Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything!

I am a nurse that has worked with ALS pts in the past when they come through my hospital unit. Is there anything that your care team has done/said that has made the transition easier? Anything that you would suggest we avoid doing/ saying?

This question is very similar to what I would love to ask too ❤️

Nurse here as well, and my first thought/question after looking after multiple trache patients who had lost a lot if not all of their physical capabilities, was there anything that any medical staff said or did that helped you deal with the mental trauma of your condition? I always worry extra about what’s going on upstairs when I care for my full nursing care/paraplegic patients, and I just want to know if there is anything at all that others could say or do to lighten the unbearable load thrust upon your psyche. I have seen the struggle behind many frozen eyes and it breaks my heart that I don’t know how to “help” per say.

I answered more thoroughly to the original post in this thread, but my answer basically revolved around the fact that people tend to look at me without seeing me.

Making eye contact and not talking to me like I am a child is huge. I don't know what to say for someone who can't move their eyes, but for everyone else an eye tracking tablet with text to speech is a literal life changer. If I didn't have this ability to communicate , if I was locked inside my own body, I would easily be dead by now.

I'm sure money is the reason, but I don't know why hospitals couldn't have one or two of these in house for non-verbal patients. This technology has been around for a while, yet almost every hospital visit I have several people stop by my room to marvel at my tablet. It's just a Windows tablet with a special camera. The communication software is set up like text messaging. I feel like if hospitals had a couple of these on hand, and nurses were given a 20 minutes of hands on training, it would give you the tools to be able to communicate with patients and greatly improve the experience for both the nurse and the patient.

I have spent quite a bit of time in the hospital since last January, and when I think back on my good vs. bad experiences they almost always come down to whether the doctor/nurse/respiratory therapist listened to me, looked at me, and spoke to me like an adult.

For example, I have had nurses walk in and move my tablet away without asking because it was in their way. The good nurses take a moment to tell me what they need to do, and ask if they can move the tablet. I'm going to say yes, but that gives me a chance to bring up the alignment screen so when they move it back later it will be easy to reposition it.

Another example: I have a "blink once for yes, twice for no, rapid blinking for oh shit" system for situations where I can't use the tablet. We write it on the white board in the room and tell the nurse on duty when I arrive. But I have lost count of the number of times nurses have totally ignored my blinking. I recently had a nurse repeatedly stab me in the mouth with the suction wand while suctioning up mucus. To the point where she drew blood. I was staring directly at her eyes and blinking rapidly the entire time.

This also comes up when my tablet freezes or is out of position. I will stare wide eyed at the nurse and blink rapidly, but the nurse won't acknowledge me. I've had nurses stand by my bed for several minutes administering medicine and never once look at my face. Being paralyzed is kinda like being homeless. People are very good at looking at you without actually seeing you. I have been stuck for hours with a frozen tablet while multiple people pass through my room because none of them really paid attention to my attempts to communicate.

Finally, people have a tendency to look at the machine and not the patient. I can almost always tell when there is a problem before the alarm sounds. I can feel the leak in the vent before the low pressure alarm triggers. I can feel the increased pressure before the high pressure alarm triggers. Not because I am awesome but because anyone in my position becomes acutely aware of their air flow. The same is true when I am not exhaling fully. I am on 6 liters of supplemental oxygen so my blood O2 can stay high for literally hours after I have blacked out from CO2 buildup. The first time my trach failed and I almost died, I was in the ER for about 7 hours. I explained that I wasn't getting full breaths when I arrived. I had gone through a period of confusion, I had blacked out, emptied my bowels, and my chest was barely moving. But no one realized that there was a problem because my O2 stayed in the mid 90s for hours until it finally plummeted.

The health care professionals that have been good, the ones where I relax when they come on duty, are the ones who make eye contact and talk to me like I am a 41 year old adult. They look at me first when an alarm goes off, and they actually listen to me when I tell them that I am experiencing an issue, even if the machines say everything is fine.

This is actually so helpful for training nurses/doctors who are with paralyzed patients. Echoing what you already said, it's extremely important to realize that you're in the room with an actual person who is still aware of their surroundings. I've seen my uncle (paralyzed years after being diagnosed with MS) try to signal with his eyes when something was wrong. He would often be ignored or people just wouldn't notice it. Makes the biggest difference for the person in that position if you could just give them some attention and treat them with mutual respect.

When the respiratory therapist trains my home nurses on the vent, every "if X happens" example he gives starts with "look at the patient" for the resolution. I can't overemphasize how important that is.

I'm just assuming you type with your eyes, does the cat interfere with that at all?

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.

I’m sorry to see this. You seem like you are fighting and in great spirit. What is your secret to maintaining a positive attitude? Thanks and I wish you all the best!

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.

I find genealogy is really good for problem solving and keeping your brain active. Obviously totally different but I have chronic depression and it's helped me a lot as it takes a lot of thought and problem solving

I will add that to my list of hobbies. Thank you. Do you recommend a particular website?

I wish I had the mental strength you do. Keep going man, you are fucking awesome.

Honestly, you probably have more mental strength than you are giving yourself credit for. If you had asked me a few years ago if I could go through anything I've gone through recently I would have said no. I have had a deep seated, life-long phobia of paralysis and suffocation. So receiving an ALS diagnosis physically hurt.

But it is surprising what you can put up with once you must. I have had plenty of emotional breakdowns but, once I have cried all I can, I am still in the same position. So you just sort of end up having to accept that this is the new normal and find ways to deal with it.

What is your job? And what are your cats names?

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.

Do you have to work? Can’t you apply for disability?

Edit: yikes, it’s a genuine question.

I could go out on disability but I bought a house the year before my symptoms started. So I gots me some bills to pay.

Plus, working gives me a sense of normalcy.

You need to lead with the important question next time.

Zim, Mouse, Minnie, and Edie.

Edie is in the original post. She likes to watch bird videos on YouTube with me.

Mouse is in my verification photo. I also posted a photo of her holding my hand elsewhere in this post.

I have not shared photos of the other two. Yet.

Dude.. I’m so sorry you got that hand. Your post inspired me to put gratitude first today. Thank you.

Question: do you have a favorite sports team or player? I have a lot of memorabilia and I’d be super happy to send you something if I have it

I appreciate the offer but I don't really have a favorite. I generally support NY teams but I didn't grow up in a sports household so I never really had a team.

On Sunday my dad and I would watch old movies, mostly westerns, crime flicks, and war movies. So instead of a favorite coach I had John Ford and Sam Peckinpah.

Hi there. So sorry to hear about your diagnosis but it looks like you’re doing so well. How do you communicate and write? Do you have a spouse or children? How is your family handling things? Much love to you.

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.

What's your favorite book? Are there any disability apps that you like to let the world know about?

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.

Outside of work, what do you spend your time doing? Do you ever get bored?

I watch a lot of movies and listen to music. We moved a large TV into my room and plugged in a Chromecast so I pretty much have something running all day.

I also play whatever video games work with my eye tracker. Currently that is Banner Saga, Axis and Allies, Master of Orion 2, and Heroes of Might and Magic 4. And online chess.

I also have a mixture of digital and audio books that I am slowly working through.

Hey Jason! Hope you're doing alright today bud!

I have for you questions three:

Greatest Album of all time?

Greatest Film of all time?

Greatest TV Series of all time?

Album: Tom Waits, Heart of Saturday Night

Film: Either Sam Peckinpah's The Wild Bunch or Bring Me the Head of Alfredo Garcia. Or John Carpenter's The Thing. The best Christmas movie is Jingle All the Way.

TV: Either Babylon 5, Farscape, or the first five seasons of Supernatural. Or Avatar: the Last Airbender

This is very inspirational for not taking my health for granted. Thank you for posting this! Can I ask what you do for a living that allows you to work full time?

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.

How do you communicate?

I use a Tobii Dynavox tablet with eye tracking software. My eyes basically replace the mouse and I select items by holding my gaze over them. I talk using an onscreen keyboard and Text-to-Speech software.

Hello! I am curious what job do you have that allows you to work with your condition the way it is?

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.

I've had disabilities worsen to the point where I've had to start using a Walker, how do you uhhh cope and rationalize the fear of knowing its gonna get way worse. What breed are your cats?

Preparation helps. For example, I had a feeding tube put in before I was having difficulty chewing because I knew I would eventually need it.

In my case, my ALS progression was pretty fast so I didn't have a ton of time to dwell on anything. Anxiety meds helped. So did edibles early on. I also cried a lot but, after I was done crying and still in the same position, I just had to accept the new normal.

Zim is an orange tabby, Mouse is a tortie, and the other two are...um...cats.

whats up homie, sick cat, so you got any sports teams you like? any philosophies you like to adhere by to live a happy and fulfilling life, ever considered psychedlics?(idk if it would be ok with ur condition but it could be fun for you otherwise)

I am a central New Yorker, so I generally support NY teams. However, I don't really have a favorite. To tell the truth, I didn't grow up in a sports household. None of my immediate family were fans of any team so it never rubbed off on me. Instead, every Sunday my dad and I would watch old movies. Mostly westerns, crime flicks, and war movies. So instead of a favorite coach I had John Ford and Sam Peckinpah.

I don't follow any particular philosophy or faith. I have read a lot but nothing ever caught me. Although I have recently been re-reading Marcus Aurelius.

I have been looking into micro dosing psychedelics, but with all the other medications I am taking, plus the general atrophy of my body, I don't think it is an option.

Do you have any orange cats? They are very funny. I mean all cats are funny but orange cats are something else. check out r/oneorangebraincell for examples

I do! Zim is an orange tabby with big thumbs. I posted a photo of him in my second edit up top, but here he is in his Christmas outfit.

What kind of job can you do full time with almost full paralysis?

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.

So a lot of people have asked what you do, I’m sort of curious why you are still working? Just a sense of purpose and something to feel good, or is it more of a needs meeting thing? I know disability barely pays the bills but my goodness is hope you’d get a good package.

God, can you imagine how boring it would get without a job, especially considering that he's still mentally capable? He'd probably succumb from boredom before the disease. Lol (I say that with all due respect.)

Yeah, before my grandma got bad with dementia she has retired, did the retired life for a bit and then just got so bored she picked up two part time jobs because she's just always was very extroverted and social and was always keeping herself busy. Some people just genuinely like working cause otherwise they would be bored.

Yup. Plus, Mouse eats the expensive prescription food.

A little from column A & a little from column B.

I bought a house the year before I was diagnosed so daddy's got bills. But it also helps keep a sense of normalcy in my life.

Is there a way for you to wear a VR headset and navigate through various worlds and environments via eye movements? I could imagine this could feel freeing. Sending a hug from the ether.

A VR headset is definitely on my list of things to experiment with. The only thing that makes me hesitate is that, while I am wearing one, I won't be able to use my tablet and eye tracker. So I won't be able to communicate. But we could probably work around that by setting a time limit and have someone check on me after X minutes.

Hi! What is your cats name? What work do you do!?

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.

Jason; thank you for putting yourself out here. In an earlier post you said a great challenge is maintaining positivity, but you see it as a test of endurance because you have no other options. As someone who often struggles with the will to continue living, I'm wondering - did and/or how did that option (end of life) factor or ever factor into your thought process? I know little to none about ALS; I'm assuming something so severe shortens one's life expectancy, so maybe there was a newfound sense of making the most of your time when you were diagnosed. I hope this post doesn't seem callous, I am genuinely just interested because from where I stand right now, if I was in your shoes, I think I'd choose not to be around. Best of wishes to you.

ALS kills motor neurons, so my brain stopped being able to send signals to my muscles, leading to almost full body paralysis.

I actually used to struggle with suicidal thoughts and urges for pretty much my entire life. Weirdly enough, as my condition worsened my suicidal thoughts went away and I found myself wanting to live.

In my experience, being diagnosed with a terminal illness was like when someone steps up to the edge to jump and suddenly realizes they don't want to die.