Use it or lose it?

[ralsip]

Sorry I stole that from someone else's post but I couldn't think of a better description of what I wanted to ask. I was diagnosed in January 2014. I quit working in July. Once I quit working, I start spending more more time at home either sitting in the chair or laying down in bed using my iPad or getting to the table to sit down and eat. I started using a cane in July and then a walker in November. I quit driving about six weeks ago. My hands are the worst, followed by my arms and then my legs. Now I'm starting to have trouble getting up out of chairs and even out of bed. I've also lost about 25 to 30 pounds since September and looking at my arms and legs most of it appears to be muscle. I feel like I'm getting to the point where I need to consider A lift chair, a power wheelchair and perhaps even a handicap accessible van. But I'm also concerned once I do that I will be even more sedentary than I am now and then I will progress even quicker and lose the ability to transfer to commode or to bed. Was curious what your experiences have been or what you've been told about needing to stay active or whether not doing so would speed up the muscle deterioration from lack of use. Thanks in advance for your thoughts.

 

[Graybeard]

I can't answer your question, but you're losing a pound and a half a week. That will continue until you get more nutrition, or you starve. I lost a pound a week for 60 weeks before I started using my peg tube. Since then I have gained nearly two pounds a month, for a total of 14. Being a man, some of it has gone to my gut, but more all over my body. I am 6' tall, and a tech implied if I get much below 150 there is no recovery. My lowest was 154.

I take six Boost Plus a day for a total of 2200 calories. Sure, it has corn syrup and sugar, but my blood sugar is lower than before disease.

Eating and drinking are highly overrated.

 

[Nikki J]

Another member here has a great saying about this. The gist is sit sooner ( wheelchair)and be independent for transfers longer. Stressing out the dying muscles is bad and will accelerate the disease. Falls can be a disaster. You can be seriously injured or even killed ( yes it has happened to members of this forum). Most of us also think they can accelerate progression.
And Graybeard is so right about maintaining weight.

 

[GregK]

You need to up your calorie intake drastically, as GB noted. I am 5'8" and 160 lbs and was told to eat 2300-2600 calories daily. I too had been losing.

You need to conserve as much energy as possible, so use a walker and start the power chair paperwork ASAP. Same goes for the van.
That does not mean turn into a lump. Water aerobics are great for those of us who can still move about a bit. The bouyancy of the water eases exercise. Light floor workouts, weights and seated stationary bikes, are ok too.

 

[MaxEidswick]

>Another member here has a great saying about this. The gist is sit sooner ( wheelchair)and be independent for transfers longer. Stressing out the dying muscles is bad and will accelerate the disease. Falls can be a disaster. You can be seriously injured or even killed ( yes it has happened to members of this forum). Most of us also think they can accelerate progression.
And Graybeard is so right about maintaining weight.

Ditto that!

 

[MaxEidswick]

>Another member here has a great saying about this. The gist is sit sooner ( wheelchair)and be independent for transfers longer. Stressing out the dying muscles is bad and will accelerate the disease. Falls can be a disaster. You can be seriously injured or even killed ( yes it has happened to members of this forum). Most of us also think they can accelerate progression.
And Graybeard is so right about maintaining weight.

Ditto that!

 

[affected]

All good advice so far.

Use it much and you will lose it faster. I love the way Nikki worded it.

Risk of falls can indeed kill or hasten progression far faster than conserving energy and getting those calories pumped in. You should not be losing weight regardless of your muscles wasting.

QOL will also improve if you conserve energy and stay safe, you can start putting your energy into things you will enjoy.

 

[ralsip]

Thanks to everyone for the replies. I go back to the clinic next week and expect to have more discussions about getting a feeding tube and also starting the paperwork on a power wheelchair. I've started using protein smoothies to up my calorie intake. I'm starting to agree eating is overrated when it is such a fight to get the food in my mouth. Though I'm not sure I can agree that drinking is overrated, well at least certain types of drinks.

 

[summerguy2007]

Maintaining weight is most important. I only do light to moderate stretches in bed 2x day, and walk with braces and a walker for about 400 ft. per day. Diaphram muscle exercise 1 or 2 times a day. No other exercise done by me. Conserve your energy.

 

[Graybeard]

What is your diaphragm muscle exercise?

 

[hjlindley]

It's called breath stacking. You breathe in, then you breathe in again hold and release. Next time you're at clinic ask your respiratory therapist.

 

[Nikki J]

There are also several threads on it
Do a search for more complete info but look here
https://www.alsforums.com/forum/general-discussion-about-als-mnd/27207-breath-stacking-again.html

 

[MaxEidswick]

It's also in my blog

 

[summerguy2007]

I don't do breath stacking, rather somewhat forcefully breathing in & out through just your nose quickly for 1 minute (or less if you tire) and you will definitely feel it in your diaphragm muscles.

http://youtu.be/Kp8WK4hFsTs?list=PL2K_6mTqNQTpvkAVeTiuwbKU-HMxRuYmy