There is a saying that “when you know one person with Parkinson’s you know one person with Parkinson’s” but when you are in a PD support group you get to know many people with Parkinson’s. We were about 8 years into my husband’s diagnosis before we found our first support group meeting and I am so glad that we did. The fellowship that comes from being with people who are all facing a chronic and progressive illness is remarkable. Discussing actual experiences helps all of us better understand his diagnosis as we share information we won’t or can’t get from a medical team.

Parkinson’s presents with a broad spectrum of symptoms, many of which were represented in our new circle of friends. We met People with Parkinson’s who were at all different points in their journeys, some newly diagnosed some long-timers, some with young on-set, some older folks like us, some women, some men, some with physical challenges and others facing cognitive decline.  There were wheelchairs, walkers and some who strolled in as if nothing was wrong. Becoming part of the group gave us opportunities to watch as this disease progressed in different and sometimes more severe ways.  And in some cases, we even had the opportunity to say goodbye.

As difficult as it is for us to watch as friends go downhill, I also know it is a good thing that we are here to share it with them and especially their CarePartners. They all need to be surrounded by people who can appreciate what is happening and offer support. We need to be a part of this group of wonderful people at all stages of my husband’s illness and understand what the future might hold for us. Yes, it may mean we face losing more friends, but we gain so much more from having known them. We all need to be here for each other, holding hands as it were, to make the journey less traumatic for everyone.