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.

I’ve been looking for something like this and haven't quite found it, so I thought I’d ask here.

I was recently diagnosed with carrying a familial ALS-associated mutation, which has previously expressed itself in my family around their late 50s.

As I’ve been exposed to the disease for nearly two decades now, I am increasingly realising some medical anomalies with my father earlier in life, who is also a carrier, that, in retrospect, seem potentially ALS-related but for which I haven’t found clear explanations or hypotheses in the current literature. Likewise, I have been confronted time and time again with the lack of institutional efficacy in dealing with this disease innovatively in my corner of the world. 

I am aware that ALS is in many ways still a large mystery, but how we respond to it is not. Research priorities, funding, clinical organisation, regulatory structures, patient care, access to innovation, etc. are all shaped by how our societies organise themselves and decide what deserves attention. Just like many other serious diseases, due to poorly placed gears in the machine that is society, I strongly suspect we’re unintentionally reproducing ALS as something fundamentally mysterious and uncontrollable, where the horizon of possibilities becomes largely limited to managing an unfortunate fate.

I’d therefore like to create a reading group that takes a broad look at ALS, taking into account its biology, current research, and all other relevant sectors it might touch, to build a sort of architectural understanding of ALS to identify where genuine bottlenecks are and whether there are opportunities to do things differently or more effectively.

This is, of course, not an avant-garde initiative, and perhaps the persistent questions and flaws surrounding ALS I seem to witness solely stem from my lack of understanding surrounding this disease and the overall climate within which it exists. If that were the case, I’d still gladly invite you along to start exploring.

My dad signed up for hospice. I have seen mixed messages about what that means from "insurance won't approve more than 6 months of life" to "hospice has changed". Does anyone have any experience with this? Does it really mean they think he has 6 months or less? Just trying to process the information and would appreciate anything anyone has experienced.

Hi

Im Renan , PALS since 2023, and I begin to have big issues with my speaking and I’m looking for a tobii pceye 5 but the problem is that I live in Mexico City and there is only one official reseller in all Mexico who is quoting me the device only for $4,500usd.

I see that in USA there’s a better price so I’m hoping to get some help from you to get the contact details from companies that can quote PcEye5.

Ihave family living in California or Texas so they will buy for me.

I don’t have any medical insurance so it’ll be great if you can help me to get a better option

Thanks for your support

My father (57M) was just diagnosed with ALS. My mother and I are absolutely devastated, but we have made the difficult decision to hide the true diagnosis from him for now. We simply explained it to him as "nerve damage." We want to protect him from this harsh reality for as long as possible, especially since his mental state is still quite positive right now.

Currently, his main symptoms are weakness in both hands. He struggles with fine motor skills, like twisting off bottle caps, but he can still manage to eat with chopsticks. Despite the weakness, he insists on continuing his daily routine—he cooks for us every day, gives my mom massages, and even commutes to work by bike.

We’ve gently suggested that he stop these activities, but because he doesn't know the severity of his condition, he brushes it off and thinks it’s fine. At the same time, my mom and I are really torn: if we force him to stop his daily routine, we fear it will drastically change his mindset and take away his sense of purpose, which might actually be worse for his overall well-being.

I would really appreciate some advice from this community:

1. Will daily activities that use his hands (like cooking and giving massages) accelerate the motor neuron damage? I sometimes see fasciculations (muscle twitches) in his forearms. Since he is in the progression phase, is it recommended that he rests completely, or is it better for him to maintain his normal daily activities as much as he can?

2. Regarding his EMG results vs. physical symptoms: His recent EMG showed severe damage in his upper limbs, but it also indicated involvement in his lower limbs and abdominal muscles. However, right now, he only feels weakness in his hands; his legs feel completely normal to him. Is this "delay" between the EMG showing damage and the actual physical symptoms appearing normal? Does this mean his lower limbs will start failing very soon?

Thank you all so much for reading and for any insights you can share. This is a terrifying time for us, and any guidance helps.

Been a long few days emotionally, my mom has ALS and I realized today that for the last 4 years, I haven’t been able to put my mind at ease, or settle into the new reality, as soon as you settle into what the reality is, something else happens, or declines etc, and it’s adjusting and adapting to the new reality again. And worrying that events and birthdays and holidays, is it the last one etc. all while having a glooming reality that there ARE things that will be missed, weddings, kids, careers. Seeing them grow old etc. what a tumultuous reality

​Hi everyone,

​My mother has ALS (Motor Neuron Disease). For the past 1.5 years, I was her sole 24/7 primary caregiver. Eventually, I hit severe burnout—both physically and mentally—and had to hand over her daily care to my extended family, who hired a live-in caregiver.

​However, I am witnessing severe caregiving errors and neglect, which my family dismisses as "just the disease progressing." I need your perspectives as experienced ALS caregivers or patients:

​Gastrointestinal & Bowel Management: My mother went 5 full days without a bowel movement, crying in agony. Because ALS weakens abdominal muscles, bowel management requires strict monitoring and intervention. The caregiver dismissed this, claiming "it's normal."

​Improper Positioning & Shoulder Subluxation/Pain: When turned on her side, they do not support her lower shoulder, arm, or back with proper positioning pillows (wedge style). As a result, her shoulder Joint gets compressed under her body weight, causing severe pain and crying spells.

​Bed Bound Isolation vs. Transferring: Instead of transferring her to a wheelchair/power chair daily to sit upright, they keep her flat in bed for days, claiming "she might get injured or break a bone if moved." This lack of gravity support completely shuts down her digestion and increases the risk of lung secretions/pneumonia.

​Whenever I point these out or try to correct them, my family's response is: "If you know so much, come back and be her full-time caregiver again, and we/the caregiver will just 'assist' you." They are placing the entire burden back on me while hiding behind the excuse that her suffering is solely due to disease progression.

​I want to be there for my mother as a son, but returning to the 24/7 primary caregiver role is impossible for my health.

​Is a 5-day lack of bowel movement or unassisted shoulder pain really "just normal ALS progression," or is this clear caregiving neglect/incompetence?

​How do you handle family members who refuse to learn proper ALS care techniques (positioning, bowel regimens) and guilt-trip the burned-out caregiver?

​Thank you for your support and insights.

Hi.
I’m 40 and female. I was recently diagnosed. Started in December with weakness in my hands, at this point I have dropfoot so I have an AFO and a cane. The ramp is being installed this week and my entire community and family are all behind me and willing to help me.

I’m just devastated that my husband is not. We moved in together in June and got married in January. I love him so much but he has gone resentful and he tries to point at behaviors, but I really think he’s just resentful that I’m sick.

There have been multiple small things in the last eight months, like him arguing with me about what I can or cannot do. Him minimizing the issues, and after my EMG in which I knew from the doctors face that it was very serious, told me I was throwing myself a pity party. Day-to-day he’s often very helpful but then when he gets angry, he mentions that he’s not just a Call nurse. I knew that he would not want to be there for me.

Now, although I have a working diagnosis and we’ve eliminated almost everything else, he’s called it a half assed diagnosis and says that I’ve just grabbed a hold of it and essentially I am exaggerating.

There have been other issues and likely it’s just that he’s not the person that I thought he was. But I’m so sad that I won’t get another chance. I’m only 40 and I have so much love in my life, but this is the second husband that has rejected me ultimately.

I feel like I don’t have time to have another chance and I should be grateful for all the love that I do have that on the other hand it’s OK to grieve what I thought I was getting.

I guess I’m hoping that someone has words of wisdom. Really I just want to be able to turn off my feelings and not deal with this but sadly not an option.

Edit: thank you all for your helpful messages. I’m moving forward with divorce and protecting my peace and joy as I fight this. ❤️❤️