Hi and thanks for listening to the RealTalk MS podcast! Just in case some of you were wondering how this podcast came about, I thought that I’d take a minute and share my story with you.
In 1997, my wife Jeanne was diagnosed with secondary progressive MS. At the time of her diagnosis, Jeanne was an avid cyclist, waking at 4AM to ride her bike 40 miles every morning. Unfortunately, her symptoms progressed quickly, and within just a few short years, Jeanne had become a quadriplegic, no longer having the use of her arms or legs. Jeanne’s MS continued to progress, compromising her vision and robbing her of her ability to swallow and even speak. Jeanne’s disease also impacted her cognitive abilities, leaving her with no short-term memory. Jeanne has been bed-bound for the past 10 years, receiving all of her nutrition by means of a feeding tube. And although I may visit Jeanne at her sub-acute nursing facility today, she will have completely forgotten my visit by tomorrow.
Having experienced how the destructive force of MS can completely upend a family, I looked for ways to become involved and, perhaps, make another family’s journey through the MS jungle slightly less traumatic. I took my caregiving experiences and volunteered to write the National MS Society’s first blog specifically for MS caregivers. Through my local National MS Society chapter, I facilitated a caregiver support group and offered one-on-one coaching for caregivers.
In 2015, I was selected from among hundreds of applicants to be one of three lay members of the Scientific Steering Committee of the International Progressive MS Alliance. The Alliance is a global organization that was founded by a number of major MS organizations around the world. Last year, the Alliance awarded over $15 million dollars in research grants in support of promising work that’s taking place in laboratories in the United States, Canada, Italy, France, Germany, Switzerland, and beyond. You can learn more about the International Progressive MS Alliance here, or I invite you to watch this short video that I was honored to participate in:
In 2016, I joined the National MS Society’s MS Activist movement. I’ve had the opportunity to visit with our national legislators in Washington, D.C. to discuss the healthcare issues that are of vital importance to the MS community. I’ve also traveled to Sacramento, California, to meet with my state legislators and testify before a legislative committee in support of legislation designed to benefit family caregivers throughout California.
And now, I’m thrilled to be launching RealTalk MS, a weekly podcast. RealTalk MS provides an easy-to-access platform to talk about (and explain in easy to understand English!) all of the amazing MS research that is currently being done, and even chat with some of the brilliant neuroscientists who are dedicated to solving the riddle of MS. The RealTalk MS podcast will be a place to monitor the debate among our lawmakers surrounding prescription drug price transparency or discuss how proposed changes in healthcare legislation might impact your MS treatments. And RealTalk MS will also be a place where we’ll meet and talk with MS activists, MS caregivers, and other heroes who strive to raise the bar for those who battle MS every day.
My goal is simple – to keep our conversation going until there’s no longer a need to talk about multiple sclerosis, except in the past tense. So please consider this a personal invitation from me to you to join the RealTalk MS community. Together, our words have power.
Thanks for listening!