I was in the prime of life. My wife and I were operating a business with clients in the pharmaceutical and financial services industries. We had just started studies at one of the world’s leading business schools and lived on the 40th floor of a building with unfettered 180-degree city and water views. Life could not be better. But that was about to change. On the day of my 30th birthday, I was studying for a test, and feelings of slight disorientation and changes in my peripheral vision began. Over the coming days, this progressed into double vision. A couple of weeks later, an MRI of the brain revealed multiple white matter lesions consistent with multiple sclerosis (MS).
This diagnosis 23 years ago changed the course of our lives. The high-flying careers we had planned were abandoned, replaced by paths through this world intended for a better balance. A realization of the need to focus on values of the heart led to our daughter being born a year later. Our son was born 2 years after that. Best decisions we ever made. As I cradled my daughter for the first time, I made her a promise I knew would be difficult to keep. I promised her that I would walk into her high school graduation without any assistance. The desire to keep that promise led to a commitment to 100% compliance with medication, a choice of eating a healthy diet, and a focus on regular exercise. I experienced many relapses over the coming years and went through periods of significant disability, but 18 years later, I kept that promise. And last week, I walked into her college graduation without assistance.
A key to achieving this promise has been 100% compliance with disease-modifying medication. Those medications would not have been possible without fundamental research performed 20 to 30 years ago. In the near future, medications that stimulate myelin growth built on research performed 10 to 20 years ago will be made available. The even more effective medications of the future will be built on research being performed today. That research needs to be funded by mechanisms such as the Multiple Sclerosis Research Program (MSRP).
I first learned about the MSRP through MSRP peer reviewer, Nancita Rogers. Based on my current and previous MS advocacy activities of volunteering on a national MS support line and launching an MS self-help group focused on exercise, Nancita asked the National MS Society to nominate me to be a peer reviewer.
Resources for the funding of MS research are limited. Every dollar counts. How those dollars are applied today will be vital to the improved outcomes of those being diagnosed 10 to 30 years from now. We have to get this right. This is why the MSRP is so important in its role of awarding grants for the next generation of MS research.
By the conclusion of my own participation in the MSRP, I was more hopeful about the future. I saw that the evaluations of the next generation of MS research are being conducted in a systematic manner by scientists balanced by the direct input of the needs of the MS community. I am confident that the limited funding is being applied to the most promising avenues of research.
I am also a current participant in a research study funded by the MSRP to test the benefit of utilizing an already existing medication to improve cognition. I have experienced cognitive problems on an ongoing basis since a major relapse in 2007. My job requires a high degree of cognitive capacity. Interventions I have tried to date to improve cognition have had only limited success. It will likely be cognitive issues that will require me to stop working earlier than planned. Cognitive problems lead many in the MS community to exit the full-time workforce. We need something better.
Gary Pinder and family
Last updated Friday, October 12, 2018