The National MS Society recently announced its partnership with RealTalk MS — a weekly podcast that unpacks the latest MS news and updates. Host Jon Strum started the podcast after his wife, Jeanne, was diagnosed with primary progressive MS (PPMS) in 1997.
“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,” Jon says.
The Strums have trusted the Society for information since Jeanne’s diagnosis.
“When Jeanne was first diagnosed, the first thing we did was turn to the National MS Society. And as her symptoms developed over time, that was our go to resource, time and time again,” Jon says.
Jon has experienced first-hand the devastating effects of Jeanne’s worsening symptoms.
“When Jeanne was diagnosed, she was an avid cyclist — biking 40 miles every single morning,” Jon says. “Within a couple of years of her diagnosis, she was wheelchair bound. And just a few years later, she was a bed-bound quadriplegic.
Today, she’s living with a feeding tube for her nutrition. She requires assistance breathing. She is nonverbal, and we communicate by me asking her yes/no questions and her blinking for yes or blinking for no.”
Jon finds comfort in helping advance the MS movement so other families will have a different outcome.
“Jeanne needs to know that other families will not have to suffer the way we have,” Jon says. “The work that the Society has done over the years has been a tremendous comfort.”
He is encouraged by the progress of MS research.
“When Jeanne was first diagnosed, there was one, maybe two medications available for people living with multiple sclerosis. And today, there are so many more and there’s even medications available for people living with progressive MS, which for a long time had not been the case. All of that has come about really because of the work that has been supported by the Society.”
Each week, Jon breaks down the latest in MS news, research, advocacy and support for people living with the disease and their carepartners. Every episode features an interview with world-class MS researchers, clinicians, advocates and policymakers who are committed to making a difference in the lives of people living with MS.
Jon’s goal is simple: keep the conversation going until there is no longer a need to talk about multiple sclerosis, except in the past tense. Check out RealTalk MS for past episodes and to subscribe.