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The following story describes John Platt's journey, in his words, from first being diagnosed with multiple sclerosis (MS) to realizing that he can still have a full and rewarding life.
The trajectory of my life's journey changed on an overcast September day in 2005. I remember it as one of those moments when time seemed to slow down. Seconds became hours. Every heartbeat felt as though it was outside of my body. The sensory overload of the moment was forever inscribed into my brain. I was in the exam room with my wife and neurologist. There was a brief pause, and I inhaled, bracing for impact.
"You have multiple sclerosis."
To say MS has changed my life understates its impact on my life. My disease progressed rapidly during the first years following diagnosis. Within two years of being diagnosed, I felt like a prisoner of my own body. I was depressed and unhappy with my diagnosis. I felt alone. I would often hide in my house and avoid interaction with the outside world. It became apparent that I could not maintain a high-functioning position within the corporate world, which demanded 60- to 70-hour work weeks, travel, and plenty of stress. I was removed from my job, and my former colleagues moved on with their lives. Meanwhile, I was left with a wheelchair in my garage. It seemed imminent that MS would place me there shortly.
However, through the darkness came a light. Sitting alone in my home office, I received an email from the National MS Society inviting me to become an MS advocate. I realized my first-hand experience made me the leading expert on my MS, and I could help shed light on MS and its devastating impact. Through advocacy, I am high-functioning once again, just in a different arena. Today, I serve as the Chairman of the National MS Society's Pennsylvania Government Relations Committee. I was inducted into the Society's Volunteer Hall of Fame for Advocacy in 2013, and I continue to relentlessly advocate on issues affecting the MS community.
I first learned about the Multiple Sclerosis Research Program (MSRP) because of my experience as an advocate for the National MS Society. The MSRP was simply an idea when I came into the picture. With others, I was able to attend, arrange, and impact meetings with legislators on the Defense Appropriations Subcommittee. I am very proud of this advocacy work and grateful for everyone involved with the process. To this day, I retain the printout marked in yellow highlighter, pointing to the initial $5 million single-line appropriation for MS. Another trajectory charged --another step closer to ending MS forever.
After advocating for MS research over the years, I was left with a void. I would advocate, funds would be appropriated, and I would observe which research programs were selected for funding. But I felt the need to be more hands-on and contribute to selecting the funded research projects. Taking ownership of my MS fueled my desire to serve as a Consumer Reviewer for the MSRP; after all, it is my multiple sclerosis. During my experiences as a Consumer Reviewer, it was apparent early on that the people surrounding me were dedicated to preventing the occurrence, curing, reversing, or slowing the progression, and lessening the personal and societal impact of MS. I was humbled by their knowledge, encouraged by their passion, and comforted by the fact that I wasn't alone. Not only did they care about me, but there was genuine care and compassion for the entire MS community. Possibly best of all, my voice was accepted as equal throughout the entire process.
I can no longer log full days in an office, repair my own myelin, or button my shirt during a "bad MS day." But I have discovered a new-found passion for movement. After using a cane for seven years, I have worked extensively on walking and now running. So much so, that I have run the Chicago and New York City Marathons, and qualified as an athlete with mobility impairment for the 2016 Boston Marathon.
Through my advocacy work, I have learned that like-minded individuals can work together to create a tidal wave of hope in the sea of change. As part of this tidal wave, the MSRP brings together the MS and scientific communities to create a viable, productive partnership to fund impactful research that will change the course of MS forever.
Last updated Tuesday, March 15, 2016