When divorce, financial collapse, and paralysis from the neck down collided, Shaun Salen was diagnosed with multiple sclerosis. Determined to fight back, he explored alternative treatments and built a global online community for nearly 100,000 people with MS. In this episode, he joins Mathew Embry to share what he discovered about healing, advocacy, and hope.
Mathew: Welcome to Hope and Health. I'm here with Shaun Sullen, who is going to share his personal journey with multiple sclerosis as well as what it's like to moderate and be involved with one of the largest MS communities online. Shaun, thank you so much for being with us.
Shaun: It's an incredible honor to be here, Matt. I'm honored to be here. Thank you.
Mathew: Shaun, your journey is pretty incredible. Not only have you dealt with the disease, but you're also actively involved in moderating and working with an enormous MS online community.
Shaun: That is true. The Multiple Sclerosis Resources and Education Facebook group has become a living organism to itself.
Mathew: How many members do you have in this?
Shaun: As of this morning, just over 95,000.
Mathew: So you have 100,000 people with multiple sclerosis, or who are closely affected by it, coming together to learn. From my perspective, the MS community is unique because they mobilize online so effectively. It’s a patient population that’s all in it together.
Mathew: There are a lot of key things I’ve observed. Many people are afraid, even terrified of their illness. There’s a wide range of how people approach MS—from utter hopelessness to extreme positivity, and everything in between.
Being able to moderate that, is it challenging with people who are totally hopeless or helpless?
Shaun: Sometimes, for sure. And then some people are extremely positive, which I can fall into myself. It is challenging because you get people who want answers and people who hate answers, sometimes on the same day. As the admin and founder, you have to meet everyone where they’re at, regardless of how they come to you.
Shaun: Many people with MS are very afraid, angry, hurt, and also in a compromised health state. You have to meet people where they are, whether they come to you angry or for any other reason.
Mathew: How important is it to have these online spaces for people with MS and other diseases?
Shaun: I think it’s absolutely vital—critical, even. Life and death. Forums and groups like this shined a light for me, showing that there are options beyond what your neurologist tells you.
Mathew: You said "life and death." Can you explain that?
Shaun: The information, choices, and dialogue in these groups may seem minor, but they are vital. If I hadn’t explored options beyond my neurologist’s advice, I wouldn’t be here today. My neurologist offered no cure and just a list of medications. Once I picked a med, I exhausted all his options. It was up to me to look elsewhere.
Mathew: Let’s go back to your diagnosis and story. How did it all begin?
Shaun: My journey started around 2018–2019. I was going through a divorce, which culminated from a long-term unhappy marriage. Alongside that, my 35-year-old business collapsed due to the stresses of the relationship. I lost both my marriage and my business.
Shaun: Amidst this stress, I started to feel numbness in my abdomen. I was working two jobs as a single dad and trying to manage everything else. The numbness migrated around my torso, then down my legs and up to my chest. I went to four doctors, two chiropractors, and a physiotherapist, but no one could figure out what it was. Eventually, I walked into the emergency room and, after a long day, saw a doctor who began MS testing. Two days later, I had an MRI and was diagnosed.
Mathew: When you first had these symptoms, did you think it was a pinched nerve?
Shaun: I had no clue. I thought it would pass. I was distracted by everything else in my life, but the numbness quickly became my entire focus.
Mathew: Was it a shock when you were diagnosed?
Shaun: Yes, definitely. I was already overwhelmed, but there was a strange sense of relief because now this condition had a name. I dove into learning everything I could about multiple sclerosis.
Mathew: Did the doctor give you a good understanding of the illness?
Shaun: Not really. I was told I had MS, there’s no cure, and here’s a list of medications. That was it. My neurologist gave me a brochure and a sheet of meds, and I picked one with my mom and my girlfriend at the time.
Mathew: Did anyone in your family have a medical background to help?
Shaun: No, none at all. No MS in the family either. We were all blue-collar people.
Mathew: So where do you begin with eight or nine medication options?
Shaun: I chose the one with the best odds of success, even if it was only a 50/50 chance after 20 years. But I didn’t stop there—I researched everything I could on the internet, looking for ways to manage symptoms like memory fatigue, diet, and lifestyle.
Shaun: One of the first people who gave me hope was Bob Kafaro. I watched his TED talk over and over. He had worse MS than I did but was able to play his cello professionally through diet and lifestyle changes. That gave me the belief that I could move the needle on my health outside of traditional medicine.
From there, I discovered other influential figures in the MS community, including Terry Walls, George Gelinx, and yourself. I distilled the best strategies from all of them. I implemented strict dietary changes, supplements, and other lifestyle choices. I monitored what worked and discontinued what didn’t.
Shaun: About a year into this, I recovered 70–80% from my worst day. I still had fatigue and cognitive struggles, but then I heard about a woman with progressive MS who went to a clinic in India and left her wheelchair there after 13 days of treatment. I reached out, interviewed her, and within six months to a year, I went to India myself for treatment.
Mathew: How did it go?
Shaun: Very well. I was 100% restored, aside from a little numbness in my hands. At this point, I was not using any MS drugs—Tecfidera only briefly for two months, which had negative side effects. Diet, lifestyle, and the treatments in India had a much more positive impact.
Mathew: What led you to create an online community?
Shaun: I felt an obligation to share. I had heard a quote about showing another beggar where to find bread—it resonated with me. Keeping this knowledge to myself felt wrong. I started sharing my journey, but the majority of the responses were negative. I was called a scammer, kicked off groups, or met with rudeness. One of the biggest reasons I started my group was to create a safe space for people where I couldn’t get kicked off.
Mathew: Why do you think there’s so much anger when people share their stories online?
Shaun: Once someone has accepted their diagnosis, hearing that there might be other options can be jarring. The online space can also be a jungle—people are skeptical or defensive. But if someone is living successfully with MS, and they’re willing to share, we should listen.
Mathew: Do you think helping others with MS is part of the healing journey?
Shaun: For me, helping others wasn’t about my healing—it was an obligation. I couldn’t bear to not help someone if I could.
Mathew: You’ve clearly impacted lives. How does that make you feel?
Shaun: I receive warmth and gratitude from people around the world. Helping others makes me feel better about my life. There’s a bit of selfishness in that, but it’s also deeply fulfilling.
Mathew: You and I first connected in 2022. Can you share that story?
Shaun: In 2022, my mother was diagnosed with terminal lung cancer. She was my favorite person, and I helped her pass away. Afterward, I decided to drive from my hometown to Tofino alone. Passing through Calgary, I reached out to you, and we met in a coffee shop. The information you shared at that time was incredibly helpful, and I appreciated that you were a person, not just a personality.
Mathew: Your generosity and willingness to help others is inspiring.
Shaun: Thank you. Even if there’s some selfishness in it, helping others feels right and meaningful in this journey.
