Sandra D. Young, of New Jersey, was diagnosed with late-onset Pompe disease in 2016. She received her doctorate in nonprofit management and leadership and serves on the board of the Pompe Alliance. She describes her life philosophy on what is most deserving of her energy and the workarounds that help her to care for necessities with little to no energy expenditure.

“Don’t do anything that’s going to exert energy that I don’t need to exert.” I save my energy for the things that I want to do, not the things that I have to do.

So when I go grocery shopping, you know — of course with COVID, we, you know, we had to do everything online — so I stick with that. I do curbside pickup. I place my order online, go pick it up. I’m able to get it in the house. If it’s too much, my neighbor will help me. No problem.

I do as much as possible. Technology is my friend, so I do as much as possible using technology without exerting physical energy.

I have my house cleaned. Some people look at it as a luxury. I look at it as a necessity. I have a two-bedroom condo, two bathrooms. So for me, that would take me all week to clean room by room because I get exhausted easily. But with a cleaning service once a month, I’m able to maintain it the rest of the month and I’m good to go.