Help! Strength: Conserve or Use It or Lose It?

I meant exhausts him

MarieLaure what you are describing is doing too much and it will hasten progression.

My Chris would do this - he would go out and spend 6 hours or more, no food, no water pushing himself really hard. Then he would be useless for several days, would barely be able to move for the fatigue. Then he would be weaker once he recovered. Yet he would then go and do it again. He had FTD (the dementia that often goes with ALS) and he just could not make the connection. I did not waste the last year of his life fighting with him over it, he did it his way, good or bad it was his.

The exercise rule of my clinic is if it takes you more than one hour to recover fully ( return to baseline) it was too much. I like this because it is very concrete and easy to follow. Maybe your dad would respond to this?

Thank you Nikki and Tillie
Food for thought
His perception and mine are of course different and we are at a stage where I feel his way - however I feel about it- is the way.
When he says he exercises and then he shows me are two different things. It seems very little but it tirés him. He recovers within one or two hours.
Thanks a lot for your insight
And good vibes

Nikki- Can you clarify what you mean by return to baseline? My physio uses heart rate as an indicator. Is that what you mean?

No not heartrate. General functionality. For example after I do my minimal pedaling workout it is harder to walk but after resting I am as I was before thr bike When I tried to pedal a bit longer it took more than an hour and that was a sign it was too much. I would really worry if it took someone an hour for heartrate to go to resting rate

Thank you. That makes sense. So it's muscle fatigue/energy?

With regards to heart rate- my physio will not allow my heart rate to go over a certain number and adjusts exercises accordingly to make sure of this. As he uses the term "baseline", I wanted to make sure that's not what you were referring to.

Kim, when you said to exercise as long as it does not break down muscles, can you clarify and elaborate?

How do I know that I am not breaking down muscles in my daily activities? I totally understanding the recovery within an hour monitoring guideline.

Cathy

The reason body builders are bulky is that they lift enough weights to break down the muscle. When the muscle rebuilds, it bulks up. You can actually break down muscles by doing other strenuous things like walking a treadmill on a steep incline. Many people don't know this.

I would encourage gentle movement, water therapy, and just regular walking (only for those who can walk without becoming exhausted.)

I can no longer get my heart rate high enough for any cardiovascular benefit because I can't do the treadmill fast enough or at an incline that raises it significantly. I'm OK with that so I do mostly slow walking, gentle stretches, Tai Chi, and pool time. I also do breath stacking and breathing exercises but that's a whole new discussion.

May I ask a stupid question? Sorry if this is so basic that I don't see it...

How does someone like me get in an out of a pool? Over the summer I tried some swimming but found the ladder and steps so difficult that I needed someone to get me out. Now I am sure I wouldn't be able to get out.

Cathy

Public pools have to have lifts for the pool. This is your pool or a friend’s?

If I may:


ROM--never aggressive. Not fast. Always watch the PALS eyes when moving her limbs.


SWIMMING POOL LIFTS--less expensive than you might think. Ask your regional YMCA board of directors to install an ADA-compliant pool lift that will meet your needs now and in the future.

SPECIAL TO MARIELAURE--I know this is difficult, but...I have a policy that whatever the PALS wants, the PALS gets, with smiles. In my way of thinking, ALS takes away a person's choices. A PALS can't even choose to scratch an itch! Plus, he's a adult making his final decisions. For those reasons, I let my PALS have anything, anytime, no matter if I disagreed, no matter if it was bad for them.

The way I figured it was: If I were in my last days and somebody second-guessed my decisions, I would be totally pi$$ed, especially knowing that there's not a lot I could do to assert myself as a PALS.

Others will disagree. Your mileage may vary.

Ys and pretty much every pool operator except private homes have to have at least a lift or sloped entry. If this is not a private pool they would be violating the law if they don’t have one or both

Mike I agree with PALS being allowed to make choices as long as those choices don’t endanger others or put undue/ unnecessary stress on their CALS. An example would be refusing to use a lift even in the CALS had a bad back or was not strong enough to do the transfer

Nikki, I agree. The CALS must always consider safety. Not only that, but as you point out, the CALS health matters, too. In fact, one of the more common and important (I think) bits of advice I give is that CALS must watch out for the survivors and must be sure to plan for the family to survive and even thrive after the PALS is gone. So it only makes sense for the CALS to watch out for their own good when considering the PALS wishes.

Thanks Mike
I understand and agree that he must have it his way. That’s why even if it angers me when a nurse tells him to put his head up when he can’t or try some steps I keep quiet ( which is not natural to me)
It’s just that it worries me because I know if hé overdoes it he won’t be able to get out of his chair later on during the day. He now needs help to get out of bed.
But yes keeping control on what he still can choose is important. That’s what I say when people comment on what he chooses to eat.
Thank you all for your contribution