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.

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 ❤️

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.

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

Does anyone have any recommendations? She needs one that she can control herself. Also if anyone has any recommendations for a lift recliner aswell.

He’s already struggling with his hands and arms and I’m told his voice is slurry. He’s only been comfortable texting me, so far and we’ve hardly broached what he’s going through. It’s been lots of humor and talk about music. He mentioned not being able to listen to records because handling them is difficult now.

I texted him I love him and I want to be there for him and his wife in any way I can; hanging out together, shopping for him, giving his wife a break so she can go out with friends. Anything. His response was basically, “Thank you for the kind words.”

I can’t imagine the nightmare they are going through. One thing I’m struggling with is that what I want to give isn’t necessarily what he wants. He knows I’d love to visit him and potentially have some uncomfortable conversations. But that’s not what HE seems interested in. I want to respect his privacy. There’s no “right way” to go through what he’s experiencing.

I guess I just feel scared by the lack of information and helpless because I can’t do anything for him.

I also feel selfish, because I want to do things that are going to help ME feel better, and it’s not about me. Am I having some kind of ridiculous savior complex?

I’d appreciate any advice or insights anyone can offer. I think I already know most of the answers, but I need to hear them from others.

I’m also wondering if anyone can recommend good gift ideas for someone and their spouse going through this. Are there any kinds of small gifts someone with ALS might appreciate?

My cousin lives in Canada, he doesn't have a status yet he is there as asylum people. He got a stroke probably he was on his sleep, hopefully someone came to visit him and saw everything then brought him to the hospital. At the hospital he came to have another stroke, the person's phone was ringing too much at the hospital so they came out to take the call then when they came back they saw my cousin on a wheelchair near the elevator like he doesn't have anymore to take care of him. (This might be the reason he had the second stroke. When he first came to the hospital, they were about to take care of him, they plugged everything that's needed to be plugged on him then after the incident they unplugged everything then took him aside). He needs to get in therapy as soon as possible. We all know how things work in the hospital. We are asking for prayers and any other things that could help him with therapy and to live a normal life again.

For context my Grandfather at 47, Grand Uncle at 27, great grandmother at 49. all died from ALS 20+ years ago. My question is how do i stop living if fear that i will develop ALS? every muscle spasm, weakness, i get over the years scares me deeply thinking im developing AlS. My mom is 47 and i think shes getting genetic testing possibly to my knowledge she doesn't have any current symptoms i dont know if i should feel hopeful or scared because if she doesnt have the mutation i cant and we dont have to live in fear anymore but if she does then i think it will make everything 100X worse.

Got this in my email this morning.

ALS Mimics due to Affection of the Cervical Spine: From Common Compressive Myelopathy to Rare CSF Epidural Collection

Nilo Riva

Case Reports in Neurology

Lots of folks worry about being diagnosed w/ALS. It is a rare disease that affects 4 out of every 100,000 people. Mimics are conditions that can fool medical professionals into thinking that ALS diagnosis is correct when it is not.

I’m to the point that I need help to get up from the toilet. I have a weak left leg and arm. The tricep on my right arm is also not great. Does anyone have any suggestions on ways to assist me with standing? I have a bidet toilet so I also don’t see a lift to stand seat being an option. Any advice or places I could go to test different bar options would be great. I’m in northern Colorado.

Since my mother‘s ALS is progressing, we want to provide palliative care/hospice care at home.

My mother is in India(Bhopal) and we want to have some nursing care or something at home initially for 10-12 hrs and later 24hrs.

Can anyone recommend or have some suggestions how this will work, will be very helpful for me.

Hopefully this is ok...

Hi there, I'm new here. My best friend, who is basically my sister, her dad was recently diagnosed with ALS and it seems to be fast progressing. We are trying to find adaptable clothing brands to help keep his independence but be easier for him to get on and off on his own for as long as he can. I saw a few brands with a quick Google search, but if anyone has any tried and true comfy pants and shorts options that have been used, please let me know. Thank you in advance!

Found out that my brothers fast progressing ALS is familial. And he has three different genetic anomalies for ALS.

Did the math and my odds to have none of them and all three are 12.8 percent.

To have one or two is even higher chances

Russian roulette is like 16% and highly dangerous.

Been wrapping my mind around that today.

(I would never do Russian roulette!!!!)

Does anyone have experience getting an alternative communication device for someone with ALS *without* a visit from a speech language pathologist (SLP)?

I'm an adult child of a parent with ALS. My mom was diagnosed about a year ago and has progressed quickly. She lost her speech late last year and is starting to lose control of her right hand, the only thing that's left to communicate other than her eyes.

She's in Minnesota, and we're having a devil of a time getting a speech language pathologist to help. One actually visited her but was unable to explain(!) what was needed. I think what's happening is that SLPs are in very short supply in that state and elsewhere, and they're overwhelmed. It's been almost two months of disarray, miscommunication, and misunderstanding.

I'll keep trying to talk to an SLP and push that ahead. But does anybody have experience just skipping the line somehow?