I love YouTube tutorials as much as the next millennial: I’ve mined the site for everything from cleaning tips to makeup tutorials. But I never guessed that YouTube would be a key factor in my recovery from a Multiple Sclerosis relapse that left me hospitalized for a month. After I was diagnosed with MS in high school at 17 years old, I didn’t have a major flare-up for 18 years. Then one normal-seeming day during the pandemic, I became paralyzed almost instantly.
If you don’t know about MS, it’s a neurological disorder caused by an over-active immune system. The immune system of an MS patient mistakes the protective coating between brain cells (called the myelin sheath) for an invading virus. It attacks and damages the myelin sheath, leaving neurons exposed and raw. When the “attack” or flare is over, plaque builds where the myelin sheath had been, leading to scarring of the brain. Thus the term Multiple Sclerosis, or Many Scars.
After many stressful months of online learning during the pandemic, my spouse and I decided to take our two young kids on a vacation. I felt off during the two-hour drive, so I took a nap when we arrived. Upon waking, I stood up to use the bathroom and immediately crumpled to the floor, hitting my head on a dresser on the way down. While I slept, I had lost the use of the left side of my body, from shoulder to toes (hence the fall). Once at the hospital, I learned that I had suffered a “stroke-mimicking” MS relapse. The flare mimicked a stroke because it came on in hours, not days or weeks, and caused paralysis on one side of my body.
Following a tearful first FaceTime “night-night” with my kids, I learned that sending asynchronous videos with cute filters was a better way to communicate for the month—that way I could hide my blotchy cry-face and end the videos before breaking down. The kids were sad enough without Mommy, in the middle of a pandemic, and I didn’t want to scare them. But I was scared. My medical team said it was possible to regain function, even after a bad flare, but I didn’t believe them. How could I? When I stared at my left (and dominant) hand, willing it to move even a finger, it remained limp and lifeless.
Source: Instagram
When a Google search yielded nothing but clinical definitions, I scoured Instagram and YouTube from my hospital bed with a pop socket in my right hand. Through a scattershot hashtag search, I found many accounts and videos by people who had suffered from a stroke, Guillain-Barré syndrome, or MS. Their videos gave me proof that it was possible for people to (somewhat) reverse the effects of paralysis through physical, occupational, and Neuro therapies. Rooted in the science of neuroplasticity, Neurotherapy intrigued me. Essentially, when the brain is injured by an MS flare (or the like), the repetition of simple movements over time can rewire the area of the brain where function has been lost.
Once home, I realized I would have only four hours per week with my Physical and Occupational Therapists. I knew I couldn’t use that precious time to ask the why questions about my exercises. But I could tell that my body was changed forever, and I connected deeply with how various exercises felt in my body. In a weird way, my mind and body were in sync, even though my body was stuck—it seemed like all I had to do was follow my body’s lead.
With the very tacit blessing of my therapists, I dove into the videos of Dr. Tara Tobias, a physical and neuro-therapist I had found on YouTube. Dr. Tobias creates Youtube videos on her RehabHQ Channel to fill in the knowledge gaps for patients like me, recovering at home. Not only does Dr. Tobias showcase proper movement techniques, she explains the science of neuroplasticity behind everything. She notes on her site that her videos are not intended as medical advice. But since it’s my body and I only get one, I decided to take the risk and try the exercises myself. Before long, I was using makeshift equipment to perform exercises at home. I crab-walked around the kitchen, taped yardsticks to my shoes, and stood on a yoga block with one leg while I let my affected leg gently glide on a skateboard, all to the delight of my family. But I was getting results. Even my PT was impressed. By the time I “graduated” from physical therapy, I had exceeded every benchmark that had been set for me.
Source: Instagram
When it comes to neurodegenerative illnesses, all steps forward eventually slide back, as there is currently no cure for MS. I will always be permanently disabled (I still have debilitating fatigue), but I have been able to recover more function than my neurologist initially thought possible. All of the physical rehabilitation will help my long-term health as the disease progresses. Today, I can walk short distances, type, drive a car, and swim—all because I followed my natural curiosity about neuroplasticity, opened up my mind, and trusted strangers on the internet.
