In the past three years, I've inhaled capsaicin (the hot stuff from chili peppers), swallowed barium while having my throat x-rayed, and attempted to "walk naturally" with sensors strapped to every limb and researchers filming my every move, all in the name of science. And I loved every minute of it.
Participating in Parkinson's research studies makes me feel like I'm part of the solution, that my small contribution is nudging us one tiny step closer to a cure. (And the hot pepper stuff really wasn't that bad.)
Feeling like part of the solution is a very good thing. Especially since these days, my mood tends to be Anxious with a touch of Apathy.
Shout out to the newly diagnosed: especially if you're not taking meds yet, you are VERY VERY VALUABLE to the scientists working tirelessly to end this sucky disease. And if that's not enough reward, they'll sometimes give you a gift card!
You can also get treatment you might otherwise have to pay for. The chili pepper experience was courtesy of a study at Teachers College, Columbia University, comparing in-person and telehealth models in the rehabilitation of airway protection. Basically, they're making sure I can cough effectively and swallow safely: both things PD can mess with.
Instead of paying for speech or physical therapy, I get to go to a lab at Teacher's College and work with a brilliant, passionate and kind team of researchers and be part of something bigger. I mean, these folks give me HOPE.
We're all in this fight together. The more we each do, the better we'll all do.
So don't just read this, TAKE ACTION and find a research study near you!