Taking the time to mentally exhale while living with ALS

These tips helped ease my panic following an ALS diagnosis

Dagmar Munn avatar

by Dagmar Munn |

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In a recent column, I described how I panicked following my ALS diagnosis. With the prognosis of having only two to three years to live, suddenly there weren’t enough hours in the day to do what I wanted to do. My mind hyperventilated with seemingly endless thought loops, each like taking a mental breath in — in and in and in — with no time to breathe out.

I’ll admit that letting go of the need to be in control and trying to overfill each day was hard and took time. But let go, I did. And here’s how you can do it, too.

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Step 1: Recognize the problem

Know that feeling anxious about having a serious illness is a normal response. It’s just one of the many emotional phases we patients go through. But the first step is to recognize we’re mentally hyperventilating.

For me, the best way to stop the roar of negative self-talk was to sit down and stop moving. Try it. Take in a slow breath and slowly exhale. Wiggle your toes and listen to the sounds around you. Poof! You are in the present moment. You’ve just told your mind “Stop!”

Now it’s time to do some relaxed thinking and eliminate a few unreasonable worries. Mine included thinking my ALS was progressing when my areas of muscle weakness were due to nonuse. Or being afraid of my muscle spasticity, which went away when I adjusted my body position or performed a few stretches.

Worries about our future can be dialed down by taking time to list solutions, as I wrote in the column “Prepare and Prevent: My Strategy for Living With ALS.”

 Step 2: Commit to regular practice

A few minutes of quiet sitting and breathing are a good start. Try to do it several days in a row. Then create a plan to do it every day. Add it to your calendar or set a recurring alarm.

Self-care is essential as well. When I don’t have a chunk of time to devote to my self-care, I build self-care “minis” into my day.

Step 3: Keep at it

Transitioning from feeling panicked by ALS to learning to live with it was a challenge, but it’s made a world of difference for me. I can face life’s curveballs, set reasonable self-expectations, and am satisfied with me.

I invite you to learn from my journey by way of the many columns I’ve written for ALS News Today. Also, join the ALS News Today Forums and learn from our many members. We’re all learning to mentally exhale and to live well while we live 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.


Rita Johnson avatar

Rita Johnson

Hi Dagmar,
In one of your posts you mentioned taking an online course to help with word pronunciation. What was that course, if I can ask? I have onset 'bulbar' ALS and I want to strengthen my words. Do you have any other suggestions or recommendations?
Thank you kindly,

Dagmar Munn avatar

Dagmar Munn

Hi Rita,

I took this course taught by Andrea Caban http://www.andreacaban.com/als
and have been practicing the pronunciation videos on YouTube from Accent's Way English https://www.youtube.com/@hadar.shemesh

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