How I Navigate My ‘ALS Time Zone’

How I Navigate My ‘ALS Time Zone’
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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.

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11 comments

  1. André Carvalho Pinheiro says:

    Hi there, Im a 49 years old boy, with only one lovelly wife and two wonderfull daughters, Giovanna(10) and Isabella (6). Im from Rio de Janeiro, Brazil and Im a oil business engineer + entrepreneur.

    I’ve been just diagnosed with ALS a couple of months ago and I’m still dealling with uncertanties and bed feelings.

    Thank you for sharing all these valuable information.
    Cheers

    • Dagmar says:

      Hello Andre’ – – thank you for your kind words. I am sorry to learn you have ALS, but do know that there are many supportive ALS communities around the world, made up of patients, caregivers, family and, friends.

      The ALS News Today Forums is a great site made up of 450+ members from around the world who offer tips, discussion and support. Use this link to join us! https://alsnewstoday.com/forums/

  2. John Russell says:

    Wow, is this ever an accurate description of my days! So glad to see I’m sharing my time zone with others.

  3. Edwin C Rocabado says:

    Thank you for accurately describing our experience of being in different “time zones” from those around us. Rather than get discouraged, I think of the joy those around me get when “vertices” of our time lines to connect.

    They enjoy that I accompany them on a simple errand or meet for coffee or even lunch. Sure, I could have had taken care of usual errands from home and even have had them over for said coffee or lunch. That would be easier on me and they certainly understand…but when I do it, I do it for them.

    My continued presence brings them a bit of solace also as they prepare for the inevitable (we know how this story ends). We are not living with ALS alone. We have so much to still share and those who await for us to share it.

  4. Rebecca Balko says:

    Hi – thank you so much for your writing. I just came across it and will follow your blog. My husband began having slurred speech over a year ago, but had a sinus surgery (which had been suspected as the cause), but following his surgery and recuperation, it began getting much more noticible. The VA then began more specific tests, (as he lost strength in his left hand and other things) and was told it was likely primary motor neuron disease. He has one more test on the 17th (electrodes or something), but his doctor told us last Monday that it is ALS. My husband has not yet read anything about it. He’s overwhelmed. I’ve read, but found it to be difficult. BUT…what YOU are doing made me cry – because the little I’ve read is “life”. My husband and I agreed that we be in “this moment” as much as possible and not trying to look at “down the road”. I just want to thank you, because I believe when he is ready to read and learn – using your blog will be MUCH better than anything I’ve read so far💕

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