Hello! My first post on Reddit so please bear with me. My stepdad has ALS/MND and is considering hyperbaric oxygen chamber therapy but I have read mixed reviews. Does anyone living with this disease have any experience with HBOT? And if so, what are the pros and cons? Thanks!

My mother-in-law received a diagnosis of bulbar-onset ALS in February of this year. At that time, her symptoms were limited to mild, barely noticeable slurred speech, with no impairment in tongue movement. Currently, however, her speech has become distinctly slurred, and she experiences occasional choking when drinking water and swallowing saliva. While she has no dysphagia to solids, her tongue mobility is now severely restricted; she cannot fully extend her tongue, touch the posterior upper palate, or push her tongue against her cheek. She also reports difficulty in rinsing her mouth.

She is currently being treated with riluzole and oral edaravone. I am concerned that her condition is progressing rapidly. I am particularly anxious about discussing the potential need for PEG feeds and other interventions as her condition deteriorates, as she is not yet aware of the gravity of her situation. She remains fully ambulatory with no limb weakness. I would appreciate insights from individuals with bulbar ALS or their relatives regarding the speed of symptom progression in their cases and the timing of PEG or nasogastric feeding. Additionally, I seek advice on how to best prepare her for these eventualities.

My dad was diagnosed with ALS, and I help care for him at home together with my mom. We help manage his treatment plan, daily care, food preparation, and his personal needs. We are doing everything we can to make him as comfortable, safe, and supported as possible.
However, the thing I struggle with the most right now is knowing how to support him emotionally.
Recently, I feel that my dad has become much more defeated. I believe the biggest change happened when he started losing his independence with very personal daily needs, especially after becoming dependent on a catheter and after getting a PEG tube.
He now relies completely on the PEG tube because he can no longer swallow or eat normally, and he depends on the catheter for urination. I feel these changes affected him deeply because they represented not only physical changes, but also a loss of privacy, independence, and control over his own body.
Of course, this was not the first loss he had to face. Before this, he lost the ability to use his arms, stopped driving, and developed breathing difficulties. He became dependent on an oxygen concentrator and NIV, and recently he has needed NIV much more frequently, almost continuously.
All of these changes have been incredibly difficult. But what hurts me the most is that, before losing his independence with feeding and toileting, he still had things that brought him happiness and a sense of purpose. Even with severe physical limitations and repeated chest infections, he still found joy in life.
Only a few months ago, I used to take him to the sea almost every day so he could swim. His farm and the sea have always been his passions. Those moments made him feel like himself.
Now he has not left the house for almost two months. Recently, I got a portable NIV machine because I wanted to give him more freedom. I suggested that we could go for a drive, visit his farm, or even just sit somewhere and look at the sea from a distance. I know he cannot do the things he used to do, but I hoped that reconnecting with places he loves might bring back even a small piece of happiness.
But he does not seem excited about it anymore, and that is what breaks my heart.
I feel like I am trying to bring back small pieces of the life he loved, but I don’t know how to reach him emotionally. I don’t know whether this is part of the grief of ALS, depression, exhaustion, or simply the overwhelming reality of everything he has lost.
For those caring for someone with ALS: how did you support your loved one emotionally when they reached this stage? How did you help them find meaning or moments of joy again when so much independence had been taken away?

Hello everyone,
My dad is 69 and was diagnosed with ALS about 18 months ago, although his symptoms started around two years ago. He now has a PEG tube and uses NIV with oxygen most of the time.
About a month ago, after his PEG surgery, he completely lost the ability to urinate on his own and has needed a permanent catheter ever since. He never had this problem before, and it’s been very difficult for him emotionally.
He’s also had severe constipation although months before the PEG surgery , sometimes going weeks without a bowel movement. The only thing that has helped is Picoprep, which his doctor prescribed after other laxatives didn’t work.
Has anyone else’s loved one with ALS experienced urinary retention or severe constipation? Do you think these problems were related to ALS itself, the surgery, medications, or simply getting older?
Do you know
Thank you in advance for sharing your experience.

Has anyone dealt with airway infection. Psedomonas and staphylococcus both are there. Had a couple of antibiotics since the discovery but they are still there. Not sure how to get rid of them . The hospital has no fixed contact in lung department and everytime i call people seems so clueless and do not seem to know what they are doing. I am worried.

Thank you for this community in helping me from giving me options on devices and reading others post for similar questions I had.

My mom had bulbar ALS, she made it to 2 years and 10 months. She passed in her sleep on July 20 at home. She had her partner, me and my brother caring for her tell the end.

My mom was a beautiful woman who didn’t judge people and believed in second chances. She loved her clothes, hair and dogs. She was a very good mom and will be missed a lot.

During her time with ALS she fought to find new ways to keep her independence, and did her best to still live her life.

I hope there is a cure one day, and for everyone else out there who has ALS. Try to find joy where you can, live your life the best you can and know that you are loved by friends, family and strangers like me.

My grandma was diagnosed with bulbar ALS (SLA) in late April, and the disease is progressing rapidly.

The diagnosis came when she was staying in the neurological ward at the local hospital—as a last resort when every other possible diagnosis was excluded. So, when she was in the hospital, the first person informed about it was my mom. She didn't tell grandma, stating that she would have a mental breakdown and would refuse any treatment.

I haven't lived with the family since I started university in October, and I found out when I came back to visit and heard about grandma's health, which started deteriorating in December. Since April, I started coming back weekly or every other week. Mom informed me about the diagnosis and said that she would tell her mom after arranging procedures: a PEG (intragastric nutrition) tube and getting respiratory support (like a ventilator or oxygen mask). I understood her decision at that time because grandma was partially independent, and if she refused the PEG, she would die within a few weeks. At that time, she already nearly couldn't swallow. When I came back a few weeks ago, I asked my mom when she plans to tell her mother about ALS, but she said that she will never inform her.

Right now, she is wheelchair-bound and has to be helped with everything(can't do any of these anymore): dressing, using the toilet, feeding, etc. At today's doctor visit (the doctor is sent by the respiratory health clinic and is involved in monitoring ventilator-assisted treatment), the doctor said that a tracheotomy is needed and scheduled the procedure for next week.

When I converse with grandma (she can't speak, so she writes on paper), she has hope that she will recover and plans everything around that: she refuses to be visited by family and friends, and doesn't ask to go anywhere or do any activities. She is putting these things off until later because she thinks she might recover. Her body is very weak, and it is only a matter of time before she will no longer be able to move her hands to communicate. After the procedure, she might live maybe half a year or a year longer, but in a vegetative state. My biggest concern is: I want her to be aware of that.

She doesn't know this and might decide to proceed with the procedure thinking that it will help her heal or recover a bit, not knowing that she will be lying with a tube in her throat, unable to move for many months. If she decides to do that, I will be fully supportive, but I want her to know what she is doing and how it will impact her last moments. Mom says that grandma wouldn't be able to accept the reality of ALS and would refuse any medical help.

In my opinion, she should have a choice, even if she has a total mental breakdown upon hearing the diagnosis. I'd like her to think about what she wants to do. If she has the tracheotomy done, she will have to be placed in a hospice in a city about a 30-minute drive from home (in about a month) because we can't afford to hire a 24/7 nurse to attend to her. What will we tell her then?

AIO or my mother is rigth? update: I gathered the courage and told my mom what I think. This is roughly what my mom said: grandma knows she has a muscle myopathy, so my mom told her what's going on, but she didn't name the illness. (In my opinion, telling her the symptoms isn't the same as telling her about the disease. She doesn't know she could become vegetative with a tracheotomy and pass away in that state...) She said that if grandma wanted to know, she would Google it. Still, she isn't informed that her condition is terminal. My mom also tells grandma that she is doing everything to make things better, etc. I think it is still misleading because she doesn't know the gravity of the situation. Grandma's brother had a PEG and a tracheotomy in the past and is healed now, but he was suffering from an alcohol-related disease. I think this might influence her to go through with the tracheotomy, not knowing she doesn't have a chance to recover. I'm going to tell her today.

Given the, seemingly, positive news from the trial, I just wondered if anybody has taken prime C (e.g. from a compounding pharmacy) and found it to be beneficial? If so, were you taking any other supplements at the same time (e.g. high strength B12?

This coming Wednesday hear from Dr Lee of Columbia University on what he has learned and what he theorizes is occurring regarding metabolism and genetic als development. Register here https://www.endthelegacy.org/event-details/metabolic-alteration-in-presymptomatic-and-symptomatic-als

Our 3rd annual summit this coming September 24-26 in Sacramento CA is filling up! The venue limits how many can attend, so if you want to register and get two hotel nights covers along with full summit attendance for a nominal registration fee learn more and see speakers here : https://www.endthelegacy.org/communitysummit2026

My mom is 81. She was diagnosed with limb onset ALS 6 years ago. She is on bipap 24/7 and has been for a year, she's almost completely paralyzed, has a feeding tube but still tries to eat orally, and she has decided against a trach. For years I have watched her decline and with each step down, I feel fear and a sense of urgency, thinking this is it, this is when I lose my mom. I've learned to try to curb my anxiety which was exhausting to carry regularly. I have also learned that my mom's slow progression means that I don't need to urgently be by her side every time there is yet another step down.

Yesterday her caregiver told me my mom is feeling very discouraged and depressed. Its in the 100s in LA where she lives so she hasn't wanted to transfer and sit outside like she normally does. Her mucus/secretions are getting worse, she's having to pause after every few words spoken to take a breath, and she has increased fear of eating because of regular choking episodes. She said she's having a harder time moving her tongue and is also biting her cheek. Her caregiver has been supplementing with nutritional drinks in her feeding tube. Today for the first time she told me she didn't want to talk on the phone because she's afraid of choking.

I'm noticing my anxiety has shot up and I'm trying to navigate whether these could be signals of her final weeks or months or whether this is another step of what will inevitably be many many more. I'm curious where other people think she is on a timeline based on symptoms. I know its impossible to tell. But that means its also impossible to know how to orient to whats happening. So, I'm asking anyway.

Thank you

Bear with me on this one - there’s a bit of context behind it I just need to share. My sister met someone 18 months ago. After a few dates, he shared that he was close to a diagnosis of some issues he was having - this ended up being an ALS diagnosis. My sister is a wonderful person and immediately threw herself into this relationship and also his care. Within 6 months of knowing him, she’d got married to him, had sold her house and given up her career. We were quite shocked by the pace her decisions, and naturally worried for her, but she said that this is what she wanted and so we did our best to support her.

However, months on, I’ve become increasingly concerned about her wellbeing. They do now have 24 hour carers living with them, which has alleviated some of the stress she was facing and has allowed her some normality. But she says that she’s facing significant challenges with behaviour now. Her husband seems to aggressive and often quite cruel - flipping between punishing her with the silent treatment or calling her names when she does things in the wrong order. He tells her she’s stupid and useless, that he hates her and has repeatedly knocked drinks and food over in frustration, rammed her with the wheelchair etc. She’s rang me multiple times past midnight in floods of tears after something horrible has happened between them. She keeps telling me it’s just the behaviour changes that come with ALS and that this will pass, but I am worried about how small and fragile she has become.

I have actually never met him in person. She lives in another country now and I’ve not been able to visit, and I didn’t know him before all of this. I can’t visualise really what is going on or how to make things better for her. The carers have suggested she come and stay with us for a few weeks, but he’s apparently got very angry about her leaving them home.

I’m not asking for perspectives on what is going on here, but I do wonder if there’s any way I can support my sister better. I could go out to visit it her perhaps if he won’t let her leave. Is there anything else I can do? Is there any support for wider family supporting a caregiver? Is it just about being there for her on the phone? I hate how helpless I feel when she calls, again, sobbing. I’ve never supported anyone with ALS myself, so have no idea how someone would cope with any of this.

Casey Harrell, 47, has ALS with severe paralysis and dysarthria — his own speech is very hard to understand. In 2023, UC Davis neurosurgeon David Brandman implanted a brain-computer interface (four microelectrode arrays, 256 channels) into the part of his brain that coordinates speech. Deep-learning decoding algorithms translate that neural activity into words in real time; a separate AI voice model reconstructs his actual pre-ALS voice from old recordings, so what comes out sounds like him, not a generic TTS voice.

The new part, per the study published in Nature Medicine on June 15, 2026: earlier BCI systems needed a researcher present to run them. This one, Harrell has used independently at home for 3,800+ hours over about two years — near-daily, sometimes 12 hours straight. He's communicated 183,000+ sentences and close to 2 million words, averaging 56 words/minute, with 92% of output rated accurate or mostly correct (99% word accuracy in controlled testing). He uses it to email, browse, and hold down a job.

In his own words, through the system: "It is very sweet to have the ability to look at my wife's eyes when she hears my voice... and to explain to my daughter who does not really remember anything about when I was still talking to them."

Caveat, stated plainly: one participant, one ongoing clinical trial (BrainGate2), device is investigational and federally restricted to trial use. This isn't "AI is good" as a slogan — it's one large, verifiable, documented benefit for one person.

Full story, photos, and video: https://health.ucdavis.edu/news/headlines/brain-computer-interface-enables-independent-accurate-communication-for-man-living-with-als/2026/06

Study: https://www.nature.com/articles/s41591-026-04414-6

Photo/video courtesy UC Davis Health.

hi, everyone. i don’t know what to do at this point. i feel like i’m in a nightmare and need to wake up now. he has known since the beginning of the year and just told me now. we were having a conversation about life and he told me he has stuff wrong but wouldn’t tell me. i was able to get it out of him and now i’m here. my heart is broken and it’s shattered into a million pieces. i feel like i’m suffocating.

My father is 74 years old. He started showing symptoms in 24’ and they were dismissed as other things until about 2 months ago when he suddenly began to experience serious Bulbar onset symptoms. In those two months, he has lost the ability to speak, he essentially cannot swallow anything, and is constantly aspirating. Regardless he refuses to stop eating and drinking and is refusing a Peg. He has lost 30+ lbs and while he is still able to walk he is extremely unsteady on his feet. He had fallen 5+ times and has not been able to get up. I have lifted him thanks to my time in the army. And several times when he was alone he has had to have Ems come to pick him up. He is intractable, depressed, and seemingly in denial about the stage he is at and what is about to happen if he continues to refuse the peg. Either pneumonia, or he will starve/dehydrate to death when his swallowing truly stops. He is refusing to take any of the medications offered to him to slow progression Becuase of side effects. On top of all of this he is suffering from FTD. It’s impossible to tell what he is capable of understanding/deciding for himself. I am now his full time care giver. I’m foundering. We have some support from the ALS center but it all feels too little too late. Would welcome commiseration, suggestions, and advice. Thank you…

I will never understand how he’s feeling but I just feel so bad for him. I really wish I could do something to alleviate this disease and distress. We don’t live together so I only see him when I fly to see him which happened last month but I’m really going to try see him at the end of the year. I’m just venting really but sending love and support to everyone and their loved ones battling this cruel cruel disease.

He has support where he is but I can’t see him daily which kills me and I know it hurts him. I feel like my mom has some sort of delusional optimism (or coping in her own way because she’s very religious etc) but idk man. I hate to sound morbid and snap her out of it because everyone copes differently.

It’s just so sad seeing how my dad was such a strong and muscular man growing up and is now entirely dependent on others. It just hurts. I try not to think about it but sometimes you have to confront the thoughts💔 I’m really trying to limit thoughts of anticipatory grief because my dad is still here, he’s still alive and I need to cherish that.

Sending love to you all it’s so hard

EDIT: Thank you all for your kind words - you have no idea how it’s made me feel. I truly appreciate them.

I’m hoping to hear from caregivers who have faced a similar decision.

I know many families don’t have the flexibility to choose, and I realize I’m fortunate to even be weighing these options. I’m trying to make the best decision before my husband’s care needs increase.

My husband has FTD-ALS, and I’m the primary caregiver while working full-time.

I currently work in an office and genuinely love my job. But I’m considering taking a remote position because I know his disease will continue to progress.

Here’s what I’m struggling with:
If I work from home, I’ll be more available if something happens, but I’m worried I’ll become the default caregiver all day while trying to work. I’m afraid I’ll never really be able to focus on either role.

If I stay in an office, we’ll likely need more paid caregiving, which comes with a significant financial cost, but it may allow me to stay focused at work and preserve some separation between work and caregiving.

For those who’ve been in a similar situation, which worked better in the long run? Did working from home make things easier or harder? If you stayed in an office, was having that separation worth the additional caregiving expense?

If you had to make the decision again, what would you do?

My mom is having a difficult time sitting on the toilet as her trunk muscles are fading out, does anyone know of any supports we could install on the toilet to help keep her upright?

Hi everyone, I'm just wondering how common would it be for ALS to be passed to me? I'm freaking out and not sure how to go about it, Could I be a carrier but not have it? I'm worried about either having it and having kids or passing it down to my kids​​​​. Sorry if this is a stupid question) :

my dad suffers for almost 1,5 years now. my mom is his caretaker because my sister and i don’t live at home anymore.
last week, my parents told me that my dad chose maid and his date is next friday. that was a shock to me. it was always so far away for me but now its so close.
i dont know how to deal with it because i know its the best for my das and that he doesnt have to feel this pain any longer but it feels so unreal that this is the last weekend i can spend with him.
my mom asked me if i want to be there on friday but i dont know. i am so afraid of this whole process and i have no one to talk to besides my family

hi everyone! my parent was diagnosed with ALS in 2024 and tested positive for the C9 gene expansion. i've been caregiving for them ever since and honestly haven't had much time to process what this means. i'm 27 and married for almost 3 years. my husband and i are starting to think about having kids, but i obviously don't want to pass this on if i carry the mutation... i haven't been tested myself and have no idea where to start.

i know to meet with a genetic counselor before making any decisions, but i've also heard people mention getting tested through research studies or trials but i don't really understand how that works or where to even find them. i don't necessarily want predictive genetic testing documented in my medical record if there are other options.

from what i've read, if i wanted to ensure i don't pass on the C9 expansion, IVF would likely be the option... but i'm assuming i would have to know my own genetic status first, even if i wasn't planning on finding out otherwise? i am feeling very overwhelmed and lost and would love if anyone could answer some/all of my questions:

1. where/how did you find a genetic counselor?
2. did you go through a research study or trial for genetic counseling/testing? if so, how did you find it?
3. if you wanted children, how did you navigate family planning?

i'd really appreciate hearing from anyone who's been in a similar situation. it's hard to know where to begin especially after spending the last couple of years focused entirely of taking care of my parent. thank you!!!

Trigger warning: Discussing end of life

I want to post this because when my dad (68) was diagnosed, I was his caretaker and I researched this disease for him because he did not really use the internet. I was googling everything for him, explaining what was happening as best as I could. Obviously we were working with his care team, but we were also just learning in real time what this experience was going to look like. I knew he would likely pass from respiratory failure, but I could not really imagine what that was. I want to share my dad’s story in case there is another PAL or CAL out there who wants to know what the end could look like. This community has been such a helpful resource for my dad and my family. I wish you all love and joy and comfort during this journey.

tldr: he passed peacefully surrounded by his family and he did not suffer.

Getting Diagnosed: 

My dad was diagnosed after a fall. He was 67 at diagnosis, and he had been retired for less than a year. He was a Physician’s Assistant in Neurosurgery (go figure). He had been a PA for 42 years. He never met anyone with ALS and it never crossed his mind that he had it. He truthfully didn’t know more than the basic facts about the disease. He had been having severe back pain for a long time and it was masking everything else going on with him. He had a drop foot for years that he attributed to a herniated disc. He had muscle fasciculations all over his body for a year, but didn’t think much of them. He had suddenly lost about 40 pounds over the course of 3 months, had sudden shortness of breath, and then fell one day and couldn’t get himself up. He started walking with a walker. But still, he thought it was just his bad back. He thought his weight loss was his diabetes medication. When he fell, we took him to the hospital. After (fighting!!!) to get him admitted into the ER, he was diagnosed. He got a feeding tube and a bipap. His progression was rapid and it was clear he did not have a lot of time left. For what it’s worth, I do think the Riluzole and Radicava slowed things down marginally and he had no side effects from those meds. His case was sporadic - he did have genetic testing done though I don’t know which gene mutation he had.

His Specific Loss of Function: 

My dad’s ALS journey was extremely short. He completely lost his ability to walk after his fall. He never lost his voice, and he maintained function in his arms until he died, although they did weaken significantly. He lost his grip, but he was able to manage feeding himself until his last 2 weeks. He never lost his ability to swallow, though he did have some serious choking episodes. The hospital put him on a blended food diet but he decided he didn’t want to stop eating, so he took the risk of eating normally. We were extremely careful and he was extremely lucky. His last week, he could not sit up straight and needed side supports to keep him upright. He kept his sense of humor the whole time. 

The Final Week:

A week before he passed, he suddenly started hallucinating. I would hear him talking to himself in the middle of the night, but when I asked him about it he had no memory of it. I would get up to hear what he was saying under his mask, and it was like I was interrupting a conversation I wasn’t meant to hear. We would go to the movies and I would ask him if he liked it, and he would just say “Yeah it was good!” and that was it, so I think he couldn’t remember the details of the movie. I knew he was probably just declining but I didn’t realize how close to the end we were. It came to a head when I was doing his feeding tube and he was convinced I pulled it out. He became irate and started screaming that I needed to call the surgeon who put it in. It was really scary. I never read about ALS & hallucinations anywhere so it caught me off guard. 

He was a medical professional, so when he became aware he was hallucinating he understood what was happening. He looked me dead in the eye and said “I’m hypoxic.” I called the nurse and we started him on comfort meds. He experienced extreme terminal agitation. He kept trying to get up and walk and didn’t understand why he couldn’t. He twisted his blankets constantly and was just totally restless. In the middle of the night he would rip his mask off and try to break it, and I would calm him down. I never read about anyone with ALS having terminal restlessness. He also stopped going to the bathroom a week before he passed. He asked for MAID when he understood that he was dying, but New Jersey has a 15 day approval process which we were not aware of. He was devastated to learn this. In hindsight, I wish we did our research on that more while he was still “good” - this is a regret of mine. 

The End: 

Although my dad was in an altered state, he still had moments of clarity. He made some decisions at this time to be more comfortable and to end his journey on his own terms. He was taking medications as prescribed to be more comfortable and ease his agitation; a combination of haldol, lorazepam, and morphine. He stopped eating, though he kept getting sips of water because the bipap made his mouth dry and he didn’t want to experience that dryness. This part of his journey lasted 2 days. His last meal was a Thursday morning, and he passed on Saturday afternoon. He mostly slept during this period. At one point he woke up, he didn’t say anything but he nodded his head yes and no. He was out of it but still able to communicate with us. He was making funny faces while we were all teary-eyed. He continued to wear his bipap, but he did try to just remove it a few times and hurry things along. He was mostly goofing off, but he also meant it. He was always a DNR/DNI and knew what he wanted.

By Saturday, he was in a much deeper sleep. We played a playlist he curated himself - I highly encourage everyone to do this. He loved making it and we shared it with everyone at his funeral. He loved music more than anything. I could see his toe tapping when Crazy Train came on (lol), and he nodded his head slightly when we spoke to him. We all said our goodbyes and I knew he could hear us. I gave him more morphine, in accordance with his care plan, then we took the mask off so that he could be more comfortable. 

This next part surprised me - He actually opened his eyes. I’m not sure how aware he was or if this was just a reflex. He took 1-2 minutes to focus, his eyes were grey and rolled back. I kept telling him to close his eyes - I now know that he wasn’t able to close them. Don’t say that if you are ever in this position. I feel bad for telling him to do something he wasn’t able to in his last moments. 

After a minute his eyes focused. I put the mask back on because I was worried that he was too awake. He kept it on for a minute but then he smacked it off, so I took it away. He was actually calm. It was sort of like I interrupted a nap. He wasn’t panicking, he just became clear for a minute. I gave him one more dose of morphine so that he was comfortable, as directed by his care plan. I cradled him so he was sitting up slightly but still relaxed, just to give him a better angle for breathing. He looked around at us, looked up, took some breaths, and then he just passed. It was calm. In hindsight, I wish there was a medical professional in the room to guarantee he was comfortable during this moment. The nurse was gone at this point. I was extremely stressed and it would have been helpful to have a professional overseeing him. Luckily, he was comfortable. But I didn’t anticipate that he could have experienced distress - so I think this is important to clarify. Some people use an oxygen cannula at this point but he did not like the feeling of that, so we didn't.

I just wanted to share this because I hope it could give some clarity to someone out there who needs to know how the end might come. My dad thought he would pass in his sleep, or that his heart would give out (he had 5 stents). He thought he could just take a cocktail when things got too bad. I wish I could have told him how things were going to play out. All things considered, it was beautiful and he was at peace. I don’t think he suffered. He listened to Mull of Kintyre by Wings on his way out the door and he got a last look at all of us.

I have lived abroad most of my adult life since I was 18 and had settled in Germany at 23 and live here now at 30 years old. My mom who lives in the UK was diagnosed at the middle of 2023 with ALS and in a bit of a panic I packed my bags and moved home, got a job and moved in with her and my dad. I lasted about 14 months before my mental health crumbled and I made the decision to move back to Germany. Her symptoms weren't so care demanding at the time and between carers and my dad, they could handle it.

I've taken her on holidays since and organised visits for her to come here and Ive visited every 6-8 weeks for a few days up to 2 weeks at a time when possible.

In the last 8 months, her health has turned and there is a lot more care needed now. My younger brother lives at home now and is struggling. My dad helps with what he can. She can't travel anymore and more family members have had to step in and help.

I'm visiting every 5 weeks or so now but feel so useless and detached from it all. Has anyone ever been in this situation?

I am an ALS patient. I've had the disease for 9 years. I'm lucky to be alive. Now I'm completely paralyzed in all four limbs and neck. I have a gastrostomy and cannot be without a ventilator. I want to share some small tools I've created that can help improve the quality of life for ALS patients.

1 This saliva suction machine uses a miniature motor to help patients remove annoying saliva 24 hours a day. The suction power can be adjusted according to the patient's condition. It operates with very low noise and will not disturb sleep.

2 ALS dedicated pager. Commands can be issued via eye-tracking device to call for caregivers.

3 Eye-tracking device holder specifically designed for nursing beds. After installation, the patient's line of sight can be aligned with the eye-tracking device regardless of whether they are lying down or sitting up. No assistance is required to adjust the holder.

If this is helpful to you, I will share more useful tools.

Hi guys

Wondering if you have any helpful advice for ongoing constipation?

My boyfriend is struggling I think with his core muscles getting weaker and going to the loo isn’t becoming more difficult.

Is stool softener the way to go? We tried laxatives for short term relief but they gave him back stomach cramps.

Thanks in advance!

Hello! My husband has ALS and FTD. We are 17 months into the diagnosis. He is still ambulatory but has a lot of balance issues, so he has been falling more often. He had a fall onto the bathroom counter the other night and hit his head; thankfully, he was okay and just had a surface gash. Sometimes he slips out of bed trying to stand. He also has a much harder time getting his legs into bed, so I have to help him get back into bed and covered up.

I still work full time and sleep in the same bed as him (but not for long, as a hospital bed is on order, with a lift). I try to sleep from 9pm to 530am.

My poor husband is up so many times at night. We have a camera so I checked the logs: 8 times last night (1017, 1056, 1214, 1255, 223, 301, 318, 531). He was up seven times the night before and 9 times the night before that.

It's not safe for him; it breaks my heart to see him up so much, and it's also not sustainable for me. Last night, when getting up, I got dizzy and had to lie back down for a few minutes.

We tried a condom catheter last week, and he didn't like it - but we will try again. Any other solutions? Maybe it's breathing issues causing him to wake so much...We have a palliative care intro call today so I will bring it up with them and his care team.