Mental / physical efforts and the rate of progression

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ptich

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Sorry, could not come up with a concise Title for this thread.

As I wrote earlier, I noticed that the physical rest reduces many of my symptoms, especially UMN symptoms. And if I get a chance to have several days in a row when I can spend most of the day (like 16 hours) in bed, I tend to feel better for a few days after that. So it seems that reducing physical activity have a positive effect on the symptoms, and potentially on the rate of progression. I think quite a few of you observed the same.

Now I am wondering if somebody noticed the same effect with regard to mental activity / mental rest. Right now, I can transfer to much more interesting, and more mentally challenging, type of work, but I am wondering if it may have an adverse effect on ALS progression. I will highly appreciate any suggestions and observations.
 

Marjorie R. Wilcox

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I hope I can answer this well. Rick has ALS with slow progression. He is active mentally in that he gets out and works in the local ELks lodge as treasurer. (He joined after his diagnosed) Also he is preparing income tax returns using our remote access on the computer now to April 15th. During these times where he is engrossed in his paperwork, he is at his best.

When he is very physical, like carrying wood or shoveling lightweight snow, he is fatigued and has to take a nap. He gets up early every morning and has a full day of keeping busy. He has to walk carefully, stick to his diet, and puts up with numerous weaknesses of ALS, but his attitude is great. At times he is too tired to drive, so hands me the keys. Sometimes he can't walk without balancing himself with one hand on my shoulder. He wears his bipap all night and we snuggle around it.

I don't recommend spending 16 hours a day in bed. You won't gain strength, but will weaken. I also don't recommend running any races.

He talks about his disease if someone asks about it. Some people just talk to me, his wife, about it. Everyone wonders if he is really alright. He is not afraid..... not happy to have it, but not afraid. He is 61 and continues to have a wonderful life that he is thankful for............. I say if you are a PALS, make the most out of every day, but NOW. If you are a CALS show constant love and patience and treat the person with dignity. They haven't changed for the worse, nor do they need to be treated differently than normal.
 

ptich

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Thanks Marjorie, so you're basically saying that increased mental activity does not seem to have any negative impact on ALS, as far as your husband is concerned. What I was worried about is that deep immersion into any intellectual activity is akin to a mental stress of a kind (albeit a positive one), and a stress is a known no-no thing with ALS. In the same venue, I am trying to minimize my exposure to both negative and positive emotions, because either seem to be bad for me.
 

rose

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ALS does not normally affect the cognisant part of the brain, so how much one uses their mind actively should be a non-issue.

However, in the past I've read studies about the positive effect of mental and physical activity in staving off Alzheimer's. Examples such as a person doing the crossword rather than needlework or reading, rather than watching TV.... and if one finds something to become easy, to go to a harder version, or something that does not come as easily naturally to them, as far as mind exercise goes.

For example, I've done the USA Today newspaper crossword just about since the newspaper has been published. ~ its a favorite of flight crews :) However, its really not a challenge for me, and I recently subscribed to the NYTimes delivery, just to have that weekend puzzle to work on. (and if anyone that reads my post is someone who zips right through the NYT crossword, try to be gentle with me, ok? its slow going! LOL)


but, back to your question, I know that if I had to choose, I'd go for the more interesting work, absolutely,
 

BethU

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Hey, Ptich ... stress is defined as "tension, strain, or distress" ... not as interesting, and more mentally challenging work. Animals in a zoo are under great stress, because they are subjected to mind-killing boredom and lack of mental and physical stimulation and challenge. Zoo animals usually live longer than animals in the wild, but if you unlocked those cages, they'd be gone.

I am all for slowing ALS progression down as much as possible, but I am even more in favor of being alive while I'm alive. And if having interesting, challenging, fun and creative work to do kills me 48 hours earlier, tough noogies.

AND ... you say ... I am trying to minimize my exposure to both negative and positive emotions, because either seem to be bad for me.

Your ideal life is 16 hours in bed a day, avoiding all stimulating and challenging work, and avoiding "exposure" to both positive and negative emotions? I mean this kindly, but I'm very serious: please get some counseling to help you work out your anxieties.
 

rose

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Beth, Good God yes! What is the point of staying alive if one can't live.... Exercising the mind is not the opposite of stress, two different entities. The analogy of zoo animals is an apt one.
 

brendapals

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And yes, I must "jump in"-

I have to brag on my 2 oldest sons, they are 18 and 15. I just spent the last 2 days, 8 hrs each day, cleaning up the yard, painting concrete block foundation, and porch, and cleaning some more, getting ready for an open house tomorrow, in hopes of selling the house.

My boys just told me they couldn't believe I wasn't stressed, like my hubby, and I had worked hard for 2 days WITH ALS.

Life is all about what you put into it,
Kinda like scrambled eggs I guess:lol::lol::lol:
 

BethU

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Brenda, it's going to take more than ALS to slow you down !
 

brendapals

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yeah, Beth, so true, so true:lol::lol:

I just hope some complete stranger comes up and wants to buy the little house, darn it, it's like a dream cottage or something. I'll try to get some pictures on here tomorrow of my fine painting job!

you're so funny,
hugs,
brenda
 

canfiet

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I am new to this forum but I can comment on activity. Usually when I do too much, I get extremely tired and usually "pay for it". I concentrate on the things that I can do and sometimes challenge myself physically - just because I can. I am not working because I can't perform my normal activities. The stress of work was really not helping me at all early in the diagnosis process. I try to conserve my energy for my family when they are all home. I do think this helps a lot lately. The other think that helps me make decisions on what I'm doing is - I do what I want to do. I am now getting to those projects at home that I never had time to do. I go to lunch with friends that I only saw occasionally. My Motto - HAVE FUN!
 

brendapals

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way to go,
I'm having more fun in the last 8 months than I ever dreamed!
 

rose

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canfiet

I just wanted to say welcome to the forum, and echo that it is what one makes of it.
 

Marjorie R. Wilcox

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When Rick does too much he gets tired and pays for it too. But doing his bookwork is such a pleasure that he even forgets he has ALS. He's all excited to go to bed early so that he can go back to it the next day again.

He does have anguish if I happen to upset his daily routine or make unexpected demands on him. He gets channeled into his day and then has blinders on. I try not to upset the cart. Each night we plan what we'll do the next day, and I know I must stick to it for him.

There is a difference in his mental state that I can't quite put my finger on or name. I guess I have to say his perception of things is different... say he can't get ready on time for an appointment and I have to keep pointing out that he must shower and dress NOW
to be on time... that sort of thing. But it doesn't make him tired or stressed. He seems oblivious to it. I see it. He doesn't.

I'd say we are doing everything we can... and don't do what we can't... and he rests in between. We are a great team!
 
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