I’m still talking! And sharing strategies that help my ALS speech

I was diagnosed with ALS in 2010. My primary symptoms were weak legs and feet - - both of my feet had foot drop - - I dragged the toes of my shoes with each step. Four years later, I experienced trouble speaking. Immediately I vowed to do everything I could to keep speaking. This post shares the many strategies I’m using - - and I’m still talking!

Even though I continue to practice daily voice skills (a list is at the end of this post) to help me prepare for in-person conversations, I’m still challenged by the pronunciation of certain words. Often, I avoid the word altogether and use a simpler version. Or I simply plow ahead, slurring and bumbling my way and relying on lots of body language to convey what I want to say.

But I’m happy to report that I’ve adopted an innovative strategy that’s been helping me learn to speak clearly and with more ease. This is all part of my continuing quest to prevent my ALS-related dysarthria, or speech disorder, from robbing me of my ability to speak (Dysarthria feels like having a bad case of laryngitis and a lazy tongue that is two steps behind what my mind wants to say).

Challenges and strategies

Some of the strategies I’ve previously incorporated include improving my posture, strengthening my diaphragm, and even using a personal voice amplifier. All good things to do, but breathing better and having more volume can’t help me improve my pronunciation. For example, when I say, “Hand me the spoon,” it sounds more like, “Han MEE da sch-POON.” Certainly, it's not what I intend to sound like.

Pronunciation drills for ESL students are useful for me, too

Going online, I searched for suggestions from others who share my word pronunciation dilemma and discovered that non-native speakers have challenges similar to mine! Learning English as a second language (ESL) also means learning to make new and difficult sounds, plus adopting a unique rhythm within each sentence.

Fortunately, this topic has a wealth of online resources, including YouTube videos focused on helping non-native speakers learn to converse in English. Plus, following the videos makes it fun to practice. (I like Accent's Way English with Hadar)

Exploring new sounds

As an example, for the “R” sound, as in “rah, row, rear,” I can watch a helpful explanation of how to position my lips and tongue to create the sound, practice some drills, and then try a few tongue-twister phrases.

On some days, I create my own version of the TV show “Sesame Street.” I pick a letter from the alphabet and every time the letter’s sound shows up in my conversation, I pause, relax, and try to pronounce it correctly.

At one time, I’d developed the habit of trying so hard to say a particular word that I ended up exaggerating it to the point of adding extra syllables. When I said “please,” for example, it often became “PUL-LEE-SSS.” Now when I say the word, it sounds more like a simple “pleeez.”

The test

When our daughter visited us for a week, I had the opportunity to put my ESL-enhanced speaking skills to the test. Because she lives a distance away, we’ve had to rely on phone calls and Skype sessions, so I always look forward to our in-person conversations. But I still secretly worry about how I sound.

Several times during the week of her visit, she’d remark, “Mom, I can understand you so well. Your speech has really improved.”

Oh my gosh, that made me feel so good.

Are you experiencing challenges with learning to accommodate your dysarthria? If so, I invite you to try my strategies and tips. Let’s learn to live well while we live with ALS.

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FOR MORE ON THIS TOPIC, I SUGGEST THIS POST

ALS Dysarthria? Use These Innovative Strategies to Keep on Talking!

Why am I Singing Through a Straw, You May Ask?

Explore more posts HERE

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My home voice program:

·        Warm up: Do 10-15 minutes of humming, special mouth and jaw exercises, diaphragmatic breathing, and body stretches to help my posture.

·        Practice: I’m enrolled in a speech study sponsored by Everything ALS. My goal is to twice a month and spend 2-minutes recording words, sentences, and a paragraph about bamboo gardens. I also enrolled in the Speech Accessibility Project sponsored by the University of Illinois Urbana-Champaign.

·        Engage: I challenge myself to have longer conversations with my husband, not just the “yes, no” conversations that most couples have.

·        Be open to unique places to practice. Often when I accompany my husband on his errands, I wait alone in our van while he runs into the store. That creates my perfect, private space to practice counting, humming, and even singing out loud. Don’t mind that lady singing in the van, she’s happy and on a mission!

 

dagmar Munn
ALS and Wellness Blog

 

“Practice… Practice… Practice…”

 

 

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