r/ALS

Found out that my brothers fast progressing ALS is familial. And he has three different genetic anomalies for ALS.

Did the math and my odds to have none of them and all three are 12.8 percent.

To have one or two is even higher chances

Russian roulette is like 16% and highly dangerous.

Been wrapping my mind around that today.

(I would never do Russian roulette!!!!)

Does anyone have experience getting an alternative communication device for someone with ALS *without* a visit from a speech language pathologist (SLP)?

I'm an adult child of a parent with ALS. My mom was diagnosed about a year ago and has progressed quickly. She lost her speech late last year and is starting to lose control of her right hand, the only thing that's left to communicate other than her eyes.

She's in Minnesota, and we're having a devil of a time getting a speech language pathologist to help. One actually visited her but was unable to explain(!) what was needed. I think what's happening is that SLPs are in very short supply in that state and elsewhere, and they're overwhelmed. It's been almost two months of disarray, miscommunication, and misunderstanding.

I'll keep trying to talk to an SLP and push that ahead. But does anybody have experience just skipping the line somehow?

I want to get a gift for someone close to me that has ALS.

They've had some issues holding glasses/drinking so I was thinking of getting an ALS cup & straw.

I was wondering if anyone had some recommendations or things they found really useful for someone recently diagnosed with ALS.

Thank you.

Some days, some moments, are better than others when trying to get through the days when seeing my husband lose his ability to do the things he used to enjoy. Or even needs to do- harder to shower, barely walk. I tell myself, “It could be worse” because it could be (and probably will be), then I try to reason how is that even a bar to set for living life. I’m just trying to stay in today and not let my mind wander to the future. Some days I think maybe he’ll not have to endure some of the things that are later stage with ALS. Maybe this is magical thinking and a coping mechanisms for me right now because of the fear of days ahead. Are there some stories where PALS don’t have to endure such bad things in the end?
I tell myself “live for today, not the fears of tomorrow” but some days the reality sets in a little harder than I want.

Last August my mom was diagnosed with bulbar ALS after a bout with facial paralysis and some trouble with speaking. The symptoms started a month prior to the official diagnosis. By September she was heavily slurring words and having to work much harder to talk. By thanksgiving she could no longer talk. In January she started having laryngeal spasms and choking fits where she couldn’t breathe, and was in and out of the hospital every week. they gave her a medication to help and it did. In March she had to get a feeding tube placed and has since been losing a lot of weight, like 50lbs and now only weighs 100lbs at 5’5. She has progressively grown weaker during the last few months and gets tired very easily. A few weeks ago the choking fits started again even with the medication and Her ability to cough (like the doctor told her to do when this is happening) is extremely strained now. She’s still able to move around and do stuff but gets really tired after a few minutes. Sorry for the long story, I guess I’m just wondering how much longer I might get with her. I know it can be difficult to tell but if someone has a similar timeline and can give me a guess or idea I’d appreciate it.

My Mother was diagnosed last year and yesterday this horrible disease took her. I do find solace in the fact that she is no longer trapped in her body and suffering. Wherever she is, she can breathe on her own, eat what she wants, sing as loud as she wants, walk, run, dance, and be free.

2.6 years living with this damn disease, and everyone around me is burnt out. I think I’m depressed too, I don’t feel like doing anything, just lying in bed.

My mum seems to be in the end stage now. She only sleeps about 4 hours a night and chokes often. The doctor said she has just a few months left. I’m not the primary or secondary caregiver, but I eventually quit my job because the toxic environment was made worse by the constant lack of sleep. She presses her bell at odd hours in the night, and since I’m the only light sleeper, I’m always the one jolted awake. Sometimes I wish I could be like my siblings who just live their lives, and don’t have to be affected by this disease.

It’s so stressful because the alarm is so loud, and I have to wait to see if anyone else is coming to check on her. Once, she almost choked to death when the primary caregiver didn’t wake up, I had to rush in.

Now I feel irritable, depressed, always on edge, and like I’ve lost all my ambitions when my life should just be starting (I’m in my early 20s, getting married soon, just graduated from university). Every time the alarm blares, it feels like I’m getting heart palpitations. I’m angry at having to go through this grieving process again, and guilty for wishing she would just pass peacefully in her sleep.

Anyone relate? :")

Just needing to confide as I am still in a lot of shock and very emotional.

My ex, who I still love very much, moved back to her home country 8 months ago and our relationship broke down around that time.

In the months since then we have stayed in touch (even though it’s been emotionally very painful for us both but we got through the worst of that and are still close).

She is 41 and has developed in the last 6 months or so symptoms that have just today been narrowed down to either ALS or Multifocal Motor Neuropathy.

I am struggling to wrap my head around it and I am so scared of what the future might bring. I keep trying to grapple with all of the possible scenarios and I just can’t process it all and more than anything I am so worried and heartbroken.

I’m just so scared.

If anyone reading this cares to pray for her or offer maybe any words of wisdom or prayers for all that’s ahead, that would mean the world to me.

I am 2 years past Bulbar Onset diagnosis and a few days ago my stomach started cramping so badly. And a cat of mine jumped onto a lower part of my stomach and I screamed in pain.

Is this an ALS sympton? (Never had this issue before ALS.

Location-Punjab , India
My mother was diagnosed with als in januaury 2019 (45y/o) after symptoms in late 2018 , those symptoms were heavyness in her left leg and she was not able to properly walk with that. After that on december 2018 she fell down and it progressed rapidly following swelling on her left leg.
You can ask more about treatments we did for her as this post is only meant for how it ended.
June 2026 , she had trouble breathing , saturation went low and we knew it was phelgm stuck in her throat , at first we thought putting her on oxygen might help as we had a oxygen concentrator but idk what god wanted the plug was loose and we thought it was not working.
Tensed us rushed her to hospital , her sp02 was 26 , she was unconscious , she was intubated with a large pipe in her mouth.
She was like this for 4 days , on 5th day we went to a better hospital and doctors did tracheostomy followed by bronchoscopy to remove the mucus plug.
It was removed and we arranged a full ICU setup in home including 2 caregivers and everything needed.
Those caregivers had no experience because they lied and told us they were experts in managning those patients.
First night at home went well but the next day we again rushed her to the hospital because sp02 was declining again, went therr and they suctioned and all , replaced tubes and she went well.
They inserted centerline , regular injections , she was in a lot of pain but still didn’t let us worry about her and told us false things like she wasn’t suffering.
Her lungs started to white out again , fluids around lungs and severe weakness.
The night before she passed on 9th july I went to her and made her confortable to sleep , she blinked her eyes (our communication method that means yes)and I went outside because we can only stay for 2 hours in 24 hours.

We got a call next morning 5am to come fast , we went and they were giving her cpr.

Doctors said heart rate suddenly felled. I don’t know if it is true , I don’t know if she suffered , I don’t know that if she was aware of dying.Please share your exoeriences on how it ended. Is it usually heart beat drip or do patients suffer.

One Impirtant thing
We never told her that she will die because of this disease.
That went very well for her and us as well because she lived without that stain.
Ask me for any information

My close friend's mom has ALS, and I'm wondering if there are any impactful or overlooked ways I can make things a little easier on them. It's just the two of them, and I know that a lot of her time and energy goes to caring for her mom, so I would love to help out even a little bit in any way I can. I would love to hear some people's perspectives on things they wish they had, or that I can do for her/her mom/both of them.

I'm happy to help clean, drive places, make meals, etc. On that note, I know her mom is starting to have trouble eating, so if there are any suggestions for things to keep in mind or meals that would be easier for her to eat, I would appreciate that!

Friend of mine just got the informed consent paperwork for SPG302 (now called "Tazbentetol"). The mechanism of action seems really neat in theory but I am wondering if anybody has had any experience on this drug and what your anecdotal evidence is about its effectiveness/lack thereof?

When I read through everything it seems like it's shown a lot of promise in the Alzheimer's space, but obviously that doesn't translate to ALS because, well, those aren't the same thing. I'd love to know if it's been safe anecdotally and what effect, if any, it has had on progression. Thank you in advance.

So many mixed emotions tonight. Back in May when my mom was diagnosed, we decided to take one last mother/daughter adventure together while we still could. At that point she could still walk mostly unassisted and was still overall functioning pretty well. We booked an Alaskan cruise because she wanted to go back one more time.

My mom has been cruising Alaska, mostly on Princess, for about 25 years. These would be her sister trips with my aunt because my dad hates the cold. They both achieved elite status from how many times they cruised. My aunt stopped cruising due to her health a few years back. Four years ago we did our first mother/daughter cruise, which was to Alaska, since my mom needed a new Alaksa buddy and was really excited to show me all these places she loved. We decided to stop buying physical gifts for each other and just do mother/daughter trips instead. We did one of our trips just this past January. That one was a basic California coastal cruise to San Francisco and Ensenada. We picked it because we could drive to the port instead of fly and we just wanted to spend time together. We were looking forward to many more years of these.

Previously we had gone on some awesome Yosemite adventures together, since my dad refuses to do the drive into Yosemite, including one where we wound up taking this really long epic hike and saw a bear. It was a whole thing.

We left for this final trip on the 7th and there was so much more to consider with how far she'd progressed. She was fully reliant on her walker, and several times her legs were just so tired we put it in "wheelchair mode" so I could push her around. I was definitely a disabled companion throughout the 9 days we were gone.

It's so hard to see how much she's declined since we first had an inkling that something was going on back in January. When we disembarked yesterday my mom had to do some walking but kept tripping over her feet because she couldn't get one of her legs up high enough most steps. It's been so hard to see my previously active mother struggle to walk, talk, eat, and just do basic things. She wanted so much to stroll around her favorite Alaskan towns one more time. We accomplished this, but she was just so worn out. I could tell she wanted to do more in each port, but even in "wheelchair mode" with me pushing her she just couldn't. My aunt was asking me on Friday night over text if I'd seen decline in the week we'd been gone because she thought she noticed more decline in the two video calls we'd had and I said yes, I absolutely had.

My mom celebrated her 78th birthday on this cruise and I did everything possible to make it as amazing as possible. I arranged things with our dining room staff to spoil her, including a conversation about what sort of dessert she could still eat with her swallowing issues and this strange problem she's having with her throat burning. I did other sneaky things like bring decorations to deck our stateroom out and upgrade our airline flights to better seats. I bumped us up to first class for our final flight on the way home since that's something my mom had never done before.

We chose joy the whole trip and decided not to talk about all the hard stuff. We mentioned it in passing here and there, but we really focused on spending 9 days creating more memories together that I can keep with me now and after she's gone. We'll go back to some of the hard stuff in the next couple weeks, because we're at a point where some decisions need to be finalized and she needs to get some paperwork started with her doctor. Her mind is definitely not as sharp, though it's nowhere nearly as atrophied as her body has become.

I'm so grateful that we had this time together, just the two of us. And Alaska decided to love us because we had perfect weather the entire time. Not one drop of rain and it even got nice and warm a couple of the days. Our time sailing through the Hubbard Glacier area and Glacier Bay National Park could not have been more perfect. I got a fun picture of my mom in front of the Margerie glacier. Same name, different spelling, and not something she or my aunt had thought of during their previous sailings.

But I can't believe our travels are over. I can't believe my mom will never set foot on a Princess cruise ship again or take another plane trip. I can't believe she'll never have a blow-out birthday celebration again. If she's still around next year, she won't be able to enjoy her birthday like this year. Not with her rate of decline or the hard line she has on what counts as a quality life. I'm just glad I was able to put all the details together for her to make this trip so special because she kept telling me how perfect it was, how this was her best birthday ever, and how much she appreciated all the time I put into every last thing including mobility assistance and stuff. I told her I appreciated her and that I was happy to help spoil her. Though, she spoiled me, too, because a good portion of the trip she refused to let me pay for. Thankfully we booked everything under my accounts so I was able to go in and be evil and pay for upgrades without her knowing.

I don't know what the point of this rambly post is. I guess just to ramble to people who get it. People who know how awful watching this disease is and how incredibly unfair it is to know when things are the last time because this disease has taken so much.

Thanks for reading and letting me ramble.

I’m so devastated and scared!

After a decade long battle of ALS , my father has passed away at the age of 46. He fought valiantly,
with a lion heart, and dauntless courage facing this disease one day at a time. To me, he is the closest thing a human being could get to a real life super hero. What he endured throughout the years , all the mental and physical pain, I could not even comprehend the extent of all the suffering he went through. The only thing that eases my heart, is that he isn’t going through all this pain and suffering, and now he is in a better place watching over me , my little brother , my mother and all of us.

My father being diagnosed 10 years ago, I was extremely young about 11 years old. By his side, I matured and aged through, elementary school , high school and currently in college. I am beyond lucky to have experienced the man who my father was before ALS, not to say that I don’t have fond memories with him during this battle.

He taught me how to ride a bike in the parking lot waiting for my mom to finish work. We watched countless tv shows , cartoons, movies , and anime together. I remember the first song I ever fully memorized to sing with my dad on the way to daycare “I’ll be there for you” - Bon Jovi. He also was a music head , he listened to every single type of music genre’s you could imagine , from pop to heavy metal , rap , R&b, alternative old classics he introduced me to just about everything.

Probably one of the best moments was when I was about 5 years old I remember one of the tires gave out while driving and we pulled over, and I asked my dad “how come you are not asking anyone for help” he just said watch me son , and he changed the tire all by himself. I just remember being in such awe, and astonishment of the feat he just accomplished, he had an answer for everything. The type of individual that could flip any bad situation 180 degrees.

He taught me how to play basketball and volleyball, how to fight , how to love , how to be a good human being. I can go on and on , I just wanted to paint the picture for everyone what type of individual my father is. He was truly the best Dad ever.

One thing is, I hate myself for showing any type of anger towards him all these years. Growing up, I became one of the main caregivers of my dad, and as humans we are not perfect. There were moments where we had arguments and even recently. I cannot express this enough but to anyone with family member or a friend going through ALS please be patient , be extremely patient with them , for what they are going through is so complex it’s truly a mental and physical battle everyday. Please whenever you have a chance , please tell whoever you love , that you love them , please give them a hug , and please cherish all the time you have with them, because no matter what, I can tell you that it was never enough for me, and I wish I could of done it more often even though I told him everyday. I gave him kisses and hugs everyday. This wasn’t enough for me. Because I can’t do it anymore.

I kindly ask everyone who is reading this to keep my father in your prayers. His name is Michael. My wish is that he will always be remembered, that his legacy will never be forgotten. Michael fought ALS with all his soul , with all his strength, with all of his might, with tenacity and grit.

To my father.

The best Dad in the whole entire universe.

I love you forever.

My Superhero forever.

Rest now. You deserve it Dad.

This is sort of an ethical question - I'm taking a natural path, meaning no meds, no bipap, no feeding tube, no ventilator. For months leading up to this point, I was planning to stop eating and drinking once it became no longer possible without a feeding tube. I assumed this would occur around the time that I could no longer use the bathroom independently. Now it looks like my legs, arms and torso will stop working before I stop swallowing... I'm thinking about stopping, eating and drinking when I get to the stage of immobility. Would you consider that​" cheating", i.e. dying before the natural course of the disease?

Hello,

My beloved dad just passed away from respiratory failure resulting from his ALS diagnosis.

He had a triple bypass in August 2025 and then a parathyroidectomy in November 2025. He struggled to recover after those two surgeries. He had to give up gardening and eating his favourite foods because he had lost his appetite, and he eventually stopped doing his daily strolls.

However, from February 2026, he began losing weight rapidly and looked like he was always out of breath. We took him to his PCP, had so many scans, multiple hospital visits, nutritionists and respiratory specialists, but no one could figure out what the cause was.

Then, in mid-July 2026, he lost consciousness and was taken to hospital. We were told that his CO₂ levels were dangerously high. The neurologist conducted nerve conduction studies and an EMG, and we were eventually told that he had ALS — what we call Motor Neurone Disease in Australia.

They took him off the ventilator on Wednesday, and he passed away last night from respiratory failure.

I am sitting in the funeral parlour with so many mixed feelings. There is a sense of relief that his suffering has ended, followed by guilt for feeling that relief. I am angry that he had to go through two major surgeries that turned his life upside down, only to eventually be diagnosed with the most aggressive form of ALS. I am fearful about what will happen to my mum, and now I feel completely lost knowing that the heart and soul of our family is gone.

I don't think I have ever seen something as brutal as ALS/MND. I cannot fathom something so cruel and relentless as this disease.

My love and prayers go to all the families and carers who have suffered, and who are suffering, because of this disease.

I hope, for all our sakes, that a cure is on the horizon.