For the first few years after his diagnosis with Parkinson’s Disease, my husband and I were going it alone. We were both working and didn’t have time for support groups. Besides, my father had PD for several years before he died so I thought knew what to expect. I was so wrong. There was one person at work whose father had PD and we met occasionally for coffee, but our situations were so different. I was depending on webinars and bi-annual visits with our neurologist for answers to my many questions. A lot of what was happening felt so strange and I didn’t feel comfortable talking to my husband about it. I felt alone and lost. 

Shortly before I retired and became a full-time CarePartner, I started looking for a Parkinson’s Disease support group. I didn’t know what we would find but knew I needed something, someone who would understand our struggles. That first meeting was wonderful. We walked into a room full of people who weren’t staring at us or judging us, they were simply welcoming us with love. I remember crying a bit as we shared our story. It was scary joining with others who were farther along in their journey, yet it also gave us the opportunity to see the diversity. I hadn’t really understood how Parkinson’s affects everyone in such unique and different ways until we met this amazing group of people.

We have been a part of this group for several years now and I serve as a co-facilitator. I will gladly admit that the support has been more for me than my husband. It’s a place where we, I can talk about the challenges we face and often find solutions. We are able to share our journey with others who truly get it more than our doctors or our families. The one piece of advice I would give to anyone whose loved one is newly diagnosed, is don’t wait. Caring for someone with a chronic illness like PD can be impossibly difficult, find a group to help you on your journey and hold them close.