I have been told that Politics can be found in everything, but I never thought that I would run into them when I became a proud member of the Parkinson’s community. When I was diagnosed 5 years ago, I had no idea what it meant to have Parkinson’s. I was terrified. I had never met anyone that had PD until after I had gone through Deep Brain Stimulation surgery. Can you believe that? So I started to attend local support group meetings and although some of the groups were extremely depressing, I found hope in the strength of the Parkies around me.
I wanted to give back to the Parkinson’s community, so I took a look at what I could offer. I was a Marital and Family Therapist Intern and also had a certification in personal training. Not to mention, I was a people person, absolutely adorable and freakishly smart (which many of you already know)…. Oh! Did I mention humble? What I came up with was a program that would help Parkies create a balance between their mental health and their physical health.
So in 2010, the year I had Deep Brain Stimulation surgery, I approach my Neurosurgeon with the vision of creating a program called “Parkinson’s in Balance”. I would leave my current job (huge life change) and run support groups, fitness classes and host Parkinson’s events at no cost to the community. Long story short, my Neurosurgeon loved my business plan, agreed to pay my salary for one year as I proved to him I could create a program from the ground up and well, the rest is history! As my Dad says, “Allison, you’re the only woman I know that can go into brain surgery and come out with a job.”
Everything was going great! I was putting resources in the community, having a great time meeting new people and had the gift of creating my work schedule around my Diva Parkinson’s disease episodes. But then I noticed that groups that I had once attended for support were turning their backs on me. I was now considered “competition”. I won’t get into some of the comments I heard from the grapevine, but let’s just say they were shocking…Parkies hurting Parkies… so not cool.
So out of frustration, I decided to create an event where I would invite all the PD foundations, chapters and programs in my area, so they may share what resources they offer. This would allow the community to come together regardless of where they lived or what support group they attended and pick what resources worked for them. Not to mention the event would be free to anyone who would want to come. But as I should have expected, no organizations would full participate and support the Unity BBQ.
And this year was no different as I celebrate the 5th annual Parkinson’s Unity BBQ. I spent endless hours preparing to get the perfect theme (every party planner knows this is a crucial part of the event), find people who would like to sponsor my vision, locate a venue, buy decorations, rally my PD Wolfpack for help, and yes, the most important part… decide what I was going to wear!
But just as the previous years, I was not getting the support of the local chapters, groups, or foundations. Couldn’t they see that this was a great opportunity to support the community? That they could share their resources with each other and even make a new friend? Or that I had picked out the most adorable Hawaiian dress, complete with matching accessories and a flower hair clip?
Out of my frustration, I felt that maybe my Unity BBQ idea was a failure. I was not able to bring the local groups together, and maybe I should just give up on the idea. But then it came to me… I remember after a meeting with a local chapter about an upcoming event, I was labeled a “conflict of interest” and encouraged not to attend any future board meetings. Stunned, angry and in tears, I called my Dad and shared my infuriation. I said “If they don’t want me around… fine. I will just do my own program and not participate in any of their activities.” I was hurt… no judgment here people.
My Dad gently reminded me that once I lose sight of what’s important, like being a support system in the Parkinson’s community, I’m not doing it for the right reasons. In fact, that draws me into the politics that I have been trying to avoid all along. So this year, I put all my energy into creating a safe environment for Parkies near and far to come together to connect with old friends, make new ones and eat some awesome food. I invited the local foundations, chapters and groups, but that was not my main goal. I have decided to leave the political world and compliment, not compete with other organizations, because in the long road ahead, our community is stronger when we all come together.