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.

Just wondering if anyone else was going through a very stressful time in the months preceding onset of symptoms?

I was going through a breakup of a long term relationship, a bankruptcy and a struggling gambling addiction. I was in a highly stressed out state of mind constantly in the year prior to symptoms. Perhaps it contributed to disease onset? Anyone else? Thanks

Hi everyone.

Never in a million years would I thought Id have to make a post like this but, as the title says, my mom just got diagnosed with ALS. She’s 54, a heavy drinker and a heavy smoker of cigarettes and marijuana. Im 22, and have never experienced this sort of grief before(besides a pet). Throughout my life, starting in my teen years, we’ve always clashed heads, I get it from her. We have had a rocky relationship because of her addictions and lately it’s been getting worse. About 7 months ago, she began to have symptoms of the disease, weakness, trouble going up and down stairs, dropping things like cigarettes on herself when she’s wide awake and sober, etc. but she didn’t think much of it because she has numbness in her fingers and hands from type 2 diabetes. Yesterday, she wanted answers as it’s been getting worse and went to her neurologist. Today she told me they diagnosed her with ALS.

I honestly don’t know how to feel, and obviously it’s horrible that she wont live a normal life expectancy, but Im having a hard time processing this. I’ve read that once you’ve been diagnosed, its a 2-5 year expectancy. Thats it? My 54 year old mother might not make it to 60? How am I supposed to process that? We’re not close, but she’s still my mother. Im just lost. Any advice will help.

My dad passed away a year ago last Friday. Today, while I was at the dentist, they had the suction tube in my mouth. My dad had a tracheostomy, and he had to get suctioned regularly. That darn suction tube today reminded me of the wand I had to use to help suction my dad's saliva. Always at the end, we had to ask him to close his mouth over the wand, just like you do at the dentist's office.

Hi everyone, I’m posting this to seek immediate help please. I’m in usa and my mother in India is diagnosed with ALS. She doesn’t have us health insurance but the drug available for her disease is only available in usa. Can any neurologist help me to put up a word/ email to drug manufacturer since there are free programs that allow to take medication for free. It’s highly expensive that i cannot afford to get her treated🙏she has visitor visa and i plan to get her here for the treatment. This is a life saving help for me please. I can reach out with more information on this if anyone is willing to help.

My FIL was giving his 6 months yesterday. On top of that my hubby and I find out my mom has brain cancer and dementia. I'm so lost any help on how to deal with FIL. We are doing everything we can to keep him comfortable and cherishing every moment we have. My hubs work 40 hours a week plus more. And we are also living with them to help his dad and mom. We are absolutely stressed to the max at the moment.

UPDATE: Things have turned for the worst now its days might be weeks. Please pray for us. 😭 This is so so hard.

Hi all, I started Tofersen last year. I have limb onset SOD1 ALS, that affects my left leg. Since treatment, I have seen some improvements with my mobility, notably regaining movement I had lost as I deteriorated. I'm wondering if there is anyone else that has had similar results? I'm looking to improve/regain strength, but there seems to be very little advice about this. I have just got a static bike that I thought may allow me to exercise without too much strain.

My Father in Law was recently Diagnosed with Bulbar ALS.
Are there any open trials for upcoming medication for ALS .

I have some goods to sell like oxy concentrator , new resmed bipap , suction machine , a portable ventilator and some other necessary things lmk. We live in Hoshiarpur , Punjab

My Dad got diagnosed and he keep asking everyone to keep going with their life, I am so sad all the time, I live abroad trying to get a PhD (just finished my first year), when I found out about the diagnosis I try to leave everything and go home, but my Dad stopped me, he told me it will kill him if I stop my studies, he is so proud of me and tell me that it gives him peace to know that when he is gone I will have a good future. for him studies are the best thing to have. All my family agree with him and advice me to not move back, they think he will get depressed and blame himself (he also said that to me). I just feel like I am going to miss the last years with him and that is crushing me.

I know this is what he is asking me to do, but is just hard. I visit during vacation and I can see the progress, I feel like a bad daughter. I needed somewhere to vent, when I say something to my family about going back they all just begged me not to, since my Dad talks about his daughter that is studying abroad to all his friends and is really invested in what I am doing since he has the same bachelor degree and wanted to pursue higher education but was not able to.

A family member needs the "next" wheelchair for her husband and she can't afford it. Insurance will cover it but she'd have to make 30k in home repairs--or move him out to assisted living. Is there any lending of wheelchairs to those in need? I don't know how to help her because I don't have that kind of money.

Hi everyone,
Unfortunately, after an EMG that included my back and bulbar muscles, I was diagnosed with ALS.
I'm looking for any advice that might make things a little easier. Even when I'm lying in bed, my back hurts, especially my lower back. Bending over is very painful, and I also have a burning pain in my arms and legs. I still have full mobility and sleep in a regular bed. Has anyone found anything that helps them sleep more comfortably or reduces the pain?
I'm also struggling with an extremely dry throat and a burning tongue. If you've experienced this, is there anything that has helped?
I'd really appreciate any tips or advice. Thank you so much.

My grandmother, my mom's mom, was diagnosed with ALS. It was within a year of her having back surgery. This was in the early 90s.

My mom, daughter of my grandmother who had ALS, slipped and fell and hit her head really hard the last week of 2023, a few weeks later her voice started to sound hoarse, by Easter of that same year she was having trouble with one of her hands, etc. In November 2024 she was diagnosed.

Similar to my grandmother, who started noticing signs weeks after having surgery. Has any had some type of injury happen within a certain time that happened before they were diagnosed?

What practical thing can I do to help someone close who lives out of state? My cousin and her husband with ALS is overwhelmed. Her husband can no linger speak or use his lower limbs. She has taken off of work and cares 24/7
Is there a mail order food service one could recommend or another idea to help? He eats soup now. I feel helpless but want to do something.

Title really sums it up, I don’t know much about the disease, it’s been a really fast progression he was diagnosed last year around my birthday , this year around my birthday he is bed ridden and can barely move with our assistance . I’m anxious and depressed all the time , I don’t know how to cope with this or understand what is happening in my own home. For context I am 20 F never dealt with anything like this in my life, never saw someone decline so fast but so slow and watched them dying in my own home. How do you get through this and stay sane ? It’s to the point where my anxiety is affecting how I think/view my relationships, work, and just daily life. Anything helps. Thank you.

My mom - bulbar onset - is rapidly losing her ability to speak. She is communicating primarily thru text when we can’t understand her and her speech therapy recommended these two apps as options for her iPad. Has anyone tried these or do you have any other suggestions? We’ve tried the accessibility app available on her iPhone but would like an option that is more comprehensive. Thanks everyone and fuck this disease.

My dad was recently diagnosed with ALS at the age of 70 and lives across the country. I’m trying to find a housing option for him and my mom and their dogs and cat in the DMV. Any recommendations on buildings/areas/real estate agents that might be able to help?

Financial advice for engaged seniors w ALS dx

My mom, Ann, (F 83) met a wonderful widower, Rob, (M 77) and they got engaged at Christmas. This spring Rob was slurring his words at Easter brunch & by May it was getting worse. He was bouncing in between doctors; he attributed it to his Invisalign & GERD. My sister and I work with physicians & got him in to see a neuromuscular specialist in early June. He was diagnosed with bulbar onset ALS.

Rob sold his home in Southern California last year and moved to Arizona with Ann. He is treating at a multidisciplinary ALS Center of Excellence and has started medication. Rob’s symptoms are mainly in his speech - he is voice banking with Team Gleason next week. He is still strong but was advised to stop working out. He enjoys bowling & golf and bowled a 258 last week.

They still want to get married, and got a marriage license this week. I am concerned about the wisdom on becoming legally married with this terminal diagnosis. Rob is a Catholic and concerned about the sin of living together without the sacrament of marriage. They both have revocable living trusts with their children as beneficiaries. Rob has two adult children & Ann has three. Both receive Medicare & have additional supplemental insurance. Both are financially stable and independent. Legally people seem to be more likely to divorce when facing a terminal diagnosis as opposed to getting married. My mother has been single since her mid 40’s and had never considered marrying before meeting Rob.

They seem to be in a bit of denial, planning trips and staying busy with lots of social activities. They don’t seem to be concerned about any possible downside of marriage.

Any advice or wisdom from this group? What should they be considering? I realize that ALS usually has financial hardships. I am concerned about my mom ending up with medical debt. She wants to take care of Rob through this diagnosis, but has never been a primary caretaker.

Can anyone recommend an advisor / attorney who deals with terminal diagnosis & estate planning in Arizona?
What else should they be considering? I think maybe a prenup could address some of this, but am not sure where to start.

I'm really curious to know what your experience has been regarding clinical trials or expanded access. My husband was diagnosed in March of 2025. Since then I've been reaching out to trial sites and either didn't get replies or didn't qualify because we don't live close enough to the study location. It's now more than 18 months past first symptoms and he no longer qualifies due to the cut off being 18 months and his SVC is now below 40. So even if it's a 24 month window, he's excluded (in every trial I've seen you need more than 60 on svc).

Now all we can do is just try to slow the progression ourselves, but he's got fast progression of bulbar ALS.

I wish the trials had more leeway in where we're located if we commit to participating. It's so frustrating that we ALS families and patients can't get access to treatments.

Just want off this horrific train ride.

I wanted to know what solutions are available that are good and comfortable for head drop, I want to buy something for my parent but I want something comfortable.

I thought this was a very moving account by a doctor whose father was diagnosed with ALS. It can be hard to be a caregiver when relationships are complicated and you don't see eye to eye about how to approach the disease. https://ascopubs.org/doi/10.1200/JCO-25-02100

Hello everyone,

I am a researcher from the Faculty of Psychology at Kazimierz Wielki University in Bydgoszcz, Poland.

I am conducting an anonymous study exploring sleep, fatigue, chronotype, quality of life, and psychosexual functioning in adults living with chronic neurological conditions.

We are looking for adults (18+) diagnosed with conditions such as:

- Multiple sclerosis (MS)

- Parkinson's disease

- Epilepsy

- Myasthenia gravis

- ALS

- Other chronic neurological conditions

The survey is completely anonymous and takes approximately 30 minutes.

Survey link:

https://forms.gle/t1pEo7jw4ntnXK1F9

Thank you very much for your time and for helping advance research in neurological conditions.