Magic Happens When We Put Our Heads Together
By Roz Kalb
Siegel Rare Neuroimmune Association (SRNA) and Can Do Multiple Sclerosis (Can Do MS) joined forces to bring health and wellness coaching opportunities to people living with a variety of rare neuroimmune disorders (RNDs). SRNA is a non-profit advocacy organization for adults and children living with five disorders – acute disseminated encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG antibody disease (MOGAD), optic neuritis (ON), and transverse myelitis (TM). Can Do MS, a health and wellness organization founded by Olympic skiing champion, Jimmie Heuga, following his MS diagnosis, uses a small-group coaching model to encourage shared learning, connection and community building, and activation to achieve personal health and wellness goals.
For the second year in a row, a multidisciplinary team of healthcare professionals from Can Do MS facilitated a four-week coaching series with folks affected by RNDs, including adults living with one of these conditions and parents of kids who have them. I had the opportunity to participate as a coach for these sessions, which focused on ways to strengthen relationships and improve communication with important people in one’s life – partners, family members, the healthcare team. Regardless of one’s diagnosis, good listening and open, clear, and honest communication are essential tools for effective coping, adaptation, and shared problem-solving. My joy as a psychologist and certified health coach comes from watching people focus on their common challenges rather than their differences, share strategies and solutions, and build a community of mutual support. And we all watched it happen.
Similar to last year’s program, participants in the recent program valued the information they received and the connections they made. In addition, they expressed a readiness to make meaningful changes in their wellness behaviors, and a confidence in their ability to manage their symptoms. But the real impact – the magic – of this collaborative effort comes through in the comments people shared. A mother said that hearing from adults with RNDs gave her a better understanding of what her young son, who can’t verbalize as clearly what he’s going through, is likely feeling. Another person recognized that communication, when it’s at its best, allows people to talk about difficult subjects – including those they didn’t think they were ready to tackle. And, as happens with all of our health and wellness coaching programs, people recognize – often for the first time – that they are not alone with their challenges.
In a post-program survey, participants were asked what they learned and/or gained from the program:
“[I] gained new tools to help me further adapt to my disorder, a sense of peace knowing that on this journey I will not be alone when facing fear and uncertainty.”
“[It helped me] improve my communication with others to help them understand what I’m going through… [and] create a pie chart to help me see how much of my life is impacted by health.”
Partnerships like this one, between SRNA and Can Do MS, build communities that feel trusted, safe, and caring. We’ve built a bridge across neuroimmune conditions, but there’s still a lot more work to do, and we’re all looking forward to it.
