Her grip became weak, and soon after she had trouble walking anddeveloped debilitating fatigue.
A neurologist diagnosed Tam with amyotrophic lateral sclerosis (ALS), or Lou Gehrigs disease.
The condition affects the brain and spinal cord and causes a person to lose control of their muscles.
Spencer Levine/Amanda Tam
(Although some, like Stephen Hawking, have lived much longer.)
Heres her story, as told to associate health conditions director Julia Sullivan.
I felt like I had freedom.
It looked crooked, and I was unable to straighten it.
I thought, Oh, I just got this new phone.
Maybe its the way Im holding it?
Around the same time, I started noticing some issues with my grip.
All my friends at the time joked, Girl, you gotta go work out.
You lay in bed too much, youre clearly still thinking youre in lockdown.
So thats exactly what I did.
I went to the gym to take a stab at get stronger.
But exercise seemed to make things worse.
I thought maybe cardio would be easier, but my legs would just shake under me.
My fingers also started twitching, and I had intensefatigue.
I would nap for hours every day and still have no problems falling asleep again at night.
My symptoms seemed weird, but I wasnt super concerned.
I saw my general practitioner about my symptoms on July 14, 2021.
(I waited until I was double-vaccinated before going into a hospital.)
They did anMRIof my brain, but nothing came up.
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.
I felt like a maple tree being tapped for syrup.
While I was going through all of these tests, my issues were getting progressively worse.
My walk really started to get weird, and people were noticing.
I noticed a lot of similarities in our symptoms.
I thought, Maybe the universe is telling me something.
On October 21, 2021, I was diagnosed with ALS.
But by that point, I pretty much already knew what it was.
The doctors told me what was going on, and I said, Okay, thank you.
I have a class to get to.
Can we just…circle back about this later?
(Somewhat kidding.)
Seriously, I wanted to raise awareness.
A lot of people think this is a disease that only affects old white guys.
It can happen to anyone.
I dont want to scare people and make them think, ALS is coming for you!
You better watch out!
but I had no family history of this disease or previous health issues.
I got this diagnosis as a healthy person in my 20s.
But being realistic, and having a sense of humor, about my disease has helped me cope.
I was never in denial or wondering why I got this.
I am so young, so I decided to just continue on with my life.
Theres no cure for ALS.
Ill post live sessions and see a bunch of regulars who ask me tons of questions.
I think that’s really cool.
