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.
Unbelievable !!!!! Just unbelievable
ALLISON, OUT HERE IN THE INLAND EMPIRE (IE), YOU ARE A DYNAMO!! WE SO ENJOYED WHEN YOU SPOKE TO OUR RIVERSIDE SUPPORT GROUP A FEW YEARS BACK AND I HAVE ENJOYED RUNNING INTO YOU AT OTHER PD EVENTS. YOUR SPARK, YOUR CHARISMA, YOUR CUTE CLOTHES!!!!, MY GOSH! WHAT MORE COULD ANYONE EXPECT FROM SOMEONE GRASS ROOTS STEPPING UP TO THE PLATE AND PITCHING A NO HITTER??? YOU ARE AWESOME GIRL, AND ALL OF US IN THE IE LOVE YOU!
FIVE YEARS?? What an accomplishment! Let’s pass on the Love and Support, People!
I am dumbfounded, troubled, surprised, angry and just POed that you have been treated as a “conflict of interest” and a “competitor” by aome PD support groups. Here’s what I would tell those that have resisted your efforts to bring unity to the PD community – S…(rhymes with dew) You! .
Allison, I applaud you for all you’ve done on behalf of the PD community and wish I could have attended the BBQ to show my support in person. Keep up the good work and don’t let those who are trying to created disunity get you down!
John
YOU GO GIRL!!!!!!!!!!!!
YOU GO GIRL!!!!!
it has been my experience that that getting the ” pd community ” to do anything in unison is akin to watching an octopus fall out of a tree .
ha! So true!
Allison, how I wish I could’ve been there to support you <3 Although I'm here in Texas, I'll be cheering you every step of the way. Thank you for all you do!
Miss you cupcake!
I’m not sure what corporate groups aren’t being supportive but as co-leader of the YOPD Young Onset Group and The Charles Anderson support group representing the Claremont area, We are Pro-Unity Activities. The distance from Claremont prevents most from attending but were Supportive!
My family had a wonderful afternoon! It’s your fighting spirit that encourages many fellow Pd’ers. You are the Ball of Energy were all drawn to and keeps hope alive. You live life to its fullest, that’s very contagious! I say, “You Go Girl!” Remember Apathy is the enemy. It’s one encouraged life at a time!.. Keep on keeping on!
Keep up the good work. I like your website and your sense of humour that shines through your words. We all need to work together. Wishing you well and success in your future endeavours.
I think your writings and website are great. I’m sorry politics got in the way of your BBQ party. Thanks for opening my eyes to that aspect of the PD community at large. I’m off on my own and don’t really know anyone else with PD. …
Maybe we all just need to take a break, listen to Irene Cara sing “Out Here On My Own,” have some frozen yogurt, and start again.
https://www.youtube.com/watch?v=i4mkRwkQRoQ
I also have seen a bit of this among Facebook Groups. One or two resent reposting. However, most believe as I do that dissemination is the only thing that is important.
Regarding national organizations, they each have their own culture. I’m involved in one that has the feeling that there is only a finite amount of money available for contributions. BTW, the overhead is only about 10%. I think the pot of funding is more expandable to different constituencies.
In my area there are only three groups and I belong to all. Not much competition though.
I have shared your site with our Support Group Larimer County in Fort Collins Colorado. I find your humor invigorating. Please, do what you are doing and what you messages are. I like it. Stan Bryant does Poetry for and about Parkinson’s. Sad, funny, thoughtful, tragic, real. Keep it up and don’t let the downers get to you. Stay on track. It’s a good one
I, too, have run into the “don’t compete” attitude among the various PD foundations. It seems like, for many of them, fund raising is their primary purpose. Why? To pay their salaries is my guess. We run our local PD group locally. No one gets paid. We set up our own conferences and try to do what’s best for our local Parkies.
I’m glad you do what you do!
Hugs my friend.
Allison, You are a true inspiration to so many people not just Parkies. You are a ray of Sunshine every where you go and truly know how to make others feel special and important. Thank you for helping me thru my difficult time of my life. Never give up your dreams! Because your always giving each and everyone of us so much to look forward to with all your courage, endless dedication and your always giving to all of us! Thank you so much!
Allison
You have.been a great inspirationn!
You have given. So many so much hope.
Hold your head high, you have accomplished more than you will ever know.
Mark ramos
Thank you for your kind words Mark!
PERKIE for PRESIDENT.
Now there is a candidate that I can (and do) support!
🙂
I like the sound of that!