Why Am I Singing Through a Straw, You Might Ask?

 

I’m always open to learning new things, especially when they involve simple ways to improve my life with ALS. When I come across something super helpful, I just have to share it with my readers.

My most recent discovery involves a simple plastic straw. In fact, it’s become a permanent addition to my daily exercise routine.

For the past six years, I’ve been challenged by the ALS symptom of dysarthria, which affects 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. Thus, when I speak, it’s with a gravelly, monotone voice. I’m often asked to repeat myself, which I do, but I default to saying the same words, only louder. It’s frustrating, and speaking this way strains my vocal cords and throat.

But maintaining the ability to communicate is important for me. So, in the past few years, I’ve explored and experimented with various ways to keep and preserve the little voice that I do have.

In addition to practicing diaphragmatic breathing and doing exercises to improve my posture, I learned vocal techniques used by actors and singers as taught in “The Living Speech Series,” by Andrea Caban.

What about the straw?

Over the holidays, I watched a YouTube video featuring a person with ataxia. The other guest was a speech-language pathologist (SLP) who described a series of techniques called semi-occluded vocal tract (SOVT) exercises. These exercises are used in many warmup and treatment protocols for professional singing, and by speaking coaches and voice and speech therapists.

Intrigued, I learned that SOVT exercises also use plastic drinking straws. The SLP described how spending a few minutes everyday breathing, humming, and singing through a straw can relax the muscles surrounding the vocal cords, as well as in the neck, and reduce fatigue when speaking.

Of course, I went on a deep internet dive to find out more and discovered a wealth of how-to videos and supporting research.

A quick how-to

Here’s how you do it: Sit tall and place a plastic drinking straw in your mouth. Hold the straw lightly with one hand, and:

1.     Breathe slowly and evenly for a few minutes.

2.     Inhale and exhale with a long “Ahhhh” sound.

3.     Try humming or even “singing” a song.

Whenever I finish these steps, my throat feels very relaxed.

These simple exercises can be repeated anytime you feel your voice or throat need a rest. Here’s a good, short video on the vocal straw exercise to help you follow along.

https://youtu.be/0xYDvwvmBIM

Are you ready to sing through a straw? I hope you give it a try.

Let’s keep helping each other learn how to live well while living with ALS.

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Dagmar Munn
ALS and Wellness Blog

Happiness is ...humming often, and with conviction.

Anonymous

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

How Echo Show Became My Personal Voice Coach

 

A few years ago, around the same time that ALS began affecting my voice, an Echo Show showed up at our house. Why? My ALS News Today publisher was interested in finding out if these types of devices would be helpful to people with different physical disabilities, and I agreed to test one out.

Even though we already owned an Amazon Echo (tower-type) device and I was batting zero trying to activate it, I had high hopes the touch-screen feature on the Echo Show would be more helpful. What I ended up learning surprised me. It evolved into a bit of serendipity and, how new uses for technology can be discovered when we least expect to find them.

Arrival and set-up

The Echo Show is a voice-activated tablet from Amazon Alexa. It can play music, podcasts, videos, news briefings, and even look things up online. The set-up was easy. Just plug it in, log onto our Wi-Fi, and begin.

I lost an entire afternoon fiddling with the touch screen, which sadly wasn’t that functional at all. Then, only three days into my new ownership, Amazon deleted all access to YouTube videos! “Oh well,” I thought, “at least I still have music and news.”

But the BIG “elephant in the room” was voice-activation. Like 80% of all ALS patients, I have dysarthria — an “ALS-voice.” It’s a slurred, slow speech with a nasal tone and an imprecise pronunciation of consonants. And no amount of repetition, variation in tone, or cajoling on my part would activate the blue light on the Echo Show.

Eventually, I gave up trying and relied instead on the work-around I’d already devised for my other devices. Using the Text-to-Talk app on my cellphone, I simply directed one automated voice to speak to another.

A few weeks later, Amazon announced a new feature called voice profiling for family members. Halfheartedly, I downloaded the app and read aloud 10 sample sentences that flashed across the screen of my Echo Show. Then I gave it a try, I called out Echo! But the device didn’t respond.

I went to bed and forgot about the whole thing.

Learning to find my voice

The following morning, my husband reminded me of the voice training from the night before and suggested I give it a try. Since our old tower Echo had been moved into the bedroom, I rolled over and called out “…Echo!”

The blue ring of light lit up!

In disbelief, I called out once more. Again, a blue light! For the next 10 minutes, I was perfectly happy just calling out and activating the blue light. Never mind following up with a question or command!

I continued to call out while slowly sitting up. But this time nothing happened. I lied back down, called out — again the blue light. After a few more attempts, I realized that speaking with a relaxed body, a calm demeanor, and a soft voice was the secret. Sitting or standing created tension in my voice. Aha! My wellness training kicked in. It’s all about posture, relaxation, and not forcing my voice. Quickly, I created a series of mental cues: drop shoulders, sit, or stand in good alignment, breathe slowly — and only then, speak with a calm voice. Bingo! Blue light! (I imagine speech therapists everywhere collectively nodding in agreement!)

My personal voice coach

We often hear parents tell children to use their indoor voice, not their outdoor voice. Well, I named my new speaking technique: my Echo-voice.

Echo Show’s feedback became my personal voice coach. And a strict one at that! Calm voice = blue light. Speak with tension = no response.  What followed were days and days of me calling out: Echo! Echo! Echo! Echo! ...My husband searched for earplugs!

Over time, I progressed to adding questions and commands. Each time, Echo Show rewarded my calm voice with jokes, morning news, weather reports, and, yes, music.

I know I’m not curing my dysarthria. But I believe the visual feedback from Echo Show is teaching me how to better manage and hopefully, save what little voice I have.

I’ve even begun applying my new voice skill to everyday conversations with others. Before speaking, I pause to mentally cue my body to be in good posture, relax, drop my shoulders, and breathe.

Using my newfound Echo-voice means I expend less effort speaking, I feel less tension, and don’t have to repeat words as often as before.

Lessons learned

Will this innovative use of Echo Show work for others living with ALS and dysarthria? I don’t know, but I sure hope it might help some.  

This unique experiment with an Echo Show taught me that technology can provide valuable assistance to those of us living with physical disabilities. And if we keep our minds open to possibilities, technology can also teach us how to live better — despite our physical disabilities.

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

Photo courtesy Dagmar Munn

Dagmar Munn
ALS and Wellness Blogger

Be open to suggestion, no one is so perfect that they may not need advice from time to time.

 Baltasar Gracian

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.

_____________________________________

Watch a short introduction to the course.

https://vimeo.com/173663824

_____________________________________

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!

_____________________________________

 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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Do YOU Speak A-L-S-ky? (ALS Humor)

Image: Hotblack1

Do you speak A-L-S-ky?

I do.

Of course, speaking A-L-S-ky was not on my bucket-list of new languages to learn during these - - my hazy, crazy, lazy retirement years.  Actually, I was hoping for something more on the line of say,  Italian.

But, A-L-S-ky it is, and as they say in Italy - - È quello che è (It is what it is).

My lessons in A-L-S-ky commenced about three years ago. That’s when my tongue began operating at half-speed. It’s actually a common and expected symptom of ALS. For example, I use a “bar-rush” for my hair,” ask for “a fawk and a sch-poon” at dinner and make sure that my “electric schk-ooter is fully chawged.” Obviously, I hear “I beg your pardon?!!” quite a bit now.

So, what’s the upside?

Don’t get me wrong, speaking fluent A-L-S-ky does have its benefits. Well, so far I’ve found only - - two:

Whenever we pull into the drive-through lane of our local fast-food establishment and encounter a squawking, mal-functioning speaker, I for some reason feel just like E.T.; who finally finds his lost alien companions; the squawking makes perfect sense to me! Just like a well-trained U.N. translator, I calmly relay the conversation back to my frustrated husband. “She SAID, do we want the order to-go, or to eat in the car?” Only what actually comes out of my mouth is, “Schee ZED, do we wand da orda to-go or to ead in da caa?”

You probably already can guess the limitations to that special skill!

The second and only other benefit to speaking A-L-S-ky involves telephone solicitors - - THEY now hang up on ME!

I remember one recent instance involving a fellow selling computer software; he apparently had reached the end of his rope for dealing with smart comebacks from irate folks rejecting his sales pitch. Dialing my number sealed his fate.

Me: “Heh-woe?”

He: (silence….)

Me: “I’m verwy sawry but I have ALS and…“

He cut me off: “Ohhhhh, heh-woe is it? Well, I can play that game too!   …HEH-WOE back to you, Missy! …Nyah, nyah, nyah!”

Click - - and then, he hung up!

Answering the phone in A-L-S-ky also helped limit my time spent on the phone with pollsters during our recent (and volatile) election season. Yup, they all hung up on me too.

…And the downside?

What I call A-L-S-ky, is officially known as dysarthria and defined as slurred, slow speech with a nasal tone and imprecise pronunciation of consonants. It occurs in 80% of all ALS patients. I figure, with 450,000 ALS patients currently worldwide, 80% makes it 360,000 of us - - almost a good-sized city - - all struggling with dysarthria!

Of all the various symptoms of ALS (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) research has shown that losing the ability to speak is frequently identified as the worst aspect of having the disease. That’s because we humans take our ability to communicate for granted and losing it can erode the quality of our lives. We become mere spectators; socially isolated and as noted in my previous post, "How to Live a Balanced Life...",  isolation leads to feelings of hopelessness, which in turn can bring on suicidal thoughts. So it’s vitally important that we continue to stay involved, connected and participating in life as much as is possible.

So, what are the options?

Like so many others who live with dysarthria, I’ve learned to compensate by adding in extra body language and facial expressions to help listeners understand what I’m trying to say. Short of forcing folks into an all-out game of Charades, I’ve also learned to edit what I say; reducing colorful explanations and in-depth opinions to simple concepts requiring fewer words. Often I feel as if stuck in in a badly captioned foreign-language film where on-screen we see mouths moving and much arm waving while down below the movie’s captioning simply reads: “Yes.”

In days of old, we’d have to carry around chalk and a chalkboard or paper and pen to scribble down questions and answers for others to read. Now, we have apps that transform a computer, tablet or smart-phone into a text-to-voice device. Just type out a word, hit the “play” tab and let the device do the talking. Hmmm, I wonder…aren’t we still just using a fancy version of the ‘old pen and paper?’

What about this new voice-activated technology? I’ve read it’s the wave of the future, soon to become the dominant way we interact with our devices. Seems the whole world is fed up with typing on keyboards and tapping on screens, “Just talk to it!” the ads urge. But what if we can’t talk? Or if we can, only A-L-S-ky comes out?

My phone’s “Voice Search” app is hopeless when it comes to understanding A-L-S-ky.

I ask: “Whads the bes Bah-Bee-Que wes-wrandt in Tooo-son?”

It answers with: “Here are your selections for - venice bars in Tulsa..."

Didn’t the folks on Star Trek have it all figured out?

Yes, Captain Kirk’s team had the Universal Translator; a hand-held device that translated alien spoken languages in real-time communication. And for us, the future has finally arrived!

Real-time translation technologies and software is popping up everywhere. Apps translate up to 90+ languages, Skype now offers real-time translations of eight languages (more to be added) and hand-held devices are emerging. Here’s a fun and impressive one developed by Logbar in Japan, that debuted just this year - - the “ili.”  http://www.iamili.com/index.html

Now you’d think an enterprising inventor-entrepreneur would see the potential sales opportunity in 360,000 customers all speaking A-L-S-ky, all primed to purchase a hand-held real-time translator that recognized their particular language!

But wait - - News Flash! - - Soon to arrive is a new addition to our family home!

Alexa, is her name. Yup, we are joining the 4 percent of U.S. households who already have an artificial intelligence powered personal assistant. Although I’m disappointed to read it only knows one language - - English, I am heartened to read that it quickly learns its owner's voice inflections, especially owners who speak English with a heavy... foreign... accent!

I can’t wait for my own “First Contact” moment - - when with bated breath I say - - “Alexa… do you speak A-L-S-ky?

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What happens next?

 Read "Lessons Learned from Echo Show" for the conclusion to this story!

DagmarMunn
ALS ansWellness Blogger

"Only through communication can human life hold meaning."

Paulo Freire

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