Whenever you come down with a disease or disorder, advice and recommendations begin to flow freely; from doctors to health care workers; even friends and neighbors. With ALS, the message repeats and resonates.

Conserve energy.

I understand the premise. I should not work muscles so much that I become too tired. With ALS, muscles begin to atrophy because activity is less. The brain cannot communicate well with muscles so weakness and reduced coordination grows.

What should I do?

Conserve energy.

Here’s the problem.

What energy I save today is not energy that can be used tomorrow. Sure, after exercise or exertion we all need to relax, and weakened muscles need more care and consideration for people with ALS than the average person.

I want my muscles to last as long as possible before the end arrives. Yet, moving is important, too, even if it becomes more difficult over time.

My grandmother was very active well into her late 90s, and lived to 104. When asked her secret to being so healthy at such an age, she had the same answer every time.

Keep moving.

That’s my plan.

I cannot stand and I cannot walk. But I can move. I can move arms and legs, hands and feet. I can get up from a sitting position and I can sit down on my own. It isn’t easy to move but I can move a little. It takes energy, yes, but, in general, energy not used today will not show up as extra energy tomorrow.

Keep moving.

I like it.