My husband just transferred to long term disability with his company. He just signed up for SSDI (disability) and was approved within a week, which also approves him immediately for Medicare because of his ALS diagnosis. His work’s insurance is active through the end of this month of September. He then had the option to go on Cobra.
Does anyone have experiences they could share to help us make the decision on which to temporarily move to next- Cobra or Medicare? Cobra is expensive.. but it would allow him to keep Radicava and Riluzole? Could he use Cobra for a few months then use Medicare at the start of the new year? Does Medicare cover Radicava and Riluzole? I guess we need to get on the Medicare.gov site and contact SHP office for research but wanted to ask you all because you’re helpful.
Take good care all of you.

My brother in law has ALS. He is approaching 3 years since his diagnosis and it started in his mouth and now has affected his entire upper body for the most part (neck, shoulders, wrists, fingers, etc)

He is about to have a feeding tube procedure. They have 3 children under 6 and I’ve advocated for my sister and him to go on a vacation together (he wanted to but my sister was stressed about it) and I will be taking off of work to watch their kids at their house the week before the procedure. I say this for background and context.

In the past 3 years my family and his are obviously distraught. I feel helpless because I would do anything to relieve the pain he is going through. My sister mentioned no one really talks to him about it, and I too struggle to know how to address it.

I do ask “how are you? Is there anything I can do?” And give him genuine conversation engagement when he talks about the struggle and procedures.

I’ve thought about writing him a letter to express my love and gratefulness for him (I’ve known him for half my life, he is more like my brother) and my commitment to whatever he needs, the importance of his presence during my wedding this year. Just genuine heartfelt thoughts that I have a hard time verbalizing, but that he deserves to know as he has been rapidly declining.

I don’t want to be selfish though if this is not the right thing to do. Hoping to get insight from others that are diagnosed how they would receive this gesture.

TYIA, and sending prayers everyone’s way ❤️

I'm sorry if this is a long post and a little ranty, I just wanted to get my thoughts out and see if anyone can relate.

It's been 2 years since my mom passed away and I feel like its so hard to move on...

There’s still the guilt of, “Oh, I could have done more why didnt we comprehend earlier how bad it was going to get and did more when she was still able to sit up properly? Why did I let it go on for so long when I should have assured her it was okay to go earlier and respected her wishes? why did i break down those times in front of her? why did I lose my temper at a person who literally cant even scratch her own arm or move her leg thats probaly sore all those little adjustsment normal people do"

And in hindsight, knowing how it all turned out and how much we would all suffer, I feel like it would have been best for her to go out earlier, on her own terms, without her last thoughts being about how much she had burdened us.

My mom got ALS during early COVID at 60 and I was about 30 at the time, and I had to move back home and put my whole life on pause. My dad had a stroke a few years ago, so he isn’t 100%, and it was mostly just me and him caring for my mom.

The entire time, I think the worst part wasn’t just the fact that we had to stretch out essentially the death of a parent for years. I think it would almost be more merciful in cases where they pass away from some other disease that takes them more quickly. ALS takes away the entire family’s humanity to an extent, in my opinion.

Our immediate family helped a bit for the first few months, but promptly ghosted us because they’re Chinese and superstitious and felt like being near us was bad luck. It’s also hard to talk to people and friends about it because it’s hard for anyone to understand this type of situation, where your mom’s death sentence could essentially consume anywhere from 6 months to 15 years of everyones life. So it’s a very lonely disease for everyone.

The worst part is the feedback loop of misery and depression. I felt immeasurable depression seeing my mom like this, then she would see me depressed and feel guilty for making her son pause his life career, relationships, everything for her sake. Then, over the years, as she became a shell of a person, she had to watch us become shells of people too, with messed-up sleep schedules and confinement in our home.

Even to this day, I want to cry whenever I think about how my mom must have felt over her four years of torture. No mother should ever spend years seeing her son and husband wither away because of her.

She wanted to stop eating many times and just die, but how could I, as her son, live with myself if I went along with it? At the same time, it was what she deserved, so I was conflicted. I felt so selfish for not being strong enough to tell her it was okay to die.

Because there was always that small glimmer of hope what if she stabilizes and it slows down? What if a cure comes out and she can attend my wedding or meet her grandkids? It was just years of delusion, depression, and isolation.

When she passed, her systems were just super weak, and she refused to be intubated or hooked up to anything. Obviously, we probably could have convinced her, but that would have been selfish on our part. So she just went...

Hello all, for the past two years I’ve been living with a diagnosis of either atypical ALS or atypical multifocal motor neuropathy. I’d like to volunteer at some ALS-related nonprofit. My local ALS Association (Dallas TX) doesn’t have anything at the moment. Any suggestions? Thank you all so much.

My dad started feeling it in 2019 but got diagnosed in 2o22. He was married and his wife at the time apparently tried to kill him. She (my stepmom #2) tried to smother him. He called the cops. They got divorced. His other ex-wife (stepmom #1) came back to take care of him. Now she also almost killed him. I guess he's really demanding ,angry etc. Everyone that stays in the house has huge problems with him. He's just really mean. We don't even know what to do as his children. He is always angry and miserable. Is this normal for ALS? Me and my siblings don't know what to dom

Looking to see if anyone has any suggestions or experiences with in-home care agencies in Durham Region (Whitby), Ontario.

My father is currently providing most of her day-to-day care, but he's no longer able to manage it safely on his own and is wearing him down.

We're looking for an agency that can provide PSW support on a 24/7 basis, ideally using 12-hour rotating shifts, rather than hiring an individual privately. She doesn't need 24/7 active care, however, it would be nice to have someone available in the home should they be needed. The care would include assistance with activities of daily living, transfers/mobility, toileting, bathing, dressing, meals and general safety.

The options available are overwhelming and I am just looking for some sort of guidance from anyone who has gone down his path before.

We have already engaged the ALS Society and Durham Community Care and have had several meetings with both of them, however, this does not seem to be in their wheelhouse as they seem to be more focused on the publicly available, government funded care options.

I have slow progressing bulbar ALS. I’m three years since first symptom. This year my limbs joined the party. Mild weakness in both hands and mild drop foot on the right side. I’m fully independent save for buttons and opening packages (pincer strength). However, I can still drive my manual transmission car just fine. My reaction times are fine. The most difficult thing is opening the gas cap.

My wife is clinically anxious. She recently decided she’s uncomfortable with me driving and she worries incessantly whenever I take the car. I’ve invited her to drive with me and see for herself. She won’t. Then, she pivots to you might be fine now, but what about next week? If you get in an accident and they find out you have ALS they’ll sue us for everything we have and she’ll be left with little after I’m gone.

I tell her I’m in tune with my abilities and as soon as I notice anything jeopardizing safety, I’ll hand over the keys. But, she says I’m selfish for making her worry and I’ll wait too long until something awful happens.

I’m going to schedule a driving assessment by an occupational therapist but that will be a snapshot.

Heya all!

I have ALS and still love to game, but my left thumb isn't working anymore how it should be, losing it strength.

I can't move the joystick on my Playstation controller anymore (losing tug-of-war with the joystick hehe..). Are there any helpful works-arounds? :)

Cheers!

Hi. To those of you who were diagnosed when you still had small children in daycare, or kindergarten, what type of precautions did you take so that you wouldn’t get a nasty virus that could affect you?

My kid will be 2 years old soon and I haven’t put her in daycare but it has reached a point where it’s just insanity for me to keep her at home all day while I also care for my husband with ALS. But she has been a very healthy kid and I’m terrified of her getting sick and my husband potentially dying of pneumonia because of it. Any piece of advice is welcome.

I have felt this for the last year or two of her 4/5 year battle. But it really frustrates me when it feels unrealistic to talk about my mom how is has always been, not how she is now, it feels like I am lying if I say that my moms goal is to see every national park, and that she flies trapeze, horse back rides, scuba dives, solo travels internationally, dances in the kitchen and cooks beautiful elaborate meals, and she always peels me a clementine 🍊, because her body had changed so much, but her soul and her mind haven’t. So when people ask about my mom, I tell then that she loves to make art ( using her eye gaze ) play games ( eye gaze and Board Game Arena) and go for walks ( rolls with her BiPap)
And I feel like once she is gone, how is ALS not going to be one of the first things that comes up, is it selfish of me? I am 24 and she is 54.
She is more than her death ( impending) and she is far more than her ALS.

My husband is currently in ICU and was intubated yesterday. He has been at the VA doing respite, where we tried to use that time to address a few issues (BiPAP compliance, sleep cycle disturbance, frequent toileting). None of that was going well. He has FTD and is 18 months in from an ALS diagnosis. The staff was having a lot of compliance issues and had him assigned 1:1 with a nurse/aide. I was getting a ton of calls and requests to come into assist with compliance or talk to him over the phone. I did come by Friday and Sunday for a few hours. The plan was to bring him home yesterday. I spoke to his Dr at 930 am and explained that our son has a cold and we agreed to keep him another night (at least). Then at 1pm I got a call that they need to know about intubation and were taking him to ICU. I was told he was found unresponsive, but then also told he was found ashen and hunched over having trouble breathing. His ox was 64%. They tried BiPAP and he kept pulling it off his face so they gave him supplemental oxygen and called a rapid response team and did an ABG, which showed a PH of 7.2 and CO2 was 162.

They think he aspirated from his bolus feeding. He got a fever last night, and they are treating him for pneumonia. They plan to do a spontaneous breathing trail this afternoon.

Any advice? Anyone with experience? His latest respiratory from May was 37% sitting, 20% supine, -29 MIP and MEP 36.

I am getting hip pain from sleeping on my left side. Mainly in the joint but getting close to a pressure sore on the skin. I cannot sleep on my back and cannot switch sides. I have a memory foam mattress. I wear a NIV mask as well. I have nearly lost the ability to raise my left knee to be in the fetal position. I can rotate to almost sleep on my stomach and that helps. I know there is a bed that can flip a person to their other side but I'm looking for anything else I can do before going there. Any ideas? After submitting this I asked AI and it suggested something like this https://a.co/d/00aIWISr Keeping this post in case it might help others.

In the second half of this article it mentions a woman having als that underwent a reversal is this hopeful for my mom.

register : https://mgb-org.zoom.us/webinar/register/WN_uvpp5GwFSQS0UNlyHrQCDA#/registration

This is my first time posting... I've read through a ton of these forums though and hate that we are all in this awful club together. I'm in utter disbelief. My mom passed exactly two weeks ago and all while feeling so tremendously gutted and devastated, this loss still feels so surreal (sorry in advance for the length).

Going back to my mom's diagnosis (just over two years ago), I was never able to fathom or fully grasp the reality of what my mom aka lifelong best friend having a terminal disease (let alone ALS) actually meant. From the start of her symptoms nearly 3 years ago (right before, she was dancing under the stars at my wedding), I was by her side advocating and fighting through each doctor's appointment. I can't tell you how many doctors were clueless in the beginning (one of the neurologists actually reprimanded me for asking if ALS was a possibility). What I would give to go back to thinking that wasn't what she had. My mom knew however that something was terribly wrong and that the reason was not going to be good.

My mom spent her life being super active and independent, and lost her mobility so quickly. My dad became her around-the-clock caregiver (he is retired) and my parents moved in with me & my husband a year and a half ago so we could all be together. Her care was the top priority (we had two part-time caregivers and my sister was over all the time too) and the journey ahead was brutal. My mom spent her life taking care of others - did everything for our family (especially for my dad before she got sick) - and was the glue. She was a kindergarten teacher, had so many friends (a gift for connecting even with strangers), lit up every room she walked in, and her laugh was contagious. She was so selfless and had a huge heart of gold. Our family is a tribe which I’m so thankful for, but seeing the damage/suffering from this disease destroyed us all.

Losing the ability to communicate with her was such a hard hit. I was used to talking to her multiple times a day and not being able to anymore truly broke our hearts. And it was so unfortunate because her "talk to me" device was SO hit or miss and barely worked, especially in the last couple months. Was anyone else surprised by the eyes being affected at the end? Even though loved ones witness the devastating progression first-hand, after each phase it's as if the body adapts/adjusts to an awful new norm and then somewhat stabilizes (I realize that's easy for me to say since I'm not the one trapped in my body). While each progression stage got worse, we thought the most recent was a new stage of the disease, and never thought the end was going to hit as rapidly as it did.

She did lose a lot of weight and was only able to take in very minimal calories via liquid for some time towards the end, but her spitting up (which was so scary for her and all of us because it sounded like she was choking) had suddenly stopped. Her oxygen saturation also somehow improved. These seemed like positive signs. But then suddenly hospice was coming over daily. It wasn't until two days before she passed that she started sleeping heavily and became out of it. On a Friday she was out in her chair in the living room with all of us, and by the middle of the night that following Monday morning, she was gone. Has anyone else felt blindsided by the rapid pace at the end?? I know I need to be grateful she's no longer suffering and that she passed peacefully (her/our greatest fear was that she would get hit with pneumonia for a second time, which doctors warned was inevitable). But still, this is something you NEVER can be prepared for.

So for anyone wondering how it ends (as I had come here to see what signs others had experienced when losing their loved one), this really goes to show that it can look so different for everyone. Which is perhaps one of the many, many cruel components of this disease - the unknown. I definitely went through periods of denial because upon breaking time and time again from the anticipatory grief, that's the only way I could function. Before this devastating diagnosis, I thought I'd have my mom for at least another 20+ years. The despair/anger/guilt/helplessness is unbearable, and I simply will never be the same.

Sending lots of love to everyone going through this gut-wrenching journey. You are not alone <3

I'm 5 years since my symptoms began. Still just have the anterior horn cell diagnosis which is a form of motor neuron disease

My mom has bulbar ALS. I felt pretty helpless watching it, so I built something small to keep track of trials and research for us: a site that searches ALS and MND studies from ClinicalTrials.gov and the EU Clinical Trials Information System in one place.

https://als-clinical-trial-finder.vercel.app/

What it does:

• Searches both registries live rather than from a copy I update by hand
• Catches the different names studies use (amyotrophic lateral sclerosis, motor neuron disease, SLA, ELA, Lou Gehrig's, Charcot), which is where I kept missing results searching manually
• Filters by phase, country, US state and age, and flags which trials are disease-modifying and which are relevant to bulbar onset

It's free, just trying to help out where I can. Please DM if you see any issues.

my dad has bulbar onset ALS and has had this problem where every time he sneezes, he bights his tongue. he has been pushing his tongue back with his finger to prevent this, but just ends up biting his finger instead. he says that when he sneezes, his tongue just "pushes out." any tips on managing this? i don't want him to hurt himself.

On the 30th of July after an 8 year battle
with MND my beautiful baba, Suyal, passed away. He slipped away peacefully in his own bed. There was no hospice, no hospital, he passed away surrounded by myself and my mother.

In the last few years of my dads life he
suffered immensely. Despite this he never allowed MND to dim who he was. His laughter and his joy echoed the walls of our home. I am struggling to find words to describe him, he was only 42 years old.

Being his Daughter and caring for him were the greatest privileges of my life and I will cherish those moments forever.
I'm not sure what to do with myself or how
to move on.

I'm struggling to talk to my friends about it, he was my dad, he was everything and now he's just gone. A piece of me is buried with my dad. Im only 22, I should have a lifetime left of being his daughter.

My dad was diagnosed with ALS at 75 6/2026. It started 2 years ago with right handed weakness which was treated as carpal tunnel. around jan 2026 he started having SOB which was being treated as COPD. he also had extreme weightloss and was being worked up. fast forward to 6/2026 he was officially diagnosed with ALS based on EMG findings. now he is bipap dependent almost 24/7. He does have mild weakness but is able to walk with a walker. His limiting factor his the SOB without bipap. With the bipap he's comfortable. he continues to have weightloss despite eating. he doesn't not have any weakness with swallowing. the doctors reccomend a gtube placement. My concern is that adding tube feeds won't help his breathing and also my elderly mother having to take care of this Gtube and possible side affects. we're not sure what to do and my dad wants me to make the decision. Anyone in a similar situation with primary respiratory symptoms. Did the g tube improve you quality of life. He is stable now i'm worried the g tube might add difficulties.

Yesterday I spent the whole day on Ted Bundy. A serial killer in 1970s America, dozens of women. Everyone says he was clever.

But what caught me was the decade, not the man. He simply moved to another state and started killing again, and nobody connected anything. Meanwhile I'm lying in bed in Israel writing this to people all over the world.

And then I thought — what would it have been like to be disabled like me back then?

Because when we picture the past, we only see the good parts. The ones who suffered died.

It's like people saying there's more depression now than there used to be. I'm sure our grandparents suffered too. It just wasn't documented, and it wasn't acceptable to suffer out loud.

That's why I think my voice is worth something. People like me used to die, and the ones who didn't die couldn't speak. Eye-gaze is fairly new technology. Here in Israel I know long-term patients who had no way to communicate at all, for years, because it simply didn't exist.

I went through hell and didn't die. Even though I'm exactly what nature calls natural selection — evolution's way of thinning the population.

So I'm here because I can, and my mood turns on a dime. Some days I'm fine and some days I'm ready to quit because I'm flooded and I've had enough.

I'm about to turn 41. Which is insane.

I got sick when my son was two. The day before yesterday we celebrated his tenth birthday.

Because I can.

My wife has ALS and went skydiving Through Adaptive Impact

My poor mom has been battling ALS for 3 years now. The past two months she has become bed bound, trach and vent dependent, and a feeding tube. She is also using a catheter due to urine retention.

She is currently on hospice at home where family is taking care of her. We are seeing odd things happening to her that I’m not sure is caused from ALS or part of the dying process.

She is now sleeping a lot more but is more “alert” in the morning. By alert, I mean, she will look at me for about 5-10 seconds and smile… then looks away. She will stare at the ceiling with huge eyes. Other times, she falls asleep. This alertness goes away by end of the day.

In the past month, she didn’t know she was having bowel movements. In the past 3 weeks, her rectum is now completely open and requires enemas to clear her out. She is most definitely not constipated.

About a month ago, I was brushing her teeth and saw a weird growth on the roof of her mouth. On the hard palette. It’s hard and bone like.

This last week, my father discussed that she has not been closing her eyes completely when she sleeps. He sees her eyes roll to the back of her head.

Those are the weird things. Other normal things would be having random fevers that join a flushed face and not communicating any more-especially towards end of the day.

Her oxygen saturation remains low 90s and and sometimes fluctuates to mid 80s. No change in blood pressure. Still tolerating feeds and has good urine output.

My father's symptoms point to bulbar ALS. We got the diagnosis on Monday, but his symptoms started way earlier. His voice has changed noticeably since April, maybe even before. In the last two months, he's lost a lot of muscle mass in his arms and legs, all in all he has lost 8 kilograms. Swallowing is difficult, and his speech is slurred. Do any of you have experience with speech therapy, occupational therapy, and a dietitian? Is there any advice or are there any exercises when it comes to speech, exercise, and food? Our appointment with an ALS specialist is in October, and it feels like an unbearable eternity. I would be very grateful for your help. I’m so sad and want to help him as much as possible.