Weather Lessons for Living Well with ALS

Weather Lessons for Living Well with ALS

Dagmar Living Well

Stick around, because the weather will always change!

That was a life lesson I learned while growing up in Iowa. Spring in Iowa often meant that one day we’d be wearing parkas, the next day T-shirts and shorts, and then back to wearing heavy parkas again. We knew we had no control over Iowa’s weather. We just had to live with it, adjust our attitudes, and get on with our plans for the day.

In other words, we can’t control what happens to us, but we can manage how we react.

ALS has taught me many life lessons, but “the weather lesson” has always stuck with me.

One of my challenges while living with ALS is the change in how I physically move. For example, sometimes when walking with my rollator, my leg muscles tighten up and prevent me from stepping forward.

My mind immediately assumes the worst and commands my legs to try harder to move me forward. The mental tension causes my stiffness to worsen and I end up stuck in place.

I stop, take a slow breath, and think through the situation.

I ask myself: What is the reality? Are my legs tired from yesterday’s activities? Am I stiff from sitting too long? Or am I trying to move too fast?

The pause brings me back to the present moment. My mind and body relax and I can move on.

The same thing happens to me when speaking. For example, my husband and I often discuss world events and occasionally have differing opinions. I try to argue my points, but dysarthria slows my speech. Feeling frustrated, I try to push the words out faster, but can’t. My breath comes in bursts as my chest tightens, and the words are unintelligible.

I wonder in a panic whether I have lost my voice completely?

No. My mind answers: time to stop, breathe, and assess.

Letting go of the conversation’s tension, I begin practicing my good speech habits: Sit tall, speak from the diaphragm, and take time to pronounce each word.

Simple mind-body skills help me whenever I feel stress, frustration, or worry about my ALS. They can help you, too.

Here are the steps:

  • Pause or stop what you are doing for a few moments.
  • Notice what you are feeling in your mind and your body.
  • Breathe slowly and evenly.
  • Try to relax the tense parts of your body.
  • Accept the moment as it is.
  • Let go of the need to be in control.
  • Breathe once more. Then, carry on!

Life can be challenging enough with all the daily dramas, not to mention dealing with the weather! It’s even more challenging when we’re living with ALS.

By learning to ease up on having to be in control and listening to our bodies, we can 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.

4 comments

  1. David Buschhorn says:

    When I first get in bed, I hook up to the ventilator and begin sucking on the tube for air. It always feels like it’s not giving me enough.

    I’m literally using my neck to suck on the tube, but if I focus on breathing in slower and out at the normal speed, it’s fine. the desire for more air is coming from my desire to breathe faster which makes me feel panicky which makes me want to breathe even faster.

    The oxygen rat-race is all in my head. I can work on my stupid head 🙂

  2. Sheila says:

    I sometimes have horrible night time leg cramps, the kind that make me want to scream into the night. It seems the natural reaction is to tense up, however I have found that if I can relax and do deep breathing, the kind where your belly rises and falls it sometimes helps the muscle cramping and body clinching to stop.

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