Within the last year or so I've had an Aunt and an Uncle diagnosed with ALS. My Aunt passed in April having only been diagnosed the year prior. My uncle was initially diagnosed with FTD and more recently diagnosed with aggressive ALS. Unfortunately I just received the news that my mom has early stages as well.

I have 3 siblings, we're all in our mid 30s early 40s. I'm curious about getting genetic testing done. And possibly joining a clinical trial. I have a friend who's a doctor who primarily deals with dementia patients but she thinks Mayo likely would be interested in our family.

I'm curious if theres anyone else who has gotten genetic testing done due to multiple family members being diagnosed. And have you gone on to do any sort of clinical trial?

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What to expect when basically everything is gone but breathing is still independent? I watch my parent live in this personal hell on a daily basis — fully wheelchair bound for the past year, slowly becoming so paralyzed that they now can’t move a muscle without assistance. No speech, only eye gaze. No eating, only feeding tube. So much saliva, stiffness, nerve pain. FVC is not very high since one year ago — but subjectively they feel breathing is good so they don’t use a BiPap. What can I expect at this stage. What’s next and when. How long is this suffering going to go on. When should my family decide to make last strenuous pushes to make dreams come true like maybe a small road trip to a beautiful place (that will take everything out of everyone to plan, leaving us with no reserves for everyday caregiving work).

My family member is about 1 year post diagnosis and having TMJ issues from incessant yawning which is leading chewing to be very painful and we are more worried than ever about choking. I am seeking resources to read and share with the family on how to deal with choking if it happens as well as any tips on how to deal with TMJ and help get him some relief. Thank you in advance and my hear goes out to each and every one of you dealing with these hardships.

Could creative be a preventative measure for those with high ALS risk?

My dad has ALS, and I genuinely don’t know how to cope with this anymore.
Today was one of the hardest days for me. We had to take him to the hospital, and we found out he has a chest infection. He can barely sleep because of all the phlegm. He keeps getting up to spit it out, and he’s struggling to breathe comfortably.
Watching him like this is breaking me in ways I can’t even explain.
It’s not just the illness itself. It’s seeing someone you love so much struggle with things that should be so simple, like sleeping comfortably or breathing without difficulty. It’s watching him suffer and feeling completely helpless because there’s only so much you can do.
And then there’s the way people look at him. I know they might not mean anything by it, but it hurts. He’s my dad. He’s a whole person, someone I love more than I can put into words, and sometimes I feel like the world only sees his illness.
I know ALS is a serious disease. I know I can’t control what happens. But how am I supposed to accept this? How do I sit beside my dad, watch him struggle, and not feel like my heart is breaking every single time?
I’m exhausted. My nerves are completely worn out. I cry, I worry, and then I try to pull myself together because I feel like I have to keep going.
I don’t want advice telling me to be strong. I’m tired of having to be strong. I just want someone to understand how painful it is to watch your dad go through this.
If you’ve watched someone you love live with ALS, or you’ve been a caregiver for a parent, how did you learn to live with the helplessness? How did you cope with watching them change while still seeing the person you’ve always loved?
I miss feeling safe with my dad. And even though he’s still here, I already find myself grieving things I haven’t lost completely yet.
I don’t know how to make peace with any of this.

My dad had what I believe was axial onset, and then he passed of respiratory failure after only a couple months. I can’t find much information about axial onset online, but sometimes it looks like it is referred to as respiratory onset. But his symptoms didn’t start with his breathing issues, it started with back pain and balance problems, then his walking & respiratory went quickly simultaneously.

Has anyone used this platform to update friends and family on your LO? It’s becoming overwhelming to update what I call the “Looky Loos”, the people who just enjoy tragic stories. They shake their heads, say bless their heart, and go on about their day. But also family who genuinely care. And do you share all the sordid details? How you notice something different almost everyday. And what that does to your own mental health. How much of this should be private and how much should be shared? I also think about future caregivers who have to start this journey from scratch, since there doesn’t seem to be a playbook. Could sharing help light someone else’s path?

Hi everyone. I'm Manu, I'm 23 and I'm from Spain (sorry for my English).

My mom had ALS. She was sick for about three years, and I took care of her as much as I could.And even though she fought like a warrior, she passed away last December on Christmas day(I hate this fucking disease with all my heart)

I had a very strong bond with my mom, when I was a little kid she used to do Reiki on me (some spiritual shit lol). I had no idea what it was back then. Today spirituality is a huge part of my life, and I know that started with her. I also finished my degree only because I promised her I would. I didn't even want to study it, but I did it for her.

Right now, on paper, my life is going better than ever. I left the path everyone expected for me, I started my own business, and it's actually working. I'm about to move in with my girlfriend. Everything she would have wanted for me is happening.

And still there's an emptiness inside me that none of it fills. Every time something good happens, my first thought is that I can't tell her, i might just be having a very good day and the out of nothing, the though that my mom is now dead comes to my mind.

I want to be honest about the part I don't talk about: I've been struggling with nicotine and p*rn addiction. I can see now that a big part of it is me trying to numb that emptiness so I don't have to feel it. It works for a moment, and then everything feels heavier.

I'm writing here because I think you're the people who will understand. If you lost a parent to ALS, especially after taking care of them:

- Did the emptiness ever change for you? What actually helped?

- If you ended up leaning on something to cope, how did you get out of it?

- How do you enjoy the good things in your life when they're not here to see them?

I'm not looking for a quick fix. I just don't want to carry this alone anymore.

Thank you for reading. And to everyone here who is still caring for someone with ALS: I know how hard it is. Sending you a lot of strength and may god bless your souls.🕊️

My husband with FTD ALS is having trouble with the buttons on his pants. I had to go into the men’s restroom with him to help him. I ordered some pants from MagnaReady that have magnetic closures instead of buttons. Has anyone tried these and had success? Are there other options?

Saw this on r/disability and thought it would be great for our group as well. Let's all brag about something from last week. No brag too big or too small. Did you get outside this week? Did you get a visit from your friend? Did you finally get how to do eye gaze? Did you get an insurance approval? Did you have a good BM? Let's hear it. And, in advance, I'm proud of you!

I got our family dog (14-years old) when my mother died of ALS last year. The dog is very dear to me but I am in a situation where I don’t think I have enough resources to take care of this dog. It has started barking when it thinks it’s alone (mornings or evenings) and that is stressing me and the dog of course. The dog eats painkillers and has some minor trouble with balance outside and with slippery floors inside but other than that it is seemingly healthy ❤️.

I love the dog, it’s just killing me that I feel like I’m glued to home all the time and it makes it so hard to plan things. I’m also depressed so the effort it takes to take the dog out is just enormous. I don’t know if it’s living it’s life to the fullest anymore, partly ’cause it’s so old but also because I don’t have it in me to take care of a dog right now.
For a while now I have thought about euthanasia.

I just really hope someone could underestand and maybe offer an opinion or something…

EDIT: what I mean by ”thinking about euthanasia” is that I am considering what options are left since the dog is also not in it’s best health anymore.

Also english isn’t my first language, sorry for typos

I was diagnosed with ALS in November 2025, just three months after my sister passed away. At the time, I attributed my exhaustion to grief and never imagined it was something more.

My symptoms started with atrophy in my hands. I’ve been teaching yoga for 25 years, so I began noticing that I was losing strength in my arms. Over the past month, I’ve noticed some changes, including my legs feeling a little wobbly. I’m also dealing with a lot of thick phlegm, and certain foods are becoming more difficult to swallow. I’m grateful to have a feeding tube, which has been wonderful for me, and I use my cough assist machine twice a day.

My husband has been an amazing caregiver and a wonderful source of support through all of this. Since my diagnosis, we’ve tried to travel as much as we can, making memories along the way. We’ve been to Florida, Colorado Springs, and Montreal. I’m so grateful we’ve had these opportunities, although traveling with all the equipment I need can certainly be challenging!

I’m 74 years old and learning to navigate this new chapter of my life one day at a time. I recently joined this group, and I’ve already appreciated the kindness, encouragement, and support I’ve found here. It’s comforting to connect with others who understand what this journey is like. I look forward to getting to know you all and sharing our experiences. ❤️

I was diagnosed at the end of July. I wrote a poem about how my wife and I feel like we're on an 'island' because our friends and family don't fully understand what this is like. We watch our friends marry, buy homes, and start families. But ALS has shattered our lives. I hope to keep writing poems, as it is cathartic.

The Island

My wife and I traveled to an island
Although not the kind with palm trees and pink sand
The island is a lonely one
Where we stare out at the horizon, at dancing whitecaps

How did we ever get to this island?
The gradual weakening of muscle on bone.
One thousand weekly funerals.
Grief like an hourglass.

Now we savor each kitchen waltz, on the island
Each tennis ball toss to our dog
Rolling dice for progress
Breaths of salt-filled air while the beach erodes steadily

I will plant my feet next to yours
Until the heavy sand climbs like crooked vines
Though there is nowhere else I yearn to be
Than with you on the island.

I was diagnosed with ALS in November 2025, just three months after my sister passed away. At the time, I attributed my exhaustion to grief and never imagined it was something more.

My symptoms started with atrophy in my hands. I’ve been teaching yoga for 25 years, so I began noticing that I was losing strength in my arms. Over the past month, I’ve noticed some changes, including my legs feeling a little wobbly. I’m also dealing with a lot of thick phlegm, and certain foods are becoming more difficult to swallow. I’m grateful to have a feeding tube, which has been wonderful for me, and I use my cough assist machine twice a day.

My husband has been an amazing caregiver and a wonderful source of support through all of this. Since my diagnosis, we’ve tried to travel as much as we can, making memories along the way. We’ve been to Florida, Colorado Springs, and Montreal. I’m so grateful we’ve had these opportunities, although traveling with all the equipment I need can certainly be challenging!

I’m 74 years old and learning to navigate this new chapter of my life one day at a time. I recently joined this group, and I’ve already appreciated the kindness, encouragement, and support I’ve found here. It’s comforting to connect with others who understand what this journey is like. I look forward to getting to know you all and sharing our experiences. ❤️

Hi, I'll go straight to the point, my mom is currently being tested to know if she has ALS, the doctor said she had an 80% chance of having it.

I'm completely devastated, I'm 19 and my brother is just a few years older than me, this hit me like a truck. I try to be rational and think of all possible outcomes even if it really turns out to be ALS, however my body isn't being rational. I can't swallow food, I'm constantly tired, I don't want to do anything although I push myself to do it anyways.

I don't know how to help or what to say. I don't know if I should still have faith in the next results or if an 80% virtually means she has it. I can't imagine that in 3, 5 or even 10 years not having my mom with me.

Anyone has any tips on how to get through this? How to ease things? Sorry for any grammar mistake, english is not my native tongue.

I was diagnosed at the end of July. I wrote a poem about how my wife and I feel like we're on an 'island' because our friends and family don't fully understand what this is like. We watch our friends marry, buy homes, and start families. But ALS has shattered our lives. I hope to keep writing poems as it is cathartic.

The Island

My wife and I traveled to an island
Although not the kind with palm trees and pink sand
The island is a lonely one
Where we stare out at the horizon, at dancing whitecaps

How did we ever get to this island?
The gradual weakening of muscle on bone.
One thousand weekly funerals.
Grief like an hourglass.

Now we savor each kitchen waltz, on the island
Each tennis ball toss to our dog
Rolling dice for progress
Breaths of salt-filled air while the beach erodes steadily

I will plant my feet next to yours
Until the heavy sand climbs like crooked vines
Though there is nowhere else I yearn to be
Than with you on the island.

Has anyone else who is or at one point did take care of someone with ALS have a tough relationship with religion after a loved one was diagnosed with als? My mom was diagnosed mid 2026 and I prayed like crazy for it to be something else. I prayed and cried at work the day before her emg confirmed it to definitely be ALs . I feel like god is playing some cruel joke on us. Maybe god does have plans for everyone but I don’t know man, it’s very cruel.

Maybe I just need to get this out. My (35yr f) wife was diagnosed coming up to 2 years in November. So far it has only affected her arms. It started with her feeling at the time a pinched nerve but now we know it wasn't. She was going to a chiropractor thinking she needed an adjustment. she felt some relief but it was still there. scheduling with the PCP was a hassle and would drag out for months. later on we noticed that her grip strength when holding a pencil was changing and becoming challenging but still pressed on as we had to wait for our PCP at the time to let us know if she was approved to get an MRI. This was especially hard to because she is an artist and her mediums she used were watercolor and acrylic so she needed her hands to work. During the holidays she would make/design Christmas ornaments and find joy in selling/gifting them to others. That November she was at a farmers market trying to paint some ornaments and she had become award something was terribly wrong as she was making lots of mistakes. I jump in during this to help so she doesn't feel like she can't continue. After almost 3-4 months of no movement her boss at the time told her to go to the ER and they'll give us a MRI. Before we did that, we changed PCP and instantly knew that something was amiss sent us to a spine specialist who finally gave us/her the urgent green light to go to the ER to get the MRI. The MRI was performed and instantly they call us to a neurologist. After the hot potato from doctor to doctor they finally gave her the news about 2 weeks later out from the hospital. The news made our heart sink and drop crying for weeks it was hard to return to work. so me, I(37yr m) the husband work as an architectural designer and have been for a little over 10 years. Since the onset of disease, we have had to make a life style shift while trying to have her life her life in this new normal. apart of the new normal is me being the husband and caregiver and I enjoy taking care of her and at all time try not to make her feel like she's a burden or in the way ( sometimes she struggles with that but she my world she could never) with that being said i feel like my firm or companies just don't understand what goes into being a caregiver. To wake up get ready then get her ready as she needs help getting herself ready for the day, i cant make it to work at the time they need me in. Ive discussed this with them at nauseum about this and asked that i can also work later or on the weekends as well if needed. Yet i get called into the meeting room to discuss how i can be on time. Its so frustrating that i wake extra early for this, prep the day before, stay late, cut my lunch time to make up for the time, and yet I get called out and reprimanded. When I get home im so exhausted that im fighting myself to not collapse on the couch to sleep so i can spend time with my wife before i have to do it all over again. ive asked to do a hybrid model like one day out of the week to help but they refused but two employees are currently doing this. my home setup allows me to work remote as my previous job allowed me to do so. im at a loss. i kinda want to leave this job to go somewhere the hybrid model is there or remote but the salary is decent. I would hire a companion care but it has faired out for us or cost way too much. i even thought to go back to my previous employer as they understood and gave me time to tend to her but the salary wasn't enough and I'm the sole provider of our household. This is probably going on too long but i say that i despise ALS for taking my wife's life away slowly and wish people would be more understanding or empathic especially in the work force.

I’m in absolute distraught as I found out my father was diagnosed with ALS yesterday… I legit can’t even fathom that idea but hey whatever situation is given in front of you, you look at it as— and that’s life. I more than anything have been strengthened and reassured again that God truly exists. What’s it worth for a man to obtain the whole world but lose his soul? So as this serves as a big life lesson it’s essential for humans to understand what God is trying to tell them.

As to ALS, has anyone here known or know of anyone actively living with it? He can still walk and move around and he’s already being seen by the doctors he needs to be seen by. However no treatment has been started yet.
Is this a time is of essence here to revert this process or from what I understood “slow it down?” Or is my father most likely going to be go out soon? Promptly put.

Hi guys, i’ve posted on this sub a few times about my father with ALS before but this is for a different reason. My cousin recently also got diagnosed with ALS. He’s only 32 so of course it’s very sad since he’s so young.

He’s severely autistic and almost nonverbal with a very young mental age. I’m one of the only people he likes and actually makes an effort to listen to, and so his parents want me to try to explain it to him. Please no one tell me I should tell his parents/someone else to do it because he really will not listen to them if they try, I promise.

However, I literally have no idea how to do this. I genuinely don’t know how to explain this to him. I don’t think he even understands what death is. And if i tell him he’s going to eventually be paralyzed etc he will probably be terrified

I have such conflicting opinions. On the one hand, it seems so cruel to try and tell him knowing he will struggle to understand and likely become very distressed if he does because he has such little emotional regulation. I’m only 18 so i’ve never had any experience with having difficult conversations with children since his mind is effectively that of a child. On the other hand, it also seems cruel for him to undergo these terrible symptoms that i’ve seen firsthand and not understand why or be gaslighted that nothings wrong with him/he won’t die??

So I guess this is a two part question: should i even attempt to tell him? If so, how?