CHAMPs > Parkinson's CHAMP
February 2014 - Team PAIL X
I don’t remember the day my mother was diagnosed with Parkinson’s disease. I can’t remember who told me the news or how I felt about it. I knew nothing about the disease, yet I didn’t do much research, get involved in trying understand it or raise awareness about it until many years later…when my dad was also diagnosed with Parkinson’s.
I do remember the day my dad was diagnosed. It was in 2012 and I was with him in the doctor’s office. I think we both were in denial or shock or something, thinking the doctor had to be mistaken. Parkinson’s was my mom’s disease, not his. It was surreal to me as well. Why, how, could both my parents have Parkinson’s? My next thoughts were about the strong probability of me or my brother having it, but then my focus shifted, more importantly, to what I could do to help, to get involved and make a difference for those affected with Parkinson’s.
And so my journey began. To learn and become educated about Parkinson’s and become involved in raising awareness, fundraising for a cure, and advocacy. Searching online I found The Parkinson Alliance, which is located one town away from my home and the annual Parkinson’s Unity Walk, held in Central Park, just a train ride away. I also came across the Parkinson’s Action Network (PAN) and attended the PAN Forum in Washington, D.C. in February 2013. I met Kat Savillo of The Parkinson Alliance at the PAN Forum and learned more about the organization and the Unity Walk. I was so excited to participate and signed up for the Walk as soon as I returned home.
My brother joined me and together, we made up Team PAIL-X. A small team of two but we were certainly not alone. There were so many people in attendance I was amazed. I felt the excitement and positive vibes in the air and saw a sea of smiles on people’s faces. We connected with a couple, Sid and Lori, that I met at the PAN Forum and we all walked together. Lori wasn’t sure she would be able to complete the Walk, but with encouragement, talking and sharing stories the entire time (and not using her walking sticks as much as anticipated), she finished! When I think back, that was the highlight of the day for me.
I was excited to participate in the Unity Walk because in addition to the fundraising and camaraderie, it is also about exercising! I heard speakers at the PAN Forum and World Parkinson Congress address the important role that exercise plays in managing symptoms and potentially slowing the progression of the disease. I shared this information with my dad and soon after, he started walking briskly around the house every morning. At first he could only walk about 5 minutes total, but now he is up to 30 minutes. I wasn’t aware he was doing this until he was at the point of walking 15-20 minutes. When he told me, I was very proud of him.
Everyone’s story is different, yet the quest to find a cure is what brings us all together. My journey began doing this for both my parents, who are now in their late 70’s. Yet, as I meet many others including so many younger people with Parkinson’s, I realize that my involvement is so much more, and can help make a difference for everyone affected. I plan to be a part of the Unity Walk each year. It’s a great event and raises funds for further research. I’m working on having a bigger team this year (including family, friends, and even people I haven’t met yet) as well as increasing the team fundraising goal. It will make me most happy if my dad can walk with our team this year.
Come join us in walking for a cure! I invite you to become a member of Team PAIL-X or create your own team. Just take the first step and get involved. No matter how small your own fundraising goal or contribution may seem, together it will make a BIG difference in finding a cure for Parkinson’s disease. The 2013 Unity Walk distributed over $1.7M in Parkinson’s research grants.
Get your sneakers ready and I’ll see you in April…
Lisa Paillex Griffin
Team Captain, Team PAIL-X