r/ALS

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.🕊️

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 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?

Sorry I hope I can vent.

My best friend on the planet. Just told me he finalized his will today.

He had to have his brother and partner speak for him and he used his Samsung phone to write.

He can barely walk and he has lost most talking.

I don't wish ALS on anyone.

I'm sorry it's been an emotional day. This is happening so fast.

7 months ago we were skiing. Now he can't walk or talk.

We had hoped we could have one last run together.

The. It was I don't care I'll hang out in the lodge just to be there.

To I'm not going to be able to travel.

He is a retired airline pilot.

When we say it's amazing how time flies.

ALS brings that into reality.

Again I'm sorry. Just have to vent.

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.

I'm curious to know how you informed people of the ALS diagnosis. Outside of family & close friends (who you speak to regularly).

With permission (of course!)...

I am debating on whether I should share my mom's diagnosis on social media, what to say and how to say it. Most of my friends know her (and are also fb friends with her). Reaching out to old family friends & acquaintances individually feels awkward.

I don't want to wait for her to pass away before our friends know that she's sick. We're facing the hardest year imaginable. She and I could both use some extra prayers, love & support. 🥺

Thoughts?

Did you share this online?

What did you say?

If possible, copy & paste your message.

How was it received?

How did it make you feel?

Sorry, lots of questions. We've never known anyone with ALS.

As always, Fuck ALS.

Apologies if I don’t follow all rules, very new to Reddit. So my dad died from MND 20 years ago. My dad was a foundling so we had no family history. I decided to do a dna test thinking I’d get a lovely ‘long lost family scenario’ but no, opened a big can of worms. Found out my dad’s parents had quite a history and he had 6 full sisters and 3 half brothers. Now to the reason for the post, it turns out there’s a lot of family members who died from MND including his mum and 3 sisters and many others along family branches. So looks like me and my brother have a 50/50 chance of having it. My brother has decided to ignore it but I am struggling, I have 3 kids did I put them at risk ? Future grandchildren ? I’m 55 now (my dad was diagnosed at 53 died at 57). Do I throw caution to the wind and live like there’s no tomorrow or plan for every eventuality? Tbh I’m not sure

I’m having my first genetic counseling appointment soon. My father was diagnosed in 2021, and then his brother was diagnosed in 2023. He got genetic testing, which came back positive for the C9orf72 mutation.

It’s been 5 years of worrying about whether I carry the gene too, and I’ve decided I don’t want anyone to know I’m getting tested. If the result is positive, I’d hate for people to become overly aware of every weakness or stumble, whether it’s disease-related or not. I don’t want this to be a relevant topic in my life until I show signs of the disease, and that includes the people I love seeing or treating me differently.

If it turns out negative, I plan on telling the people I love and celebrating.

Not even my partner knows I’m getting tested. I don’t want anyone but me to go through this, because I know firsthand how painful it is.

Have you been through a similar experience, or do you have any advice? It would be really helpful to have someone to talk to about this.

Hi guys, I (22f) lost my father to ALS three years ago. He was diagnosed when I was 11, and passed away when i was 19. My grieving process hasn't been easy at all, given I had a strain relationship with my dad. It wasn't always like this though. As a child, I remember seeing my father as a superhero. I would stay up at night as a kid waiting for him to get home from work to be awake when he would tuck me in. I remember when my mother slapped me in the face, I immediately called my dad who was at work to cry to him, and he scolded my mother on my behalf. However, when he got sick, slowly, I started growing resentment towards him. I hated seeing him weak, and his temper got worse with being terminally ill, so we would get into so many arguments. He also didn't cope with his disease well, as he was deep into denial and used anger towards us. I was also such a brat about providing care to him. I felt suffocated by it all. And even back then, i would feel so guilty that I acted this way towards him because i knew he was going to die soon. Every year, as a new year resolution, I would set a goal to be kinder to my father, and to fight less with him. Anyways, I feel like a monster for the way I treated him. He was dying, and it should've been the only thing that mattered. All our heated fights, all my resentment, all the inconveniences shouldn't even compare, and yet, all i could do is go deeper into my anger. He passed away unexpectedly, as I woke up one morning and found him unconscious in his wheelchair home alone. It's like I knew he was sick, but in my head, I got so used to him being sick after 8 years and it never actually occured to me he was near death. So it was an unexpected death in a way, meaning I didn't get to say goodbye. I don't even remember what was the last words I said to him the night before. I never got to apologize to him for all my harsh words over the years and I never got to tell him that I had misdirected my anger and pain towards his disease onto him. I never got to say how much I loved him and how important he was to me, even when he felt like he was just a sick man living at home. I never thought how much his presence meant to me until he was gone. I feel so much sorrow for adding onto his pain during the time he was alive. I understand that I was a kid, but it's like consicously I knew he was going to die and that he was sick, and yet I still decided to give into my anger. I really hate this disease. I feel so helpless because I will never get to say anything to my father ever again. and I hate myself for how I coped with his sickness. And I hate the healthcare system for never providing any social support to me and my family. Not once did any healthcare professional speak to me or my siblings. It sucks. I am so mad at the world, and I am even more mad at myself. Looking back, my father was my pillar. and I miss him so much. this sucks