Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
By Sheryl Jedlinski
The number of Americans living with Parkinson’s disease has surpassed one million, and 60,000 more swell our ranks each year. While this is not something to celebrate, there is “strength in numbers,” and we can leverage this to speed discovery of the cure. Whereas one person can make a difference, all of us working together can change the world.
The Food and Drug Administration (FDA) understands this well. It recently hosted its first ever patient-focused drug development meeting. The goal was to obtain patient perspectives on the impact Parkinson’s disease has on daily life and on the effectiveness of various treatment approaches so the FDA can better meet our needs. It is a first step in giving Parkinson’s patients “a seat at the table” where the “temporarily healthy,” without our input, traditionally make decisions about our future treatment options.
Given the opportunity to “speak truth to power,” we must find our voice, prioritize our goals, and clearly convey our needs. My good friend Claudia Revilla was among those who led the way in doing this at the FDA meeting. She voiced her frustration that today’s gold standard medication for Parkinson’s was developed in the 1960’s and remains the best we have. “I feel like I am running out of options, and I am only 50,” she told FDA officials. “My Parkinson’s is progressing and there is nothing my doctor can do to stop this.” At the same time, however, Claudia’s description of the crippling, involuntary muscle contractions that literally stop her in her tracks prompted FDA officials to add dystonia to the list of symptomatic priorities.
Listening to the heartbreaking testimony given by much younger patients, with more advanced Parkinson’s, Claudia discarded her prepared speech, and spoke from her heart. “By working together with a sense of urgency, we will see a cure for Parkinson’s in our lifetime. Our patient community of one million strong stands ready to do everything we can to find a cure. We will be your clinical trial participants, advocates, volunteers, and fundraisers.”
How is it that we put a man on the moon and built an international space station, but can’t cure Parkinson’s? It is a matter of priorities. We do not have another 50 years to wait. When a cure is found for Parkinson’s (and we are confident that it will be), researchers, doctors, and patients will share the credit as we share the work. The “good news” is that while incurable today, Parkinson’s is not fatal. We will not die from it. Meanwhile, the Centers for Disease Control and Prevention list Parkinson’s as the 14th leading cause of death in the United States. How can a non-fatal illness achieve this rank?”
The cure can never come soon enough for patients and their families. Yet before you point a finger of blame at anyone else for the slowness of this process, ask yourself whether you are doing all you can for the cause. Start by taking just 15 minutes out of your day to complete an online survey to further inform the FDA of our needs. Every voice counts.