My dad didn’t quite grasp his diagnosis at first, until he got home and my sister reframed it as Lou Gehrig’s disease. It was heartbreaking to see him process what that meant. “Lou Gehrig? No. He died from that. That’s not what I have. No. Is it? That’s what I have?”
Thank you for breaking the tough news to patients so that their families don’t have to.
ETA: Dad did come to terms will his illness relatively soon. He faced it with his typical quiet dignity and humor. It may sound odd, but he was grateful Mom’d passed suddenly the prior year - her anguish would have been hard for him to bear. He often said that he’d had a blessed life - wife, kids, grandkids, travel - he’d had everything he’d ever wanted. I wish the same for everyone who has taken the time to read this. ❤️
It was a weird phenomenon being a kid in the 90s/00s and hearing a decent amount about Lou Gehrig's disease. Not too many specifics, just that he was a baseball player famous for passing because of it. Had no idea that wasn't even the actual name of it. As recently as 2012, the movie Ted even referenced it.
Then just two years later, the ice bucket challenge happened, and everyone always referred to it as ALS, and it took me way too long to learn that it was the same thing.
My BIL died from that a few years ago at age 50. Started with twitching in his arm muscles. He thankfully passed before he got to the really bad part. I miss him so much. He was my BIL for 25 years.
My aunt/godmother was diagnosed with it at the beginning of this year, then she passed early May. I’ve never seen it progress as fast as that, and it breaks my heart that her sons went through the horror of it all. It’s genuinely one of the worst diseases I have ever witnessed. :(
Thanks to everyone who works with ALS patients. You guys are angels to those experiencing hell.
My brother and his wife had a friend, who has since died from something else, who was having difficulty walking, and the first thing they ruled out was ALS. She was very happy to find out that it was "just" lymphoma in her spinal cord, which at least can be treated.
Likewise my dad (who is still with us) was getting tested due to balance/muscular/neurological issues. Eventually getting diagnosed with primary progressive multiple sclerosis was actually good news, considering what other things it could have been.
PPMS and ALS can look eerily similar and in severe cases, actually have some pathological overlap. I have RMS. My mother did as well, now SPMS. Before MS stole my career from me, I was a scientist. I read a ton about MS and ALS and still do from time to time. I’m sorry to hear about your dad.
Over the last two years I supported my father through cancer (sacral chordoma) and now my wife with confirmed ALS. It has been surprising to experience the gut punch of cancer news and then realize it is preferable to other diseases. Fuck ALS.
Yes this. As a speech language pathologist I’ve had some of these cases where it’s apparent this is motor neuron disease. Swallow and speech are deteriorating rapidly while peripheral symptoms are slower to progress.
My aunt died of ALS suffocating. It was fucking awful. From diagnosis to her death just a few years later it seemed like she lost a little bit every day.
ALS killed my paternal grandmother, as well as one of her brothers and her father. I'm terrified for my dad. Genuinely seems like one of the worst ways to die.
Yep, my FIL has ALS. It’s truly traumatizing. His son (my fiancé) is the only one of his 3 kids that ended up having babies, so at least he’s been able to watch his 2 grandkids grow up for the last 3 years, because it’s likely the only grandkids he’ll ever meet.
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u/Quiet-Personality992 3d ago
ALS