Listen! Can You Hear Me Now?

Living with ALS has taught me to adapt, adapt, and adapt. Because ALS symptoms tend to change, change, and change.

And one of the symptoms I’ve been learning how to adapt to is dysarthria, or losing the ability to speak. Dysarthria feels like having a bad case of laryngitis plus a lazy tongue that is two steps behind what my mind wants to say.

Exploring my options

When my dysarthria first appeared, I poked fun at my new “angry pirate” voice. Having spam callers hang up on me after hearing my gruff “Har-row?” felt like a victory of sorts.

But long, in-person conversations with friends became tiring. And I knew that even though they nodded politely, they weren’t always understanding me. Like every other ALS patient with dysarthria, I was told by my medical team that eventually I would lose the ability to speak altogether and that assistive technology would speak for me.

Out-of-the-box thinking

But I didn’t want to give up so easily. For the past several years I’ve written about the various methods and techniques I’ve used to help me keep on talking.

For example, I began using Andrea Caban’s innovative techniques to help save what little voice I had. The techniques included sitting up tall, speaking with a higher or lower pitch, moving consonants to the front of the mouth, and using the diaphragm like an opera singer while speaking. I was very happy with the results and could produce longer sentences with each breath.

Being on a roll, I explored YouTube videos for beginning singers. Turns out there are lots of helpful lessons for “fragile voices.” I learned the value of humming, memorized several easy vocal warmups, and improved my diaphragmatic exhalation so that I could recite 30 words in one breath!

A clinic discussion

During a visit to my ALS clinic, I proudly shared everything I was doing with my speech-language pathologist. She happily acknowledged my improvement and said she was satisfied with my vocal status.

When I told her about my frustrations that people had a hard time understanding me, she explained that the pitch of my voice was in the lower range. Because I spoke in a typical ALS monotone; my voice was at the same frequency as the low hum of many home appliances, and the human ear is less sensitive to low sounds at low volumes. “No wonder your husband doesn’t hear you very well at home,” she said. “You’re in competition with the refrigerator in your kitchen!”

“What you need is a personal amplification device. You know, a portable microphone!”

Hmmm. Why didn’t I think of that?

My mind flashed to the possibilities. No more straining to be heard in noisy restaurants. No more frustration in crowded social gatherings. No more hollering directions across the house when my husband forgets how to copy and paste on his computer. (I’m sure we’re the only couple that sits in two different rooms while on our computers and hollers our conversations!) I could immediately visualize the advantages.

A test run

Later at home, I went online and promptly ordered a Portable Mini Voice Amplifier with Wired Microphone (approx. $35.99 at Amazon). The headset and microphone plug into a small speaker worn around the waist with a clip-on belt. When the amplifier arrived, I quickly put it on and put it through a few tests.

• Wearing it with the volume turned up while riding in our van the road noise didn’t drown me out. I could chat without straining and my words were heard!
• At home, my husband went into another room and confirmed that he could hear me talking to him. At full volume, I think even the neighbors could hear me talking!
• Next came TV time. Ahhh! Football games and news programs no longer drowned me out!

The final test

I was at a large social gathering with lots of milling about, chatting, and a noisy environment. Headset on and volume up, I maneuvered my mobility scooter through the crowd, surprising more than one acquaintance with my hearty “Hi!” We could talk and they could hear me. I even received many compliments on taking the big step to use a microphone.

When the event concluded, 12 of us gathered at a long table for our club’s board meeting. When it was my turn to talk, I nearly scared myself hearing my voice carry to the far end of the table. Previously, I had to add body language to help others understand me. This time, I relaxed my shoulders and pronounced the words.

A few cautions

Volume doesn’t improve my speech; it only makes it louder. I still have to pay attention to my pronunciation and the slowness of my words.

It’s also wise to follow basic microphone etiquette. I turn it off before laughing loudly, letting loose a big yawn, during a case of hiccups, AND before using the restroom. I’ll kindly spare you the details of those hard-learned lessons!

I’m convinced that good things can happen when we’re willing to try something new. And new things are being invented every day to help improve our lives. Always be open to new ideas, be willing to adapt, and let's learn how to live well while living with ALS.

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Dagmar Munn
ALS and Wellness Blogger

"Speak your mind even if your voice shakes"

Maggie Kuhn

A version of this post first appeared as my column on the ALS News Today website.