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

Announcing BIG NEWS for all ALS patients living with dysarthria – You can retrain your voice, learn to breathe better, and -- keep on talking! 

Thanks to the new innovative online course The Living Speech Series, developed by voice, speech and accent specialist, Andrea Caban. How do I know it works? Because I am enrolled in the course and so far, I am delighted with the results!

Dysarthria is the slurred, slow speech with a nasal tone and imprecise pronunciation of consonants that can occur in 80% of ALS patients.

It’s something I’ve been struggling with since 2014. And, like most other ALS patients with this symptom, I was told by my medical team that eventually I would lose the ability to speak, and from that point on, assistive technology would speak for me. 

Research has shown that of all the various ALS symptoms (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) losing the ability to speak is frequently identified as the worst aspect of having the disease.

But now, I am learning how to -- keep on talking!

A Quick Background on the Living Speech Series

 
In 2015, an ALS patient with dysarthria sought help from Andrea Caban, head of Voice and Speech in the Department of Theatre Arts at California State University, Long Beach (CSULB). Although Caban was not familiar with ALS, she taught the patient several techniques traditionally used by actors for voice training. These techniques included breathwork, posture, pitch, and pronunciation. Here is a short introduction video: https://vimeo.com/173663824.

Later In 2015, inspired by their success, Caban collaborated with that same ALS patient to create The Voice Bank, a one-woman show performed by Caban, sharing highlights of their voice sessions together and her patient’s fight to keep speaking.

Caban then created her online course and was invited by the Speech, Language Pathologists at UC Medical Center to participate in a clinical study using her methods with their patients.

Finally, this past January, I read a post on the ALS Association blog describing Caban’s performance and her course, which led me to write a column about Caban - - and thanks to the generosity of Andrea Caban, I am now enrolled in her four-week online course.

Course Basics

The Living Speech Series consists of six instructional videos and a 15-page detailed study guide. The course costs $200.00

You can download and/or print the study guide and the videos can be accessed repeatedly, as needed via a personal login code.

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Watch a short introduction to the course.

https://vimeo.com/173663824

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Sharing My Own Journey and Experiences

During Week 1, I learned to breathe more fully by retraining my diaphragm and my transverse abdominal muscle.

I also identified and released habitual tension from my body. For example, I became aware of my tendency for habitual breath-holding.  Probably a result of the changes to my overall balance, strength, and stability brought on by ALS. During simple movements, I’d tense my stomach muscles and hold my breath. Now, when I push my rollator forward, I breathe through the movement. When I adjust my sitting posture and begin typing, I breathe through the movement. And so on. My breathing relaxed and deepened; it felt great!

For the next few weeks, I followed along with the videos; exploring making sounds and finding a new higher and/or lower pitch for my voice.  Even though the higher sound was comfortable, I ended up settling on the lower pitch and I discovered I could speak for longer periods of time without fatigue. But I was a little worried about what others would think. To my surprise, no one seemed to mind and the best part was – I was being understood! Even talking on the phone (previously one of my biggest challenges) I was assured by those at the other end of the line that they understood me just fine!

I’m now in the mode of practice, practice, practice. Moving articulations forward in my mouth and testing out accents has been a challenge. I’m trying to undo how I’ve always pronounced words for the past 60+ years! But I am motivated! Slowly, my “K” sounds are crisper, my “-ing’s” are being heard and the lower pitch is feeling more normal. My new normal!

Confirmation at the ALS Clinic

Last week was my scheduled visit to the ALS Clinic and I was curious as to how my new voice and breathing would be accepted. Well, right away my spirometry score improved! 97%! Eight years ago I was at 101% and it’s been dropping steadily ever since. At my previous visit I managed 94% -- I know, I know, some patients would love that score, but I saw the trend of decline -- despite daily exercise. This time the test felt easy and I wasn’t exhausted from doing it.

While visiting with my Speech-Language Pathologist, I learned that she was well aware of the techniques of using a higher pitch, moving articulations to the front of the mouth, and using breath-from-the-belly when speaking. She even agreed that ALS patients should learn them, but thought many patients weren't motivated to try, so they weren’t routinely offered. However, she did compliment me on my new higher pitch and even offered a few suggestions of her own for me to try. Of course, the minute I arrived home I promptly emailed her all of my information on Andrea Caban and her course!

Now it’s your turn; if you have dysarthria it is worth your time to look into how this program might help you. If you know someone who is struggling with this ALS symptom, please share this exciting news with them. 

We can improve the quality of our lives and now, we can -- keep on talking!

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 Watch the one-woman performance

of the "The Voice Bank"

Dagmar Munn
ALS and Wellness Blogger

"Among my most prized possessions 

are words that I have never spoken."

Orson Rega Card

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