My Story...

A diagnosis of Multiple Sclerosis (MS) is life-altering.  You immediately wonder how/why this happened to you, and what the diagnosis means for the rest of your life.  When I was diagnosed with Relapsing Remitting MS (RRMS) in November 2022, I had some but limited knowledge of the disease; despite my education and professional background in health and science. I also had no idea how much progress had been made in MS treatments.

 

From the hospital visit to my new normal life: There I was with a new diagnosis, an empty hospital room, and my thoughts. During standard mobility and vision assessments, the doctors kept asking if I worked out. I said yes, and they remarked on my retained strength; though I didn’t think much of it at the time. Fast forward: I’m now out of the hospital and facing a new normal. Over the course of several weeks, my left leg was slow, and the muscles tight. One day I was on a work trip experiencing severe spasticity, and nothing seemed to help the discomfort. Something urged me to try walking on the treadmill. After a slow half-mile walk, I felt better. The next morning, I woke up to walk on the treadmill again. I felt “good” so I thought “well let me see if I can jog.” Imagine this: my leg was still very slow, but I was actually jogging. Small win! Then when I realized I was jogging at a pace of 3.4 mph, I felt a bit discouraged. The rate at which I was jogging was what used to be an easy walking speed for me. But I kept at it. Despite the challenges, I kept pushing myself, and eventually found myself working out at the pace and intensity as pre-diagnosis.

 

I’m now thankful to have minimal, daily symptoms; which I strongly attribute to staying active. While MS affects everyone differently, we are all the same in that exercise will affect us positively.  I believe exercise is and has been crucial for the management of my MS symptoms.

 

Living with MS, and having a long-standing career in clinical research, I am deeply concerned about the lack of representation of black and brown communities in MS trials. As these communities are disproportionately affected by MS, we need equal representation in clinical research trials to ensure treatments are effective for everyone. So I started The MiSunderstood Foundation to create a focus on both exercise and minority research in MS. My hope is that with the help of the MS community we can champion exercise and movement amongst those living with MS; all the while raising funds for minority research initiatives in the MS space.