When We Do Something, Something Happens

Hang on tightly, it’s another week of weather events, news alerts, and a continuing health crisis. I feel like I’m riding on a big airplane flying through rough turbulence.

Certainly, living with ALS has taught me I can’t control the jiggles and the bumps, but I can control how I respond. It helps to change my perspective — rather than flying through rough weather, I’m in a nifty speedboat cutting across the waves.

A change of perspective has helped me through my past 10 years of living with ALS.

Perspectives, perceptions, and how it ‘should be’

I’ve often challenged what was considered the norm for ALS patients. For example, at the time of my diagnosis, exercise was not always recommended for ALS. Nevertheless, I trusted what I knew about muscles and health, and devised a simple fitness program for myself. Ten years later, I’m still exercising, and there’s even research to support my decision.

Often other ALS patients tell me they feel too fatigued to exercise, or frustrated that they can’t do the fitness routines of their past. I respond by saying that if you do nothing, then nothing will happen. But if you do something, then something might happen.

Then, I remind them that with ALS, we’re living in the slow lane, and as I wrote in “Be Willing to Do Just One Squat,” doing only one repetition is just fine. It could even lead to two!

Another example is when I began losing my voice. The speech therapist told me to start looking at using devices that would speak for me. But instead when I focused on improving my sitting posture and breathing while speaking, I could still produce a sound. Granted, it took effort and didn’t sound like the old me, but that was the exact point at which I saw others give up.

I decided to spend several days listening to all the voices on TV. It’s funny how I hadn’t noticed all the accents, drawls, and nasal twangs before. Very few newscasters or their guests had “perfect” voices. It convinced me to put in the time and effort to learn how to improve my speaking and use devices to help others hear me.

Trust yourself

We ALS patients are constantly bombarded with news about treatments, clinical trials, and even so-called cures. I’ve learned to stay informed, but I avoid following the crowd. I rely on trusted sources like ALS News Today and my physician to know what is best for me.

Have recent world events distracted you from taking care of you? Try changing your perspective and join me in living well while we live 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, and are intended to spark discussion about issues pertaining to ALS.