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“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. But that’s exactly how I felt last week when I pressed the submit button on my final voice recording for <a href="https://saa.beckman.illinois.edu/">the Speech Accessibility Project</a>.
Readers of <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> will know that, because I have ALS, one of my quests is to prevent my <a href="https://alsnewstoday.com/speech-problems/">ALS-related dysarthria</a> from robbing me of my ability to speak. <a href="https://alsnewstoday.com/columns/can-automated-technology-including-ai-help-with-als/">My other quest</a> has been <a href="https://alsnewstoday.com/columns/voice-recognition-study-ai-advancements-speech/">to support efforts</a> to improve how voice-activated devices respond to voices like mine.
Dysarthria feels like having a bad case of laryngitis and a lazy tongue that&#8217;s two steps behind what my mind wants to say. When I speak with family members and friends, they allow me the extra time it takes for me to pronounce multisyllable words or long sentences. But voice-activated devices have no such patience. I’m cut off midword, and the device searches for what it thought I said. For example, if I ask for &#8220;the best restaurants in Tucson, Arizona,&#8221; I often end up with instructions on how to get &#8220;the best rest.&#8221;
I’m sure my fellow sufferers of dysarthria can share much funnier stories than mine about their interactions with voice activation.
[recommended-reading id=82022]
The devices, however, are not to blame, and software designers don’t set out to build systems that ignore certain demographic groups or voice variations. The shortcomings result from how many and what types of voices were used to &#8220;train&#8221; the software. Giving it additional samples of irregular speech helps it recognize and better understand what a wider range of voices is saying.
That’s why when I first read about the Speech Accessibility Project in an <a href="https://alsnewstoday.com/news/university-illinois-speech-project-recruit-als-patients/">ALS News Today article</a>, I said, “Count me in.”
<h3>What happened next</h3>
I began by meeting online with the project’s speech-language pathologist, so she could assess my speech and explain how I&#8217;d make the online recordings. We reviewed the consent form, and she addressed my questions. I learned that I had three months to complete my recordings, but I could go at my own pace, stopping and starting again at the point where I&#8217;d left off.
Once I began doing my recordings, I discovered the sessions were set up as if I were playing an online game, complete with a congratulatory message each time I finished a designated level. The levels varied from containing typical single-word commands such as &#8220;stop,&#8221; &#8220;listen,&#8221; or &#8220;pause&#8221; to phrases like “What’s the temperature in Cincinnati, Ohio?” (I had to take in a big breath of air for that one!)
The Speech Accessibility Project still needs voice recordings from people besides those with ALS. People with other neurological conditions, such as <a href="https://parkinsonsnewstoday.com/">Parkinson’s disease</a>, Down syndrome, stroke, aphasia, and cerebral palsy are invited to apply. If you’re interested in participating, just follow the link above.
Let’s help technology learn more about ALS. If computers learn how to understand us better, I believe we can continue to live well while <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>.
<hr />
DAN Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Using my speech issues to improve voice recognition software

An initiative at a University of Illinois campus that aims to improve voice recognition software for people with speech difficulties is recruiting adults in the U.S. and Puerto Rico living with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS).
Known as the <a href="https://saa.beckman.illinois.edu/" rel="nofollow">Speech Accessibility Project</a>, it is led by the Urbana-Champaign school&#8217;s Beckman Institute for Advanced Science Technology and takes steps to secure and safeguard participants&#8217; identifying information. Voice recordings from people with other neurological conditions, such as <a href="https://parkinsonsnewstoday.com/news/parkinsons-disease-speech-software-initiative-still-seeking-participants/">Parkinson&#8217;s disease</a>, Down syndrome, stroke or aphasia, and cerebral palsy, are also being collected or sought.
The project ultimately seeks to use the recordings to train voice recognition technologies to better understand people with a broad range of speech patterns and disabilities, including the <a href="https://alsnewstoday.com/speech-problems/">speech difficulties</a> (known as dysarthria) that accompany <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>.
[recommended-reading id=88913]
<h3>Speech, known to be affected by ALS, can be helped by voice technologies</h3>
Supported by Amazon, Apple, Meta, Google, and Microsoft, the project has shared more than 100,000 speech samples with these companies to date. It plans to make data available to nonprofits and companies that also commit to safeguarding participants&#8217; private information.
&#8220;Just like human listeners, AI [artificial intelligence] listeners do better when they have some experience with the type of speech they&#8217;re listening to,&#8221; Mark Hasegawa-Johnson, the project&#8217;s leader and a University of Illinois Urbana-Champaign professor of electrical and computer engineering, said in a <a href="https://speecaccessibilityproject.beckman.illinois.edu/article">Beckman Institute news article</a>.
Leveraging voice recognition technology can potentially change lives, he said.
&#8220;Stephen Hawking, the physicist, continued his research for decades after he became nonvocal by using an automatic speech synthesizer to communicate on his behalf. Many people with ALS now follow Hawking&#8217;s lead … so that they will be able to communicate with loved ones even when their voices become less intelligible,&#8221; Hasegawa-Johnson added.
Dysarthria can result in difficulty articulating, slow and slurred speech, and a nasal, breathy, or hoarse voice. ALS patients also frequently feel tired after speaking, and can find voice projection challenging.
In the disease&#8217;s later stages, many depend on <a href="https://www.als.org/navigating-als/living-with-als/therapies-care/augmentative-alternative-communication">augmented alternative communication</a> or speech-generating equipment to speak.
<h3>Team Gleason assisting with Speech Accessibility Project</h3>
&#8220;The Speech Accessibility Project seeks to make it possible for people with ALS to communicate using their own voices as long as possible by training automatic speech recognizers to understand voices that have reduced intelligibility because of advancing symptoms of ALS,&#8221; Hasegawa-Johnson said.
<a href="https://teamgleason.org/">Team Gleason</a>, which provides ALS patients with a variety of assistive technology and other support services, shares the project&#8217;s goal of expanding the usefulness of speech recognition tools.
&#8220;Technology has the ability to overcome communication barriers and increase independence,&#8221; said Blair Casey, the group&#8217;s executive director. &#8220;Team Gleason is proud to help accelerate this effort for people living with ALS and anyone else with speech differences. Team Gleason&#8217;s involvement in the Speech Accessibility Project will positively impact millions of people globally whose speech may be challenging for others to understand.&#8221;
People with ALS and caregivers who participate in the project will be compensated for their time with up to $180 in Amazon eCodes. Awards will be given in three increments: $60 after recording 200 samples, another $60 following the 400th recording, and a final $60 installment after recording 600 samples, the university reports.
Due to state privacy laws, people in Illinois, Texas, and Washington currently cannot take part in the project.

University of Illinois recorded voice project recruiting ALS patients

To help those who have lost their ability to speak easily, Georgia Southern University’s <a href="https://chp.georgiasouthern.edu/rehabilitation/ritecare-center-for-communication-disorders/" rel="nofollow">RiteCare Center for Communications Disorders</a> again is recruiting students, faculty, and staff members to make recordings for submission to a <a href="https://vocalid.ai/voicebank/" rel="nofollow">voice bank</a>.
The center’s third annual Voice Drive, which runs through May 2, is aimed at improving communication for people with diseases that rob them of their voice, such as <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS), <a href="https://huntingtonsdiseasenews.com/what-is-huntingtons-disease">Huntington’s disease</a>, apraxia, and aphasia.
Participants may make recordings at their home. Once the voices are submitted to <a href="https://vocalid.ai/about-us/" rel="nofollow">VocalID,</a> a voice artificial intelligence company, and stored in its human voice bank, patients with speech loss can use the recordings to help create a voice for themselves.
[recommended-reading id=82022]
<h3>Dysarthria, difficulties with speech, affects most ALS patients</h3>
“A voice is unique to an individual, and the loss of a voice may result in a loss of one’s identity,” Tory Candea, the RiteCare Center’s clinical coordinator, said in a <a href="https://news.georgiasouthern.edu/2023/02/22/ritecare-center-asks-georgia-southern-community-to-lend-their-voice-to-help-others-find-theirs/">university press release</a>. “The use of <a href="https://www.als.org/navigating-als/living-with-als/therapies-care/augmentative-alternative-communication">Augmentative Alternative Communication</a> (ACC) can assist those who have lost their voices, yet the standard voices programmed on ACC devices may sound mechanical, robotic, or unnatural.”
A <a href="https://alsnewstoday.com/symptoms-of-als/">common ALS symptom</a>, estimated to affect more than 80% of patients at some point, is dysarthria, or <a href="https://alsnewstoday.com/speech-problems/">speech problems</a> due to weakness in muscles around the mouth and jaw. Dysarthria can be marked by difficulty pronouncing consonants, slow and slurred speech, trouble moving the tongue, voice quality issues, and weak or overreactive gag reflex.
Patients also frequently <a href="https://www.als.org/navigating-als/resources/fyi-suggestions-and-information-about-speech-changes" rel="nofollow">feel tired after speaking</a>, and weakened lung muscles make voice projection difficult. As ALS advances, people tend to speak less and use shorter sentences as their disorder advances.
It takes about 3,500 sentences to create a complete digital voice, according to RiteCare. Such collection takes an average of five to seven hours, with recordings broken into 10- to 15-minute sessions over several weeks. This year&#8217;s goal is 15,000 sentences, up from the 9,696 collected last year. Participants will need a computer and microphone headset.
“The more individuals who donate their voices, the more options a person who has lost their voice is able to choose from, allowing them the opportunity to find a voice that better matches their personality and identity,” Candea said. “By hosting this voice drive, we hope to help these individuals retrieve control over their voice and improve their overall ability to communicate.”
To register for Voice Drive or to receive more information, send an email to Candea at tcandea@georgiasouthern.edu.
The RiteCare Center assesses and treats those with communication disorders or delays. Services are provided by graduate students in the speech-pathology program at the Georgia Southern University Armstrong Campus. The students are supervised by licensed and certified speech-language pathologists.

Georgia Southern adding to voice bank for ALS patients, others

I’m always open to learning new things, especially when they involve simple ways to improve my <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>. 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 <a href="https://alsnewstoday.com/symptoms-of-als-2/">ALS symptom</a> of <a href="https://alsnewstoday.com/speech-problems/">dysarthria</a>, 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 <a href="https://alsnewstoday.com/columns/als-learning-how-to-speak-breathe-with-ease/">various ways to keep and preserve</a> the little voice that I do have.
In addition to practicing <a href="https://alsnewstoday.com/columns/als-breathe-well-balloons-bubbles/">diaphragmatic breathing</a> and doing exercises to improve my posture, I learned vocal techniques used by actors and singers as taught in “<a href="https://www.andreacaban.com/als">The Living Speech Series,</a>” by Andrea Caban.
[recommended-reading id=80731]
<h3>What about the straw?</h3>
Over the holidays, I watched a <a href="https://youtu.be/zCa4So3GzEo">YouTube video</a> featuring a person with <a href="https://www.ataxia.org/what-is-ataxia/">ataxia</a>. The other guest was a speech-language pathologist (SLP) who described a series of techniques called <a href="https://www.voicescienceworks.org/sovt-exercises.html">semi-occluded vocal tract (SOVT) exercises</a>. 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 every day 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 <a href="https://youtu.be/SnyiT8VAtPU">how-to videos</a> and <a href="https://www.tandfonline.com/doi/abs/10.1080/17549507.2020.1787514?journalCode=iasl20">supporting research</a>.
<h3>A quick how-to</h3>
Here&#8217;s how you do it: Sit tall and place a plastic drinking straw in your mouth. Hold the straw lightly with one hand, and:
<ol>
<li>Breathe slowly and evenly for a few minutes.</li>
<li>Inhale and exhale with a long “Ahhhh” sound.</li>
<li>Try humming or even “singing” a song.</li>
</ol>
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 <a href="https://youtu.be/0xYDvwvmBIM">vocal straw exercise</a> to help you follow along.
Are you ready to sing through a straw? I hope you give it a try. Let’s continue to learn how to live well while living with ALS.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: dysarthria

Using my speech issues to improve voice recognition software

University of Illinois recorded voice project recruiting ALS patients

Georgia Southern adding to voice bank for ALS patients, others

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