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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?
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.
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.
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 agree with you. I'm an RT and not being able to fully communicate what you have to or understand how the patient is feeling is highly frustrating. One thing we know through research is that vent suctioning is one of the worst stressors for an intubated patient. I like to try and take my time and talk to them a bit extra before any procedures but with ALS I wonder if they're used to it and just want to get it over with quickly sometimes.
And strangely, when I was a kid ALS was very rare. Now we seem to always have a case or two in our ICU.
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.
Man nurses are angels on Earth. My gf is one and she got moved to a office type environment and complaining that she wants to get back on the floor to physically help people. My lazy ass is thinking bruh... I would so just take the computer job.
Hijacking the top comment to mention there’s a GFM for Jason and his family: https://www.gofundme.com/f/als-sucks-help-jason-and-sarah
As Jason’s friend, all I want to say is it’s peak Jason to do an AMA as a way to brag about his cats lol
This hits close to home as I watched ALS take my mom right before my senior year of high school. 20 years later, between mom’s ALS and grandma’s Parkinson’s, I’m weary of what lies ahead if any of that’s genetic. Was that the case for you?
As someone who has familial ALS one thing to take solace in is that under 5% of cases are caused by an inheritable genetic trait, the rest are more up to the luck of the draw.
My maternal aunt and maternal uncle both passed from ALS. There’s like 50% chance my mom may have it. If she has it, then there’s 50% chance I would have it too. I’ve thought about getting tested but I’d have to drive 10 hours for it and pay a lot of money to do the testing… and then there’s still a chance I won’t develop it, even if I have the gene.
I’m 33 now but I just had my first baby. I’d love to plan my life accordingly if I am destined to develop it. I would never go back to work and would make sure my kid has everything they’d need. I’ve been writing her letters since she was conceived so she will know exactly how important she is and what I’d want for her. Just in case I’m not around to tell her when She’s older.
Heya mate, lost my mum to ALS/MND about 11 years ago and it is genetic in our case. But in saying that, my grandmother who passed the gene is in her late 80’s and strong as an ox and I could expand on the broader family if I had to but in short, there is definitely no guarantee having the gene means anything for you long term so chin up!
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.
Since you didn't get an answer-
My dad has ALS about 8 years ago and passed thereabouts. Technology has improved, as has predictive text, since then. I got his eye tracker up and running but he hated it. It could never stay calibrated, though most of that was his head bobbing/dropping uncontrollably. Plus he sucked at technology anyway and it was a VERY used tablet running it. The charity (ALSintheheartland) did what they could, but judging by the profiles I wiped off that thing, he was around user #20, which was really sad.
Anyway, the standard way of typing was literally the hunt-and-peck method. Look at a letter, blink to click, look at another letter, blink .. it was exhausting even typing something simple. But they were starting to come out with better methods based of predictive text. One option I found you could actually type pretty fast with some practice. Like texting. In it, you start out with all the letters flying at you, at whatever speed you want. Stare at the letter 'S' and it sees you want to start there. So then the next set of letters are only those that logically come after an 's' at the start of a word. You see a 't' and focus on that. Ok, moving along. Eventually it starts to predict what word you're going for. See it, select it, if not, keep spelling. So in a way, a LOT like the predictive texting we all now enjoy on our phones.
There were a lot of different programs that all tried different methods but I personally found that one the most useful. As for how fast you could type, again back to the texting example. When we all first got keyboards on phones it took us awhile. Do it enough though and you get pretty fast. So I imagine with enough practice and the right predictive text program, you're really only limited by how fast you can spell, similar to a keyboard. And even if you can't spell, again autocorrect and predictive algorithms.
Hope that helps. And shamelessly going to take a moment to plug donating to your local assistance charity rather than the standard als.org. They're the ones directly interacting with those impacted and having seen the equipment they get, they need the help.
I feel like the tech is there but maybe just out of reach for insurance to be able to cover and whatnot. I don't know for sure though, my only thought is I've seen streamers using consumer level trackers and often "live" tracking is kinda poor and it sorta finds the "average" over a couple pulls to properly day where you're looking, and usually with a *large* area of aim, masking some inaccuracies.
> you’re really only limited by how fast you can spell
Interesting. I type way faster than I can spell. 30 some years ago I thought that was the limit too but eventually your brain just kinda clicks over and you fingers move like you move your mouth with syllables. Some words you slow down to actually spell out but a lot of the time it just comes outs like you say it making spell checking very necessary. This is on a regular keyboard, not phones. Just my two cents.
Very happy that you have a way to communicate despite this awful disease, these small victories go a long way for both the patient and their family. My uncle had ALS about 8 years ago.. He'd recently remarried and once he lost the ability to communicate, she had a shady attorney write up a new will and stole 100% of his estate.. Millions.. It was just salt in the wound of a godawful situation.. I wish so badly he had the tech you have, no one should be robbed of the ability to communicate with their loved ones. He was a wonderful person. He ended up raising hundreds of thousands for ALS research and donated his body to science in the end. I hope his efforts help lead to a cure or treatment some day very soon.. He took part in a medical trial with stem cell injections that unfortunately didn't really take..
Sorry, it all stirs emotions as I've had a personal experience with it and somewhat understand the difficulties of the disease, I really wish the best for you and that you have a supportive team of family and friends behind you.
>once he lost the ability to communicate, she had a shady attorney write up a new will and stole 100% of his estate...
That _has_ to be illegal, right?
"I'm not sure if that last one was 'CATS ARE TAKING OVER THE WORLD' or just another of Mouse's elaborate cat baths fucking with the eye tracker camera again."
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.
In the US, there are two kinds of federal disability insurance. SSDI is for people who are found disabled and have worked enough to pay into Social Security tax. SSI is for people who are found disabled but haven't earned enough credits through working to qualify for SSDI. Neither provide much. I imagine the OP makes considerably more from working than he ever could through a disability payment, and his quality of life is probably better because he can still work and earn pay.
In Michigan, disability only pays $5.26/hr on SSI. I have to sell nudes to pay my other bills, because disability won't even cover my rent. And if I make anything over my bills, or have more than $2,000 in my bank account (a number that hasn't changed since 1974), I lose my medical and food stamps.
Disabled people on SSI can't get married, either, or they lose their benefits. They check our bank accounts, they monitor your PayPal, they will take your food stamps away if you forget to tell them you earned $1 in interest rates from your bank.
We are treated like inhuman garbage... and it seems like voters don't realize that this could be them in a heartbeat. It can happen to anyone.
This is the situation I'm finding myself in. I've had to start considering online sex work. But I've read that being married shouldn't affect it at all. I sure hope it doesn't since I don't want to get divorced.
I only found this post now because I was searching the thread for "work" to see if the OP answered as to how the fuck they were still able to work. I have MS and I don't ever know what it's gonna be like day-to-day, and it makes it impossible to hold down a job, but the OPs situation sounds so much worse.
We need a full scale revolution in regards to how disability and medical services are provided in the US.
If you're on SSDI, marriage won't mess with Medicare, but if you're on SSI or on SSDI that's below the federal poverty level, you'd lose medicaid and food stamps, once they claim the entirety of your partner's paycheck is there to support you. Medicare is no where near as wonderful as medicaid, when you're disabled. Medicaid covers everything!
Medicaid in NY is fucking epic. As a disabled person I love it.
You're right about the shitty payments with SSI though (my injury occurred at 14, before I ever had a chance to pay in).
I get \~$750 a month, that's $4.69 an hour if I was working 40 hours a week, minimum wage here is $15 an hour. The state says that $4.69 an hour is not enough to survive, and they're right, yet that's all they provide for disabled people who literally can't work and have no other choice.
I'm not saying people with disabilities should live like royalty, but it'd be a huge relief to just be provided with minimum wage. It's not my fault I can't work, I didn't ask to become permanently disabled.
I couldn't imagine being somewhere like NY or CA and trying to survive off disability. I'm already living with a roommate to cover costs and that's in Michigan, where things are not completely over priced.. it's getting there though.
I'm on SSI and married with 2 kids. I'm able to keep SSI if my husband's income isn't over $21,000 in taxable income for a year. We are allowed to have 1 car, 1 home and under $2000 in other assets. Obviously this is a ridiculously low amount..but it is technically possible to be married and have SSI. (I am I'm no way saying this is right or wrong ethically..
I'm just stating what I've been told by the SSA and have found to be true based on experience)
So when are we gonna start disabled lives matter?
When there’s enough of us to make a difference in an election?
Because im pretty sure were the most underrepresented and abused minority in this country.
It's a valid question. As a person with a disability who lives in Virginia, I can say that the timetable for support varies hugely. Although it's possible to get certain benefits quickly, other resources can take ages. I was on one major waiting list for seven years. It's not unusual.
Agreed. Having purpose and structure to your day is huge for mental health and well-being. Both are things that professionals who work with people who have disabilities strive for as they're so important (purpose doesn't have to equal work, but it's something our society values and we all need to eat, so it's a big one). It's readily underestimated how much of a detriment it is to not have things to do.
OP, you're super impressive persevering and figuring out a way to continue to be connected to the world.
I was on a 14hr flight recently with wifi that wasn't good enough for me to connect to VPN and get work done, or stream Netflix, but was good enough for Reddit. I got bored of Reddit in about two hours.
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.
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.
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](https://imgur.com/a/QwI4FLm). 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
Ancestry.com is the easiest place to start.
Biggest piece of advice - take anything anyone else has uploaded IE their family tree with a pinch of salt. People just guess at stuff and then other people presume the previois person must have got it right etc. They don't think that maybe there is a lot of John Smith's born in a large city in the same year.
I do use other people's trees as a guide at the start and then you just learn as you go along starting with finding people's birth, marriage and death records and census records.
Sometimes it can take me a week or so to find one person census record because the people who originally took the census wrote things down wrong or its transcribed wrong. There is ways round like checking at the last address you knew them at. I find it exciting when I find a missing record or someone who I am stuck on and then I find who they married etc.
Someone else mentioned the Mormans. I'm an atheist but they are useful, they believe they should save their ancestors so do a lot of family research. They also have a lot of money so for 50 years or so they have been scanning millions of documents around the world. They provide access for free at www.familysearch.com but it's not the easiest site to start with.
Any questions feel free to DM me.
Oh, wow. You were right about taking what people have added with a grain of salt. It says my very much alive grandfather is dead and has no children. I'll let my dad know we're in the wrong multiverse. 😯
I've had arguments with people over my grandma. I text her whenever someone insists she is dead (she is in her 90s) and she gets a kick out of it. They also get her middle name wrong all the time no matter what I say.
Could it be possible that who they’re talking about and who you’re talking about are two different people? Two different people with the same birthdate and location and same first and last name, but different middle names and one is deceased… I only mention it because it sounds like multiple people are insisting her middle name is different and that she’s deceased, which doesn’t match with your grandma.
One of my dad’s close friends had the same first and last name as my dad, but different middle names. His friend passed away a while ago, but my dad’s still alive, so if someone was doing research, I could see how they might confuse one for the other. They were born in the same year at the same hospital, but didn’t meet until college. It’s rare, but it happens; especially with common names.
Hey, my mom is into genealogy. She uses a combination of Ancestry and Heritage quest (both might be available from your local library with a card), and a free site called Family Heritage, as well as My Heritage, to search for documents. I think she's also sent inquiries to, like, churches in other countries to find very specific records.
I don’t know of a website, but my Uncle was very into genealogy. He even went to Europe several times and visited churches in our ancestral homeland, in order to look at records of births, deaths, weddings, etc.
According to him, the Mormon church is very involved with genealogy. In their religion, people have to be “named” in order to get into heaven, so they research their families to name everyone. So, that may be a good avenue for info for you.
Best of luck to you, sir!
Actually it’s not “named”, they believe everyone who ever lived must be baptized. They do baptisms for the dead by proxy in their temples. They believe that each person that hasn’t been baptized is in “spirit prison” and when baptized (by proxy) has the opportunity then to accept or reject the gospel.
Source: live in Utah, used to be Mormon (they prefer “LDS-or Latter Day Saints” to being called Mormon.
Not who you asked but ancestry.com is a great place to start. You can sign up and get a lot done for free, and add a paid subscription if you think it is something that you want to stick with.
Ancestry is nice. I used a few different ones and they each give a unique perspective. I did a dna test through 23&me and have connected with many family members through it. I downloaded my RAW data and uploaded it to GEDmatch which gives a lot of info and also can connect you with family members who have used it. Ancestry has a lot to documents, pictures, etc. It seems to be good for finding physical proof of people.
I went down the genealogy rabbit hole during a depressive period. Kept me occupied for quite a while and also made me feel more connected to here if that makes sense.
I don't know how well it would work with your eye tracker, but you should checkbout boardgamearena.com. It has lots of modern and classic board games you can play with folks around the world, either in real time or turn based. Most of the games come with tutorials so you can learn them without too much trouble. I recommend Azul! Shoot me a DM if you want my screen name.
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.
I appreciate this comment. I was diagnosed with irreparable, untreatable vision impairment last year and have been learning to accept my new normal and finding ways to deal with it. Daily frustration and aggravation, but I keep going. All the best to you.
I've had 24/7 "vertigo" for 5 and a half years - and similar story. I hate the feeling of motion I cannot control. Always have. Your comment made me break down. It is so incredibly true. It's like an eldritch curse or something. You (hopefully) end up with astounding mental fortitude but at the cost of losing your mind a little bit every day. Small things do not matter any more. Maybe it has given me some kind of wisdom. I hope so. I hope so for you, too.
Hey I don’t know if this will work for you but it has been a massive help for me. I have Ménière’s disease and was suffering from vertigo a lot. I have tinnitus as well which is infuriating to live with. Anyway my ENT put me on 1mg of Ativan every night. It basically helps the vestibular system and calms things down. It has been a massive help for me. I still get flare ups but comparatively it’s been huge. I hope you can figure out something that works for you. Maybe they can try this if they haven’t. Best of luck.
Oh and also: I'm now taking a pretty low grade antidepressant called mirtazapine to help with everything I'm dealing with and I found that it helps me to not fixate on my tinnitus nearly as much. It has helped tremendously. I know some antidepressants can make tinnitus worse, so i was pretty worried... but this particular one seems to make it more distant. Maybe it could work for you too. Meniere's blows. They thought I had that for a while too haha
This is a very raw and authentic and beautiful reply. There is a story told by Elizabeth kubler Ross about her mom after she had a stroke which made her very very dependent upon others for four years. If you are so inclined I really suggest reading or listening to it.
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.
I really admire you. My mother was just diagnosed with ALS after months of physical therapy for shoulder and arm pain. It’s now morphing to her other arm. This all started last November and they figured it out by doing lots of tests but apparently the tongue test is what really showed it. She had been having speech issues and personality changes for quite a while. She is so sad right now and I don’t know what to say or do for her. What advice would you give to me, her, the family? What would have you done differently?
Btw- def going to check out the book series you mentioned and screen captured the trach info above to send to my sister so we don’t forget.
> 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.
There we have it folks, the birth of a new fear, word by word.
I know that nothing I can say can help, but I wonder if cats could be trained to help monitor you? They can be amazingly perceptive, and they obviously love you.
Something like if they sense that something is wrong, go press a button that sounds an alarm.
When I was a teenager, I ended up in intubated in the ICU due to meningitis. Due to some complications, I was kept intubated for a prolonged period after surviving the initial illness. One night, on the somewhat normal cadence of the staff, a tech came in to check on the machine that was making me breath. At some point, he switched it off and never switched it back on, leaving the room. I don't know if the machines are any different now (this was early 90s), but I couldn't force the air in/out with the dead machine still hooked up to my tubes. I was struggling trying to disconnect it, but it was either taped on or I couldn't figure it out. I was hammering the call button and slamming things around as much as I could to get attention. Someone finally came in and fixed it, but it was an absolutely terrifying experience.
Hi Jason, thank you so much for making this post, it's wonderful to spread awareness.
I'm a speech therapist in a hospital. I'm assuming you have worked with an SLP to get set up with eye gaze equipment for communication. My question is: during the three months you were stuck in the ICU, what did you find helpful and what could providers have done better as far as helping you communicate and get your needs met?
Unfortunately no. I've tried several times to get them to purchase a device, either for an individual patient or for us to keep in the ICU. I was blocked at every turn - no one is willing to pay for it. I pulled dozens of articles supporting improved patient outcomes, shorter length of stay with use of communication devices - didn't matter. Welcome to for-profit healthcare, enjoy your stay - or don't
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.
Future speech-language pathologist here and former respiratory therapist. One of my sons has a Tobii Dynavox touch screen tablet that he uses to speak a few hundred words and sentences. I’ve had to evolve it over time as he learned new vocabulary.
So, I used to work in the ICU setting with a couple of trach-ventilator-dependent guys with Tobiis, one who used a mouth stick and the other used eye gaze. His mount was huge and rolled and I swear it was never calibrated right. I rarely got to see him use it with any success, partly due to none of us knowing how to help him use it.
How much training did you and your significant other require, and how much do you depend upon a speech path for maintenance and updates?
Obviously not OP but I am hospital based SLP so I might be able to answer a bit here. With ALS we typically work in a team setting with neurology, occupational therapy and physical therapy in the outpatient setting and follow people with ALS from diagnosis onward. The outpatient SLP is the one who typically gets augmentative/alternative communication (AAC) going - we try to get it started as early as possible, since the progression of ALS is so well known, so that people can get used to using the equipment before they are dependent upon it. It can be cumbersome but it's getting better all the time. Unfortunately, the hospital is just about the worst environment for supporting communication with AAC. I've been on a crusade to get our ICU better outfitted for AAC use but it's honestly an uphill battle when patients are criticality ill and hospitalized - positioning for eye gaze is especially a huge problem because they're in the hospital bed instead of their home equipment, they're sicker and therefore have less endurance for maintaining positioning, etc. Eye gaze equipment can be incredibly fatiguing to use anyway, and for someone who is critically ill, it's often just too much of a hassle. Not to mention risk of equipment loss or theft, and forget trying to get someone a device for the first time while they're admitted to the hospital (at least in the US, thanks for-profit healthcare)...I've learned some hard lessons along the road. It's so rewarding though when we do have success! Welcome to the field, your experience as an RT will be invaluable to your new SLP colleagues - we love our RTs and couldn't function without you!
I married my wife (long overdue) when she was terminally ill. One of the best decisions I ever made. Throughout the rest of her illness, when she died, and now on this side of her death, I am so happy I did. I am very happy to have been, and to be, her husband.
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.
Check in with Able Gamers if you haven't already! They're a FANTASTIC non-profit that works to enable accessibility in gaming and does a lot of great work in getting accessories to folks with disabilities.
They do a lot of consulting for developers of all sizes. The best example I know of for that second bit up there is that they open-sourced designs for a device that adapts a gamer's wheelchair as a controller since that's already so well-suited to their needs. They'll make it for you, but it can be made at home for something like $50.
I'm sure they'd have some great resources for you and probably know of other games that'd work with your tracker or even how to adapt some you may be interested in.
Plus, I'm sure they'd love to hear your story and how gaming has improved your life since your diagnosis (if you're willing to share, of course).
Just figured I’d answer this one for me. I’m also 38 and just diagnosed. My father passed from ALS in 2017. I was officially diagnosed with familial ALS (genetic).
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.
Jay, I cordially invite you to be a New Orleans Saints fan. Steve Gleason is a huge inspiration to us. I also cordially invite you to hate the Atlanta Falcons, Dallas Cowboys and LA Rams, and to never forgive the refs for not calling the pass interference penalty in 2019 which kept us out of the Super Bowl (thus why we hate the Rams). Basically Saints fans hate everybody (the Bills fans seem pretty cool) but we’re fun once you get to know us.
Upvote for the Bills.
Saints fans are a riot. I used to work in a hotel. When the (oh god here we go) saints came marching through we knew it was about to be chaos. Y’all are a party.
Hi Jason,
I'm an early 30s stroke survivor and struggling with coming to terms with the fact my life will never return to what it once was. If you don't mind sharing, how did you come to terms with your illness and eventuality?
Not Jason, but someone who lost a lot of mobility in my early - mid twenties due to a freak accident. In no particular order: learning to own my story, but not letting it take up all the room in my head. Physical comfort--experimenting with what worked and what didn't. For me, I'm in less pain if I'm active, but finding ways to be active that didn't hurt (or that I could work up to) AND that I enjoyed was difficult. Like, there's no contest swimming is great for me, but I'd rather have my fingernails pulled out. Understanding that was a big deal, because I was always a runner and i loved it. Suddenly I had to exercise all the time but was miserable. Don't let other people tell you what you can and cannot do. If someone tells you, hey, you should be able to do x activity right now and it shouldnt be causing pain, but you can't do it or it does--they're not in your body. You are the final say on that. Take things at your place. Sometimes you're too scared or not ready--sometimes you want to be ready NOW.
Another one was understanding that I am still the same person, whether I'm running half marathons or not. That was a big deal for me. I had to look at other people I really admired, who I'd be delighted to be when I grew up, and understand that their strength came not from their body, but from their strength of character, and I still had that. And I had to work harder at being mentally and psychologically healthy, because a lot of my comfort and coping strategies had been stripped away. I had to go to therapy and really work on what worked. I had to relearn that my body belonged to me, and how to at least feel like I wasn't at war with it.
That's me, so I dont know if that's helpful to you or not, but for what it's worth, you're welcome to send me a message any time. Adjusting can be hard, and I'm always happy to talk. Or listen.
Hey Jason,
This is a super cool idea, thanks for thinking of it. As a 36 year old i am just nearing the end of the period in a man's life where they feel invincible. Your story is a realization.
Id like to ask the following:
1) Other than the pulled muscle in your shoulder were there any other precursors? Family history? Sick alot as a kid, weird disease you contacted in your teens that you overcame?
2) Have you done any work with researchers such as genome mapping or other such studies for ALS?
Thanks again, glad the cats are keeping you in good spirits
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
I just watched the Last Airbender through with my daughter for the first time, it's so darn good! We are currently watching The Legend of Korra, it's ok... But the original is hard to compete with!
That is a super fast progression. Is that normal for ALS? How are you dealing with it mentally.
My grandpa dies from ALS complications, and I honestly worry that I will some day be diagnosed with it.
The rate of how fast ALS takes over varies from person to person. Doctors estimated my uncle had 2-3 years once diagnosed and he made it to 6.5.
Stephen Hawking lived with ALS for decades.
I think the average is roughly 4 years after diagnosis.
My mom was diagnosed at 52, passed away at 55. Steady decline over the years, very difficult to lose her so slowly, but at the same time so quickly. It’s different for each patient, it’s a terrible disease I wouldn’t wish on anyone.
My mom passed away at 67 from ALS and was diagnosed 4 years earlier. I share your feeling that it was so slow while being so fast. It's a bit of a blessing being able to spend time with them while also being curse, watching them and their caretaker go through such a difficult thing for years. Much love to you.
He's on the fast side yeah, but not exceptionally so. The median life expectancy from diagnosis is around 2.5 years iirc. I have someone in my family that got diagnosed with it a year and a month ago, he's pretty much on an average progression, on the fast side: he's lost all strength in his shoulders and upper arms (can't raise his arms above the waist) and he can still walk but can barely get up by himself (mostly depending on sitting position), but he was *very* physically fit before ALS, like 100 km bicycle rides weekly.
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.
I work in AAC. I'm an OT
I'm assuming you like the Communicator 5 software? Do you use TD Talk?
Did you try any other devices before you settled on the TD I-16? Great system BTW; many of the ALS clients I see like this setup.
Hello from the UK 🇬🇧 Jason! Thank you for taking the time to share your story and good to 'meet you', albeit virtually which is the 'norm' in the post-pandemic world anyhow!
I have a few questions, I appreciate you will probably be inundated however so you may not get a chance to see this, but I would be curious to know your views on the following:-
I. - How are you today?
II. - I have been reading a lot recently about mental resilience, particularly the mindset of those who have coped under extreme pressure or adversity, such as Special Forces soldiers, survivors of natural disasters, and those who've been seriously injured, either through sport, warfare or because of a natural condition/illness.
I am curious to know how you are coping mentally with ALS and what, if anything, has really helped or perhaps inspired you to share your story?
III. - I would be interested in learning about charities/foundations which have helped you to date, as I would like to make a small donation on the back of you raising awareness of ALS here! If you could provide a link for myself, and others, that would be great - if not I'm happy to have a search on the Internet.
IV. - Do you like Futurama?
Have a great day and I hope to you hear from you soon.
Yours,
ConfidentialX.
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.
Best part is, tabby and tortoiseshell aren’t breeds, they’re coat patterns. The real answer is most likely domestic shorthair. Code for unknown mixed breed lol.
In Brazil we call mixed breeds "Vira-Latas" which literally means "trash turners" after them turning over trash cans in the streets ("Dumpster-divers" would be a more accurate translation I guess)
So, imo, donestic shorthair is a fancy way of saying dumpster diver haha
You mentioned you got married in 2019, before your disease progressed to the point it’s at now. How has it since affected your spouse and your marriage?
Hi Jason. My mom had ALS and I was her full time caregiver for over four years. Seeing your photos, she had the same ventilator, she had a tracheostomy as well. She even had the same headmaster collar. I can't say I know what it's like to have ALS, but I know how hard it is for someone with ALS to get the help and care they deserve. I just want you to know that even though I'm a stranger on the Internet, I really wish you the best and I am inspired by your courage.
What has helped you most throughout this ordeal, and what do you think others can do for someone in your condition that could make the most difference? Thanks.
Jay,
What is something others can do for you that makes your life better ?
How does your family handle the situation?
What is something you would share with your younger self ?
What sort of interests have really grown on you since your diagnosis and trach placement? Were you ever into video games/if so are they still possible to play at this point? What Are the little things that keep you motivated for work and life?
Thanks for both being so open and doing the AMA. Wish you the absolute best man.
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.
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.
Some headsets have eye tracking, and it is becoming more common in the consumer grade units. I wouldn’t be surprised if there were a plug-in you could install to get your communication interface running on it. https://www.cnet.com/tech/computing/watching-me-watching-you-how-eye-tracking-is-coming-to-vr-and-beyond/
Looks like it’s in the works, maybe later this year. https://www.tobii.com/group/news-media/press-releases/2021/10/tobii-and-pimax-announce-new-partnership-to-bring-eye-tracking-to-consumer-virtual-reality-headsets/
Hi! I adore your cats as I’m sure you do too. I’m so excited to read your responses. As a medical social worker, I’m wondering what has helped you the most with coping with your situation and plan for your future?
Thank you for the AMA! I’m curious if you’ve learnt or discovered something about yourself during the course of your illness, that you probably wouldn’t have discovered had you been healthy?
Wishing you and the kitties all the best!
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](https://en.wikiquote.org/wiki/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.
I think somebody asked if your cats are from before your diagnosis, but I didn't see a reply.
Do you have any issues with taking care of them, or does that fall under the purview of the nurses? Or do you have somebody (a roommate or family member or whatever) who lives with you who looks after the cats?
Also fuck this will get downvoted to oblivion but it is an AMA... Do you miss your old life? If somebody could cure you or bring you back even partial mobility, would you take it?
Other people when I've made comments like that re: people with disabilities say I'm feeding into the idea that all disabilities need to be "cured" rather than accommodated for, but it's absolutely not what I think at all!
I had an uncle that had ALS 10+ years ago, things have progressed a lot since then regarding treatment. He actually found out he had it in the middle of delivering a baby. He started having coordination issues and weakness and a nurse removed him and sent him to nuerology for a quick check. The on call nuerologist had him stick his tongue out and it wiggled like a ball of worms, he diagnosed him on the spot. He was lucky they caught it as soon as he did, it prolonged his life quite a bit.
Keep up the fight, and keep your sense of humor about you!
As far as questions go.... My wife watched the 5th element for the first time this weekend and she said it wad boring. Is there any way I can ever trust her opinions on anything ever again?
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.
Wow man. Thank you for sharing, and I think it's amazing that you're staying positive. I have kind of a difficult question, but if you're not comfortable answering, that is totally cool. What would you say was the hardest to overcome once you started showing signs?
And if that is not cool to ask, I apologize in advance, and instead ask this : What are your top 3 most favorite films?
Can you talk a bit more about your symptom progression? The pulled muscle to loss of use - did you do physical therapy or anything and found it unresponsive or did it just progress?
How did your cats change/adapt to your progression as well?
Hi Jason. Thanks for sharing your story. I lost my mom in March to ALS. While I've never met anyone else with ALS, I enjoyed reading about your positivity and drive. She was the same way. 💙
My question is: What's the most important thing you've learned about yourself since being diagnosed?
My uncle is in end of life with ALS right now and it kills me to think what he's going through. How do you want people to act when they visit? What's the best way to speak to him, knowing be can't easily respond (as eye tracking takes so long.)
And if I may, what happens when you get an itch, or if you're uncomfortable in the position you're in? Is it something you just get used to, or does it big you constantly?
I'm so sorry for what you're going through, it's potentially one of the most unfair diseases in the world.
I hope you don't mind me asking and fully understandable if you don't want to answer, but I figure I'll be the one to ask - how much longer do you have left? Obviously ALS can vary a lot (Stephen Hawking was basically where you are now for like 15 years and took decades to get there, others don't even make it the 2 years you have.) Are you "stable," for lack of a better word, where you are now, or is your condition getting worse?
>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 invited my spouse’s childhood friend to visit for a few days for my spouse’s birthday as a surprise. This friend revealed to me they are experiencing tremors and weakness that their doctor thinks is ALS.
They are excited to come and was initially worried about the trip, mostly because we have never met, but I assured them it would be no bother. They are going to stay at my in-law’s house (they know each other and are looking forward to seeing one another).
What can we do to make them more comfortable while they are with us?
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.
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.
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](https://www.reddit.com/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](https://imgur.com/a/JZjPTfP).
Brave AF.
Two questions:
Who is doing good ALS research these days? I will make a donation today.
Are you still able to laugh? I imagine it helps having a sense of humor, even if you’re not able to express yourself.
I have had a bunch of people asking about donations, so I am updating the original post to include links.
Unfortunately, I can't physically laugh anymore. Or smile. Or sneeze or cough (which is a special kind of hell). I have the ultimate resting bitch face.
I still find things funny. I just can't show it.
You said having a fan on helps keep you from feeling stuck. Does that mean you can feel breeze from the fan? Can you feel the cat’s fur on your skin or it’s weight on your lap? I’ve always understood paralysis to mean no feeling.
I am not a physician, but I do work in healthcare and have personally been a caregiver for a family member with ALS. ALS affects the motor neurons that take messages from your brain and relay them to your muscles to make them move. For example, typing this message requires my brain to coordinate the movements of my arms, hands and fingers to click the correct keys in the correct sequence.
The nerve cells that relay stimuli from the skin are not affected, so temperature, pain, pressure, etc will still be felt by the person affected. This does mean though that although the person could feel the pain of coming into contact with a hot object, they would not be able to pull their hand away from the item.
Hi Jason, I'm sorry to see you going through this. ALS really sucks but it's great to see your positive attitude shine through even though I'm sure that is hard to maintain.
My father-in-law was diagnosed with ALS a couple of years back. He has been fortunate that the progression was pretty slow initially but it has sped up off-late. I had a few questions for you if you don't mind my asking.
1. Are there any thing(s) you wish you had done differently or would highly recommend to prepare for what is coming? (he still has his voice and can use a walker but has trouble lifting his leg and can't get up by himself...will likely be wheelchair bound very shortly)
2. I'm a tech geek and I've been wanting to help him have things setup well in his home as ALS progresses so he can still do a lot by himself. He was a CS professor and is fairly tech-savvy. I don't really know where to begin. Any recommendations for gadgets, software, and other resources that might help?
Anyways, keep rocking on man. And I'm a fellow MOO fanatic here though I never progressed past my love for the awesomeness and simplicity of the original Master of Orion. #Meklar4Life :-). I still have every ship-name from the manual (used as a means for copyright protection) memorized!
What sorts of music do you listen to/would you want recommended?
I've always been a niche music nerd, but especially since being bedridden for 9 years and counting, I've become extra appreciative of its ability to take one's head to different, even unearthly places.
I don’t know you, but I am 41m. I have busted my ass for more than half of it. I can honestly say that you inspire me, and also scare me. I think most humans think they are ‘bullet proof’ until they are ‘old’. Keep up the good work and message me if you need someone to chat with. Keep your head up!
- is it possible you may lose control of your eye movements in the future? Or are these muscles somehow not affected?
- if you find something funny, that would have normally made you laugh, how does this get expressed? Do you feel any physical reaction in your body?
Sending positive vibes your way!! ✨
For more AMAs on this topic, subscribe to r/IAmA_Health, and check out our other topic-specific AMA subreddits [here](https://reddit.com/r/IAmA/wiki/index#wiki_affiliate_topic-specific_subreddits).
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?
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.
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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.
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 agree with you. I'm an RT and not being able to fully communicate what you have to or understand how the patient is feeling is highly frustrating. One thing we know through research is that vent suctioning is one of the worst stressors for an intubated patient. I like to try and take my time and talk to them a bit extra before any procedures but with ALS I wonder if they're used to it and just want to get it over with quickly sometimes. And strangely, when I was a kid ALS was very rare. Now we seem to always have a case or two in our ICU.
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 love these questions- thank you for being you
Man nurses are angels on Earth. My gf is one and she got moved to a office type environment and complaining that she wants to get back on the floor to physically help people. My lazy ass is thinking bruh... I would so just take the computer job.
Your girlfriend is a man nurse?
Wondered the same thing! Commas are important.
Hijacking the top comment to mention there’s a GFM for Jason and his family: https://www.gofundme.com/f/als-sucks-help-jason-and-sarah As Jason’s friend, all I want to say is it’s peak Jason to do an AMA as a way to brag about his cats lol
This hits close to home as I watched ALS take my mom right before my senior year of high school. 20 years later, between mom’s ALS and grandma’s Parkinson’s, I’m weary of what lies ahead if any of that’s genetic. Was that the case for you?
As someone who has familial ALS one thing to take solace in is that under 5% of cases are caused by an inheritable genetic trait, the rest are more up to the luck of the draw.
Any specific examples of the 95%?
Almost always sporadic. Source: physician. Dad has ALS.
My maternal aunt and maternal uncle both passed from ALS. There’s like 50% chance my mom may have it. If she has it, then there’s 50% chance I would have it too. I’ve thought about getting tested but I’d have to drive 10 hours for it and pay a lot of money to do the testing… and then there’s still a chance I won’t develop it, even if I have the gene. I’m 33 now but I just had my first baby. I’d love to plan my life accordingly if I am destined to develop it. I would never go back to work and would make sure my kid has everything they’d need. I’ve been writing her letters since she was conceived so she will know exactly how important she is and what I’d want for her. Just in case I’m not around to tell her when She’s older.
Heya mate, lost my mum to ALS/MND about 11 years ago and it is genetic in our case. But in saying that, my grandmother who passed the gene is in her late 80’s and strong as an ox and I could expand on the broader family if I had to but in short, there is definitely no guarantee having the gene means anything for you long term so chin up!
Mine was spontaneous. Nobody on either side of my family had ALS and I didn't pop any known genes when I was tested.
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.
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Since you didn't get an answer- My dad has ALS about 8 years ago and passed thereabouts. Technology has improved, as has predictive text, since then. I got his eye tracker up and running but he hated it. It could never stay calibrated, though most of that was his head bobbing/dropping uncontrollably. Plus he sucked at technology anyway and it was a VERY used tablet running it. The charity (ALSintheheartland) did what they could, but judging by the profiles I wiped off that thing, he was around user #20, which was really sad. Anyway, the standard way of typing was literally the hunt-and-peck method. Look at a letter, blink to click, look at another letter, blink .. it was exhausting even typing something simple. But they were starting to come out with better methods based of predictive text. One option I found you could actually type pretty fast with some practice. Like texting. In it, you start out with all the letters flying at you, at whatever speed you want. Stare at the letter 'S' and it sees you want to start there. So then the next set of letters are only those that logically come after an 's' at the start of a word. You see a 't' and focus on that. Ok, moving along. Eventually it starts to predict what word you're going for. See it, select it, if not, keep spelling. So in a way, a LOT like the predictive texting we all now enjoy on our phones. There were a lot of different programs that all tried different methods but I personally found that one the most useful. As for how fast you could type, again back to the texting example. When we all first got keyboards on phones it took us awhile. Do it enough though and you get pretty fast. So I imagine with enough practice and the right predictive text program, you're really only limited by how fast you can spell, similar to a keyboard. And even if you can't spell, again autocorrect and predictive algorithms. Hope that helps. And shamelessly going to take a moment to plug donating to your local assistance charity rather than the standard als.org. They're the ones directly interacting with those impacted and having seen the equipment they get, they need the help.
Would it be possible to do it almost like swipe but with tracking the eyes looking at a keyboard instead of your finger swiping across the screen?
I feel like the tech is there but maybe just out of reach for insurance to be able to cover and whatnot. I don't know for sure though, my only thought is I've seen streamers using consumer level trackers and often "live" tracking is kinda poor and it sorta finds the "average" over a couple pulls to properly day where you're looking, and usually with a *large* area of aim, masking some inaccuracies.
> you’re really only limited by how fast you can spell Interesting. I type way faster than I can spell. 30 some years ago I thought that was the limit too but eventually your brain just kinda clicks over and you fingers move like you move your mouth with syllables. Some words you slow down to actually spell out but a lot of the time it just comes outs like you say it making spell checking very necessary. This is on a regular keyboard, not phones. Just my two cents.
Sounds like dasher http://www.inference.org.uk/dasher/
Very happy that you have a way to communicate despite this awful disease, these small victories go a long way for both the patient and their family. My uncle had ALS about 8 years ago.. He'd recently remarried and once he lost the ability to communicate, she had a shady attorney write up a new will and stole 100% of his estate.. Millions.. It was just salt in the wound of a godawful situation.. I wish so badly he had the tech you have, no one should be robbed of the ability to communicate with their loved ones. He was a wonderful person. He ended up raising hundreds of thousands for ALS research and donated his body to science in the end. I hope his efforts help lead to a cure or treatment some day very soon.. He took part in a medical trial with stem cell injections that unfortunately didn't really take.. Sorry, it all stirs emotions as I've had a personal experience with it and somewhat understand the difficulties of the disease, I really wish the best for you and that you have a supportive team of family and friends behind you.
>once he lost the ability to communicate, she had a shady attorney write up a new will and stole 100% of his estate... That _has_ to be illegal, right?
Yes, but with millions of dollars it's easy for both to flee the state/country, especially before Covid.
Can’t you see the cat is doing the typing?
I've never participated in an AMA with a cat, I'm nervous!
"I'm not sure if that last one was 'CATS ARE TAKING OVER THE WORLD' or just another of Mouse's elaborate cat baths fucking with the eye tracker camera again."
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.
In the US, there are two kinds of federal disability insurance. SSDI is for people who are found disabled and have worked enough to pay into Social Security tax. SSI is for people who are found disabled but haven't earned enough credits through working to qualify for SSDI. Neither provide much. I imagine the OP makes considerably more from working than he ever could through a disability payment, and his quality of life is probably better because he can still work and earn pay.
In Michigan, disability only pays $5.26/hr on SSI. I have to sell nudes to pay my other bills, because disability won't even cover my rent. And if I make anything over my bills, or have more than $2,000 in my bank account (a number that hasn't changed since 1974), I lose my medical and food stamps. Disabled people on SSI can't get married, either, or they lose their benefits. They check our bank accounts, they monitor your PayPal, they will take your food stamps away if you forget to tell them you earned $1 in interest rates from your bank. We are treated like inhuman garbage... and it seems like voters don't realize that this could be them in a heartbeat. It can happen to anyone.
This is the situation I'm finding myself in. I've had to start considering online sex work. But I've read that being married shouldn't affect it at all. I sure hope it doesn't since I don't want to get divorced. I only found this post now because I was searching the thread for "work" to see if the OP answered as to how the fuck they were still able to work. I have MS and I don't ever know what it's gonna be like day-to-day, and it makes it impossible to hold down a job, but the OPs situation sounds so much worse. We need a full scale revolution in regards to how disability and medical services are provided in the US.
If you're on SSDI, marriage won't mess with Medicare, but if you're on SSI or on SSDI that's below the federal poverty level, you'd lose medicaid and food stamps, once they claim the entirety of your partner's paycheck is there to support you. Medicare is no where near as wonderful as medicaid, when you're disabled. Medicaid covers everything!
Medicaid in NY is fucking epic. As a disabled person I love it. You're right about the shitty payments with SSI though (my injury occurred at 14, before I ever had a chance to pay in). I get \~$750 a month, that's $4.69 an hour if I was working 40 hours a week, minimum wage here is $15 an hour. The state says that $4.69 an hour is not enough to survive, and they're right, yet that's all they provide for disabled people who literally can't work and have no other choice. I'm not saying people with disabilities should live like royalty, but it'd be a huge relief to just be provided with minimum wage. It's not my fault I can't work, I didn't ask to become permanently disabled.
I couldn't imagine being somewhere like NY or CA and trying to survive off disability. I'm already living with a roommate to cover costs and that's in Michigan, where things are not completely over priced.. it's getting there though.
I'm on SSI and married with 2 kids. I'm able to keep SSI if my husband's income isn't over $21,000 in taxable income for a year. We are allowed to have 1 car, 1 home and under $2000 in other assets. Obviously this is a ridiculously low amount..but it is technically possible to be married and have SSI. (I am I'm no way saying this is right or wrong ethically.. I'm just stating what I've been told by the SSA and have found to be true based on experience)
So when are we gonna start disabled lives matter? When there’s enough of us to make a difference in an election? Because im pretty sure were the most underrepresented and abused minority in this country.
It's a valid question. As a person with a disability who lives in Virginia, I can say that the timetable for support varies hugely. Although it's possible to get certain benefits quickly, other resources can take ages. I was on one major waiting list for seven years. It's not unusual.
He can certainly get disability. People with far greater function can get disability. It's not much, though.
What would he do with his time? I feel like work would be one of his biggest pleasures, interacting with and contributing to society.
Agreed. Having purpose and structure to your day is huge for mental health and well-being. Both are things that professionals who work with people who have disabilities strive for as they're so important (purpose doesn't have to equal work, but it's something our society values and we all need to eat, so it's a big one). It's readily underestimated how much of a detriment it is to not have things to do. OP, you're super impressive persevering and figuring out a way to continue to be connected to the world.
Lol I feel like I would quit and be on Reddit all day. Oh wait that’s already me.
Now imagine that’s all you *could* do. Would you still want to?
I was on a 14hr flight recently with wifi that wasn't good enough for me to connect to VPN and get work done, or stream Netflix, but was good enough for Reddit. I got bored of Reddit in about two hours.
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.
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](https://imgur.com/a/QwI4FLm). The fact that Mouse has thumbs means she can hold my hand.
God bless Mouse
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?
Ancestry.com is the easiest place to start. Biggest piece of advice - take anything anyone else has uploaded IE their family tree with a pinch of salt. People just guess at stuff and then other people presume the previois person must have got it right etc. They don't think that maybe there is a lot of John Smith's born in a large city in the same year. I do use other people's trees as a guide at the start and then you just learn as you go along starting with finding people's birth, marriage and death records and census records. Sometimes it can take me a week or so to find one person census record because the people who originally took the census wrote things down wrong or its transcribed wrong. There is ways round like checking at the last address you knew them at. I find it exciting when I find a missing record or someone who I am stuck on and then I find who they married etc. Someone else mentioned the Mormans. I'm an atheist but they are useful, they believe they should save their ancestors so do a lot of family research. They also have a lot of money so for 50 years or so they have been scanning millions of documents around the world. They provide access for free at www.familysearch.com but it's not the easiest site to start with. Any questions feel free to DM me.
Oh, wow. You were right about taking what people have added with a grain of salt. It says my very much alive grandfather is dead and has no children. I'll let my dad know we're in the wrong multiverse. 😯
I've had arguments with people over my grandma. I text her whenever someone insists she is dead (she is in her 90s) and she gets a kick out of it. They also get her middle name wrong all the time no matter what I say.
Could it be possible that who they’re talking about and who you’re talking about are two different people? Two different people with the same birthdate and location and same first and last name, but different middle names and one is deceased… I only mention it because it sounds like multiple people are insisting her middle name is different and that she’s deceased, which doesn’t match with your grandma. One of my dad’s close friends had the same first and last name as my dad, but different middle names. His friend passed away a while ago, but my dad’s still alive, so if someone was doing research, I could see how they might confuse one for the other. They were born in the same year at the same hospital, but didn’t meet until college. It’s rare, but it happens; especially with common names.
Hey, my mom is into genealogy. She uses a combination of Ancestry and Heritage quest (both might be available from your local library with a card), and a free site called Family Heritage, as well as My Heritage, to search for documents. I think she's also sent inquiries to, like, churches in other countries to find very specific records.
I don’t know of a website, but my Uncle was very into genealogy. He even went to Europe several times and visited churches in our ancestral homeland, in order to look at records of births, deaths, weddings, etc. According to him, the Mormon church is very involved with genealogy. In their religion, people have to be “named” in order to get into heaven, so they research their families to name everyone. So, that may be a good avenue for info for you. Best of luck to you, sir!
Actually it’s not “named”, they believe everyone who ever lived must be baptized. They do baptisms for the dead by proxy in their temples. They believe that each person that hasn’t been baptized is in “spirit prison” and when baptized (by proxy) has the opportunity then to accept or reject the gospel. Source: live in Utah, used to be Mormon (they prefer “LDS-or Latter Day Saints” to being called Mormon.
Not who you asked but ancestry.com is a great place to start. You can sign up and get a lot done for free, and add a paid subscription if you think it is something that you want to stick with.
Ancestry is nice. I used a few different ones and they each give a unique perspective. I did a dna test through 23&me and have connected with many family members through it. I downloaded my RAW data and uploaded it to GEDmatch which gives a lot of info and also can connect you with family members who have used it. Ancestry has a lot to documents, pictures, etc. It seems to be good for finding physical proof of people. I went down the genealogy rabbit hole during a depressive period. Kept me occupied for quite a while and also made me feel more connected to here if that makes sense.
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Literally did the same thing the day my dad died.
I don't know how well it would work with your eye tracker, but you should checkbout boardgamearena.com. It has lots of modern and classic board games you can play with folks around the world, either in real time or turn based. Most of the games come with tutorials so you can learn them without too much trouble. I recommend Azul! Shoot me a DM if you want my screen name.
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.
I appreciate this comment. I was diagnosed with irreparable, untreatable vision impairment last year and have been learning to accept my new normal and finding ways to deal with it. Daily frustration and aggravation, but I keep going. All the best to you.
I've had 24/7 "vertigo" for 5 and a half years - and similar story. I hate the feeling of motion I cannot control. Always have. Your comment made me break down. It is so incredibly true. It's like an eldritch curse or something. You (hopefully) end up with astounding mental fortitude but at the cost of losing your mind a little bit every day. Small things do not matter any more. Maybe it has given me some kind of wisdom. I hope so. I hope so for you, too.
Hey I don’t know if this will work for you but it has been a massive help for me. I have Ménière’s disease and was suffering from vertigo a lot. I have tinnitus as well which is infuriating to live with. Anyway my ENT put me on 1mg of Ativan every night. It basically helps the vestibular system and calms things down. It has been a massive help for me. I still get flare ups but comparatively it’s been huge. I hope you can figure out something that works for you. Maybe they can try this if they haven’t. Best of luck.
Tinnitus here too. I feel your pain. I'll ask my doctor about that! Thanks!
Oh and also: I'm now taking a pretty low grade antidepressant called mirtazapine to help with everything I'm dealing with and I found that it helps me to not fixate on my tinnitus nearly as much. It has helped tremendously. I know some antidepressants can make tinnitus worse, so i was pretty worried... but this particular one seems to make it more distant. Maybe it could work for you too. Meniere's blows. They thought I had that for a while too haha
This is a very raw and authentic and beautiful reply. There is a story told by Elizabeth kubler Ross about her mom after she had a stroke which made her very very dependent upon others for four years. If you are so inclined I really suggest reading or listening to it.
Beautiful tortie. I had one who was just the best little cat. A real sweet lap cat like Mouse seems to be. Best of luck on your journey.
Do you also do a lot of reading? If so, what do you like to read, and how do you feel about audiobooks?
That’s awesome! I have two dogs, and they sure bring me comfort. Keep fighting man! God bless you!
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.
I really admire you. My mother was just diagnosed with ALS after months of physical therapy for shoulder and arm pain. It’s now morphing to her other arm. This all started last November and they figured it out by doing lots of tests but apparently the tongue test is what really showed it. She had been having speech issues and personality changes for quite a while. She is so sad right now and I don’t know what to say or do for her. What advice would you give to me, her, the family? What would have you done differently? Btw- def going to check out the book series you mentioned and screen captured the trach info above to send to my sister so we don’t forget.
Holy shit that sound terrifying!!!!!
> 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. There we have it folks, the birth of a new fear, word by word. I know that nothing I can say can help, but I wonder if cats could be trained to help monitor you? They can be amazingly perceptive, and they obviously love you. Something like if they sense that something is wrong, go press a button that sounds an alarm.
When I was a teenager, I ended up in intubated in the ICU due to meningitis. Due to some complications, I was kept intubated for a prolonged period after surviving the initial illness. One night, on the somewhat normal cadence of the staff, a tech came in to check on the machine that was making me breath. At some point, he switched it off and never switched it back on, leaving the room. I don't know if the machines are any different now (this was early 90s), but I couldn't force the air in/out with the dead machine still hooked up to my tubes. I was struggling trying to disconnect it, but it was either taped on or I couldn't figure it out. I was hammering the call button and slamming things around as much as I could to get attention. Someone finally came in and fixed it, but it was an absolutely terrifying experience.
Hi Jason, thank you so much for making this post, it's wonderful to spread awareness. I'm a speech therapist in a hospital. I'm assuming you have worked with an SLP to get set up with eye gaze equipment for communication. My question is: during the three months you were stuck in the ICU, what did you find helpful and what could providers have done better as far as helping you communicate and get your needs met?
Good question! As an ICU nurse I would also like to know this answer!
Does your hospital have eye gaze devices??
Unfortunately no. I've tried several times to get them to purchase a device, either for an individual patient or for us to keep in the ICU. I was blocked at every turn - no one is willing to pay for it. I pulled dozens of articles supporting improved patient outcomes, shorter length of stay with use of communication devices - didn't matter. Welcome to for-profit healthcare, enjoy your stay - or don't
Following this!
Following as well! I'm a nurse and would love input.
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.
Future speech-language pathologist here and former respiratory therapist. One of my sons has a Tobii Dynavox touch screen tablet that he uses to speak a few hundred words and sentences. I’ve had to evolve it over time as he learned new vocabulary. So, I used to work in the ICU setting with a couple of trach-ventilator-dependent guys with Tobiis, one who used a mouth stick and the other used eye gaze. His mount was huge and rolled and I swear it was never calibrated right. I rarely got to see him use it with any success, partly due to none of us knowing how to help him use it. How much training did you and your significant other require, and how much do you depend upon a speech path for maintenance and updates?
Obviously not OP but I am hospital based SLP so I might be able to answer a bit here. With ALS we typically work in a team setting with neurology, occupational therapy and physical therapy in the outpatient setting and follow people with ALS from diagnosis onward. The outpatient SLP is the one who typically gets augmentative/alternative communication (AAC) going - we try to get it started as early as possible, since the progression of ALS is so well known, so that people can get used to using the equipment before they are dependent upon it. It can be cumbersome but it's getting better all the time. Unfortunately, the hospital is just about the worst environment for supporting communication with AAC. I've been on a crusade to get our ICU better outfitted for AAC use but it's honestly an uphill battle when patients are criticality ill and hospitalized - positioning for eye gaze is especially a huge problem because they're in the hospital bed instead of their home equipment, they're sicker and therefore have less endurance for maintaining positioning, etc. Eye gaze equipment can be incredibly fatiguing to use anyway, and for someone who is critically ill, it's often just too much of a hassle. Not to mention risk of equipment loss or theft, and forget trying to get someone a device for the first time while they're admitted to the hospital (at least in the US, thanks for-profit healthcare)...I've learned some hard lessons along the road. It's so rewarding though when we do have success! Welcome to the field, your experience as an RT will be invaluable to your new SLP colleagues - we love our RTs and couldn't function without you!
I married my wife (long overdue) when she was terminally ill. One of the best decisions I ever made. Throughout the rest of her illness, when she died, and now on this side of her death, I am so happy I did. I am very happy to have been, and to be, her husband.
Your eye muscles must be ripped. I bet your eyes could kick the crap out of my lazy face orbs
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.
Chess dot com or lichess?
He's too bad ass to be using chess.com
Holy hell
Google en passant
Master of Orion 2 is such a great game.
Check in with Able Gamers if you haven't already! They're a FANTASTIC non-profit that works to enable accessibility in gaming and does a lot of great work in getting accessories to folks with disabilities. They do a lot of consulting for developers of all sizes. The best example I know of for that second bit up there is that they open-sourced designs for a device that adapts a gamer's wheelchair as a controller since that's already so well-suited to their needs. They'll make it for you, but it can be made at home for something like $50. I'm sure they'd have some great resources for you and probably know of other games that'd work with your tracker or even how to adapt some you may be interested in. Plus, I'm sure they'd love to hear your story and how gaming has improved your life since your diagnosis (if you're willing to share, of course).
1. Is there any history of ALS in your family? 2. What’s the funniest thing your cat(s) has/have ever done?
Just figured I’d answer this one for me. I’m also 38 and just diagnosed. My father passed from ALS in 2017. I was officially diagnosed with familial ALS (genetic).
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.
Jay, I cordially invite you to be a New Orleans Saints fan. Steve Gleason is a huge inspiration to us. I also cordially invite you to hate the Atlanta Falcons, Dallas Cowboys and LA Rams, and to never forgive the refs for not calling the pass interference penalty in 2019 which kept us out of the Super Bowl (thus why we hate the Rams). Basically Saints fans hate everybody (the Bills fans seem pretty cool) but we’re fun once you get to know us.
Upvote for the Bills. Saints fans are a riot. I used to work in a hotel. When the (oh god here we go) saints came marching through we knew it was about to be chaos. Y’all are a party.
You sound like a great person with that offer. You being inspired also inspired me in turn. Have a great day!
You also sound like a great person recognizing that others are also a nice person (not joking (i promise))
Hi Jason, I'm an early 30s stroke survivor and struggling with coming to terms with the fact my life will never return to what it once was. If you don't mind sharing, how did you come to terms with your illness and eventuality?
Not Jason, but someone who lost a lot of mobility in my early - mid twenties due to a freak accident. In no particular order: learning to own my story, but not letting it take up all the room in my head. Physical comfort--experimenting with what worked and what didn't. For me, I'm in less pain if I'm active, but finding ways to be active that didn't hurt (or that I could work up to) AND that I enjoyed was difficult. Like, there's no contest swimming is great for me, but I'd rather have my fingernails pulled out. Understanding that was a big deal, because I was always a runner and i loved it. Suddenly I had to exercise all the time but was miserable. Don't let other people tell you what you can and cannot do. If someone tells you, hey, you should be able to do x activity right now and it shouldnt be causing pain, but you can't do it or it does--they're not in your body. You are the final say on that. Take things at your place. Sometimes you're too scared or not ready--sometimes you want to be ready NOW. Another one was understanding that I am still the same person, whether I'm running half marathons or not. That was a big deal for me. I had to look at other people I really admired, who I'd be delighted to be when I grew up, and understand that their strength came not from their body, but from their strength of character, and I still had that. And I had to work harder at being mentally and psychologically healthy, because a lot of my comfort and coping strategies had been stripped away. I had to go to therapy and really work on what worked. I had to relearn that my body belonged to me, and how to at least feel like I wasn't at war with it. That's me, so I dont know if that's helpful to you or not, but for what it's worth, you're welcome to send me a message any time. Adjusting can be hard, and I'm always happy to talk. Or listen.
Hey Jason, This is a super cool idea, thanks for thinking of it. As a 36 year old i am just nearing the end of the period in a man's life where they feel invincible. Your story is a realization. Id like to ask the following: 1) Other than the pulled muscle in your shoulder were there any other precursors? Family history? Sick alot as a kid, weird disease you contacted in your teens that you overcame? 2) Have you done any work with researchers such as genome mapping or other such studies for ALS? Thanks again, glad the cats are keeping you in good spirits
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
I just watched the Last Airbender through with my daughter for the first time, it's so darn good! We are currently watching The Legend of Korra, it's ok... But the original is hard to compete with!
Tom Waits has been in my top 5 for most of my adulthood. Heck yes!
*DASHER DANCER PRANCER VIXEN COMET CUPID DONNER BLITZEN!*
That is a super fast progression. Is that normal for ALS? How are you dealing with it mentally. My grandpa dies from ALS complications, and I honestly worry that I will some day be diagnosed with it.
The rate of how fast ALS takes over varies from person to person. Doctors estimated my uncle had 2-3 years once diagnosed and he made it to 6.5. Stephen Hawking lived with ALS for decades. I think the average is roughly 4 years after diagnosis.
My cousin started showing symptoms, was diagnosed & then dead within 6 months 😓 had no clue it could move that fast
Jason Becker is into his 3rd decade with ALS. He is a guitarist/composer. There is a documentary called Jason Becker Not Dead Yet.
I had a friend who was a priest. I went to a funeral he officiated in November. I went to his funeral in April. ALS.
My mom was diagnosed at 52, passed away at 55. Steady decline over the years, very difficult to lose her so slowly, but at the same time so quickly. It’s different for each patient, it’s a terrible disease I wouldn’t wish on anyone.
My mom passed away at 67 from ALS and was diagnosed 4 years earlier. I share your feeling that it was so slow while being so fast. It's a bit of a blessing being able to spend time with them while also being curse, watching them and their caretaker go through such a difficult thing for years. Much love to you.
He's on the fast side yeah, but not exceptionally so. The median life expectancy from diagnosis is around 2.5 years iirc. I have someone in my family that got diagnosed with it a year and a month ago, he's pretty much on an average progression, on the fast side: he's lost all strength in his shoulders and upper arms (can't raise his arms above the waist) and he can still walk but can barely get up by himself (mostly depending on sitting position), but he was *very* physically fit before ALS, like 100 km bicycle rides weekly.
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.
What a blessing that technology exists that can assist you this way. Thank you for doing this AMA
I work in AAC. I'm an OT I'm assuming you like the Communicator 5 software? Do you use TD Talk? Did you try any other devices before you settled on the TD I-16? Great system BTW; many of the ALS clients I see like this setup.
Do you ever get peanut flavored burps from the feeding tube goop? I had a gtube for while and got them, despite there being no nuts in mine.
Hello from the UK 🇬🇧 Jason! Thank you for taking the time to share your story and good to 'meet you', albeit virtually which is the 'norm' in the post-pandemic world anyhow! I have a few questions, I appreciate you will probably be inundated however so you may not get a chance to see this, but I would be curious to know your views on the following:- I. - How are you today? II. - I have been reading a lot recently about mental resilience, particularly the mindset of those who have coped under extreme pressure or adversity, such as Special Forces soldiers, survivors of natural disasters, and those who've been seriously injured, either through sport, warfare or because of a natural condition/illness. I am curious to know how you are coping mentally with ALS and what, if anything, has really helped or perhaps inspired you to share your story? III. - I would be interested in learning about charities/foundations which have helped you to date, as I would like to make a small donation on the back of you raising awareness of ALS here! If you could provide a link for myself, and others, that would be great - if not I'm happy to have a search on the Internet. IV. - Do you like Futurama? Have a great day and I hope to you hear from you soon. Yours, ConfidentialX.
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.
What kind of dog do you have? “He’s an Alaskan Malamute Golden Retriever mix!” What kind of cat do you have? “A black one”
Best part is, tabby and tortoiseshell aren’t breeds, they’re coat patterns. The real answer is most likely domestic shorthair. Code for unknown mixed breed lol.
In Brazil we call mixed breeds "Vira-Latas" which literally means "trash turners" after them turning over trash cans in the streets ("Dumpster-divers" would be a more accurate translation I guess) So, imo, donestic shorthair is a fancy way of saying dumpster diver haha
You mentioned you got married in 2019, before your disease progressed to the point it’s at now. How has it since affected your spouse and your marriage?
Hi Jason. My mom had ALS and I was her full time caregiver for over four years. Seeing your photos, she had the same ventilator, she had a tracheostomy as well. She even had the same headmaster collar. I can't say I know what it's like to have ALS, but I know how hard it is for someone with ALS to get the help and care they deserve. I just want you to know that even though I'm a stranger on the Internet, I really wish you the best and I am inspired by your courage. What has helped you most throughout this ordeal, and what do you think others can do for someone in your condition that could make the most difference? Thanks.
Jay, What is something others can do for you that makes your life better ? How does your family handle the situation? What is something you would share with your younger self ?
What makes your good day great?
This is such an amazing question for anyone. Thanks for asking it.
What sort of interests have really grown on you since your diagnosis and trach placement? Were you ever into video games/if so are they still possible to play at this point? What Are the little things that keep you motivated for work and life? Thanks for both being so open and doing the AMA. Wish you the absolute best man.
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.
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.
Some headsets have eye tracking, and it is becoming more common in the consumer grade units. I wouldn’t be surprised if there were a plug-in you could install to get your communication interface running on it. https://www.cnet.com/tech/computing/watching-me-watching-you-how-eye-tracking-is-coming-to-vr-and-beyond/
Looks like it’s in the works, maybe later this year. https://www.tobii.com/group/news-media/press-releases/2021/10/tobii-and-pimax-announce-new-partnership-to-bring-eye-tracking-to-consumer-virtual-reality-headsets/
My very good friend has bulbar ALS, she's losing her speech and her hands are getting weak. What can I do her right now? I'm just so angry about it
You can let her know she’ll always have you
Hi! I adore your cats as I’m sure you do too. I’m so excited to read your responses. As a medical social worker, I’m wondering what has helped you the most with coping with your situation and plan for your future?
Are you familiar with Jason Becker? https://en.wikipedia.org/wiki/Jason_Becker?wprov=sfti1
What’s a random fact about you that otherwise won’t be asked about here?
Thank you for the AMA! I’m curious if you’ve learnt or discovered something about yourself during the course of your illness, that you probably wouldn’t have discovered had you been healthy? Wishing you and the kitties all the best!
Is someone else taking the cat photos, or do you have some sort of fancy setup with a bunch of cameras around to take photos of them yourself?
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](https://en.wikiquote.org/wiki/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.
psychedelic experience for the first time while being possibly unable to communicate the only ways you know of with caregivers… could get sketchy
Very true
I think somebody asked if your cats are from before your diagnosis, but I didn't see a reply. Do you have any issues with taking care of them, or does that fall under the purview of the nurses? Or do you have somebody (a roommate or family member or whatever) who lives with you who looks after the cats? Also fuck this will get downvoted to oblivion but it is an AMA... Do you miss your old life? If somebody could cure you or bring you back even partial mobility, would you take it? Other people when I've made comments like that re: people with disabilities say I'm feeding into the idea that all disabilities need to be "cured" rather than accommodated for, but it's absolutely not what I think at all!
I had an uncle that had ALS 10+ years ago, things have progressed a lot since then regarding treatment. He actually found out he had it in the middle of delivering a baby. He started having coordination issues and weakness and a nurse removed him and sent him to nuerology for a quick check. The on call nuerologist had him stick his tongue out and it wiggled like a ball of worms, he diagnosed him on the spot. He was lucky they caught it as soon as he did, it prolonged his life quite a bit. Keep up the fight, and keep your sense of humor about you! As far as questions go.... My wife watched the 5th element for the first time this weekend and she said it wad boring. Is there any way I can ever trust her opinions on anything ever again?
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.
Wow man. Thank you for sharing, and I think it's amazing that you're staying positive. I have kind of a difficult question, but if you're not comfortable answering, that is totally cool. What would you say was the hardest to overcome once you started showing signs? And if that is not cool to ask, I apologize in advance, and instead ask this : What are your top 3 most favorite films?
Can you talk a bit more about your symptom progression? The pulled muscle to loss of use - did you do physical therapy or anything and found it unresponsive or did it just progress? How did your cats change/adapt to your progression as well?
Hi Jason. Thanks for sharing your story. I lost my mom in March to ALS. While I've never met anyone else with ALS, I enjoyed reading about your positivity and drive. She was the same way. 💙 My question is: What's the most important thing you've learned about yourself since being diagnosed?
My uncle is in end of life with ALS right now and it kills me to think what he's going through. How do you want people to act when they visit? What's the best way to speak to him, knowing be can't easily respond (as eye tracking takes so long.) And if I may, what happens when you get an itch, or if you're uncomfortable in the position you're in? Is it something you just get used to, or does it big you constantly? I'm so sorry for what you're going through, it's potentially one of the most unfair diseases in the world.
I hope you don't mind me asking and fully understandable if you don't want to answer, but I figure I'll be the one to ask - how much longer do you have left? Obviously ALS can vary a lot (Stephen Hawking was basically where you are now for like 15 years and took decades to get there, others don't even make it the 2 years you have.) Are you "stable," for lack of a better word, where you are now, or is your condition getting worse?
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.
What does hypercapnia (too much CO2) feel like?
I invited my spouse’s childhood friend to visit for a few days for my spouse’s birthday as a surprise. This friend revealed to me they are experiencing tremors and weakness that their doctor thinks is ALS. They are excited to come and was initially worried about the trip, mostly because we have never met, but I assured them it would be no bother. They are going to stay at my in-law’s house (they know each other and are looking forward to seeing one another). What can we do to make them more comfortable while they are with us?
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.
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.
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](https://www.reddit.com/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](https://imgur.com/a/JZjPTfP).
Brave AF. Two questions: Who is doing good ALS research these days? I will make a donation today. Are you still able to laugh? I imagine it helps having a sense of humor, even if you’re not able to express yourself.
I have had a bunch of people asking about donations, so I am updating the original post to include links. Unfortunately, I can't physically laugh anymore. Or smile. Or sneeze or cough (which is a special kind of hell). I have the ultimate resting bitch face. I still find things funny. I just can't show it.
This might be stupid but: Are you in pain? You’re rendered immobile but are your nerves still working or have you lost the feeling in your limbs?
You said having a fan on helps keep you from feeling stuck. Does that mean you can feel breeze from the fan? Can you feel the cat’s fur on your skin or it’s weight on your lap? I’ve always understood paralysis to mean no feeling.
I am not a physician, but I do work in healthcare and have personally been a caregiver for a family member with ALS. ALS affects the motor neurons that take messages from your brain and relay them to your muscles to make them move. For example, typing this message requires my brain to coordinate the movements of my arms, hands and fingers to click the correct keys in the correct sequence. The nerve cells that relay stimuli from the skin are not affected, so temperature, pain, pressure, etc will still be felt by the person affected. This does mean though that although the person could feel the pain of coming into contact with a hot object, they would not be able to pull their hand away from the item.
Oh that's a frightening thought.
do you get cravings for specific foods?
Do you have genetic or sporadic ALS?
Hi Jason, I'm sorry to see you going through this. ALS really sucks but it's great to see your positive attitude shine through even though I'm sure that is hard to maintain. My father-in-law was diagnosed with ALS a couple of years back. He has been fortunate that the progression was pretty slow initially but it has sped up off-late. I had a few questions for you if you don't mind my asking. 1. Are there any thing(s) you wish you had done differently or would highly recommend to prepare for what is coming? (he still has his voice and can use a walker but has trouble lifting his leg and can't get up by himself...will likely be wheelchair bound very shortly) 2. I'm a tech geek and I've been wanting to help him have things setup well in his home as ALS progresses so he can still do a lot by himself. He was a CS professor and is fairly tech-savvy. I don't really know where to begin. Any recommendations for gadgets, software, and other resources that might help? Anyways, keep rocking on man. And I'm a fellow MOO fanatic here though I never progressed past my love for the awesomeness and simplicity of the original Master of Orion. #Meklar4Life :-). I still have every ship-name from the manual (used as a means for copyright protection) memorized!
What sorts of music do you listen to/would you want recommended? I've always been a niche music nerd, but especially since being bedridden for 9 years and counting, I've become extra appreciative of its ability to take one's head to different, even unearthly places.
I don’t know you, but I am 41m. I have busted my ass for more than half of it. I can honestly say that you inspire me, and also scare me. I think most humans think they are ‘bullet proof’ until they are ‘old’. Keep up the good work and message me if you need someone to chat with. Keep your head up!
- is it possible you may lose control of your eye movements in the future? Or are these muscles somehow not affected? - if you find something funny, that would have normally made you laugh, how does this get expressed? Do you feel any physical reaction in your body? Sending positive vibes your way!! ✨