There are many reasons to seek out support groups when you or someone you love has been diagnosed with Parkinson’s disease.
“Parkinson’s is a very complex disease,” said Paula McFeely Wiener, MSW, LCSW, a Parkinson Disease Information Specialist at the National Parkinson Foundation. “Support groups are one way of learning what you need to know and staying motivated to use that knowledge to live well with the disease.”
Parkinson’s disease is a slowly-progressing neurodegenerative brain disorder that affects a person’s ability to regulate their movements, body and emotions. Parkinson’s is the 14th leading cause of death in the United States and there are an estimated 50,000 to 60,000 new cases diagnosed annually, according to the National Parkinson Foundation.
Support in Numbers
A diagnosis of Parkinson’s disease can be a shock and leave the person with the disease and their family with many questions to discuss with their health care provider.
“Many neurologists suggest waiting a while after diagnosis to join a group,” explained Ms. Wiener. “Most newly diagnosed individuals need some time to accept what they’ve heard and incorporate the idea of having a chronic illness into their identity. The time is takes to do that will vary from person to person.”
However, she is among the experts who believe it is important for people living with Parkinson’s and their families to find a local support group at some point after diagnosis.
“If you can find a group of other people who have just been diagnosed with Parkinson’s diease in your area, then joining right away might be helpful,” Ms. Wiener said.
The point of joining a support group for Parkinson’s disease is to get help coping with the symptoms of the disease and also get encouragement from those who can truly understand your new circumstances.
“In addition to meeting other people with Parkinson’s and learning how they are managing their disease, most Parkinson’s disease support groups make education a high priority,” Ms. Wiener said. “Meetings often focus on a specific topic such as exercise or speech or may feature an outside speaker.”
These groups are not just for the person with Parkinson’s disease, but also for their care partners.
“Most Parkinson’s support groups include both the person diagnosed with Parkinson’s disease and their care partners,” Ms. Wiener said. “Because the disease affects everyone in the family, it is a good idea for caregivers to learn as much as possible about it, too.”
Ms. Wiener suggested looking for caregiver specific groups that are available in some areas.
Find Your Own Local Support
There are many different kinds of support groups and a variety of ways to find the one that is right for you.
The National Parkinson Foundation has a helpline at 800-473-4636 or 800-473-4636 FREE and people can call in to get information about a local group.
Ms. Wiener also suggests calling the local Area Agency on Aging to find a support group.
The Michael J. Fox Foundation for Parkinson’s Research advocates finding a support group, but also encourages people to keep trying different groups until they find the right one.
Also, consider an online support group if face-to-face meetings aren’t your thing or if there isn’t a group in your area. MyParkinsons.org is one online resource available for caregivers to those living with Parkinson’s disease.
Family caregiver and author Lisa J. Shultz talks about how she starts the new year to have enough energy for caregiving.
If you aren't sure what elder care is and how your role as a family caregiver fits in, we've outlined different types of care in this article.
We have our top five blogs based on readership in 2019. Take a look at this list to review topics from bathroom hazards to caregiving myths.