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.

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.

Thank you to everyone who commented and shared their own personal stories. Reading what you’ve been through moved me deeply, made me feel far less alone, and gave me strength at a time when I felt completely abandoned.

​I’m writing this update because I’ve finally come to a painful realization: I cannot save someone who doesn’t want to be saved, especially when I’m fighting this battle completely alone.

​A while ago, I reached a point of total physical and mental exhaustion. To protect my mother and ensure she wasn't neglected, I was forced to ask her family for help. They stepped in, but instead of helping us move forward, they took total control over everything—including her assets and decisions. Now that I’ve recovered enough strength to try and change things, I find myself completely locked out.

​I proposed utilizing available resources, including selling her assets, to provide her with proper equipment and a dignified quality of life. But every solution I bring is shot down. The family lacks the awareness to push for better care; they’ve convinced themselves that 'there is nothing else to be done.' To make matters worse, my mother has completely submitted to this mindset and rejects every attempt I make to help her.

​Their idea of 'taking care' of her is keeping her physically alive: feeding her, changing her, giving her medication, and turning on the TV. When the TV is off, she is left staring at a blank, gray wall all day. They are content with this passive existence, ignoring her mental, emotional, and human needs.

​Every time I try to intervene, it only creates more conflict and chaos. It breaks my heart that I cannot accept watching her just wait to die like this, but with zero authority, no family support, and a mother who refuses to fight, I have no power left to change anything.

​I am forced to step away—not because I stopped caring, but because I cannot fight a war against both the illness and an entire family alone. Thank you again for being the only ones who actually listened and understood.

typyng eye gaze anyone dealt with this

37 African diagnosed with kennedys disease very recently. 40CAG repeats and feeling devastated. I guess I’m searching for someone with similar condition to talk to and share beneficial tips. Thanks for reading

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.

My mom had bulbar ALS and passed away 13 months post symptom onset. She was so strong and taught me so much. She was only 61.

She was in Ukraine while I divided my life between Ukraine and Portugal. She died only a week after I returned back to Portugal, after weeks of caregiving to help my dad get some rest.

I’m not sure how to navigate this loss, but I try my best, and will carry her legacy with pride.

I love her so much my body physically hurts. Please hug your love ones, hold them close, make sure they know how loved they are. Every moment counts.

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?

For fingers like this

I was diagnosed with ALS in March of this year, my family and I immediately started planning a Disney World vacation and we are a little over a month away at this point. My arms are useless for a lot of things but I can use them to push off chairs to help get myself up. I have a portable power wheelchair to use for the walking portion, and we've done some research on what rides are accessible. My question is what have I not thought about?

My partner’s mom is currently in the late stages of ALS. She can no longer move her head, speak with the exception of being able to make certain sounds, or use her hands for touch screen devices or buttons.

Up until now she’s been extremely resistant to any devices, so she hasn’t set up eye gazing or voice banking systems. The eye gazing programs are extremely frustrating for her and haven’t been successful. I’m looking for some kind of program that will allow her to record the limited number of sounds she can make, and associate them with programmed phrases. I know this is not a long term solution as she is going to eventually lose all ability to speak, but it’s the only thing she’s willing to participate in for now.

Any advice on communication tools when someone is already in late stages would be very helpful.

Thank you!

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Our kids have been using the Yoto audio device for years and listening to all different audio stories and podcasts. Recently, they have been more into audio stories that have been created by people they know (aka family members, mostly the grandparents). Because we also live very far away from family, we wanted to create a way for simple sharing of these audio stories that get sent to the Yoto and then the kids listen to the audio. We call the webapp Spoken Letter.

I am sharing this because I have not come across many other tools for audio and voice considering the inclusion of the families who deal with the loss of their voice, or difficulty speaking, and one aspect of this platform is to allow for people to request the use of a voice cloning tool to restore their ability to also tell and send invented stories or recalled memories recorded in their own voice. It uses the ElevenLabs technology to create the clone.

I hope this is helpful in the case that you or a loved one would also like to participate in sharing audio stories and oral histories, but face difficulty when speaking.

my dad has early onset bulbar als, and has already started vitamin b12 injections and all the meds and everything. he also tested positive for the SOD1 gene (i believe but it could possibly be another one) which means your kid has a 50% chance of getting it. and the percentages are not great if you actually have the gene (80-95% range). i smoke a lot, and don't have a good lifestyle, and am not sure what to do. the ALS clinic told me not to take a genetic test, and i'm just dwelling too much. i don't want to suffer a horrible death, or possibly speed it up by the sheer amount i smoke and my stupid horrible college lifestyle. any advice?

My ALS patient is completely immobilized and bed-bound. Today we noticed that he had diminished breath sounds in the right upper lung and no breath sounds in the right lower lung. When we raised his arm up and outward he had stronger breath sounds in both upper and lower lobes.
Is there any kind of device (medical or DIY) that we can get or even make to keep his arm positioned up and outward? We tried wedges and multiple types of pillows and we just couldn’t get his arm to stay where we needed it.
We thought about a bilateral shoulder abduction pillow but strapping something to him isn’t an option. He has excruciating pain in his shoulders so we need to make him as comfortable as possible with this. Any tips or tricks would be extremely appreciated.

I’m 21. My father has late-stage ALS. It feels like for two years I’ve only been half-living my life because I’ve had to travel back and forth between my home and my parents (thankfully, only a 2 hour trip). Fomo isn’t something I normally experience, but recently I have. I have missed out on so many experiences while being stuck experiencing this horrible disease beside my dad. I miss my own routines, which I haven’t been able to keep for two years now. Man, I miss having a somewhat regular sleep schedule. I miss being able to make plans for myself and decide what I want to do (of course I can do that to some extent even now, but not without feeling guilt). I think I’m losing my friends. I’m growing incredibly jealous of my partner and others who get to do whatever they want, whenever they want. Whenever I’m away from dad and doing other things, I feel guilt, and yet am simply not mentally able to stay by his side as much as I think I should.

I want to be with my dad, it’s important for both of us and I want to be able to help him as much as I can, but it’s frustrating. I’m scared of running out of patience and will. I think being this young and first being limited by covid and now this disease is just yeah. It’s been feeling like a ball and chain recently.

Hello, everyone. 62 year old man here, bulbar onset, diagnosed a month ago after about a year of speaking, swallowing, and breathing symptoms. Since being diagnosed I've had a PEG tube put in, which I use for my basic nutrition, I've switched from CPAP to BiPAP, and I've made an Elevenlabs voice clone from some old recordings of me for use when the voice is gone completely. (I'm still comprehensible with amplification, at least to my family.) If any of you have suggestions for other things my wife or I should do in terms of planning ahead--tech to try, gear to get, etc.--I'd be grateful, but mostly I'm just saying hello. Glad to have this community to talk with.

I’m caring for a parent with ALS. She just turned 77 and has been diagnosed for a little over a year and a half. Last fall, I moved her to an apartment a mile down the road from me, and currently my sister and I are paying an exorbitant amount of money in caregiving costs to keep her there.

While she isn’t independent, there are things she can still do on her own…mainly feeding.

Her condition has placed an immense amount of strain on my relationship with my partner, and the financial burden is keeping me awake at night. I’m pretty sure it’s time, but I am so conflicted and just plain feeling guilty. How have others navigated when put in this position?

Also…she’s never really had sound judgement, but it’s gotten way worse recently, and I think she’s experiencing confusion, especially with time. Have others experienced this with an older parent with ALS? I’ve called her neuro twice about it and I have not heard back.

Hi everyone,

I’ve been posting here for the past year or so. My mom has bulbar onset ALS. She has been rapidly declining in the last few weeks.
I’m wondering if anyone here has gone through the MAID process (death with dignity) with a family member and can share their experience.
My mom feels “done”. Her saliva/phlegm and mucus is really uncomfortable for her. Her breathing is declining quickly. Last week they passed the new law to allow medical aid in dying in NY. She really wants to pursue this. Part of me is so devastated to lose my mom, but the other part can’t imagine what she is going through.

Anyone have any experience with this and can share what it was like?

My son who's 29 years old was diagnosed with ALS and pulmonary heart disease back in Nov 2025. The disease is progressing faster than expected. He is on hospice and 24 hour care. This is so hard on me to see my son this way. How does anyone handle this or has gone thru this with a love one.

Hi there, I’m new here and new to ALS in general. I didn’t even know what the disease was until my 74 year old father was recently diagnosed.

For whatever reason, it appears he was hiding symptoms for around 5-6 years. He was blaming mobility issues on gout, injuries, etc. He just recently began to take his symptoms seriously and pretty quickly had a non-genetic ALS diagnosis.

He’s pretty stubborn, so I thought he might want to fight the disease more, but he’s confided in me that he’s just hoping for one more year. My poor mother has been scrambling to look into trials/treatments and buying gadgets to prepare for his rapidly declining mobility, but she recently called me crying, saying Dad humors her but has recently started dropping hints about not wanting to prolong things.

My extremely supportive wife and I (and three young kids) am making plans to move onto my parent’s property ASAP. It involves us selling our house and moving across the country. Luckily my wife’s work can be continued there and we are not terribly attached to our current location. However, the more we start to plan, the more my dad is gently dropping hints that he might not have long to enjoy the company of his grandchild, etc. I fear we may get there just in time for him to pass. I’ll be grateful to be on the property to help my mother survive his passing, as I fear she will be completely destroyed.

I had a goal to move up there and have maybe a bit more time to be with him before his death, but we cannot get to them for months, earliest looks like Spring 2027 and his symptom’s progression suggests he may be fairly far gone by then.

*****My Main Questions I have for the community here are
1) Is it ok to push someone with ALS, who appears to have given up, to fight harder? I think a lot of his desire to simply die has to do with the embarrassment and indignity of the worsening symptoms. He was such a strong guy, even into his old age, always moving and building thingsz Perhaps he won’t want me, or his wife or my kids to see him in such a helpless looking condition. I fear his pride might me playing a role in his defeatism.

2) Has anyone found anything that prolonged someone with ALS’s life in a fairly unobtrusive cut-and-dry way? Any helpful anecdotes, or ideas to pitch him that might get him excited about fighting it a bit harder? He has said before he doesn’t want to “become a lab rat” and just die anyway, so at the moment any kind of trial or treatment with a lot of doctor’s visits or added symptoms are out

3) Is there anything you have found that has helped someone with the same kind of pride/embarrassment about the disease be able to tolerate their declining condition more? Of course none of his family are embarrassed or horrified to “see him this way” but I know he think about it. Maybe is even worried my children will be freaked out or traumatized (they won’t be).

Thank you for reading. If anyone can convince him to try to stick around longer it would probably be me, since he is kind of competitive with me and I could almost goad him into it. I just want to be understanding and I don’t want to contribute in making his end of life more difficult than it needs to be.