Today the Purple Community team is thrilled to bring #WhatsYourPurple to life with a new opportunity for YOU to share YOUR story.
We have been honored to encounter countless individuals who have shared their experience with cancer, Parkinson’s and other neurodegenerative diseases. Purple Community cannot thank you enough for opening your hearts to us. Your words have the power to inspire others who may be on a similar journey.
Our hope is that you will take this opportunity to share your story and help others find comfort in knowing they are not alone in their experience.
We know this can be intimidating, so we asked our friend Alison to go first. We’re here to listen, Alison. #WhatsYourPurple
It all started with pain.
In mid-2011, I noticed pain in my right arm. The pain was soon joined by stiffness and rigidity. I was training intensely toward my black belt in Krav Maga at the time, so I assumed it was just overtraining (something I did a lot of), and just pushed through it.
The rigidity got worse – it became difficult to brush my teeth without using my left arm to prop myself up. I noticed it became difficult to write (I’m right handed and my right side is affected) and I developed tremors in my right arm.
I started physical therapy, where I found I had a mild herniation in my neck. Nothing seemed to help – the pain and tremors only got worse. I went to an Orthopedic Surgeon in early 2013, and that March, I had surgery to remove the damaged disc, which was meant to alleviate the pain.
But it never went away. That summer, I moved to Long Island, NY and started seeing a chiropractor. Months of treatment didn’t stop the pain. In November of that year, I was referred to a different surgeon for a follow up on my surgery. My neck was fine and he referred me to a respected neurologist he knew.
I was so confused. What did this have to do with my neck? I met with my neurologist and he knew immediately. He had me do two MRIs to be sure, and then come back for an official diagnosis.
On December 18, 2013, I was diagnosed with Parkinson’s disease.
I’d just turned 41 in November. Parkinson’s disease was something I’d heard of – my first thought was Michael J. Fox – but it took me a few seconds to really process.
Parkinson’s disease. How could I have THAT?!
My doctor assured me that I’d be fine and that I’d feel normal again. He was right. He started me immediately on Stalevo (levodopa), and two weeks after my diagnosis, I started CrossFit. I’d been working out consistently before; it just hurt. Now with much less pain, I was able to do so much more! Now, I weight train 5 days a week, have my second bodybuilding show in November, and I’m happy to say I’ve had zero progression in almost 3 years.
I have moments of fear. I’m human. But I’ve made it my goal to make every day count – to enjoy every moment and find happiness in every day. Because when you truly find gratitude, happiness – the bad days just aren’t as bad.
I moved back to Michigan last November, and I was thrilled to find the work being done here. Knowing that there’s a team of scientists at Van Andel Institute who are working toward a cure makes me so proud, and the volunteers of Purple Community? I can’t thank them enough.
The people who give their time, their love – to help people like me – it’s what really has made Grand Rapids home to me once again, after 19 years away.