I choose to be optimistic, even though I have ALS
How a positive mindset helps me navigate symptom progression
One day, about four years after my diagnosis of ALS, I began having trouble pronouncing words. My tongue felt thick and couldn’t form words at the speed I was thinking them. My speech came out garbled and my brain hurt from trying to overcome the disconnect.
At the time, I was already dealing with my initial ALS symptoms of foot drop and weak leg muscles, so in addition to tripping over my feet, I now found myself tripping over my words as well.
Within weeks, my feminine voice shifted into a low growl, making me sound like an angry pirate. To say I became frustrated is an understatement, especially when the speech-language pathologist at my ALS clinic urged me to stop using my voice and instead learn to use the various augmentative speech devices she’d brought with her.
An aha moment
Later at home, while watching the news on TV, I noticed how the reporters and their interviewees had all kinds of voices. They spoke with varied pitches, accents, and speeds. A lightbulb switched on in my head. “Wait a minute!” I thought. “The whole point is to communicate. Who says I have to sound perfect or speak fast?”
That began my 10-year quest to learn how to speak with the voice I had. A decade later, I’m still speaking. But this isn’t a how-to-speak-better column. If you want that, I shared everything I do in a blog post titled “I’m still talking! And sharing strategies that help my ALS speech.”
I told the story about my voice to point out the strategy I used to shift my perspective — one that I apply to my continuing ALS challenges. I hope you’ll try it, too.
Seeing the glass half full
During my professional years leading a hospital-based wellness program, our stress-reduction classes included lessons on resilience from the book “Learned Optimism” by Martin Seligman, PhD.
Seligman writes that an optimist sees setbacks or problems as temporary and believes we can exert some control over our situation. A pessimist has the opposite attitude, relinquishing control to other people or to fate. The core of pessimistic thinking is a feeling of learned helplessness.
The good news is that these two attitudes are not necessarily ingrained within us; they are simply thinking habits that we’ve learned throughout our lives. If, as children, we weren’t brought up by or exposed to optimistic thinkers, Seligman’s research proves that these skills can be learned.
Here’s how I applied the wellness lessons to my new situation:
1. Accept the situation: I admitted that my voice had changed, I stopped yearning for what I used to sound like, and I was eager to find a resolution.
2. Search for solutions and see the problem in a new light: I researched what singers do to maintain their voices, how stroke patients are rehabilitated, and I even studied English on a site for nonnative speakers.
3. Practice new habits and have substitute plans ready: I use a voice amplifier when I’m in noisy environments and a text-to-speech app to have one device talk to another.
Are you an optimist who is living positively with ALS, or a pessimist who believes life with ALS is just a downhill slide? Remember, even though we know ALS symptom progression brings changes and setbacks that become our “new normal,” we still have the mental capacity to exert some control over the situation. We can accept, adapt, and thrive on our terms. We can 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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