How My Daily Routine Helps Me Live With ALS

Learning to live with ALS means building a daily routine one piece at a time

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by Dagmar Munn |

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Ask me what I think about having a do-the-same-thing-every-day routine and I’ll tell you it is great. Especially now that I live with ALS, having and following a consistent daily routine is absolutely vital to my health.

A daily routine is something almost everyone has experienced at some point — from our childhood through the teen years and into adulthood. It’s the comfortable and predictable timetable of our days that helps us cope with change, create healthy habits, and reduce stress.

And yes, sometimes daily routines can get boring.

That’s where the welcome disruptions of vacations, holidays, or trying something new fit in. Later, when we return to our daily routine, we feel refreshed and revived. But a really big disruption, like being diagnosed with ALS, can shatter a daily routine for weeks, months, or longer.

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For me, learning to live with ALS meant building back my daily routine one piece at a time. Here’s what I did:

Simple strategies

My ALS symptoms made my muscles feel stiff, and it took so much time to do simple things that I had to simplify my living environment. This included my clothes. I traded out all of my pants with difficult zippers for easy pull-on pants with an elastic waistband. Shirts and tops with buttons and hard-to-reach closures have all been donated elsewhere and replaced by loose, T-shirt-type tops in all sorts of colors.

I used to be up and out the door for an early-morning walk and workout. Now, my exercise is split up into short bouts scattered throughout the day.

One special activity that helped me create a new daily routine was keeping a journal. Once a day, I’d jot down how I felt, what my challenges were, my goals, and something I was grateful for. This led to a simple formula for daily living based on the new habits I was developing.

I call my plan the “4 Ms,” which stands for medication, mindfulness, motion, and mood. You can read more about my 4 Ms here.

The test of time

My simple daily routine has served me well these past 12 years that I’ve been living with ALS. Although essentially the same, it has evolved in response to my symptom changes, and weathered disruptions from happy events as well as challenging times. I’ve learned to rely on a strategy to revive my daily routine and get me back into the swing of things.

Of course, paying attention to self-care is another essential piece of my daily routine. Pausing to breathe, listening to music, or laughing at funny pet videos are some simple ways I give myself a mini self-care break.

If you’ve experienced ALS-related disruptions to your daily routine, try my tips and strategies. Together we can help each other learn to live well while living with ALS.

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, and are intended to spark discussion about issues pertaining to ALS.


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