'I'm Not a Debbie Downer': Amanda Tam on Living with Juvenile ALS and Why She's Using Dark Humor to Cope

Amanda Tam was in her second year of college at McGill University in Montreal, Quebec, Canada, when she first started noticing that her walk "looked off" in March 2021. "My gait pattern changed," she tells PEOPLE, noting that her legs were also "super spastic." "I had clonus. So a positive clonus test is when you angle your foot a certain way, and it makes it spasm like crazy," Tam explains. "I had my finger twitching, so my left index was twitching, and it started to curl."

When the symptoms didn't go away, in July of that year, Tam booked an appointment with her general practitioner, who sent her to a neurologist the very next day to get an MRI scan of her brain. "So that ruled out multiple sclerosis (MS) because an MRI scan of your brain, if there are lesions, then it would be MS, most likely MS, but nothing appeared," the 25-year-old explains.

"So then I had a second MRI in August 2021 for my cerebral spine, and again, nothing happened," she continues. "So then I was referred to my now neurologist, who specializes in amyotrophic lateral sclerosis (ALS), and I had my electromyography (EMG), which is when they poke little needles into you to see your muscle movement ... the action potentials were going off, so very spastic."

In September 2021, she also underwent extensive bloodwork and a lumbar puncture, also called a spinal tap. The following month, just five days before her 21st birthday, Tam was diagnosed with juvenile ALS, a rare and terminal motor neuron disease. "Luckily, it was a really quick diagnosis," she shares. "I know people, they take years sometimes, especially in the States, trying to find a doctor and everything."

A Diagnosis That Brought Relief

While the news was earth-shattering, Tam admits she was oddly "relieved." "I know a lot of people when I tell them that they're very confused, but I mean, I'd rather have a diagnosis than just being passed around from doctor to doctor trying to figure out what was wrong," she shares. "So, going into my appointment on October 21, I had a really I don't want to say good feeling, but I was pretty certain that it was ALS."

Tam had spent months researching her symptoms before the diagnosis, and jokes that this was "the one time" the internet "was actually correct." "So yeah, when I went in, I knew it was going to be ALS, and I really didn't want to be in denial of anything just because even now I'm very realistic in my mindset," she says. "I just feel like if you're in denial and you don't believe what's happening to you, it's just a lot more unhealthy mentally."

Still, the reality of being terminally ill didn't set in for a while. Tam was still attending her college classes, hanging out with friends and family, and going about life nearly the same as she had before. For a while, the only "real-life change" she noticed was her "walking." "I never really got hit with, 'Oh, wow, it's terminal,' " she admits.

The Five-Year Mark

However, as Tam nears the fifth anniversary of her diagnosis, it has started to sink in, especially after seeing other people she has connected with online die from the progressive neurodegenerative disease. "Now that I'm hitting my fifth anniversary with it, I guess it's getting more real as time goes by that I'm progressing and deteriorating," she admits. "But still, I don't think it really affects me as much as other people just because of my mindset. I wouldn't say I'm positive, but I'm just very realistic in what's happening."

The average age of diagnosis for ALS is 55, and the usual life expectancy from the time symptoms begin is two to five years. However, Tam notes that people who are diagnosed with ALS before the age of 25, considered juvenile ALS, "normally progress slower," ranging from several years to over a decade. So, the fact that she is about to hit the five-year mark, she says, is "exciting."

"Right now, I can still walk with a walker. I use a wheelchair outside, but I'm still able to eat on my own, so things like that things that 'normal' or I guess healthy people don't really think about," she tells PEOPLE. "But I don't have any breathing machines. I'm somewhat independent enough that I can be left alone, and I'd be fine."

Using Humor to Cope

Tam has grown a following online by posting videos about living with a terminal illness, often laden with sarcasm and dark humor, to spread awareness and humanize the disease. Although she tries to keep things light, both online and in her day-to-day, she admits she is "scared about what will happen to me as the disease progresses."

"I always said I think at a certain point, when people are fully in vegetable-mode with ALS, they can't do anything, they can't speak, they can't eat," she explains. "I don't think I'd want to be in that situation just because you're not living. You're alive, but you're not really living in that sense. You can't do anything."

Tam knows that, at some point, she may start to feel like "a prisoner in my own body." "Because my mind works, my eyes work, but nothing else would work," she shares. "So even now if I tell myself to do the peace sign, I physically cannot do it even though my brain's telling my muscles to." "So I think that's what scares me the most when I become fully paralyzed, and I have no autonomy whatsoever, fully reliant on people," she continues.

Choosing to Live

While Tam doesn't know what her future holds, she is focused on enjoying the present, spending time with her husband, Spencer, and traveling as much as possible. "I'm not a Debbie Downer about this," she emphasizes. "I just want people to know that I did my best to create awareness, to just keep living despite my situation. I think that was really important to me; to not just mope around and do nothing because that's not going to change."

"If you're going to mope around, I mean, what's the point at that point? I have this diagnosis, I have this situation and I'm trying to do the best I can with it."

A Life Worth Living

Tam's story is a testament to the power of resilience, humor, and the human spirit. She has chosen to face her diagnosis with courage and honesty, and her willingness to share her experience has created a community of support and understanding. Her perspective is a reminder that life is precious, and that even in the face of adversity, there is joy to be found.

As she continues to navigate the challenges of her illness, Tam remains focused on what matters most: living fully, loving deeply, and making the most of every moment. Her journey is an inspiration to all who encounter it, a powerful reminder that we are all capable of finding meaning and purpose, no matter what life throws our way.