It all started 30 years ago when I noticed that my vision deteriorated suddenly. I had always had 20/20 vision, so I became acutely aware that something was wrong when my TV started looking blurry, I mixed up my colors and my depth perception was off. Unnerved, I sought out a doctor’s opinion. I was relieved when he ruled out a brain tumor, but I was left with no definitive answers.
As time passed, my vision gradually improved, but I started noticing other seemingly unrelated issues. Occasional muscle spasms would come and go when I wrote. I was getting much more tired during my weekly golf outings. Again, I set off to see my doctor but he dismissed both of these symptoms as dehydration.
As more time passed, my family and friends began to notice a more visible change: I had begun walking with a slight limp. Still thinking little of it, I brought it up at my annual exam with my doctor and was surprised that he suggested I go to a neurologist for follow up. After a battery of tests, the doctor came in to review the results. He brought out my MRI and carefully pointed to the lesions that had developed on my brain. He then told me I had multiple sclerosis. I didn’t even really know what MS was, but I knew it wasn’t good.
In the days and weeks after my diagnosis, I began to drown myself in medical information about the disease. However, within this sea of information, there were basic pieces that were missing. Exactly how many people in the U.S. have MS? Was the fact that I served in Vietnam or had shingles a contributing factor for my disease? I was shocked to find out the government wasn’t gathering this basic information which could help unveil potential triggers for or patterns of the disease. Without this information, aren’t MS researchers operating at a distinct disadvantage? We’ve been fortunate to have progress in understanding MS and developing new treatments, but there are still some big unanswered questions and barriers that we need to address…. and Congress can help!
This past October, I was excited to learn that U.S. Representative Tim Murphy was holding a roundtable discussion about the 21st Century Cures Act in my community. I joined over a dozen patient advocates to speak on behalf of our communities – and was honored to represent people living with MS.
Representative Murphy and his staff took note of the issues of importance to us and just this past month we learned that the Advancing Research for Neurological Disease Act (H.R. 292) was included in the 21st Century Cures Act. Its inclusion accomplishes one of our many goals: creating a nationwide system to track the incidence and prevalence of neurological diseases.
Personally, I feel empowered when testifying before my U.S. Representative, because I know that I’m driving change in my community and across the country. As my disease continues to progress, the urgency for more answers grows. While there are more than 10 treatments for relapsing MS on the market now, none of them work for me, because my disease has transformed into a progressive form of MS. Without a better understanding of MS, my dream of long walks with my wife and running with my grandchildren slip farther away as my functioning continues to deteriorate. My hope is that my work as an MS activist will pave the way for more research to ensure that my dream — and the dreams of many others living with MS — come true, and we end MS forever.