Let’s Go to the Movies

Dagmar Munn avatar

by Dagmar Munn |

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During these past few months, like most folks I know, I’ve been watching movies — lots of movies. And by now, my wish list of titles is pretty well picked over. So, whenever a new release comes out, I jump on it, thinking “OK, Netflix, surprise me!”

Well, I got my surprise while watching “The Old Guard.” It checked all of the boxes of being a hero movie with a female lead, contained lots of diversity, and finished with a feel-good message. But my big surprise was discovering that ALS was a plot point.

Spoiler alert: In the movie, one of the key characters, named Mr. Copley, is motivated to join the bad guy’s side because his wife died from ALS. At one point, he recounts her battle, in which she lost the ability to speak, breathe, or “do anything.”

This movie got me thinking about the evolution of disability representation in the media. Especially my disability, ALS.

Are there movies showing ALS?

Of course, I’ve become more sensitive to the issue since receiving my own diagnosis of ALS in 2010. At that time, the media paid little attention to ALS. But in 2014, the Ice Bucket Challenge put a spotlight on the disease. That same year, Hollywood debuted two movies featuring an ALS patient as the main character. I cheered.

You’re Not You,” starring Hilary Swank, tells the story of a classical pianist having to deal with the aftermath of an ALS diagnosis. Fighting her family’s disdain and an unsupportive community, she finally finds encouragement when she hires an offbeat, fun caregiver.

The 2014 biopic of British physicist Stephen Hawking, “The Theory of Everything,” shows the progression of his disease in vivid detail. But rather than dissolving into a sad storyline, the depiction evokes reality. Eddie Redmayne, who won an Oscar for his portrayal of Hawking, took great care and spent an extraordinary amount of time learning how to accurately portray the various symptoms of ALS.

Did you know that in 2019’s “Joker,” the infamous comic book villain played by Joaquin Phoenix struggles with an illness that is very real to anyone with ALS? While the movie never names what specific illnesses Phoenix’s character has been diagnosed with, he experiences fits of uncontrollable laughter. These same symptoms manifest in people who have ALS, traumatic brain injuries, and other neurological conditions. It’s called pseudobulbar affect, or PBA.

These episodes can go on for minutes at a time and can cause embarrassment, social isolation, distress, and depression. PBA is thought to affect 2 to 7 million people in the U.S.

Looking forward

ALS visibility in the media is definitely moving in the right direction. Although we have a long way to go, I applaud Hollywood’s role in raising the profile of disabilities and rare diseases. Especially since we’ve only recently emerged from a dismal ALS Awareness Month due to current global challenges. Unfortunately, this year’s event meant that traditional activities such as fundraising walks, runs, and auctions had to go online.

We who live with ALS are the stars in our own hero movies. We live with family, friends, and caregivers who are our supporting cast. Let’s go forward and look to the happy ending, because I believe we can live well while living with ALS.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.


Elke avatar


Hello Dagmar,

My Name is Elke and I'm from Germany. Although I am not affected by ALS, I have to fight with anorexia nervosa, several multipe personality disorders and everyday is a drag.
I really love to read you columns. They are sometimes even helpful to me.
I included ALS and several rare diseases in the story I am working on since 2005. Unfortunately I don't ever plan to release. It's become too long.

I know a movie that is about the main character who is suffering from ALS and although he is a fighter and believes he gets healed and won't die from the disease, he dies in the end.
It is a South Korean movie and it's called CLOSER TO HEAVEN. Unfortunately very hard to get. I got the director's cut from a site with rare DVDs, also very expensive. But it was worth it, because I love the movie.

Elke avatar


Hello Dagmar,

my name is Elke and I'm from Germany. Althoug I am not suffering from ALS, but from anorexia nervosa and several multiple disorders, it is a drag.

Surprising is that I didn't get attentive of ALS through Stephen Hawking, although I knew about him. It was a South Korean movie which is about the main character who is suffering from ALS. Although he is a fighter and believes he get's healed, in the end he dies.
The movie's title is CLOSER TO HEAVEN and unfortunately it is hard to get.

I included ALS and other rare disease in the story I am writing on since 2003. But I don't intend to ever publish it, because it's too long

Dagmar Munn avatar

Dagmar Munn

Elke, I am o happy my columns have meaning for you and are helpful.

Thank you for the recommendation of the movie, "Closer to Heaven." I found it via Google, but it is not available in the US. Hopefully it will be sometime in the future.

In the meantime, keep writing! Hugs to you across the miles. Dagmar

Daniel avatar


HI Dagmar,
Thanks for this piece. I often blog on Rare diseases and how Hollywood depicts them. I was considering covering "The Old Guard" and you did it for me.

Another ALS film you might want to check out is on our new TV channel, The Disorder Channel. You can watch “My Turn”.

“My Turn” follows professional hockey player Scott Matzka as he grapples with ALS and plans for the remainder of his life while relentlessly advocating to find a cure for the terminal disease. Scott Matzka was in peak physical condition, and enjoyed a 13 year career as a professional hockey player for the Cardiff Devils, Grand Rapids Griffins, Cleveland Barons, Atlantic City Boardwalk Bullies, and Kalamazoo Wings.

And my blog is here:


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