I’m Joan Boreen Koelemay, your Advocacy Committee Patient Representative. I live in Atlanta, GA (by way of Minnesota) with my supportive husband, Jim. I’m also fortunate to have my two ‘bonus’ kids, Chuck and Kelly, living nearby. Before MSA came to stay with us, my husband and I were very active, enjoying hiking, biking, horse riding, golf, skiing, and ball room dancing.
My profession, before retiring in 2015, was as a nutritionist and registered dietitian, handling communications and a website for a medical research center and later developing and managing a nutrition and wellness website for a large corporation. I also served for a time as a regional spokesperson for The Academy of Nutrition and Dietetics. Along the way, I also earned my MBA and trained as a chef in France – so many years ago!
I was diagnosed with MSA in January 2022, but began following the MSA Coalition about 4 months earlier, after a neurologist said he thought my list of red-flag symptoms, which had been growing since 2015, suggested I was heading toward MSA. I had never heard of the disease, so I read everything I could find. It was emotionally difficult to see that my symptoms did indeed align with MSA and to read the stories of patients and caregivers facing down the disease, but the MSA Coalition was invaluable. It helped me become my own health advocate when the ‘wait and see’ advice I was getting from my own doctor wasn’t enough for me. I wanted to KNOW, no matter what the consequences. So, when an announcement for a new MSA research study appeared on the Coalition Facebook page, I decided to try to be evaluated by the study’s MSA clinic. They found that I did indeed have MSA, so I enrolled in the clinical trial. I am still a participant today. I’ve always been a ‘give me the facts and I will adjust’ kind of girl – but this is the toughest thing I have ever faced – by a long shot.
I can’t say this is the path in life I wanted to hike, but here I am. But I am not alone. Along with Jim and the kids, I have all of you. This is why I volunteered for the Advocacy Committee. To join the voices and actions to raise awareness of this disease. We need to get diagnosed sooner and more accurately. We need support for those who get this disease, especially those who are too young for Medicare, and for those at all stages of the disease. Above all, we need to raise awareness of the impact this rare disease has on peoples’ lives and financial security. For this to happen, MSA must be included in healthcare legislation both locally and nationally. I know this won’t just happen. It will take work. And I want to help.
When not advocating for the MSA Coalition, you’ll find me on my recumbent trike cruising the Silver Comet Trail (our Atlanta Rails-to-Trails), where, at least for now, my MSA and lack of balance doesn’t hinder ‘my need for speed’ and enjoyment of the ride.
