Highest Rated Comments

JayMarkle3353 karma

The secret is that I struggle constantly with staying positive. My cats help. One of them, Mouse, spends most of her time on my lap. I also take a lot of anxiety meds. Turns out that I am severely claustrophobic (a fact I discovered during my first MRI), so a fan helps keep me from feeling "stuck". I also try to keep my brain busy with problems I can solve, like work, online chess, etc.

But mostly I try to mentally reframe everything as a matter of endurance. I have to deal with everything I am going through because I have no other options. This is just my life now.

EDIT: Cat Tax. The fact that Mouse has thumbs means she can hold my hand.

JayMarkle2548 karma

Usually not. They are pretty good at settling down once they hop up. There is enough space between my lap and the eye tracker camera to comfortably fit a cat laying down.

The only problem is that Mouse occasionally decides to take elaborate baths. When that happens I just have to wait for her to finish or take a short nap.

JayMarkle2520 karma

I am an administrative assistant for the College of Engineering and Computer Science at a private University. I handle graduate admissions, degree certification, PhD milestones, course scheduling, petitions, etc.

Turns out that everything I do can be handled by a remote connection, email, and Teams chat.

Ironically, being stricken with ALS during the height of COVID worked to my advantage in this one way. Everything that could be was moved remote anyway. I just never came back to my office.

My cats are named Zim, Mouse, Minnie, and Edie.

JayMarkle1298 karma

I use a Tobii Dynavox tablet with eye tracking software. It is pretty neat.

I am married. We tied the knot in September 2019. I had lost the use of my arms and my head was a bit droopy, but it was a nice wedding. Our only kids are the cats.

My parents are in their 80s so they can't help much, but they come every Saturday to watch movies with me. It is tough on them because they want to do more, but just showing up is enough as far as I am concerned. My condition is hard on everyone.

JayMarkle893 karma

The Chronicles of Prydain by Lloyd Alexander was my childhood's Harry Potter. I am also a big fan of Robert Howard's Kull of Atlantis (and pretty much everything else Howard wrote, but you have to read the original , unmodified versions).. More recently I have been loving The Laundry series by Charles Stross.

I would highly recommend that anyone with a tracheostomy get a trach guard . It is a little plastic circle with velcro straps that keeps the trach from popping off accidentally. I once had my trach pop off but was held in place by the weight of my head. So there was enough pressure to keep the alarm from sounding but I was not getting any air. My tablet was out of alignment so I couldn't call for help. I just slowly suffocated in a room full of people until my blood oxygen level dropped enough to trigger a different alarm.