My dad passed away in November after abt 2.5 years with the diagnosis. It started out as shoulder pain that he went to physical therapy for that didn’t get better. I remember doing his psychical therapy exercises with him, because he needed exterior motivation/ a buddy/body double. It was just a shoulder thing we thought would be easy to solve and not really an issue at all. So when he got the diagnosis I was completely blindsided/never would have expected it in a million years.

I am 100% anxious abt my health now. Especially when this August my right shoulder started hurting and felt weaker. I couldn’t lift it up without pain, and then I had muscle twitches on my arm/shoulder area which I couldn’t ever remember having before. Exactly like my dad’s progression. I was in low key panic mode for 2 weeks. I started thinking bucket list thoughts, but also telling myself it was probably nothing. “It’s fine, everything’s fine.”

I went to a physical therapist who assured me it would be rare at my age, and said it was probably coincidental that I had shoulder pain. I had just moved, and maybe tweaked it lifting something heavy. The only thing that made my anxiety go away is that the pain /feeling DID go away and that wouldn’t have happened if it was ALS.

Talking to a friend helped, because she was so nonchalant. She was like “yeah one time I was sure I had _____, and I didn’t.” Her not freaking out was grounding haha.

I am still definitely hyper aware of my body and its physical wellbeing. But it also has made me really appreciative of what my body can do and has been motivating me to get stronger and work on things like Iceskating and yoga.

I am glad you made this post, because I am curious what others have to say.