[tonyb]

Damn - this + the hospice piece really hits home.

My dad is rapidly loosing his battle with ALS. He has always loved to cut grass. He has very limited mobility (in some ways he is lucky, most people with late stage ALS are basically paralyzed. His progression is respiratory focuses so he is loosing the ability to breath faster than the ability to walk) but with some assistance has still been able to use my zero turn mower and get a little joy out of cutting my grass.

Just this Sunday he reached the point where he can't cut anymore...I guess he is out of salt :'(

[stevenbrianhall]

> I guess he is out of salt :'(

Ouch, this one hurts. I lost my Dad to pancreatic cancer last year and had a very similar experience - he loved jumping on the tractor and cutting the grass on his little farm, but we went so quickly from him asking me do it temporarily while he recovered from surgery to him never getting on the tractor again.

So sorry for what you're going through, and wishing you some peace wherever you can find it. My email is in my bio, please reach out if you need someone to talk to (I have no useful expertise or advice of any kind here, but will gladly lend a listening ear).

[octokatt]

I lost my mom to ALS six years ago, and those final months still haunt me.

When the time comes, make sure your remembrance service has pictures of when he was all of himself, the way you want to remember him. One of the worst things these illnesses do is leave you with final memories of a pale shadow of the person you loved, instead of the fantastically colorful person they should be remembered as.

One internet stranger to another, I hope things go as well as they may.

[Fire-Dragon-DoL]

My father is early stage. Anything I should do/know now before it gets too late?

[tonyb]

The progression is different for everyone so it's hard to give universal advice but I'll try. My dad is progressing quick, it took almost 2 years to get diagnosed. He was diagnosed in May and I'll be lucky if he is still around for Christmas. It's not that fast for many people (lots of examples of people having it for 10+ years) so that certainly impacts my experience.

Make every day count - you don't how how many are left.

If he isn't going to a multidisciplinary ALS clinic I would look into it. Instead of having to go to 5+ individual Dr. appts my dad goes to one big one and sees the neurologist, occupational therapy, physical therapy, respiratory therapist, nutritionist, etc. all in one appointment and they all calibrate together on treatment. It's a long day but far better than managing individual appointments.

It's ok and often better to start a treatment sooner than you might think is necessary. My dad is on an iVAPS (a non-invasive ventilator) to help him breath and that has greatly increased his quality of life and I wish he could have started it sooner. Some PALs (People with ALS) avoid stuff like that because they are embarrassed, see it as a weakness, etc. but then realize how helpful it can be. The biggest example of that is probably a feeding tube. Most PALs at some point have to decide if they want to have a feeding tube placed. The tricky part is that often times by the time they actually need the tube their respiratory function is too low to actually undergo the procedure. The tube can be placed and not used for years, but often time people wait at the time they are able to eat without issue. Unfortunately my dad was unable to get the tube (due to late diagnosis and fast progression ) and eating is one of his biggest struggles (they want him to have 2500-3000 calories a day but he has virtually zero appetite so a meal for him is like half a sandwich). This applies for almost every step of the journey - voice banking, mobility assistance/wheelchair, and even hospice. Most people think of hospice as being for someone who only has a few days left but it is available to anyone with a 6-month or less prognosis and they provide a large amount of support, this is a decision we will likely be making soon.

There are way more support groups/organizations than I would have ever guessed. I'm generally not one to ask for help but these organizations have helped us quite a bit. Team Gleason provided a my dad a portable electric wheelchair basically no questions asked and it was only about a week from applying and having it sitting on his door step. There are local charities near me that help provide everything from adaptive eating utensils all the way up to giving families wheelchair vans. There is also a lot of useful online content - podcast, content creators (@limpbroozkit on IG for example), etc. that can be very helpful.

I'm happy to answer any other questions, publicly on here or email in my profile.