How I Navigate My ‘ALS Time Zone’

During my past 10 years of living with ALS, I’ve had to adapt to a lot of new normals. One of the most important has been learning to navigate what I call my “ALS time zone.” It represents the unique pace or rhythm of my day, versus the pace of just about everyone else around me.

What is it?

Pre-ALS, I could multitask with ease, pull off last-minute errands, and do “just one more thing” before dashing out the door. Now, the symptoms of ALS — moving, eating, and talking more slowly — put me totally out of sync with my friends and family. They’re out the door, and I’m still getting dressed!

In addition, my body used to operate on autopilot; my feet and legs could be trusted to walk while I paid attention to something else. Now, my body is mostly in manual mode, in which I’m actively overseeing even the simplest of movements.

But rather than fight my circumstances or give up in tears, I remind myself I’m living in my own exclusive time zone.

A few key tips that have helped me along the way: Firstly, don’t try to hurry or just push through, thinking things will change. Whenever I do, my muscles tense up, I drop things, and I end up moving at a snail’s pace. Instead, I take a few slow, deep breaths and think “go with the flow.” This gives me time to ponder, as I wrote in this column, if I was forcing myself to accomplish things that simply didn’t make sense anymore.

More suggestions

• Allow for transition time: Going from standing to sitting or getting dressed involve a certain sequence of steps. Each step uses up valuable time. I don’t feel rushed anymore when I factor in the total time it takes me to complete a task, from start to finish.
• Practice staging: To prepare to go on an errand, I think of everything I’ll need to take along with me. Then I leave each item in a strategic area along my route out of the house. This way, I avoid having to double back to find them.
• Take advantage of home adaptations: There are many ways you can make your home easier to navigate. Use simple tricks for everyday tasks.

When is being slow too slow?

If the sun is slowly setting in the west and you’re still trying to finish your morning coffee, maybe something needs to change. Be on the lookout for signs that your ALS symptoms are negatively affecting your ability to move well. This is the time to talk openly with your caregivers and to be open to their suggestions.

Follow my tips to help navigate your “ALS time zone.” Let’s learn to live well while living with ALS.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.