For a couple of years after being told I had Parkinson’s, I was lost in the “Desert of the Recently Diagnosed.” And it was a dark place. I remember googling for help and info, only to find links written in medicalese, or support groups far from my very suburban gated community.
In time, with a silver sneakers coach, I founded a support group that still meets twice a week to talk and to “Parkizise” – that is, to do PD appropriate exercise routines for balance, strength, and flexibility. The group grew. I continued to attend local events and conferences on Parkinson’s, but when I found PMD Alliance, I felt at last that I truly belonged. “Goldilocks” was the word that came to mind, as referring to something that is “just right”.
With the years, it became clear that PMD Alliance is in the sweet spot between the big organizations and the local groups. To me, it became like Cheers, a place where everybody knew my name, and I knew theirs; where I found help and resources, as well as friendship and warmth. Among the many activities—in person and virtual—made possible by PMD Alliance, I have listened to expert talks, attended workshops on how to lead a support group, and been given a real, analog toolbox with props, cheatsheets and other cool, useful items for my group.
When I was asked to become a PMD Alliance Ambassador, I felt so honored! Now I attend PD related activities with a sense of purpose I lacked in those first years as a parkie. Most importantly, I draw direction and a regular recharging of batteries. For example, I just came back from the All In Summit that took place last October in Washington. The event was transporting. We were cocooned in a centric hotel in DC among a host of people with a shared interest in Parkinson’s. We danced, we got useful info, we improved. We made tulips for the coming Parkinson World Congress in July 2023. We talked, conversed, did poetry, shared, unburdened, connected, etc.
Now, I’m doing my best to bring to my support group a piece of what we lived. I hope that I am up to the task.