CHAMPs > Parkinson's CHAMP
Sabela and The Hotsteppers
A couple of years ago, my handwriting changed. It went from round and neat to tiny and illegible.
A couple of years ago, I noticed that daily actions like brushing my teeth, taking bills from my wallet, having soup or buttoning my clothes were increasingly challenging.
A couple of years ago, I noticed my right foot started dragging and sometimes I tripped for no apparent reason.
In May 2016, I saw a movement disorder specialist at NYU Langone. My primary care physician had diagnosed me with essential tremors; I know now this is a common misdiagnosis. My movement disorders specialist ran the whole battery of tests (now I can do them with my eyes closed), and then sat down. Looking me straight in the eye, he told me I had a mild case of early onset Parkinson’s disease (PD).
I remember very clearly that sunny New York afternoon. I took the ferry back home and sat on a bench facing the East River while I started processing the news. There were two thoughts in my mind: telling my parents, who live in Spain, and fighting with all my strength a chronic, degenerative and incurable condition.
Since my diagnosis, I have volunteered in several research studies, both on site and remotely, through Fox Trial Finder at the Michael J. Fox Foundation, I keep abreast of developments through associations like the National Parkinson’s Foundation (NPF), and friends and family back home have joined the Federacion Espanola de Parkinson.
I found out about the Unity Walk through NPF. I thought it would be a good idea because what’s better than walking around Central Park in April? And I created a team, Sabela and the Hotsteppers. The name was the result of a very serious and strict survey carried out among some of my friends. My initial goal was $2,500, and I raised over $11,000! It was such an accomplishment that, to this day, I have to pinch myself to know that I’m not dreaming. And it also meant meeting the inspiring and joyful May May Ali at the thank you reception for top fundraisers the night before the Walk (apparently, my mom reminded her of her ex-mother-in-law!).
Walking on that Saturday morning ended up meaning more than I had expected. The support from friends and family who showed up despite the menacing clouds is, to this day, a source of energy and strength for me. The feeling of community, of fighting together, of raising awareness was so immense that, later that day, my dad turned to me and said "even though we're an ocean away, we're not as worried anymore after what we've experienced today.” And this is why I'll walk again in 2018, so that other people, especially those who've been recently diagnosed, can feel supported, and know that they're not alone.
I use every opportunity to raise awareness about PD. I am very active in social media and I talk openly about my condition – yes, I even joke about it!
I have joined the ranks of PD fighters who are hopeful about finding a cure. As I tell my doctors, I sincerely hope they end up having to find a new specialty. I firmly believe that we are stronger together in this fight.
Team Captain, Sabela and The Hotsteppers
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