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 and one by one they introduce themselves and how long they have been struggling with the common ailment, Parkinson’s disease (PD). With a Styrofoam cup full of coffee in one hand and a donut in the other, the room shares their pain and the group in a whole feels stronger by knowing that they are not alone.

Parkinson's support groups

This is a common belief of what a Parkinson's disease 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 Parkies further advanced in the illness, which will then trigger thoughts of how your disease might possibly progress, is just silly. Think of each Parkie as a snowflake, we are all unique. No two of us will experience Parkinson’s in the same way. 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. But have you ever thought of a fitness class or a lunch at the local burger joint as a support group?

Support comes in different shapes and sizes

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 was deep in conversation. Some were chatting about what medicine they take to control their symptoms, while others talked about their plans for the upcoming weekend. I also was aware of the caring partners who were 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.

Giving the couch a break

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:

• Get advice about your PD and various treatment options others having tried.
• You will realize that you are not alone, which will help with isolation and loneliness.
• You will give your couch a break… it needs it from all the Netflix you’ve been watching.
• A chance to talk honest and openly about Parkinson’s without fear of judgment.
• Reduce stress, depression, and anxiety.
• Make a new friend… expand your Wolfpack.
• Learn 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.