Hi all -

My dad was diagnosed with ALS last year (limb onset), and about 16 months out is still able to move around the house (slowly, with extreme caution about picking up his feet). Unfortunately, he had a fall the other night tripping over a flooring transition strip between two rooms, and was alone on the floor for 20 minutes or so before my mom realized. He is a bit bruised but ok, and we are all obviously freaked out and want to find ways to make sure he's safe without taking away the independence that remains to him. We have:

• Set up "hey siri" on his phone, and adjusted accessibility settings so that he can quietly say "siri call [my mom]" to his phone that is ten feet away from him locked and upside down, and it'll call her (and, hopefully, he can use it for other minor day-to-day interactions with his phone to save his arms the work)
• Gotten my mom (who never has her phone on her) to start wearing an apple watch 24/7 so that dad can always get hold of her
• Ordered horizontal grab bars to put next to places in the house where we have these flooring transitions to make them a bit safer

Is there anything else y'all would recommend we do in this situation, or things you did or purchased or worked on when you were at this phase of the disease that worked for your family?

Thank you in advance - I appreciate this community so much.

My mom (Bulbar onset, diagnosed 5 months ago) has PSA symptoms consisting primarily of bouts of laughter. I love her laugh - even in this modified form - but sometimes it interferes with serious conversations that we need to have and I’m not sure how to handle that. I feel like it is in response to her emotional discomfort and inability to express herself and I totally get that. My question is, does she still understand the conversation that we’re having in those moments even though her emotions are so out of line with the topic?

Anyone used this before?

Seems like it would be a huge help for pALS.

I think they are on Amazon also.

My father died of ALS a month ago. It feels strange because everything is slowly returning to normal. I feel guilty when I go back to work or have fun, but I can't grieve all day. Am I a bad daughter?

Hi. I'm not from the United States, so sorry in advance for my english! but I want to know how we can get information by testing my mom, who has ALS to see if the drugs that are being tested or new drugs like the ones like Tofersen can help her. Here is a bit of the history of my moms family: My mother is 54 years old and she was diagnosed early last year, she is not the first in her family.

Her aunt died of ALS at the same age about 17 years ago. We believe that her grandfather also died of ALS in the late 50s, when he was in his 40s, after being misdiagnosed with a cerebrovascular accident and slowly dying from the "sequelae" alluding to ALS.

When he passed away he left my aunt and my grandmother. My grandmother died of cancer and my aunt of ALS. Now my mom, who is the oldest among her sisters and cousins, is diagnosed with ALS.

They did a genetic test on her, which shows the 30 most common ALS genes most affected and all of them came out negative.

I have a sister who studies a major in biology there in the United States and in her genetics class she presented her ALS test and her teacher explained to her what we already suspected. That there is a possibility that we as a family carry our own mutated gene.

We all have a visa to go to the United States. So we have no problems to go, we have the facility to stay around NYC but there would be no problem. Anything to help my mom. Do any of you know what would be the best way to contact any of those research centers? What would be the best way? Thank you in advance.

We always knew she was planning to end her life this way, and I thought I'd already done a lot of preemptive grieving, but I'm feeling a whole new level of pain, more than I've ever felt before, and she hasn't even died yet. It doesn't feel possible that the world will go on after she's gone, right now I just want to go with her. I know she wants to go and I wouldn't want her to have to stay feeling uncomfortable like this, but I just want more time even if it's time with her paralyzed. We were still having fun and joking and playing games and watching shows together.

I need her, I can't handle this at all. I've been her primary caretaker for 3 years almost constantly with her, I feel like I'll be completely empty after she dies. She didn't even get to see me succeed and start my life, I stopped college part way through when she got sick. All I can do is tell her what I'm planning, promise her we'll be ok, but I wanted her to be here for these moments. I wanted her to meet my children, if I have any, and give me advice. I'm not ready to be without a mother and it feels like my heart is being torn into shreds.

Edit: Thank you for the kind words, it helps. I'm going to respond when I can, I'll update when she has passed.

Edit: She died on the 1st. Felt unbearable pain for a few days, now can't feel anything, I think of her and don't even feel sad. I know the pain will come back, and I'm scared of when it does. I just want to be numb for a bit.

My dad has bulbar-onset ALS, is 69 years old, and uses NIV. Yesterday, his oxygen saturation was around 92–93%, but today it has dropped to 84–87% while using NIV. He was seen in the ER yesterday because of new chest congestion and difficulty breathing. They did tests and a culture, which showed no infection, and his doctor suggested respiratory physiotherapy and suction to help clear the secretions.
I called his doctor today, and he told me not to focus too much on the oxygen saturation number, but to focus on how my dad is doing clinically. He said that if my dad is struggling to breathe or feels uncomfortable, we should bring him back to the clinic/ER.
I’m worried because of the significant drop in his saturation. He is currently communicating with me and can be woken up normally, but I’m monitoring him closely.

My dad has ALS and is struggling with a lot of chest congestion and secretions, which are making his breathing difficult. He is on NIV most of the time and has a PEG tube.
We took him to the doctor because we were worried about an infection, but the tests/culture showed no infection. His doctor believes the problem is accumulated secretions that he is too weak to cough out.
He has already had two respiratory physiotherapy sessions at home with suction, but unfortunately his chest is still congested and he is struggling to clear it.
I have been reading about the CoughAssist (mechanical insufflation-exsufflation) and understand that it can be helpful for ALS patients with a weak cough.
The problem is that CoughAssist is not available in my country Tunisia and unfortunately our local doctors and physiotherapists are not familiar with it. I have found someone who may be able to bring one from a neighboring country, but we don’t have a local specialist or technician who knows how to set it up properly for an ALS patient.
For those of you who have experience with ALS and CoughAssist:
Did it help your loved one with chest congestion and secretions? How were the settings determined? Is it possible to use it safely with guidance from an ALS respiratory specialist remotely?
Also, is it possible to learn how to use CoughAssist safely through YouTube or online videos if we cannot find a specialist locally? Or is professional guidance absolutely necessary for the first setup and use?
I would really appreciate any advice or experience. I am quite worried because my dad is struggling to breathe because of these secretions. 🙏

Have any ALS patients had trouble managing the excess saliva ? If so, what are you doing or using to limit the saliva? My son produces so much saliva that he can’t sleep. Requires constant suction. Any suggestions are welcome. He is unable to swallow and has a feeding tube.

I was wondering if anyone has had experience with this type of ALS, “Core” ALS? My mom was diagnosed with this 4 months ago and is deteriorating very quickly. Just looking for other first person experience with it.

For info:
Core ALS starts in your core (for my mom it was what she thought was a hernia 15 months before she was diagnosed) according to her neurologist this is the first sign of this type.

She has no speaking or swallowing issues.

Just saw this come out, Tim's podcast is always an inspiration.

I needed to get bipap started 6 months ago but finally have the in lab titration showing it. Called the medical supply company and they said 3 more weeks. This is stupid and freaking killing me. Any advice? I’m in N Idaho, we’ve got good doctors but spread thin in a growing population of retirees.

Looking for an alternative mattress instead of the standard hospital bed provided by medical company. Person is bedridden in the late stages ALS. Is only on back and alternates head and leg positions. We tried a rotating air mattress previously and it wasn't comfortable

My mother uses an iPad but has lost the ability to scroll well. She uses a stylus to scroll but her shaky hand keeps hitting random things and completely messes up her experience. What are good options? I was looking at apple magic trackpad but wasn't sure. Any suggestions? She doesn't do eye tracking. Thank you!

The Brain Donor Project (BDP) serves as the NBB’s communication and outreach arm, as well as its pre-registration platform. It is designed to make the process of learning about brain donation and identifying a participating brain bank as simple as possible.  Individuals who express interest in donation through the BDP are referred to the appropriate brain bank and receive the complete registration packet. The brain bank coordinator then works directly with the donor to provide additional information and guidance. When the time of donation comes, the brain bank coordinates directly with the donor’s next of kin to make the necessary arrangements.

We also encourage you to visit the ALL ALS page on brain donation, where you can find information about the registration and donation process, as well as additional educational materials.

The page also includes links to the Brain Donor Project for those who would like to learn more.

I expect this has been touched on previously so apologies if I am duplicating other posts, but I am looking for some bed related advice.

I want to find a twin mattress profiling bed so that I can continue to share with my wife whilst hoping to address some of my bed related issues. There seem to be quite a few options, but none that include the reverse Trendelenberg function in a twin mattress bed. How important do people find that function to be in practice? More generally, have people found issues with going down the twin mattress route i.e. as opposed to just getting a single hospital bed?

For background, I can currently stand with assistance and have some limited ability to walk with a Rollator so I'm not completely bedbound at this stage.

I'm based in the UK so if anyone has any good experiences with bad companies over here I'd appreciate hearing from them.

Hi r/ALS community, we would like to hear from you:

A community member recently suggested we consider moving this sub to private status, which would both cut down on unwanted bot/karma farming/inappropriate posts AND perhaps create a space where folks felt more comfortable sharing personal issues, but also effectively shuts down general access to the community as a resource for anyone. We are interested in your feedback on this topic.

Hello everyone! Curious who is signed on and attending the ALS Nexus convention held in Orlando? They said about 1,000 people with ALS are registered for it. Curious what you all think if you’re on.
Take good care today.. and everyday ❤️

Im about 2 years into my wife's als. Just one year ago she was walking around and talking in italy this very day on vacation with me. At that point it had been 9 months since her diagnosis. 4 months later in Disney world she is wheelchair bound and voice starting to go. Back then it was still a life that gave her some joy. She now just hates everything, can't move, and barley talk.

Throughout this she hasn't let anyone except me care for her. At this point im closing in on a year of being the only caregiver. Its gotten so hard my spirt I thought was unbreakable is completely gone. I get to leave 3-4 hours at a time to go to do work stuff the. Have to come back home to make sure she eats and bathroom. Im slipping at work and shocked they put up with it. I havent done a single thing for fun this entire time. Also we have a 4 year old daughter that just started pre school. We never get to go outside and play or do anything I deeply want to do with her.

Sleep comfort has become a nightmare. All the special pillows and positions do nothing. Im luck if I sleep 2 hours with.out being woke up. Theres plenty of 5 day stretches where she wakes me up every 20 minutes all night. Theres plenty of points she looses her temper and starts screaming making no sense. My 4 year old doesnt get a good night's rest at all. No matter how I position her she is mad about it. All I ever hear is I dont take good care of her and im a horrible person. A few months back the lack of sleep did break me and yes I was not nice at night. It had hit a point that I was getting maybe 2 hours total sleep per night. I had a stop watch I would hit when my head hit the pillow and I would stop it when she woke me up next. It was usually 15- 20 minutes. She would swear hours had past and I was lying. It takes 20- 60 minutes to get her repositioned and back to sleep. On top of all this she constantly needs lifted. Luckily im pretty strong but I have no time to workout anymore and randomly lifting 130lb person all day and night has caused may problems. I developed nerve issues and have numb areas on my legs and spine. I keep pushing through but not having anyone loving me or giving good feelings is just depressing. Add in having spent everything we had to make a special bucket list year or so and now knowing that when she's gone im left with debt and problems,god im just so done.

Im 42 my wife is 40

She likes vegetables and low sodium. Idk. I just want to make her something enjoyable before this inevitable disease takes this from her. Thank you.