FIL still walking, but for how long?

[andrewf]

So, I've posted here a few times. My father in law is an ALS patient. Diagnosed in June 2022, officially, but there have been signs present for 2 years. A slow progression. Foot drop started about a year before, in 2021 before some foot surgery. He is 78.
Here's the thing...its now 4 months later and the man is still walking with a walker! Slower, shorter distances (though he goes up to 75 feet for dinner when they visit our house). Uses an exercise bike for 15-30 min daily.
He has, actually, a good attitude and is self aware. Occasionally curses his condition and then immediately apologizes for it. His daughter, my wife, is an only child. We have 3 kids, and live about 10 miles away. See them often. I worked closely with PVA shuttling documents back and forth to get his VA benefits started, among other logistics.

But, there does seem to be this....barely perceptible slow downward trajectory. I know its being Captain Obvious to say that, but I keep waiting for some dropoff in function and there has not been one. While his lower left leg is just nothing anymore, he can still dorsiflex the right foot.

At this point, I'm wondering how the progression goes? Do people just wake up one day and say "nope, cant stand at all anymore" or will he just walk shorter and shorter distances? His voice seems, also, just perceptibly lower and fainter. But he hadn't been sleeping well and he got some meds to help out that situation and is better on that front, he told me. They want him to see a cardiologist too. He's adamant he doesn't want medication to fix a heart problem to prolong his life, and I'm right there with him, it makes logical sense. BUT, maybe fixing any underlying heart issue will simply get the oxygen flowing and improve his overall life he has?! I mean, no problem swallowing, hands and arms work fine, etc etc. So we will see, he is not too difficult attitude-wise. Every time I wonder if FTD is entering the situation, he says or does something that makes it clear his lucidity is in no doubt. So that's good.

 

[Nikki J]

Everyone is different. If he is still walking 75 feet he probably won’t wake up tomorrow unable to stand unless you are seeing struggles to rise and he is leaning very heavily on the walker. But you never know and it is always best to be prepared for that next thing in his case looking into a wheelchair

I see your point about the cardiologist and you understand his attitude too. doing things ( walking , dressing, eating) all take more energy for PALS. Heart issues could make that worse true. Would he consider going to the cardiologist to see what they say? It wouldn’t obligate him to accept anything. However if he would not take anything no matter what it would be a waste of his energy. My mother wanted absolutely nothing done. We respected that even though it was sometimes hard

 

[Mary2]

For us PALS function seems to decline and then one day he just can't do it. In May my PALS worked the wheel chair in the hotel at my son's wedding. Then in June and July he was still working the wheel chair but having difficulty. And then one day he couldn't manage it at all.

 

[affected]

Sadly this disease is so unpredictable we just can't make any projections.

Like Nikki has said, it could be worth seeing the cardiologist so he can make an informed decision on what heart issues, if any, are happening, and what the suggested plan is.

I think it could be worth ensuring he has made a living will and discussed this with his EPOA so that his wishes can be clearly advocated for. If he had a fall and was unconscious, would you all know what to do next?
That discussion will allow you to cover his feelings about the cardiologist and anything else that could still come up.

It can help you all feel you have some control, rather than wondering 'what if' or 'should we'.

I hope that helps.

 

[andrewf]

Thank you all for the helpful feedback. I went with them to the Cardio today. He had had atrial fibrillation in the hospital with COVID, doesn't have it now....they wanted to put him on anticoagulants. That's cardiologists' answer to everything I think! Anyway, as a group we decided that as a falls risk, he'd do more damage injuring himself on blood thinners than his risk of a CVA, which is like 2% with his daily baby aspirin.
He knows his situation and is very level headed. He said..."honestly, I'd rather just go of a heart attack at some point than go downhill with this forever." He doesn't want to be at that point now of course. I said..."That makes very rational sense and I'd feel the same way if I were you!"
One of the interesting situations is that with ALS, a patient is in a position to tell any doctor, any time..." I dont wanna" and there is almost no rationale to force them to do anything. Like "Mr. _________, If you dont use this breathing machine at night, you could die in your sleep!" and the response is "I can live with that!"

He's a fairly easygoing fellow and honestly, if it wasn't for him I'd not have my wonderful wife in my life, so I feel like helping out where I can is the least I can do.

 

[affected]

Well done getting that sorted with him Andrew. I'm so glad he went, because he now has made an informed decision.

I would strongly recommend making a living will so that his wishes are clear and he knows they will be followed if he is not conscious or able to respond. Without that, if he had a fall and stopped breathing, the paramedics arriving would resuscitate him regardless of you standing there saying he would not want it. With a living will, and someone acting as EPOA, it is a simple situation. Don't rely on him being able to say 'no', as in an emergency he may not be able to.

At any time, any adult, with or without ALS can refuse any treatment, even if they will die without it.

 

[lgelb]

I feel obligated to note, Andrew, that with AF, which does tend to recur, the chance of a stroke/CVA that would more likely add to his disability than cause death, is indeed greater than those of a heart attack (MI).

Also, newer anticoagulants can be reversed more quickly than was possible with warfarin, long the only option.

My husband was on warfarin (higher doses than someone with AF would take since he had an artificial heart valve, so greater bleeding chance than your FIL would have) throughout his 5y with ALS.

I am not saying your FIL made the wrong choice, just clarifying for others who may need to make it.

Best,
Laurie

 

[Dot Nichols]

I agree that he should write out his wishes. Otherwise he may have no control over what happens. My PALS is on a blood thinner due to prior strokes, so falling with his walker became dangerous, even though he still rides his trike and transfers from chair to chair. It's been important for us to be seen at a clinic so care could be given in time. Is there one near your FIL? He is fortunate to have you near by. Hang in there.

 

[andrewf]

I inadvertently left out one key bit...he is not currently in Atrial Fib. It seems like it was transient situation from his hospital stay. Anyway, that very night he had a 'slow fall' in his bathroom and hit his forehead. No head damage but a bruise area that would have been 5x as big if he was on ACs.
The past few days, its painfully obvious he is headed for wheelchair living. He is 'scared to death' of falling down. In his words. And their house is NOT ready for living that way. After getting the conversation going, we at least have a backpocket plan. I told my MIL - one day when he says he just can't (or wont) walk any more, you'll have hours to make a move. Not days, but hours. Our house is equipped at least physically for him to stay here temporarily...then he can move to an assisted living. Also a temporary condition while they look for a house local to my wife and I. (there's very little for sale, but prices are maybe falling too so that's a plus). His long term wellbeing, mentally, will be to be at home with his family nearby.
The lynchpin for all of this is getting him enrolled in to VA health. He already gets a benefits check since his 100% rating. But the real value comes from equipment and services he will be getting from VA. I thought our RSO had started that in August when they did his benefits application. Turns out they did not; I faxed his VAH application last Thursday night.

 

[affected]

Yes the anticipatory planning really is important so you don't find yourself in a sudden crisis.
I hope you find something suitable quickly so that you can all breathe a little more easily about the whole business of accessibility.

Our house was not accessible but we got around lots of things by my husband only using parts of the house. I converted the lounge room into his room. That is another short term option possibly, sometimes you have to think outside the box with this!

 

[lgelb]

If your FIL is scared to death of falling with the walker, he could at least have a manual wheelchair pending a power wheelchair order (that I would get underway) when out and about, if the home does not support it, Andrew. When someone is scared of falling, and already has, that's high risk for falling again.

Whether on ACs or not, every fall risks fracture, fluid buildup, muscle tears, joint dislocations, bleeds, clots, etc., and permanent impairment. And the kind of damage ALS causes means that treatment options are more limited than for other people. Thus, one of our commandments here is, don't fall.

Unfortunately, the moment when someone literally can't walk is often after the point that they have fallen multiple times. That's why we say mobility devices and a safe setting for operating them should be in place before the eleventh hour.

I understand that your FIL is not currently in AF, but again, it often recurs, and major expenditures of energy (like staying upright when the muscles are barely enough) are exactly the kinds of things that trigger it.

 

[Mary2]

My husband stayed in bed a week after he fell, until we go a loaner wheel chair. We had another wheel chair in the garage. I think we might not have had the ramp to bring it into the house. Although there are temporary ramps one can use. The memory is rather a blur to me.

My husband stays in the family room which we have converted to a pretty nice bedroom set up. We have the electric bed there and the mattress with the air that alternates. He stays in that room and the dining room and is content in these 2 rooms.

We did the sliding board for months, but it really is easier to just go to the hoyer lyft. We did transfers to the commode for many months, but as we both grew older we switched to just having him sit on the hoyer lyft over the bed with disposable blue pads. I never walk away from him in this position and always have the brakes on. There would be a concern that a hired caretaker would walk away.

Using the hoyer lyft on the plush carpet hurt my back. We removed the carpet and installed flooring. Our greatest expense to date, but at least one that may add to the resale value of our home.

Caffeine triggers AF for a friend I have.

 

[andrewf]

Here we are after another month.... Gampa (my father in law, as my kids call him) is still walking with a walker. Still dresses himself. Says his finger pincher grip feels weaker but his handshake is strong. Spends more and more time upstairs, watching lot of TV, but does exercises with resistance bands (lots of it) and walks during commercial breaks, around the house upstairs. up to 1/2 mile daily in steps.
He doesn't do nearly what he used to. It's not that, with assistive devices, he cannot.... The strange thing is, his physical illness isn't even his limiting factor in experiencing life. He just doesn't want to go anywhere or do anything. I think he has a bit of depression, and more likely anxiety and fear of getting hurt. And while it is unfortunate, he is the patient. He is 78, not 58 or 48 with this....and if he wants to watch CHipS and CSI: Miami all day, then by golly its his right to do so.
We've talked to him about getting some anxiety medicine, he's receptive. Just gotta make it happen.
The closest metaphor I have is that he's a jumbo jet at 35,000 feet and the engines cut out. Its gonna hit the earth at some point, but there is a lot of gliding left to do. At least its better than being a Robinson helicopter that just chopped its own tail.

 

[Mary2]

Hi Andrew, My husband is 77 about to turn 78 and he is content in the house. He can no longer control the power wheel chair by himself so I am less inclined to take him out. This year for the first time we put wreaths on all the windows. We agree he will go outside on a warm day and look at those. He is still very interested in everything. We watched the Elton John concert together the other night and enjoyed this.

 

[affected]

I love the gliding metaphor.
ALS honestly saps energy in a big way, so be aware of that too.
It sounds like you are being perfectly supportive. Keep talking here any time.