Anyone here familiar with ALS?

I had a friend who was symptomatic but not yet diagnosed in October and dead by April. I saw her in March and she could not talk and was in a wheelchair. But I believe it is not always that fast.

It progresses differently for everyone. Some people have it happen fast, while others it is more drawn out. As far as living home, it also depends what level of home care the family can/will provide. I’ve seen ALS patients live at home on a ventilator because their family was able to get support (visiting nurses) to help care for them at home rather than going to a facility.

There are some days that are worse than others, but overall it is a progressive disease that gets worse and worse over time.

In the case of my father-in-law, he went gradually downhill. There was no up and down.

One of my clients and a friend developed it at 30. He went on disability, and very slowly declined over the next few years. He declined to totally unable to do anything for himself after about 5 years, then passed away. But he stayed upbeat and positive to the end.

Stephen Hawking has lived with it for several decades, but then he’s a unique case with extraordinary resources available to him.

My former mother-in-law had it. By the time she was diagnosed, she was already living in the Independent Living part of a staged-care community so she had everything in place. Her’s was relentless and implacable…creeping towards new limitations weekly. She was moved to the hospital unit and slowly went downhill Finally, (within two years) with her family’s and doctors’ permission, she stopped eating and drinking. The nurses (who were at her bedside 24/7) fed her ice chips and teaspoons of sherbet. It took her three weeks to die and it was a better death than the ALS would have hit her with in several months’ time. A dreadful disease. There were never any moments of respite.

A fraternity brother was diagnosed early and lived for almost four years. It doesn’t ebb and surge, it’s just progressively worse.

That home health nurse sounds like your friend has less than a month. Unless your friend is in really bad shape, that seems like a rash judgment.

Everyone above pretty much answered the question of progression. It’s a horrible disease.

I wonder if you are asking just out of curiousity about the disease? Or, if you are also asking because you are wondering whether to do the renovations. Are you being paid for the job? Is it just a favor you are doing? I think you should do whatever the family or the woman wants either way.

@JLeslie My labor is freely given. A church would pay for materials. I will do whatever the family wants. Home health had moved a potty chair next to her and the shame she felt and expressed at having it in the middle of her sons living room and being forced by her body into actually using it there was brought me near to tears.
I was just wondering about the nurses (her badge said RN) opinion. I could see what the disease was doing to the lady. She was trying so hard to put up a good front but the fear in her eyes and voice was obvious. From her conversation it seemed like she was on a fast moving downhill slope and that it was getting worse almost daily.
Her legs had given out on her late last week and she had been unable to get up without help since. It pretty well confined her to the chair she was in. She could no longer move her right arm although the hand still functioned. I am not sure when this developed but the result was she can no longer use it to help push herself out of the chair. Her other arm is still working up to a point but she said she could feel it tingling and see the shaking already and knew it would be next.
She spoke of the difficulty she was having trying to get a van so that she and her boys and grandchildren could go places together but you could tell that, even as she spoke, she herself could see the futility of it now.
She was staring into the darkness, realizing her time was coming to an end and trying to make light of an awful, tragic situation.

So very sad. It is diseases like ALS that people fight for euthanasia laws.

There are many modifications available for the bathroom that might or might not have been suggested that are a simple fix. There is a seat that goes over the toilet that raises the seat for the person and it has bars on the side to help them hold on as they get up and down. It helps even if someone is still assisting them.

In the shower you can buy a seat and change the shower head so it comes off the wall and can spray her all over. I prefer that sort of shower head myself. Often these things are covered partly by insurance.

The overriding problem at this point is that is has a 24” door and a 28” motorized chair. She used to ride the chair to the bathroom and had a walker that she would use to go the 5’ from the door to the toilet and bathing could only be done with assistance even with a seat in the tub. Now, even if she could get into the power chair, as of Monday, she can no longer use the walker to go that five feet.

Have the put up some sort of screen to give her privacy? Or, I guess you can take off the bathroom door and bust out the trim around the door and make the opening larger. That’s an easy repair later.