things that we might be exposed to throughout our lives.
“People have questioned various things: chemicals, infections, trauma. We just don’t know,” he said. “There are some families where it’s clearly handed down, but that’s the minority of Parkinson’s disease.
“About 10 percent of people who have Parkinson’s have a first-degree relative — a brother, a sister or a parent — who also have it, but most other patients are likely to be the only one in the family with the disorder.”
Buswinka said a number of treatment and medication options exist, the most common, historically, being Sinemet.
“It’s been around for many years and is still one of the best treatments,” he said, “and the reason for that is it works very much like your brain works. It’s giving you dopamine, a chemical your brain makes normally. So, when you’re not making enough of your own, that will help a patient move, walk and function more normally.”
BETTER TOGETHER
Lewis and Nickelson each have been living with Parkinson’s for decades now, but their journeys have been better together.
“We met through a mutual friend who said you two need to talk,” Linda explained. “I didn’t know Jeannie, she didn’t know me, but we connected right away. It was really nice to talk to someone who was dealing with the same exact things.”
Which of course is the spirit of the Manistee Area Parkinson’s Support Group.
Those with Parkinson’s or similar muscular disorders, as well as their caregivers, partners, family members and interested friends are welcome to attend the 11 a.m. meetings held on the third Thursday of each month in the hospital, located 1465 East Parkdale Avenue in Manistee.
Meeting agendas range from featured speakers, programs, research material or simply talking, sharing or listening, if that’s all one would prefer to do.
“We get people from physical therapy, doctors, pharmacists — anybody who can offer some help,” Lewis said. “We have resources that we get from the Michigan Parkinson Foundation, because our support group is under that umbrella.
“Sometimes we just talk. And we probably get more out of that than anything else.”
Nickelson agreed.
“One meeting, it was just Jeannie and I, and one other person,” she recalled. “It actually ended up being one of the best meetings, because this poor gentleman just needed to talk. We talked, we laughed, we cried, and he said when he left he’s never felt so good.”
Nickelson, who is also supported by her husband Chuck, said thinking postively is her best advice to those with Parkinson’s.
“I have good and bad days, and sometimes you just have to cry and let it all out,” she said. “You have to think positive and never give up. People around you are important.”
For more information on the Parkinson’s Support Group, call Lewis at (231) 299-1286 or Linda Nickelson at (231) 690-5048.
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