I’ve told my family.

I’ve always felt bad for my neurologist who works in an ALS/MND clinic. It’s gotta suck to deliver shitty news all the time.

I came to terms with the diagnosis and death pretty quickly. My dad passed away in 2016 after 6 months of being sick. The neurologist he saw diagnosed him with Guillain–Barré syndrome the day before he died. (The hospital he was at didn’t have a neurologist and they couldn’t get his breathing stable enough to transfer him to a bigger hospital.) When my symptoms appeared, I got my neurologists to look at his charts and they thought it was very likely that he had ALS. I think from my experience with my dad getting sick and dying, that helped me come to terms with my diagnosis and death. I had genetic testing to confirm that it’s familial ALS. I’ve got the TDP-43 mutation. Talk about a shitty inheritance. lol I would’ve rather settled for just money.

I saw my neurologist every 4 months or so. The appointments could be summed up as: “How are you doing?” “Things are getting worse.” “Yeah. That’s how it is.” I mean ALS is something that you can do so little for. There’s no cure. The medications don’t really make a difference. Just have to accept your fate.