Monday, 11 April 2016

Energy Management

One of the key markers for ALS is a lack of energy. I suspect this is true with most chronic illnesses. When your body is busy fighting a disease, your energy goes there instead of into the activities of daily living. You're tired because you are using all that strength to keep going. With ALS it's even worse, because you never get better and there are no treatments. So you just fight, and lose energy.

It comes to the point where you start making choices of activities based on energy consumption and your energy level. Yesterday, for example, I was driving Katherine around the UBC campus, showing her the various sights. We stopped at the Museum of Anthropology. I encouraged Katherine to check it out while I had a nap. It was an energy based choice for me. I was starting to get tired, so I decided a nap was more important than the museum. I'd seen it before; she hadn't.

There are simpler things than that. If I want a couple of things at the grocery store, I used to transfer to my power wheelchair and run across the street. These days the transfer takes a lot out of me, uses a lot of my precious energy. So instead I ask Katherine to pick it up, or Kate to pick it up, or someone else to pick it up. That way I avoid the transfer, and save the energy. If I spill something on the floor, I wait for someone else to pick it up or wipe it up. That way I am not using energy bending, stretching, cleaning up.

These days I've even started thinking a lot about the energy it takes to get up in the mornings, to get dressed, to get into the bathroom. I know when I stop doing these things my life will spiral downward very quickly. But I can see how other PALS end up making these decisions. At some point I will not have the energy for it. At some point I will have to make the choice, or rather, the disease will make the choice for me.

Right now I am careful. I manage myself as best I can. I choose methods and ways that minimize the use of my closely guarded energy reserve. If I can avoid it, I avoid it. If I can ask for help, I ask for help. If I can do something different that takes less out of me, that's what I do. I still get up, grudgingly. I still get dressed, most days. I still get out of bed; my bathroom needs eventually force that one. But I can see it coming, the day when it will take too much, the day when I will need help simply to sit up, to dress, to move about. That's going to be tough.


  1. Dear Richard,
    I read your blog every day and am humbled by your grace and strength in dealing with the unfair cards that you have been dealt. You are an inspiration to so many people fighting this horrible disease and reading about you and your daily struggle makes me realize how precious life truly is and how incredibly strong you are. God Bless you and keep fighting the good fight.

  2. Two days of sleep before and two days of sleep after make for one really resourceful day. The hard part is the to do lists. All the things it would be so easy to do in half a morning and getting through half of one and you have to take a break. People ask how was your day and you want to say it hasn't happened yet I'm still trying to make it happen.