r/ALS

So I got misdiagnosed with my ALS for two years and now they also missed advanced bladder cancer. This is the premier teaching hospital in my state of Colorado. They found blood clots in my lungs, so I’m on a blood thinner. The clots are probably from the cancer, they said The pulmonologist also ordered a cough assist but I might not get it before I leave the hospital.
It’s really good that I got my feeding tube last week because I came home and I actually started not being able to swallow pills and food so we’re using it for my nutrition and medication. I’m glad I did it.

So far I have gotten on top of having a hospital bed, a custom wheelchair, a shower buddy chair to get me into the shower because I have a shower tub, I got a Hoyer lift, I bought a pure wick and I’m waiting for a second in pure through my insurance whenever the fuck they get that done , and now I have to get the cough assist.

What else is there and then I might need you guys?
ALS United is giving me a communicator iPad this week because I’m already losing my speech.

I am hiring a second caregiver before I get out of the hospital because I need 24 hour coverage or you know like close to 20 hours coverage or something like that because I am pooping at night in my diaper when I have no help and is causing horrendous UTIs

Has anybody dealt with this pooping situation at night and how did you deal with that? I am trying to think of creative solutions to this because of my lymphedema and ALS t and losing the ability to control my pooping, and I’m already in diapers all the time

I am in my third year with This illness I am now pretty much a quadriplegic And cannot assist my family for Transfer Having said that When I do get transfer to my Desk To Browse the Nets On my laptop I get really tired after 1 hour And ask to be transferred back to my bed At the moment my partner and her sister Transfer Me by hand Betits become increasingly difficult And my partner Has a Soul back Constantly I was thinking of Investing into a hoist Such as a H o y e r Hoist These cost quite a lot of money And I'm not sure how much use I would get out of it I'm asking for your advice And thoughts About this investment

I have lost 2 family members to ALS, one of whom was my dad. I am planning to donate (and encourage friends and family to donate) to an org for research funding purposes. I can’t decide which organization would be best to go with as far as research goes. Target ALS, Project ALS, ALS Network, or somewhere else?

As of May 1, 2026, Tanea Brooks, known in the wrestling world as Rebel (or Reba) from AEW and TNA, has announced she has been diagnosed with terminal Amyotrophic Lateral Sclerosis.

This disease is 💩

we, of course, knew it was terminal. but i thought we had more time, i thought we had at least until the end of the year. he got his diagnosis december 15th 2025. but he’s already gone. after being intubated, he was in coma for 2 days, and now….he’s just..gone. i have his birthday presents, wrapped up and ready to go, but..he’s not here. what do i do with these gifts? i didn’t get to say the goodbye i wanted to say. one of our last conversations was him being terrified of being trapped in his body, without any way to communicate with the outside world. and i am, truly, relieved that he doesn’t have to suffer through his body being an uncontrollable prison. but selfishly, i wish he were still here.
i don’t know anything anymore. i use to have such a strong faith in God, i use to find such solace in Him. i no longer believe in anything.
i am broken beyond repair. i lost my soul mate, my best friend, the person who completes me…and i don’t know how to continue on living..

Two referrals from my neurologist. Two denials. Three evaluations. Four grievances. Four grievances denied. One Doctor lied about Medicare not covering. Complaints filed with the state and federal government. Two arbitrations. Two Grievance Managers. Another Doctor lying that he approved it when he didn't, multiple time. Doctor submitting approval incorrectly.

Sorry, Kaiser, I lived long enough to fight your lies and stall tactics until you had no other way to deny me. I know you were hoping I'd be too sick to fight for what I need. But today I won. If you can call it winning.

We are with UCLA and while the clinicians are top tier, it can be challenging to communicate with them directly is MyChart.

Wondering if any others are a bit better in timely responses and a general sense of ongoing support.

After 2.5 to 3 years of facing the challenges of ALS, my father passed away peacefully, surrounded by his family a couple of days ago.

I’m very sad still but I am happy he is released from this mortal world and is able to be free of ALS.

Thank you for everyone who has helped me personally through their posts and replies over the years. I don’t think I’ll be too far away from this page and will always provide any insights I can to help others.

ALS is a devastating disease and while I feel robbed of my Dad being here with my family for more time on this earth, I know it wasn’t meant to be and he is at peace now.

He is no longer suffering and he faced it with strength and dignity.

I wanted to share this with all of you and wish you peace, love and calm as you navigate your journey with ALS.

God bless❤️

My dad was diagnosed with bulbar onset ALS in January 2026, his slur started around June/July 2025. Since hearing of his diagnosis I just can't help but feel helpless. He is dealing with it in a much better and more positive way than I am. Everytime I see him I feel as though I'm saying goodbye and everytime I'm not around him I feel a sense of panic and guilt that time is passing and I'm not there. He's in his early 60's and just one year ago was full of life and was completely healthy. Watching him deteriorate like this is tough and as a male in his early 30's I feel as though I need to be strong for him and the family but I can't stop the tears from pouring whenever I'm left to my own thoughts.

We have a daughter and are expecting our next child soon, she loves him and he of course loves her, but it kills me to know that she won't remember him as she grows up. Sorry for the long post, I've been following all of your stories for some time, the way in which you are all dealing with this battle is inspiring, whether it's you or a family member that is suffering from this horrible disease. I wish you all the best

Hi all,

My mother was diagnosed with ALS, and her condition worsened significantly after she suffered a stroke earlier this year. She is now unable to eat or drink and is already having difficulty breathing. She will soon undergo a PEG procedure, and our family is doing everything we can to raise funds so we can give her the best quality of life possible.

Even with all of our incomes combined, we are falling short after repeated hospitalizations and the cost of therapies, medications, and doctor’s fees.

I am also seeking advice on where we can share our GoFundMe. I understand that some subreddits require a certain amount of karma, which I currently do not have. Any guidance or suggestions would mean a lot to us.

Thank you so much for your time.

My 36 year old husband and love of my life who was diagnosed with ALS nearly 2 1/2 years ago said he wanted to "just die" tonight. He has been struggling with losing his abilities to do anything on his own. He is near the end of being able to eat his last bite, and he absolutely loves food. It is so heart-wrenching to see and experience. He can't scroll on his socials or do fantasy sports on his phone, which he really enjoys. He needs me to move every part of his body parts for him and help him with everything. His speech is nearly gone. He had the most beautiful voice.

He has pretty much refused any assistance devices except for the motorized wheelchair, only for transferring morning and night or going to a medical appointment. As well as refusing to go on any public outings due to embarrassment and shame of his condition. He was also a minor local celebrity and does not want to be seen by anyone who may recognize him. He has wanted to enjoy as much as he can of his 'normal' life and just spend our time together. I can only imagine how hard it is for him and scary it must be. To be cared for constantly. Your mind is there, but you can't do anything else.

We only just found each other 5 1/2 years ago, and we were in love immediately. We moved in with one another and my now 2 teens 3 1/2 years ago. And then got married 8 months following the diagnosis. It was a magical day. We are so perfect for one another, as if we waited our whole lives to find one another. We have been so incredibly blessed and thankful to have found the love that we have. But time is too short.

I feel like I have been punched in the gut and having my heart broken a second time following the diagnosis, hearing him say that. I feel a lump in my throat, and my heart hurts. I just want to run into a room and cry. I am just trying to comfort him the best I can and be here for him. I just don't know what more to say to him besides, I love you. I don't know what other pep talk I can offer, if any.

I wish there was something I could do to heal him. I wish I could make him physically strong again. I wish I could take his pain away. I wish I could keep him alive. I wish I could keep him with me forever.

My father died from ALS two years ago. It was a horrific experience for him. He had an intermediate number of repeats (30) for ATXN2. Since then, I was tested and also have 30 repeats. My husband and I went through the long, emotional, and expensive journey of IVF to do pregenetic implantation testing for the gene. We transferred one of our “healthy” genes embryos in February and I am now 13 weeks. We did the CVS test to confirm whether the fetus is all good to go and I just got the results. Repeat lengths of 22-29. Which leads me to believe my 30 repeat gene has morphed into a 29 repeat gene. Which means that she doesn’t have a risk of ataxia but does have a risk for ALS. No one warned me that this could happen with a gene that passed the PGT testing. My husband and I did all of this to avoid passing on the gene and now here I am, faced with either terminating or potentially passing along an ALS risk. The only upside is that she won’t have ataxia. But I don’t want her to get ALS either or to have to go through all of this someday to have kids of her own who are healthy. The hard thing about the ATXN2 gene is that it’s just a risk gene. I know that at 30 repeats, I have something like a 3-7% risk of ALS and I’m not exactly sure what the risk is at 29 repeats.

What would you do?? Should I terminate since the whole point was to avoid this? Or is the risk worth it? We do have other embryos to use, though I have no idea if those also have morphed genes now.

ETA: apparently the 29 repeats came from my husband, not me. Holy curveball.

Hello!

I will soon become a caregiver to 70+ senior patient with progressive ALS. He is bed bound, has limited speach (whisper), gets food through PEG. I am supposed to feed him, give him meds and change his position to prevent pressure sores + some basic hygiene.

I am very new to the situation - I am trying to get as much information to be prepared. I am asking for tips, resources and any advice you guys can have for me.

Thank you.

I’m a French student (20F) who applied to study at Durham for a year (2026-2027) and I got in. I have to give an answer very soon. I always dreamt of going to Durham.

But my dad got diagnosed with ALS about 2 weeks ago.

(ALS: a severe neurodegenerative disease that leads to progressive paralysis of muscles involved in voluntary movement. To date, no curative treatment exists)

He started to have symptoms about 2 years ago but we had no idea that it was such a terrible disease.

He can’t walk alone and when we go out he has to be in a wheelchair. It’s very hard for him mentally as he used to be a triathlete and now he can’t even walk properly. He started a month ago to struggle to talk…

Our family situation is pretty weird too. My mom divorced my dad 3 years ago because well he was such a bad husband to her (he treated her like sh** basically). I always resented him for it. But now the situation has changed. I still resent him for the way he treats my mom who accepted to let him move in with her, in HER house, to take care of him bc of his current situation. Now that my mom is back into his life, my dad sometimes becomes again the terrible husband he was to although they are divorced and my mom only does this bc he is ill and that he has no family or anyone to take care of him. My mom is just extremely kind and my dad takes this for granted. He sometimes says things like of course she would come back to him, or he gives her very strict orders to do this and that. And okay!!! he can’t do them himself, and I know it’s very hard for him too, but seeing my mom treated like this feels like a stab in the heart every time. But when I see my dad cry bc he is in so much pain, it’s also a stab in the heart for me.

I have younger brother who doesn’t help at all, and older sister who doesn’t live at home anymore.

Basically my dilemma is : if I leave for Durham, my mom will be left alone with her ill ex husband who still has the nerves to treat her like a kid/slave/object (and now caregiver) in her own house + I don’t know how my dad’s heath is gonna evolve, and I’m scared to miss potentially his last days.

Although I really want to go to Durham, I feel like I just can’t leave my parents like this.

What do you think ?

Hi everyone,
I’m not really sure how to write this, but I wanted to share what my family is going through.
My mom has been diagnosed with ALS, and life has changed very quickly for all of us. Watching her lose her strength while still trying to stay positive is really hard, and as her daughter I’m trying to support her as best as I can.
Right now, day-to-day care and medical needs are becoming more difficult to manage, but we’re taking things one step at a time.
I just wanted to share our situation with people who understand what this disease is like. Thank you for reading, and I wish strength to everyone here going through something similar.

Thank you all for the advice and help through the journey of caring for my father. Early symptoms showed up spring of 2022. He was diagnosed in 2023. And he passed in 2026. He was unwilling to be at peace and defied the disease right up until the very end. Nurses told us he would pass “today” and they said that for 4 days. As always my dad did things on his terms, and passing wasn’t different.

I’m grateful to all in this community who offered assistance when we needed answers.

For 3 years I’ve always known what the end would be. It was never going to be different. But knowing that early on hurt a lot. But eventually it became a blessing to enjoy the moments that we could.

Slow but steady Progress in biomarkers. This is important for Dx & evaluation of pharmaceutical concepts and efficacy in CTs & EAPs.

The identification of three latent biomarker profiles further supports the presence of biologically meaningful ALS subgroups.

My mom has bulbar ALS. She lost her ability to swallow and speak early on, but thankfully retained the ability to use her hands (albeit she's very limited). Because she can still somewhat use her hands, our private insurance refused to cover the tablet and eye tracking software for her to communicate on the day she loses her ability to talk with her hands.

We went around in circles with our insurance for months. Denial after denial for the eye tracking hardware and tablet (among other things). One day our caregiver overheard us and asked if we ever looked into a private social worker. I did not know those even existed.

The fees were fairly reasonable and they went to work pestering our insurance on our behalf. They also submitted applications for grants we didnt know existed or even qualified for. Just hiring them to stay on hold with our insurance and peppering them with legal questions was worth the fees alone.

If you cant afford it, dont be afraid to contact a local government social worker or adult services support. In the US there is a huge stigma about social workers and using them. Their entire job is to connect people in need to resources governments and private institutions give to those that need them. Use them. You pay for their services anyways.

My mom died of bulbar ALS. She had genetic testing. It was negative. However her aunt passed from ALS. I saw my aunt today. She told me hasn’t felt well in a year. She thinks it’s from Covid. Her voice is horse. She is slurring. She told me she is super emotional and can’t stop crying. She is coughing and choking on water. She is unstable. She has always been very healthy but she sounds and looks just like my mom did when she started getting sick. It was haunting.

I am almost convinced she has bulbar ALS. Should I say something to her and also what does this mean for me and my family? Does the medical world just not know enough about this terrible disease to have a grasp on genetic causes?!?! One common theme among my mom, her aunt and my aunt is that they have all had EXTREMELY stressful lives. Could this factor in?