MS Clinical Trials and Unlocking Your Inner Fighter
“Sometimes in order for you to develop, some types of situations are necessary. These situations make you confront yourself and the uncomfortable. Be thankful, these moments carry the potential to unlock something very fundamental inside of you.”
– Shi Heng Yi, Shaolin Master
Midway through 2010, I found myself in several uncomfortable situations as a young adult battling fatigue, emotional stress, and an invasion of pins and needles attacking different parts of my body. Headaches and physical breakdowns became common side effects due to exercise-induced overheating as I tried to maintain my regular lifestyle of high-intensity fitness routines through martial arts. Taking disease-modifying therapies also altered my daily activities, date nights, work and planning my family.
Instead of a coach in my corner with words of encouragement, I was plagued with a fighter’s worst enemy… the feeling of failure even before the bell for the round to begin. I became overwhelmed that my opponent, MS, had the upper hand. When I realized that I needed a new strategy so that I would not be cornered anymore, I looked for an opening and gave it my best shot.
Ten years after my relapsing remitting MS diagnosis and many attempts and setbacks along the way to find my pace around how to live and exercise with MS, I received an email from the National MS Society regarding a clinical trial to investigate aspirin as a treatment to improve exercise performance in people with MS who experience overheating during exercise. After replying, I had a brief phone call to go over some screening questions and review my medical record. Rules of Engagement for the ASPIRE clinical trial (Aspirin for Exercise in MS) were:
- A diagnosis of relapsing-remiting MS
- Self-reported heat sensitivity to exercise
- It required 3 study visits to Columbia University Medical Center in NYC, with each visit taking up to 2 hours to complete questionnaires/assessments
- Take a pill (either aspirin, acetaminophen or placebo) and
- Complete an exercise test on a stationary bicycle
When I met all screening criteria, I was then enrolled and the dates for my visits were based on the convenience of my schedule. I was eager to participate because this clinical trial meant the opportunity to find solutions for something personal that MS took— my enjoyment of exercise. Prior commitments of changing my diet and exercise routines to support my overall health and wellness prepared me to get in this ring and out-stare my MS opponent, even if it meant I would be uncomfortable.
On my first visit, I asked the exercise physiologist what the average time frame most competitors (I meant participants) spent on the bicycle. It was 8-12 minutes. At the conclusion of those visits I took home 2nd place, averaging 14 minutes on the bicycle. I lost out to a marathon runner who averaged 16 minutes. I’ll take it!
Aside from satisfying my competitiveness, I was encouraged by the ASPIRE team of doctors and researchers with their commitment to finding solutions for everyone affected by MS. Every encounter was met with kindness, which is key in healthcare. Any anxiety, or concern that I had leading up to my first visit was squashed by supportive and compassionate healthcare professionals and endured throughout the entire process. Post-ASPIRE, I scored my clinical trial experience as a win because I gained a new network of professionals that provided useful tips that I continue to apply and shapes my life with MS for the better. Also, I felt a responsibility to continue my involvement in clinical trials, especially those focused on how modern medicine and movement can co-exist for people living with MS.
In sharing my story, I hope you find confidence stepping into any ring with MS because there are supporting team members in your corner, championing you by competing… I mean completing clinical trials. But there is a deficit lurking on deck. Without more participants enrolling, MS research would come to a standstill and the coveted “KO,” Cure for MS that we all desire, will continue to elude us. Before we break and you go back to the center of your ring, my tip to confronting your MS opponent is to lead with a purpose and find your moment participating in clinical trials. These are the situations needed to unlock your unlimited potential and how pathways for cures are created.
Editor’s Note: Learn more about getting involved in clinical trials on the Society website.
Breaking the cycle of exclusion: Embracing cultural competence in physical activity research for people with MS
Cultural competence in research involves considering the culture and diversity of a population.
An MS diagnosis in college didn’t stop Téa from cheering for the NFL.