I cannot lift either arm above my waist. While not completely gone,my arms are pretty much useless. I am starting to find that itches on the head , nose and ears left unscratched amounts to nothing short of slow torture. Anyone else who shares my frustrations? Any tips or tricks?
Hi everyone, I am 23, my Dad was diagnosed with ALS just a few days ago. It has been something that my family has been anticipating considering that he has shown many symptoms and has undergone a variety of tests in the past year. This being said, I feel like my perspective changed as soon as the diagnosis was confirmed. I just wanted to come on and ask how other children of parents who have ALS have dealt with the experience of this kind of grief that I seem to be feeling. It truly has taken over my thoughts and I am trying to push through to continue being positive and strong for my family while juggling other things like graduate school. I have people close to me that are offering support but I just feel angry because it feels like no one understands the weight that’s on my family right now. simultaneously, I feel guilty because he the one dealing with the disease, not me. Does anyone have any words of wisdom, suggestions or advice? I want to be as present as possible without letting my own feelings get the best of me. Thank you.
Hello , my Dad just got a trach and vent on Monday . Today he has been gurgling loudly and panicking. we can’t seem to suction any of it out , which i think is scaring him more . Has anyone experienced this ? Does it get better ? How can i make him more comfortable? We are in the hospital still and the nurses haven’t been the best at being there to help us and talk to us . We are exhausted, overwhelmed, and frankly terrified of the future :/
My father was diagnosed in late 2025 after loosing his ability to walk in late 2024. He can still stand and can transfer with assistance. This is how it has been since Feb 2025. I'm thankful for that. I have found a small company that provides me payment for caring for him. It pays $13 an hour, allows for 2 hours per day at 5 days a week. But... this doesnt feel like enough for when his ALS progresses. My question is for those who have provided long term, end of life care for their PALS. Firstly, thank you for being there for your PALS and my whole heart goes out to you. What do I need to do to be able to provide this for my father? Is this pay fair for a low income state? Am I imagining that this is even possible for me to do? I love the old man and want to do as much as I can for him. I also work nights, am a father of 3 and have to maintain affording our home. My heart breaks at not being able to be the one to take care of him when he needs it.
PALS has decided to withdraw care. They are on ventilator support and have required 24/7 care since their diagnosis several years ago. The ALS has progressed to the point they cannot move without assistance, and they feel their quality of life is no longer satisfactory.
I don't know how to stop being a caregiver after so many years of 24/7 intensive care, but I am also completely burnt out and exhausted. I feel like I am in free fall and trying to deal with all of the emotions.
My loved one is choosing not to make any end-of-life plans beyond withdrawing medical care, so I don't know what to do next. We don't have children; family on both sides are minimally involved in the day-to-day decisions. I don't have much in the way of a support system.
How does one cope during this transition?
Hi everyone. I just wanted to ask about your experience with vitamin b12? My dad has been diagnosed since December 2024 and he’s still hanging on. It kills me everyday knowing that he is suffering. We’ve tried riluzole and it almost wiped him out and he just doesn’t want to take it. I’ve been researching vitamin b12 and thought it could be a good supplement to take because it’s a vitamin. I’m tempted to buy it for him because he doesn’t take it. I would love to know if anyone had insights. I’m based in the U.K. and we don’t have access to the ultra high dose ones here so I was just going to get him the vitamins from Holland & Barrett.
Also wondering if anyone has dealt or is dealing with anticipatory grief knowing the gravity of ALS. I feel like I’m coping and cry all the time.
Thank you all so much.
Hi! My mom has been fighting ALS for nearly 6 years. The past year we have been picking her up every time she transfers (from bed to chair, chair to bed, chair to toilet, etc). She has not been able to use her legs to assist in transfers for nearly a year, nor do her arms have the muscles to assist in transfers either. She is about 110-100 lbs, but insist on still being manually transferred by us kids or caregivers. She refuses to use a hoyer lift because she doesn’t want to be dropped and thinks that any well trained caregiver should be able to lift her without issues. However, we are having a very hard time maintaining private home care staff because of dependent transfers. So in your opinion, is a hoyer lift more feasible or should we continue to manually transfer?
I live with my in laws, and my father in law has ALS. He was diagnosed in 2023 and so far it seems pretty slow progressing.
We are planning to move and buy a new house later this year, and I want to make sure it is going to be as comfortable as possible for my father in law. I‘d love to do as many modifications as possible before we move in such as adding a ramp in the garage and making his bathroom wheelchair accessible.
Wanted to see if anyone here has recommendations about things I should be considering? If you were starting from scratch on your home, what would you want to make sure you have?
Thank you so much!
I was diagnosed with Als 3 years ago And I spend my time now mostly in bed
My breathing is becoming difficult To the point where I'm starting to Think about the end
This is address to People who have Look after loved one All professional carers
I am just curious As to how The last few days are
I am guessing It's mostly A diminished ability to breathe
I am told People are then Add Ministered morphine
To make the breathing easier They eventually fall asleep And do not wake up Is that correct
Please forgive the Typing errors As I'm using Voice activation
Thank you very much
Are there any guitar players on here or other musicians? How did you deal with your music? Did you continue to play in spite of the frustration of becoming less fluid, or did you switch to something else? I'm curious about how people approached this.
Hi Folks,
My mother was diagnosed early March but only last week I found out on top of Bulbar presenting als she also has frontotemporal dementia.
My mother doesn't understand that she's got als, she is convinced it is a sore throat and she needs to have scans done of her chest and throat and to be seen by an ENT specialist.
The problem is that she already has been seen and there's nothing wrong.
My question is, how do I redirect her attention to something else. She doesn't work so is at home every day cleaning and cooking.
I was thinking about maybe getting her into bird watching? I really don't know how to redirect her away from this obsession with the scans and her throat.
I want her to experience something that makes her happy other than a clean house.
If anyone has or is dealing with someone with FTD, any suggestions on what I can do to help her?
Thanks.
My father is starting to lose mobility in his hands and it’s causing him to get stalled in his power chair. His hands will stiffen up, then he can no longer control his wheelchair. What is the next step when this happens? Is there an alternative way for him to maneuver his chair?
Hello everyone. my mom got diagnosed with als a couple of years ago and more than a year ago she lost her voice too and i was wandering if anyone knows of an ai good enough to recreate a voice from a couple of clips, the ai need to be able to do it in hebrew because thats our language and all i want is too here my mother's voice again.
Thanks for your help.
Let me start by saying I (35F) love my partner (34M) greatly, we’ve been together for 16 years and I honestly don’t feel like we’d ever break up. He has always been my best friend and made me very happy. He was diagnosed with MND (we’re in the UK) in March 2026 and he’s in a wheelchair much of the time now. I am finding caregiving really tiring and difficult emotionally and physically. I feel like my life has very little time for joy at the moment and I am really hoping people going through or who have been through this can tell me to hang in there and I will come out of the other side of this rough patch.
Hi, my oxygen is good accident initially like 95 but I feel like I have a gorilla sitting on my chest and I am coughing up for the first time and this whole time of having my LS. I am on Mucinex about six times a day and I just actually had a natural cough where I coughed up a chunk of like white gunk, I guess and that made me puke. We’re using the that section every time I have too much in my mouth. I have plenty now I have 24 hour caregivers now I don’t have any family support so I’m just really stressed about how to get back to where my lungs feel normal. It really wasn’t a problem in the hospital a day and a half ago when I got out in the hospital, I started to feel really sick in the ambulance going home. My other theory is that my body is having withdrawal from opiates because I had so much pain in the last two weeks. I’ve been on last nine weeks Have been on morphine oxycodone and when I was in the hospital, I was on Dilaudid so I mean it seems like I guess a little bit better when I take an action going on I just wanted to know when I take an oxycodone it gets a little bit better. I can’t take my morphine because I feel like I will choke on the pill. On Monday, I will let my doctor know. I cannot swallow the exec release morphine anymore and that I need another type of painkiller, but I’m doing OK with the pain as long as I don’t have an infection I can do Tylenol and methocarbamol. Does anybody have any thoughts on these secretions while I break them up with the coughing and get them actually out of my body and have a break from this feeling? Is this my new normal? That’s probably the thing that is freaking me out.
My “baby” brother (age 45) just disclosed his diagnosis yesterday evening. He is/was an incredibly healthy, young, and active physician. He has been using a cane for walking/balance assistance for the past few weeks but told us all he just had a bad fall and slipped a disk in his back. I also learned he can no longer shower and must use a shower seat. I don’t believe he is still working as a hospitalist. He didn’t volunteer any information regarding his work status and I didn’t ask, but he seems to be at our mother’s house pretty frequently than his work schedule would typically accommodate.
I am absolutely devastated. I am completely heartbroken. I am terrified and can’t help but to feel like I am already grieving him. I know there is no certain answer and people can progress at different rates, but can you all please help give me an idea of how much time we may realistically have left with him? I don’t want to take another minute with him for granted.
Knowing my brother, I am almost certain that when he loses the ability to “wipe his own ass”, he is going to see himself out. He just has too much dignity to live like that. He has no wife or children, so he won’t feel obligated to go on for the sake of others. He is a physician and has the knowledge and resources to do so. And as much as I never want to let him go, I would fully support him in this.
Thank you all so much for anyone kind enough to respond. ALS can fuck all the way off!!!
My mom (62y) is in the late stages of ALS. She is just about ready for a feeding tube & can barely speak anymore. I’m wondering what I could possibly do for her as her last hoorah, has anyone done anything like this for someone in late stages? TIA
PS fuck ALS
My dad was diagnosed with als in Jan but had symptoms much earlier. He is long time diabetic (well managed) but when he started having issues with his extremities his then GP wrote it off as diabetic related.
Realistically he has months to live. He is in his mid 80s. We have an amazing als care team now and his breathing and having enough air to speak is waning quickly. He is on bipap most of the time. Swallowing ok. Losing massive weight and was thin to begin with.
I am the out of town sibling and offered to have the advanced directive discussion. The als team tried to during clinic earlier this week but he felt they were acting like his death was imminent. He thinks he has longer to make the decision. Understandably this has all moved very quickly but if he wants a trach the time for surgery is now. Also he started voice mapping but we are likely too late on that too.
My sister and his long time companion want me to explain that before ALS he and my mom had a DNR.
Any advice on how to explain the invasive life saving interventions will be much appreciated.
I have gained so much from everyone on this sub. ALS is a nightmare we can’t wake up from but I have found grace here. 🙏
Hi everyone,
I'm caring for my dad, who has ALS, and I'm hoping to hear from others who've worked through this. He's been having a hard time sleeping and getting comfortable with positioning. No pressure sores so far, thankfully, and we really want to stay ahead of it.
We first tried an alternating pressure mattress, but he couldn't tolerate it — the constant inflating and deflating was just too uncomfortable. We also tried an egg crate foam topper, but it compressed and sank pretty quickly, so it isn't giving him the support we hoped for.
I'm trying to figure out a middle-ground setup. I've read a bit about static air-cell mattresses (the kind with individual air cells that redistribute pressure without the motion) and I'm curious whether anyone here has tried one and found it more comfortable for sleep. I'm also wondering if a denser, higher-quality foam topper might hold up better than what we had — if anyone has found one that doesn't sink over time, I'd love to hear what worked.
More than anything, I'd just like to hear how other families have handled comfort and pressure prevention when the alternating mattress wasn't an option. Any experiences or advice would mean a lot. Thank you all.
Hi everyone
My mother passed away from ALS early Sunday morning. I became her caregiver in March very suddenly and was there for the last two months of her life.
I am feeling very sad and broken by this, I'm feeling a lot of guilt for getting into slight arguments with her and us sometimes fussing a little bit.
One of the last nights she still had her voice, the last thing she told me as I was putting her to bed was "you are the best thing that ever happened to me".
Did anyone else who was a caregiver for their relative feel similarly after their relative passed? Guilt for fussing a little bit about stupid things due to the stress of the situation? How did you get through those feelings?
Thank you in advance.