andrewf
Active member
- Joined
- Nov 18, 2021
- Messages
- 44
- Reason
- Lost a loved one
- Diagnosis
- 07/2022
- Country
- US
- State
- MD
- City
- Rockville
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.
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.
