CHAMPs > Parkinson's CHAMP
August 2013 - Deen
Deen’s Day Trippers & the Parkinson’s Unity Walk
There's an episode of Curb Your Enthusiasm featuring Michael J. Fox as himself. In a scene with Larry David, he offers David a soda. David says sure he'll take one and Fox hands him a bottle that he grabs out of the fridge. When David opens it, the soda sprays all over him like it’s been vigorously shaken. He proceeds to have a tantrum and yells at Fox who nonchalantly shrugs his shoulders and says, "Parkinson's." The scene is hilarious, making light of a very serious, debilitating neurological disease. The optimism of the scene perfectly reflects my mom's view of her diagnosis with PD and it is what's made our journey with Parkinson's endurable.
My mom, Doreen (nicknamed Deen) was diagnosed in 2008 at the age of 52. To say my family was stunned by the news is the understatement of the century. For months, my mom refused to accept it. She wasn’t necessarily in denial; she just couldn’t understand how she could have such a thing. Parkinson’s was foreign and bizarre and nothing that had touched our family before. Eventually, those symptoms that the doctors noticed gradually intensified and our family had no choice but to tackle the discovery head on.
We stumbled across the Unity Walk while researching Parkinson’s online. Living in Connecticut, Central Park was a quick train ride away, so we decided to sign up. In our first year, just one year after my mom’s diagnosis, our team had four members - my mom, dad, sister and I - and we proudly raised a few hundred dollars from family and friends. We went to the Walk nervous, but excited and eager to learn more.
We were overwhelmed by the warm welcome we received from a community of people all going through the same thing as us. We met Parkinson’s patients, friends and family members of patients, healthcare professionals, and volunteers who just wanted us to know that we weren’t alone in this. The support was astounding. As a whole, the Unity Walk picked us up, a confused family unsure of how to deal with such a drastic life change, and put us on track to manage it. Through the people she met at the Walk, my mother has joined support groups, learned of new medications, and was referred to the movement disorder specialist she now sees on a regular basis. Without this event, we would be utterly lost.
Five years later, our team of four has grown to more than 30 members, doubling in both size and donations raised each year. We also invented a name for ourselves and designed a t-shirt that we are oh so proud of. Today our team is known as "Deen's Day Trippers." It’s a nod to my mom’s obsessive love for The Beatles and also to one of her Parkinson’s side effects: she trips a lot. When she thought up the name and shared it with me, she laughed and shrugged her shoulders like Fox in that Curb scene. When she trips because the mobility on her left side isn't so great, she keeps going. When she gets stuck trying on a blouse in a store fitting room, she laughs so hard she cries. And when she's been trying to peel a single potato for 10 minutes, she doesn't give up.
At the 2013 Unity Walk, Deen’s Day Trippers raised more than $6,000. There were so many people walking with us, we couldn’t all fit in one team photo. The support we received from friends, family, and mere strangers was incredible. Friends of friends who have never met my mom donated to our team, some of them contributing over $100! For months I received constant emails alerting me that someone new had joined our team or that I had collected another donation on my personal page. I received support from high school friends who I haven't seen since graduation. My best friend's step-dad whom I've never met donated. New co-workers contributed, admiring my determination to fight PD. I cried more than once throughout the weeks leading up to this year's event, so taken aback by the overwhelming love I felt.
The generosity we’ve experienced throughout the years is beyond touching. I hope these individuals know how much they are appreciated. The world is certainly a better place with them in it.
While the donations play a huge role in our participation in the Walk – since 100% of donations go towards finding a cure – the most important aspect for us is experiencing the unity. My mother’s strength and bravery doesn't come out of thin air. It's driven by the support she receives from loved ones and the Parkinson's community. My mom shakes a fist (voluntarily, mind you) in the face of Parkinson’s and refuses to let it bring her down.
Doreen Erasmus is my best friend and my hero. I'm 100% certain her positivity will keep her healthier longer and postpone the severity of her symptoms. Her optimism is astonishing, as is her unwavering happiness and ability to laugh, persevering despite it all.
My family owes a great deal to the Unity Walk and I encourage anyone living with Parkinson's or those who know someone affected by it to participate. Simply put, it’s a lifesaver.
Team Captain, Deen’s Day Trippers