What Is a Parkinson’s Support Group?

When you hear the words, "Parkinson’s disease support group," do you think of a windowless room in a community building, with carpeted floors and smell of stale coffee? A group of people sitting in a circle ... one by one introducing themselves and how long they have been struggling with Parkinson’s disease (PD). A styrofoam cup full of coffee in one hand and a donut in the other. The room shares their pain and the group feels stronger knowing that they are not alone.

Everyone with PD is unique

This is a common belief of what a PD support group looks like. Some people are afraid to go because they might see "how bad" they could get or maybe they don't like "dwelling on the negative".

First, let me remind you that avoiding a group just because you might see people further advanced in the illness is just silly. Although it may trigger thoughts of how your disease might possibly progress, no 2 of us will experience Parkinson’s in the same way. Think of each Parkie as a snowflake, we are all unique.

I’m different in many aspects, such as my anatomy, coping skills, previous injuries or illness, how I absorb medication, my lifestyle. The list goes on and on. Being afraid of meeting other Parkies (other snowflakes) is bananas.

Support comes in different shapes and sizes

Have you ever thought of a fitness class or a lunch at the local burger joint as a support group? The first Saturday of each month, after our Parkinson's fitness class, we all shuffle to a local restaurant for lunch. We call it lunch mates. As I am woofing down my cheeseburger, sweet potato fries, and (of course) a chocolate milkshake, I look around the room. Everyone in the group is deep in conversation.

Some are chatting about what medicine they take to control their symptoms, while others talk about their plans for the upcoming weekend. I also am aware of the caring partners who are talking to each other and sharing their personal challenges.

It became clear to me that support happens on many different levels. Some of us might prefer the structure of a traditional support group. It’s safe, it’s predictable, and it doesn’t take much effort to participate. But others may like to go to a Parkinson’s fitness class, nudge their neighbor and ask them about the movement disorder specialist they see.

Benefits of joining a support group

You might ask, "Perky, what will I get out of forcing myself off my couch, (which has an indentation of where you’ve been sitting) and going to talk about how miserable my life is in front of a group of strangers?" Well Debbie downer, you could have benefits such as:

  • Getting advice about PD and various treatment options others have tried.
  • Realizing that you are not alone, which will help with isolation and loneliness.
  • Giving your couch a break - it needs it from all the Netflix you’ve been watching.
  • Having a chance to talk honestly and openly about PD without fear of judgment.
  • Reducing stress, depression, and anxiety.
  • Making a new friend ... expanding your Wolfpack.
  • Learning what resources are available in your area.
  • Most importantly, feeling a sense of empowerment and control.

In the end, it’s not what type of group you go to. Just find support in ways that you’re comfortable with. Remember, we’re always stronger together.

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