Amanda Tam, 24, was in her first year at university when she began to notice some concerning symptoms. Her grip became weak, and soon after, she had trouble walking and developed debilitating fatigue. A neurologist diagnosed Tam with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. The condition affects the brain and spinal cord and causes a person to lose control of their muscles. The symptoms tend to get progressively worse, and generally, only about 10% of people live more than 10 years after the diagnosis. (Although some, like Stephen Hawking, have lived much longer.) Tam copes with her ALS via a dark, witty sense of humor and educates her thousands of followers on social media. Here’s her story, as told to associate health conditions director Julia Sullivan.
I was 20 years old and living in Montreal when restrictions from the pandemic began to lift in early 2021. I had just started my first year in university, and I felt like my life was finally coming back after the lockdown—I was going out with friends (you can drink at 18 in Canada) and seeing my family. I felt like I had freedom.
One night in March 2021, I was lying in bed scrolling TikTok when I saw that my finger—the one I use to prop up my phone—was curved in a strange way. It looked crooked and I was unable to straighten it. I thought, “Oh, I just got this new phone. Maybe it’s the way I’m holding it?” It was a wacky hypothesis, and it led to some strange Google searches, but I didn’t think much of it. Around the same time, I started noticing some issues with my grip. I remember trying to open a bag of dried mango in a sealed Ziploc bag and I couldn’t open it. All my friends at the time joked, “Girl, you need to go work out. You lay in bed too much, you’re clearly still thinking you’re in lockdown.”
So, that’s exactly what I did. I went to the gym to try to get stronger. But exercise seemed to make things worse. I’d try to do push ups, but I could barely squeeze out assisted ones—my arms felt like they were crumbling beneath me. I thought maybe cardio would be easier, but my legs would just shake under me. My fingers also started twitching, and I had intense fatigue. I would nap for hours every day and still have no problems falling asleep again at night. My symptoms seemed weird, but I wasn’t super concerned.
I saw my general practitioner about my symptoms on July 14th, 2021. (I waited until I was double-vaccinated before going into a hospital.) They did an MRI of my brain, but nothing came up. She mentioned that ALS might be a possibility, but a very unlikely one—it’s very rare and I was thought to be too young to have it. She referred me to another neurologist for a second look. They did a few particularly uncomfortable tests to figure out what was going on, including a spinal tap. Basically, you curl up like a giant shrimp and are probed with a huge needle to remove fluid from around your spine. I felt like a maple tree being tapped for syrup. (If you’re not Canadian like me and don’t know how syrup is taken out of a tree, well, now you know.)