Generation Us: Teaming up with others can improve life with Parkinson's disease


A diagnosis of Parkinson’s disease can feel overwhelming at first, but safety in numbers can help fuel a sense of support.

“It does offer challenges, but there’s reason to be hopeful,” said Dr. Matthew Barrett, a movement disorders neurologist at the University of Virginia Health System.

The neurodegenerative disorder’s symptoms can be tricky to diagnose sometimes.

“The symptoms may be very mild and hard to assess” in the early stages, and the disease process actually can begin a decade before symptoms begin to appear, Barrett said. “The way that Parkinson’s disease presents varies greatly between individuals, regardless of age.”

Many patients display visible movement differences, such as slowness, muscle stiffness, balance problems or tremors. Others may be dealing with depression or sleep problems.

“They may have more trouble with mood and cognitive issues, whereas someone else may have trouble with balance and swallowing,” Barrett said.

About 1 million Americans have Parkinson’s disease, and about 60,000 are diagnosed each year. Barrett said that the average age of onset is about 60, at a time when many people are making plans to follow their retirement dreams.

But many patients are younger; actor Michael J. Fox was 29 when he was diagnosed in 1991. Fox went public with his battle in 1998 and established the foundation bearing his name to work toward finding a cure.

Fox and other early-onset patients face a different set of challenges, Barrett said.

“It greatly affects one’s employment,” he said. “How long will you be able to continue working?”

Medication strategies also need to be different for younger patients. “With someone who’s younger, we may be treating the disease for a much longer period of time,” he said.

Marcia Aulebach was diagnosed with Parkinson’s disease about 10 years ago, but only after multiple attempts to find the answers.

“ ‘You’re too young to have it; it’s your hormones.’ I can’t tell you how many times I was told that,” she said. “Our biggest thing is getting diagnosed and getting the proper treatment.”

And for younger patients out in the dating world, shifting energy levels can make meeting people through shared activities more challenging, she said.

As with any other serious condition, it’s easy to get overwhelmed by devouring too much information online. Instead of assuming the worst, it’s important to remember that each person’s experience with Parkinson’s disease will be different. Ongoing research can lead to new medications and treatments for better quality of life.

“One thing I like to reinforce is that the disease is quite variable,” Barrett said. “Someone can live quite well with Parkinson’s for a number of years.”

Camaraderie and friendly support from others facing many of the same challenges can help lighten the load.

Aulebach leads an online group so people with early-onset Parkinson’s disease can share their experiences with their peers. “Young patients don’t always want to go to a support group at a nursing home,” she said.

And at any age, there’s nothing like teaming up with others for a great workout to lift moods and revel in a sense of empowerment.

Resources available in Charlottesville include the following groups and classes:

» Positively Parkinson’s Support Group meets at 12:30 p.m. on the third Friday of each month at the Old Parish Hall of Church of Our Saviour at 1165 E. Rio Road. Contact Susan Dietrich, the Virginia coordinator of the American Parkinson’s Association, at sjd3c@virginia.edu or (434) 982-4482.

» Parkinson’s Disease Support Group meets at 1:30 p.m. on the second Monday of each month at Westminster-Canterbury of the Blue Ridge at 250 Pantops Mountain Road. sjd3c@virginia.edu or (434) 982-4482.

» Parkinson’s Disease Caregiver Support Group meets at 10:45 a.m. on the first Thursday of each month in the Senior Center’s board room. It’s a process group for caregivers in a confidential setting. (434) 982-4482.

» The PD Yoga class meets at 11 a.m. Mondays and 10:45 a.m. Thursdays at the Senior Center. Caregivers can drop their patients off at the Thursday class and then join the support group. Contact Sharon Honeycutt at alliedyoga@gmail.com or (434) 218-0580.

» Fluvanna PD Support Group meets at 10 a.m. on the first Saturday of each month at Fluvanna County Library. (434) 982-4482.

» Rock Steady Boxing: This boxing training program designed to help people with Parkinson’s boost their fitness levels and slow the progression of the disease is offered at Ix Park in Charlottesville. (Barrett took a Rock Steady Boxing class in Williamsburg to see what it was like, and he recommends its aerobic exercise and camaraderie aspects to his patients.) Details can be found at rocksteadyboxing.org. For local times and details: charlottesville@rsbaffiliate.com or (804) 833-4011.

» Punch It Out: A new exercise class at ACAC offers workouts to build balance and strength, make large movements easier and keep voices strong, among other goals. Contact Pam Finney at pamelaf@acac.com or Rebecca Lehnert at rebeccal@acac.com.

» Group Singing: Speaking of keeping voices strong, all kinds of music are explored from 1 to 2:30 p.m. on the first and third Mondays of the month at Ivy Creek United Methodist Church at 674 Woodlands Road. Contact Sandy Natterer at sjnatterer@gmail.com.

» Ageless Grace: The brain fitness program meets at 1 p.m. Mondays and 1:30 p.m. Wednesdays at the Senior Center. Contact Sheila Queen at squeen125@gmail.com.

Jane Dunlap Sathe is the features editor for The Daily Progress. Contact her at (434) 978-7249 or jsathe@dailyprogress.com



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