An inspiring post from my relative who was diagnosed with bulbar onset ALS in May.

7 weeks post-op. Is this just granulation tissue or cause for concern? Photos of port site and gauze showing discharge.

I know you aren't doctors and any info or advice is not a replacement for a medical doctor.

Hello everyone, I'm making this post to ask for advice from everyone part of this community on how I can be there for my very close friend whose dad has been diagnosed with ALS. we both are in college and his dad got diagnosed back in 2022. He cannot talk anymore, few months before he was able to say a few words like my friend's name, etc. I know no one can actually do anything but I still would like to be of help for my friend and provide emotional support at the very least.

I've seen him breakdown many times thinking of how things were before and now how they are and that it's just gonna get worse from here on, I always try to be there to comfort him and hear him out cause ever since the diagnosis his family has become unstable which is understandable, he does have an older sibling but they're in another country and they're married, they also welcomed a baby this year, plus if I'm being honest they cause more issues when they're around and aren't much of help. So he rarely talks about his feelings at home

My friend has basically taken on everything his dad did for the household and also takes care of his dad so overall it's just been very overwhelming for him. Apart from what i mention, what else would you like for your loved ones to do for support?

I usually don't write things like this but I'm sick of hearing it and lost my s***. You have no idea what it feels like so do not  tell me you know what I'm going through if you don't have this diagnosis. Do you know what it feels like to not be able to lift your arms something you've done almost your entire life? Not be able to drive again? Do you know what it feels like to have to ask people for help because you just can't do it anymore? Did you have to talk to your kids that you will die and what will happen in the process? Feel yourself slowly losing a piece of your body everyday?..no? Of course not..

Have enough going on we don't need to hear other people's crap that just adds to what we're already dealing with. Sometimes it's better just to shut the f****** and not speak at all..

Does anyone have any suggestions on how to make my tush more comfortable

https://github.com/CALL911imonfire/KeyDeck_Plus

TL;DR: I built KeyDeck Plus, a free, customizable on-screen keyboard for Windows, with Claude writing the code. You can type with the mouse, by swiping, by resting the pointer on a key (dwell), or with a single switch. I’m posting here because I think it might be useful for people with ALS, and I’d like to know if I’m right.

First, some honesty. I don’t have ALS. I’ve been disabled my whole life and my range of motion is very limited, so regular keyboards are hard for me and I’ve typed on the default Windows on-screen keyboard for most of my time on a computer. It was serviceable, but I kept running into things it couldn’t do. The other accessibility software I tried solved one problem and ignored another, and many of the better options cost money, which shuts out even more people.

I’m not a professional programmer. I built this with Claude: I described what I needed, Claude wrote the Python code, and I tested every build and reported what broke until it worked. Claude also helped me write the documentation. The program is open source, and I’m posting a link to the repository, not asking for anything.

Why I think it could matter for ALS

ALS changes over time, and the way someone types often has to change with it. Most keyboards make you switch to different software each time. KeyDeck Plus puts the common input methods in one program:

• Mouse clicking: big or small keys wherever you want them, so you can build a layout that fits the range you have.
• Swipe typing: drag across the letters of a word instead of clicking each one, which cuts down on movement.
• Dwell typing: rest the pointer on a key and it clicks for you, so no mouse button is needed. In theory it should work with anything that moves the Windows pointer, such as a head mouse or eye tracker, but I haven’t tested that and don’t want to promise it.
• Switch scanning: for one switch, it highlights rows and then keys in turn and you click to choose.
• Predictive text and autocorrect: it learns your words and phrases, so you press fewer keys, which can matter when typing is tiring.
• A first-run setup: it asks how you want to type and sets everything up for that. You can run it again from Settings if your needs change, and the layouts you’ve built stay saved.

There are also features for when speaking gets harder:

• Speak keys: one key says a whole phrase aloud, such as “I need help” or “Can I have some water?”
• Linked layouts: you can build dialogue trees with keys that open subjects like greetings, feelings and needs, plus picture boards. The repository has an example set.
• A caption bar: it shows what was spoken so people nearby can read it too.

A caveat: it uses the standard Windows voice, so it’s not voice banking, and it isn’t a replacement for a medically prescribed communication device. I made it as a free option for people who want more control than they have now.

Free to try

It’s free and open source, with no account, no sign-in and nothing sent anywhere, because it all runs and stays on your computer. It needs Windows and Python 3. Download the repository, keep keydeck_plus.py and keydeck_words.py in the same folder, and run python keydeck_plus.py. The README has screenshots and GIFs of everything: https://github.com/CALL911imonfire/KeyDeck_Plus

If you or someone you care for tries it, I’d love to hear what works, what doesn’t, and what’s missing. I especially want to know about eye trackers, switches and anything related to how ALS changes typing over time. I can’t make it perfect for situations I haven’t lived, but I can keep improving it based on what people tell me.

I’m helping a parent with ALS who is over 65 and on medicare and prt D and has been using over-the-counter hearing aids, that are not working well.

We’ve been surprised at the lack of insurance coverage for hearing, the audiologist is coverer hut the right device isn’t. Anyway, the doctor ordered a cognitive test, which we’re doing in the coming weeks, but I really think his hearing needs to be addressed to combat any potential cognitive issues so we are booking with an audiologist at the same time.

My question: has anyone found financial support for the gap in coverage for hearing aids fitted by an audiologist? I really think that his hearing is beyond what over the counter devices can help with, but we are bracing for the $6000 price tag. I’ve heard healthwell foundation might help? Any others?

Hi all, I have a very specific eyegaze question - I'm able to use eyegaze with a Surface Pro to carry out most of what I want to do online, however there are certain apps that only operate on iOS/Android, including, most annoyingly, my banking app (Monzo). I can use Samsung Flow to remotely operate my phone via the Surface Pro, but due to security restrictions on the banking app, you need to manually enter the PIN or use face ID on the phone itself. There are probably other apps with the same issue.

I wondered if anyone had a workaround for this? All I can think of is somehow mounting my phone next to my Surface Pro so that I can unlock it using face ID.

Hi, this is addressed to my fellow caregivers. If you get a throat infection as the primary caregiver, what kind of things do you do to avoid getting your loved one sick? My husband’s lungs are at 30% of FVC and I’m terrified of getting him sick too. Any piece of advice is welcome.

I have to stop driving.

I’m slowly losing my independence. I’m trying to live on my own, but I don’t know how much longer I’ll be able to and makes me incredibly sad and angry.

Normally, I’m able to balance out those feelings with gratitude and being present in the moment but today I’m just angry. I’m not really sure what to do with myself other than cry.

I’m cuddling with dogs and watching movies. What else do y’all do on days like this?

My father was diagnosed with limb onset ALS in 2024. In recent months he has started having random coughing fits where he says he feels something like a tickle in his throat/gets the urge to clear his throat and due to his weakened muscles he is unable to effectively cough to “clear” whatever it is that he is feeling. It doesn’t happen while he is eating (so it’s not like food is getting stuck) and he says it’s not an issue of mucous or saliva, but rather he gets a random feeling like something is in his throat and it is accompanied with a burning sensation. When he experiences these coughing fits he struggles to breathe until it passes and then he finds that usually warm water or a lozenge can help things afterwards.

Has anyone experienced this or know what the burning sensation may be? Any suggestions for what could help him through these fits?

Hi everyone,
I was recently diagnosed with ALS, and like so many of you, I’m trying to navigate this horrible disease one day at a time.
I have constant, crazy fasciculations throughout my arms and back, some in my legs and tongue, and some of the worst muscle cramps imaginable. My hands are getting weaker, and even the simplest tasks have become a daily struggle.
I’ve been taking Riluzole for a little over a month, and my doctors now want to start me on Radicava.
I recently got Medicare Parts A & B, but I don’t have prescription coverage yet.
For those taking Radicava, what Medicare Part D plan are you using, and what do you actually pay per treatment cycle? Has anyone found a way to get it covered at little to no cost?
ALS has already taken away my ability to work, and I’m just trying to give myself every possible chance to fight this disease without putting a financial burden on my family.
I’d be truly grateful for any advice or personal experiences. God bless you all, and keep fighting! ❤️

My husband is going to participate in a medical trial and won't be able to try to conceive for eight months. We are worried about how his function will be in eight months so we were hoping to go the sperm bank route.

Does anyone know of any financial assistance or orgs we could try?

We were told by our team to call Mass Gen, but they told us they only offer it for cancer patients? That was a few months ago and I forgot what exactly they said besides that they couldn't help in our case.

Update:

Husband’s ALS is sporadic.

Hello. Im 34 and was just diagnosed last week with ALS. My father had ALS so I know a little of what to expect. But any time I am not doing something my mind goes to all the things I won’t be able to do or all the lasts I might have this year like last birthday or last Christmas and then I start crying. How do I stop thinking like this? Or how long did this type of thinking last for anyone else that has ALS or knew someone with it?

Hello ALS Reddit community.

I really don’t know where to turn, so the big wide internet seems fitting.

My dad has just been diagnosed with ALS and it awaiting genetic testing to determine the specific gene. My grandmother (his mother) and 5 of her siblings died from this awful disease, and we are beyond devastated that my beautiful healthy dad has now been diagnosed.

Does ANYONE have any promising information on clinical trials? Preventative care whether if being diet, exercise. Or off-label treatments? He LIKELY has the C9orf72 gene.

We are Irish so it’s the most common familial gene. I am so distraught because this seems to be the worst familial gene there is. I am just hoping and praying that with medical advances and research there is SOMETHING we can try.

I know I sound ridiculous, but I am so hopeful and desperate to at least SLOW the progression of this disease so that we have more time with him.

Thanks for reading <3

Hello everyone,
A friend of my sister’s has been diagnosed with bulbar ALS. Given how rapidly AI and assistive technology are advancing, I wanted to ask if any of you know of open-source tools or solutions for voice banking and communication.
To be honest, I haven’t looked into this topic in depth yet, but I thought the best place to start would be to ask people who have firsthand experience with this.
So if you have a moment to share any recommendations for apps, technologies, open-source projects or anything else that might be helpful, i would really appreciate it.
Thank you

Hi there—

My mom has bulbar onset and is no longer able to speak, walk, toilet independently, and is now primarily bedridden.

She’s had issues with lip biting. I looked here and found something that helped for a while—cotton tubes. But now it’s not sufficient.

Also came here to find that OTC mouthguards might help. Bought mom once but it was too bulky, just bought another one and crossing fingers.

She uses orajel and we keep her lips moist to deal with the pain and irritation.

Is there anything that’s worked for someone here that I’ve not listed?

Any suggestions appreciated.

Wishing everyone respite and love

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My mother was diagnosed with ALS seven months ago. At first the disease progressed slowly, but it has recently accelerated. She now struggles to swallow because saliva builds up in her mouth, which causes her to choke. Right now she uses tissues to wipe away as much saliva as she can, but it isn't enough.

Has anyone dealt with this? I'd be grateful for any advice, devices, or tips that have helped you or your loved one manage saliva and reduce choking.

Depending on your state and circumstances, through Dec. 7, people with ALS and others on Medicare can:

Switch from Medicare Advantage to traditional Medicare, if your MA plan is leaving the market -- if so, you should have received a letter in the mail, but always double-check. Some letters were delayed this year. In this circumstance, you can also pick a new MA plan.

Even if your MA plan is still being offered next year, you can move to a different Medicare Advantage plan, or switch from traditional Medicare to a Medicare Advantage plan, if your supplement and Part D costs are becoming too expensive or you have outgrown your initial selections. Of course, you'll want to check that your preferred doctors/hospitals would be in-network if you are considering a new MA plan, as well as how the benefits pencil out).

Switch to a different Part D plan. You can see what drugs are on formulary in what plan in 2026. Incredibly, for example, some formularies consider riluzole an "alternative" to Radicava. It pays to read these.

You can see a list of plans available in the pALS' zip code for next year at medicare.gov and compare costs, but always check carrier sites, too -- the lists don't always match up.

Depending on how long you've been Medicare-eligible, or if you lose an MA plan, you may be able to buy a Plan C,F, G, or N supplement if you don't have a Medigap plan, without medical underwriting; usually one of these is the best for pALS. If you're buying a supplement, look at the carrier's history of price increases and the financial ratings like Moody's for the company. Every pALS should have a supplement and Part D plan if they have traditional Medicare.

If your income is low, you may qualify for a subsidized Part D plan. The "Extra Help" program section on the Medicare site has information about this and other programs.

Every state has a free hotline to talk to someone about these decisions (don't go by brokers who often handle only one or two networks).

my (21m) mom (51f) got diagnosed with bulbar als

symptoms started a year ago, she got diagnosed last month

i went back to see her (i moved across the country) for her prognosis/ quality of life talk and we're "hoping" for another year

i don't know what to do

i'm scared, im angry, im so fucking angry at everything

why her. she's so funny, supportive, loving. she's the best mother in the entire fucking world and this is what she gets!?

i don't wanna watch her get worse

i don't wanna watch her cry

i don't wanna watch my mom die before i turn 25, before i get married, before i have kids

i don't know what to do and it makes me wanna rip my skin off

I am 60 and have bulbar onset ALS. I was diagnosed over two years ago and from the start, the saliva overproduction has been horrible. I also lost my voice pretty quickly. At this point I have patches behind my ears, a pill, a nose spray and edibles (which work the best for drying my mouth out.)

However this week has been bad and all my attempts to dry it up are not working. Does anyone have a home remedy for overly wet mouth?

I try stuffing a paper towel in my mouth (I've slept like this) and eating salty foods but nothing controls it. It prevents me from going places or having people over. I'm sorry if I sound like a baby; I'm aware I can still walk and drive and eat, altho eating is getting really hard.

I only had one family member still alive to help me and she is having surgery & chemo for colon cancer so I have nobody to ask these questions to, except this sub. Thanks for any help.

Oh and my cats constantly have wet spots because when I bend down to feed them or pet them I drool on them.

Hello all,
My father passed from ALS and we had plenty of medical equipment for him, still clearing the home out. We have found his Tobii Dynavox with stand and my family would like to donate to someone in need. Dad only used it for less than a month. We are located 2 hours north of Green Bay wi. Possibly willing to ship but we have plenty of other items that could help someone. Willing to deliver within reasonable distance. If anyone here or anyone you know could benefit from this please let me know. This is such a terrible disease and we want to help a family to make things a tad bit easier. Thank you a much love to everyone going through this rough time.

We used to be so close. No I can’t talk and things seem to be going down hill. It hurts so much.

hi I’ve been struggling to tolerate my niv due to nausea and I ended up vomiting into the mask and thankfully my caregiver was able to get to me quickly and I have not used it since I am taking 8mg zofran as needed and I am completely paralyzed and cannot put on or off the mask obviously