Is a Parkinson’s support group your vibe?

I used to avoid talking about my health to others. I assumed most people didn’t want to hear about my latest ache or pain, pulled muscle or outpatient procedure. 

Then I got Parkinson’s disease. It changed things. 

In fact, a worldwide pandemic was just revving up, and I kept my diagnosis a secret for many moons. 

But in time I found that I really wanted to talk about my Parkinson’s, especially with those who shared my experience.

Enter the support group.

My neurologist encouraged me to check out a couple of Parkinson’s support groups organized through the hospital. At first I balked. 

In my mind, support groups were what I’d seen on TV sitcoms: awkward, unhelpful, worth some canned laughter. (Think Niles on “Frasier” or Bob Newhart’s group therapy.)

But others I knew said they were great, so, banking on their testimonials, I signed up for a women’s group.

And … it was like switching on a light, a bright one. All of a sudden I could talk without inhibition about my Parkinson’s experience. I was learning so much about my disease from real people who lived it. I was forging friendships I now cherish. 

The types of support groups available go beyond movement disorders like Parkinson’s disease. Name a medical condition, and there’s probably a group to join out there.

But is a support group right for you? Read on about the benefits of groups, and how to find one.

Why groups are great

• They show you are not alone: If you stick with one, a sense of belonging starts to cover you like a heated blanket. In my group, a couple of the people have trouble getting out and about, so having friends come to them virtually turns their living room into a party. And no house cleaning is needed!
  
• Emotional support – priceless: In the best Parkinson’s support groups, non-judgment prevails, and members can share their frustrations, successes, fears for the future, and more. (If that ain’t happening for you, it’s time to find another group.) Just chatting about each others’ families or hobbies can be emotionally soothing.
  
• Educational gold mines: We have invited speakers with a variety of expertise. The more you know about Parkinson’s, the more you can advocate for yourself. And the more hope you develop.
  
• Your challenge is theirs too. I’ve found that sharing of strategies weakens the woes. How to cope is a regular topic. In addition, I get as much information about emerging therapies for Parkinson’s disease from my support group as I do from my medical team. 

Where to find your kind

• Think globally, meet locally: Large organizations like the Parkinson’s Foundation and the American Parkinson Disease Association have local chapters offering support groups.
  
• The doc knows best: As they say in pharmaceutical commercials: “Ask your doctor.” Only I’m not trying to sell you meds, just peace of mind. He or she might have a referral for you.
  
• Cyber support: If you’re not the “in-person” type or if it’s difficult to get out of the house, search online for a virtual forum. Facebook has a few Parkinson’s groups.
  
• Rehab/therapy centers: Some Parkinson’s support groups focus on exercise. There’s no staring or comparing from ignorant people that you might see at a regular gym, so no worries.
  
• Neighborhood senior scene: The people who work and play at senior centers are usually well-connected, so ask around.
  

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I still believe most people wouldn’t want to hear me drone on about the latest symptom of Parkinson’s I’m dealing with.

But now I know a few who sincerely do.

If you think a Parkinson’s support group would be helpful, then lace up your metaphorical hiking boots and find one that fits you. As Unshakable Hikers know, the journey is easier when you have good company!

Photo credits: Sora Shimazaki, CBS, Anna Shvets, Shane Rounce, Hannah Busing