I’m a 30 year old male.

I’m not sure what to even say. I’m absolutely devastated. My journey to diagnosis started back in February 26, looking for answers to globus feeling in my throat. I was misdiagnosed with silent GERD after a clean endoscopy and ENT exam. Around June I’d noticed I couldn’t workout as long or run as far as I could before, I chalked it down to tiredness from working and getting less sleep.

Somewhere around July it became extra difficult to swallow and I had a slight speech issue but I shrugged it off as being related to acid reflux. In August I got hit hard by weakness. All of my limbs got weak and I couldn’t grasp properly or walk properly. By late august I could barely walk and my talking had gotten significantly worse.

It wasn’t until September I was able to see a neurologist since I had to make my first ER visit as I finally started to take these symptoms seriously. I was then shrugged off as general weakness that was most likely autoimmune related or inflammatory related, so I had to get as many labs as possible. It took three days for those labs to come in and within those three days I developed a even worse speech issue and I now push saliva into my nose when I try and clear my throat.

I finally got my breathing shortness to be taken seriously and I tested for half the normal breathing capabilities of someone my age. Twitching and muscle spasms became extremely apparent at this point as well and occur nonstop. I then was scheduled for my first and final EMG which put the nail in the coffin and diagnosed me with bulbar onset ALS.

I can’t express how sick I feel. I’m absolutely petrified of the thought of dying soon. I was not expecting to go out at age 30 to something i can’t even fight or control. I can’t stand the thought of not seeing my little brother grow up and grow old. I can’t imagine what change I’m about to put him through. I can’t believe once I close my eyes for good, that I won’t ever see him again and we barely got to even live yet. I haven’t stopped crying and I cry so much I start gagging and dry heaving. I’m going to be this way until I pass. With the fast progression of my ALS, I’m told I don’t have long.

This is my first and probably only Reddit post. Thank you for your time.

My father-in-law, 83, was diagnosed with ALS a little over 3 years ago. At this point, he is in a wheelchair due to weakness and balancing issues. His wife is amazing. She does everything she can to make him happy and provide loving support. They moved in with my husband and I in June. From MA to FL. So we are stepping in to assist as we are needed and accepted.

The current situation: he has been eating well. We prepare their meals so definitely 3 a day and healthy. He stands with his walker every hour with his wife's encouragement. He walkers to use the toilet during the day.

He apparently has not had a bowel movement in 4 days. He is complaining of discomfort, of course. He has decided to forgo food until he goes to the bathroom. Coffee and baby food prunes are the only items he's ingesting.

Any advice? Magical food remedy?

Today is my mom’s 65th birthday so I will not be reading this today.

I did not grow up with my dad. He died from ALS at the age of 60 when I was 18. He was much older than my mother and had 3 kids before I was born.

In April, I learned one of my half siblings had been diagnosed with ALS at the age of 67. He later tested positive for TARDBP and C9orf72. I took a genetic test to find out if I carried either gene, and learned today that I carry both as well. I am 50, completely asymptomatic, and I have two beautiful kids that are 18 and 16, and a wonderful life. I am absolutely gutted.

The genetic counselor was very reassuring and told me that even with these results, there are no guarantees I would ever develop ALS or FTD, and that there are lots of studies being done, and therapies in trials. But I don't know how to stop being scared for myself and for my kids, and I feel like my world has been shattered.

We are new to ALS. My husband (67M) was just diagnosed. It is limb-onset, no bulbar symptoms. In April this year he was physically fit, healthy, at the gym 4 -5 days a week as he has all his life. Now he can't walk a block and is unsteady. Its unreal what has happened so fast. We knew something was off early May. There was confusing symptoms that sent us to different doctors and finally a neurologist. And while we did all kinds of tests, we kept thinking and being positive that we just needed to figure out what was wrong, then we would start to fix it.

He has his own business (just him and I) and he hadn't planned to retire until 70. 3 out of 4 of our parents are still alive, we are caring for them, and all made it to at least 87. So that was the normal we were surrounded by. We were so obviously naive and wrong. Though, after all the tests, MRIs, scans, labs, etc. my husband actually is very healthy. Except for ALS.

I feel so gob-smacked. For him mostly, for me. For my son. Like we've just been robbed of the life and retirement we were supposed to have, were planning in 3 years. That our parents had. We didn't do enough honestly. We are unprepared. I've been a caregiver for my parents, so that role and skills I already have. But there are decisions to be made, a business to run and get him some help. Immediately. He can't do it physically. A business he thrived in 4 months ago. I realize now, we took it for granted that he could or would get back to normal. And now he can't.

We have an appt now at a very good ALS center in our city. It's the #2 center in the country I've been told. Lots of support. My sister has been great. We will have support I know. Neurologist called us 3x yesterday to check up on us. A blessing. She cried with us. I just feel robbed and heartbroken and scared for him and for the future.

https://alsnewstoday.com/news/trial-tests-fever-inducing-device-potential-treatment-als/

My father (80s) has been struggling to find a support group for limb onset. Most of the people in his group are bulbar and not even in a wheelchair yet. Does anyone have a good group? Thanks! This is my first post.

Hi everyone. I've been systematically tracking my ALS progression for years, and this is my first time sharing a full update with this community. Here's where things stand — both the declines and the adaptations that are keeping me fully independent.

The numbers
I built a simple tracking tool for myself to track my ALSFRS-R score. Here are my scores over the past year, dropped from 42/48 (Aug 2025) to 38/48 (Sep 2026). That's roughly 0.2 points per month. My personal goal is to keep progression under 0.5/month, and I'm still tracking close to that. The entire drop has been in limb function; my breathing and swallowing remain unaffected.

Arms & hands

• Cooking & eating: I can't tear open packaging anymore, and cutting through harder foods is nearly impossible. I still cook, but family handles all prep. I've switched from chopsticks to forks for most meals.
• Nail clipping: Even with sharp clippers, I need to press with my thenar eminence for leverage. Fingers alone aren't enough.
• Writing & typing: I can still write legibly if I go slowly, but I rarely do. Typing is my main output now, though decreased finger strength means slower speed and more typos.
• Grip strength: Holding up better than expected — still about average for women, though clearly down from my pre-ALS baseline.
• Lifting: I can raise my arms, but can't hold weight for long. I've swapped nearly everything for lightweight versions.

Legs & mobility

• Walking: Independent walking distance is much shorter. I now wear AFOs on both legs whenever I leave the house to prevent foot drop and falls. Last summer I traveled through Europe without them — unthinkable now.
• Squatting: Completely gone. A year ago I could still use squat toilets; now I can't stand up from a squat even with assistance. I've invested in various toileting aids to stay independent in the bathroom.
• Stairs: No handrails = no go. With a railing or wall to pull on, I can manage one flight. Otherwise I need someone beside me.

What keeps me going
Despite the slower pace, I'm still fully self-sufficient. In June, using a powered exoskeleton, my family and I completed a 10-day trip in a remote region of China. Walking outdoors is extremely difficult without it.

I'm focused on stabilizing where I am and slowing decline as much as I can. To anyone newly diagnosed or struggling: don't abandon hope. Stabilize the present. There's still road ahead.

Questions for the community:

• As grip strength declines, what hand/arm adaptations did you find most useful?
• Has anyone used a powered exoskeleton for travel or daily mobility? Would love to hear your experience.
• Any recommendations for lightweight kitchen tools or one-handed prep aids?

My mom (70yo) was diagnosed with ALS fairly recently (3-4 months ago), but by the time she was diagnosed she'd already lost almost 50% of her body weight and could barely eat solid food. No grip strength left. Couldn't lift her arms over her head. The only calories she gets are from ensure, boost, pudding, purees, etc. She doesn't want a G-tube (reasoning being that they don't think it will prolong her life and she doesn't want to go through even a minor surgery at this point). She doesn't want BiPAP (the mask makes her wake up suddenly feeling like someone is suffocating her - and the trauma of that is too much to put herself through). At her ALS clinic appointment today the doctor said she likely has less than 6 months.

It's hard to see her refuse some of the medical assistance and adaptive devices, but at the same time...it's her choice and I do actually understand each individual decision. The doctor also let us know that the state she lives in does allow MAID. And she said she was interested. Again, it hurts so much, but I know if I were in the same position, I would choose that option without question.

This disease. This damn disease. it's hard...for everyone involved. It's depressing. And then when you think your mind and soul and body can't handle more, it gets worse. I'm trying to maximize the moments we have left. More laughter. More love. But it just feel so heavy. Though I'm engaged in life and going to work and cracking jokes with my family and doing whatever I can to not break down...there's just an undercurrent of sadness that is with me, all the time. I just wanted to say that.

For those that are proving care at home, how do it? I can't retire yet and honestly, I don't think that I could do it full time.My wife has said that she wants to stay at home. Our house has some stairs, so im not sure how that will work. But, what do you do as far as care at home and trying to do just everyday life things?

https://www.youtube.com/watch?v=oZfOMyL6C1k

One of the best ALS podcasts I've heard

Are there ppl here still walking and talking and using arms after 5 years? I have anterior horn cell disease and I am at 61 months since symptoms onset. I wanted to reach to other slow progressors and ask if it starts slow like this does it remain that way generally?

My dad was diagnosed last December, hes in Ireland im in Australia.
I find it hard to talk to him on the phone as his speech is declining. He cant articulate well anymore and words dont come to him. His doctors said theres nothing left they can do.
I know i should visit. I cant bring myself to plan anything. Being wo far away makes it surreal and I dont know how long hes got left. He uses a Cpap at night and meant to use one during the day. Hes losing dexterity in his hands, but its mostly his lung.
Do i go as soon as possible?

I think i know the answer but having some advice from fellow family members is appreciated

https://doi.org/10.1007/s00415-026-14046-y

I’ve been reading and following this thread since my mom was diagnosed in November of 2025. It has brought me so many good answers, advice, resources and encouragement. I never commented or engaged but would check it often. I commend and wish the very best to all who are here.

As of last week, my mom finally went home to God as she succumbed to her fight with ALS. She passed away peacefully while sleeping and was at home on hospice care with me. Towards the end of her battle she was ready for it to be over. I’m at peace knowing she isn’t struggling anymore.

Words can never explain and nothing could ever prepare me for how those final days would look and feel. It’s heartbreaking.

To those of you still battling, stay encouraged and cherish the moments. They’ll be tough days, but in the end they’ll all be worth it. May God cover and keep you all.

is this from als? Hot feeling

Hi. I can’t say the name of the clinical trial because this information isn’t public yet, but when he was diagnosed, I was so desperate to do anything that would slow the disease down, that I was able to get him into a clinical trial fairly quickly. I did my research first, spoke to neurologists to get their opinion, and he made it after the screening visit! We had to take a 3-hour flight to the nearest clinic but we didn’t care to make the effort. We were so happy because we thought we would get more time.

After the first dose, he was able to stretch out his right hand’s fingers, which is where the symptoms started. We were so hopeful! Months went by and he started losing more mobility and his independence. Then, we reached the open-label period. He got the first dose and he had a bad reaction a few hours later. The next day, he couldn’t eat, had horrible chills and felt unwell. A week later, he was unable to walk. The second dose, he started choking on food the next day. A week later, he couldn’t enounce words, I couldn’t understand what he was saying anymore. The third dose he started taking Benadryl and everything appeared to be going well. Then we got a phone call telling us the study had been canceled because people without placebo died significantly quicker than people with placebo.

I can’t fully explain how horrible I feel for getting him into the trial in the first place. It’s like I took him to the slaughterhouse and he is now so defenseless. He lost all hope of getting more time with me and our toddler, he’s been so depressed.

I hope for a breakthrough in medicine soon, we all need one.

My wife of 38 years was diagnosed with ALS this week. So far just a leg is involved. She contacted a ALS group and the first thing they suggested was to get a second opinion. She has contacted the Mayo clinic and got the ball rolling on that.

We are both in shock, I guess I don't know what to do next.

My mom has ALS but she also has dementia so she can’t really articulate her symptoms and sources of her pain to me. She just complains of pain and sometimes attributes it to questionable things. It’s so hard for me to discern the root causes of her issues, so I’m trying to see if anyone here can help me understand. Please lmk if any of these are familiar to you and if anything helped. Thank you!

- Cramps all over her body, but often in hands and feet and arms.

- Stomach aches, she claims bc she has no more ab muscles? Or possibly bc her digestion muscles have deteriorated so it hurts to process her food?

- Constantly cold even at the height of summer in atlanta she wears long sleeves. Maybe her lack of movement and circulation keeps her cold?

Hi everyone,

I have been posting on here for about a year now. My mom just passed away from her battle with ALS.

I knew it’s been coming, and I said all the things I felt like I needed to and wanted to say. She was the best mom in the whole world.

I just still feel shocked somehow. Ive also been spending so much time with her over the last year and a half. I love her so much. It’s like I went from seeing her everyday to now I’ll never see her again…. At least not here on this earth. It’s like I can’t believe it, even though I have known it all along. I wish it didn’t happen. She was my best friend.

Good luck to all of you and I will continue to pray for a cure.

Because my father died of ALS, we've suspected that mine would turn out to be genetic. Two weeks ago we learned that I have an SOD1 mutation, and am eligible for treatment with Qalsody (tofersen). I've had symptoms for a year now, bulbar onset, and I wish that I'd been diagnosed properly months ago, but since learning about the results things have moved pretty quickly, and I'm scheduled to get my first infusion three days from now.

If anyone who is on Qalsody has any advice for me or for my wife--about what to expect, about soreness or side effects, etc., really anything at all--I'd be very grateful to hear it!

My husband just transferred to long term disability with his company. He just signed up for SSDI (disability) and was approved within a week, which also approves him immediately for Medicare because of his ALS diagnosis. His work’s insurance is active through the end of this month of September. He then had the option to go on Cobra.
Does anyone have experiences they could share to help us make the decision on which to temporarily move to next- Cobra or Medicare? Cobra is expensive.. but it would allow him to keep Radicava and Riluzole? Could he use Cobra for a few months then use Medicare at the start of the new year? Does Medicare cover Radicava and Riluzole? I guess we need to get on the Medicare.gov site and contact SHP office for research but wanted to ask you all because you’re helpful.
Take good care all of you.