How Does Your Parkinson's Support Group Grow?

I was not sure about participating in a support group after my Parkinson’s diagnosis. I had met only one person with Parkinson's disease (PD), and he did not go to the group meetings.

What did I expect from the PD community, especially since I had been relatively ignorant of Parkinson’s until I had it? In all honesty, I must admit that I had some reservation about seeing persons who were advanced in the disease. I wondered how they would accept me. I also wondered what I could contribute as a PD newbie.

Leading the group

My first visit was after I accepted an invitation to speak about exercise. Months after that I made another presentation and then began attending on a somewhat regular basis. I was touched to be asked to lead the group several months later. The leader stepping down had served the group well for years, even after her husband with PD passed away.

I thought it would be best to have co-leaders so we could share tasks according to our talents. I also thought co-leaders made sense in case one person might not be able to attend every meeting. After discussing the "what" and "why" of a successful support group, 2 of us took the lead.

Over time we looked at "how" to be a good support group by blending enough consistency to keep those who wanted "the same" with variety for those who wanted to "step out of the box" now and then. We are still working on this.

Reaching out to the community

The murmuring around the room grew into excited conversation and laughter as 1 hour turned to 2. What was going on to keep these people engaged?

Parkinson’s support group members were visiting students enrolled in a physical therapy doctoral program. The students had been learning about PD, diagnostic assessments, medications, and physical exercises available to manage the disease. The support group goal to help others in the community become more aware of the disease by sharing their personal experiences was met.

Reaching in to support group members

It took several conversations across a few months of meetings to suggest how members could support each other outside of meetings. This grew in part from a concern for members who live alone. As a result, the "Members Serving Members" section was added to our directory. For example:

Your handwriting has gone down the tube? Joey will come over and write cards, notes or letters for you to mail.

You are suffering from a cold, injured thumb or such, and need help with your growing stack of laundry? Susie listed laundry as a service she can provide.

You will have deep brain stimulation surgery next month? Several members have created a meal train to help you and your family for a week or more.

Reaching across generational lines

Some persons with PD are diagnosed younger than age 50. Young-onset folks in their 20s or 30s are building their work resumé and family. Support group members can help them explain PD to their employer and fellow employees. Likewise, they can help newly-diagnosed moms and dads explain Parkinson’s disease to their children.

Imagine stepping into a large room in an old, well-worn school building. The windows here are plentiful but let in little light because of grime. There is no grime on the shelves full of school supplies, shoes, and coats. Brand new duffel bags fill some tables along the back wall. That is where group members sit to design, color and attach a personalized name tag to each bag that will be given to an elementary student who is new to the foster system or is homeless.

The possibilities are limitless

These types of outreach demonstrate a few ways a PD support group can build a stronger support community while enhancing its community at large. We continue to brainstorm the best practices for our group and hope any one of these examples sparks an idea for yours.