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Speech Management for ALS: Ventilator Interventions and Augmentative and
Alternative Communication (AAC) Devices
Jeannette Hoit Cassandra FauxDepartment of Speech, Language, and Hearing Sciences
University of Arizona
ALS Clinical ConferencePhoenix, AZ
November, 2014
ALS destroys speech and strips away the ability to communicate.
Normal Speech ProductionNormal Speech Production
Soft voice Short phrases Hoarse voice Hypernasal voice Imprecise ‘tongue’ consonants
(th, t, d, k, g, s, sh, ch, j) Imprecise ‘lip’ consonants
(p, b, f, v)
Speech Impairment in ALSSpeech Impairment in ALS
The Move from Speech to AACThe Move from Speech to AAC
Spinal
Bulbar
Common speech symptom:
speaking dyspnea“breathing work/effort”
“air hunger”
Respiratory muscle demands are greater for speaking than rest breathing;
higher alveolar pressures, larger lung volumes, faster inspiratory flows
Spinal ALSSpinal ALS
Common speech signs:
Reduced loudness
Short phrases
Slow inspirations
Spinal ALSSpinal ALS
Behavioral treatments◦ Respiratory muscle training (inspiratory/expiratory)◦ Modifications of speech breathing◦ Speaking with ‘intent’
Prosthetic treatments◦ Amplification◦ Postural supports (e.g., abdominal binder)◦ Ventilator
Treatments for Respiratory-Based Treatments for Respiratory-Based Speech Problems Speech Problems
Invasive
Noninvasive
Survival and quality of life improve with noninvasive ventilation for people with ALS (Bourke et al., 2006)
Ventilators and ALS: Survival and Ventilators and ALS: Survival and QOLQOL
Bourke et al. (2006); Radunovic et al. (2013)
Invasive VentilationInvasive Ventilation
Hixon & Hoit (2005)
Invasive VentilationInvasive Ventilation
Hixon & Hoit (2005)
Invasive VentilationInvasive Ventilation
Hoit & Banzett (1997)
Invasive VentilationInvasive Ventilation
Ventilator adjustments
◦ Increase the time that pressure is above voicing threshold (more continuous speech with fewer and shorter pauses)
◦ Reduce the magnitude of pressure variation (better voice quality and less loudness variation)
Noninvasive VentilationNoninvasive Ventilation
Facemask
Nosemask
Nasal pillows
Free-standingmouthpiece
Noninvasive VentilationNoninvasive Ventilation
Interface Advantages Disadvantages
Facemask None Part of face obscured;Jaw encumbered;Speech distorted and attenuated
Nosemask Can see most of face;Jaws/lips unencumbered
Nasal sounds distorted
Nasal Pillows Can see most of face;Jaws/lips unencumbered
Nasal sounds distorted
Free-Standing Mouthpiece
Can see all of face;Jaws/lips unencumbered
Long inspiratory pauses
Compensatory strategies
◦ Overarticulate◦ Take breaths more often◦ Avoid speaking over noise◦ Have listener look at you◦ Energy conservation
Planning ahead for AAC
Behavioral Treatments to Maintain SpeechBehavioral Treatments to Maintain Speech
Recorded messages (digitizing words or phrases spoken by the person for use in speech generating device: SGD)
Protocol to digitize speech samples to create a synthesized voice based on a person’s own speech features
ModelTalker https://www.modeltalker.org/demo/
Fatiguing/Time Consuming/After speech declines not possible
Speech Enhancer ◦ http//www.speechenhancer.com/
ChatterVox◦ http://www.chattervox.com
Voice AmplifiersVoice Amplifiers
Dragon Naturally Speaking
MyVoice X (free app for Mac and Windows that allows you to enter and save phrases and have them spoken)
Speech-to-TextSpeech-to-Text
Low Technology (communication boards)
High Technology (dedicated/integrated/non-dedicated speech generating devices, mobile technology)
Forms of AACForms of AAC
Communication Boards Topic Boards
Alphabet Boards◦ E-tran display
Writing◦ White Board (App)◦ Dry erase◦ Notebook
Direct Selection
◦ Head Pointers
◦ Laser pointer Low tech solutions
Partner-supported systems◦ Partner-assisted scanning
Low Technology AccessLow Technology Access
Non-Dedicated◦Software
Etriloquist: http://www.etriloquist.comCHIPSpeaking
Dedicated Integrated
Mobile Devices (Android, iPhone, iPad, iTouch) ◦Apps
Verbally (Intuary)Assistive Chat (Assistive Apps)Talk Now for Android (appszoom)
High TechnologyHigh Technology
Able AAC Free (by Able Vox) Pogo Boards (by Talk to Me Technologies, LLC)
Alexicom AAC (by Alexicom Tech LLC)
Say Hi AAC (by Gwendolyn Strong Foundation) PandaPal (AAC) (by Kim Scott, M.S., CCC-SLP)
Flip Writer AAC (by Navanit Arakeri) SayItForMeLite (by PowerTurn, Inc) urVoice AAC (by Cleric Software Solutions)
Sono Flex Lite (by Tobii Technology)
SaySomeMore (by Dale Hubert) EESpeechBasic (by Elite Express Solutions, Inc) CommunicationAide Free: AAC/Speech Therapy (by ObjectGraph, LLC) OneVoice Lite – AAC (by Legend)
Verbally (by Intuary)
EESpeech Lite – AAC (by Elite Express Solutions, Inc) Grid Player (by Sensory Software International) SoundingBrd (by AbleNet) VoiceSymbol AAC (by Unlimiter) Gabby Tabs Lite – AAC for Kids (by Tech Unlimited) Talkingtiles (by Mozzaz Corporation) SmallTalk (by Lingraphica)
◦ Has different apps for different categories of conversations (all free)
Free AAC Apps Available for Mobile Technology (Text-to-Speech and Symbol-Based)
My First AAC (by Injini) - $24.99 AAC Evaluation Genie (by Hump Software) - $11.99 Posco AAC (by Bryan Keller) - $9.99 Quick Talk AAC (by Digital Scribbler, Inc) - $24.99 aacorn AAC (by aacorn) - $189.99
Proloque2Go (by AssistiveWare) - $219.99 AAC Ferret (by INCLUSIVE LEARNING TECHNOLOGY) - $4.99
Able AAC (by AbleVox) - $24.99 Talking Picture Board (by Scott Yang) - $1.99 Picture AAC (by Hearty SPIN) - $29.99 TouchChat HD – AAC with WordPower (by Silver Kite) - $299.99 Quick Type AAC (by Digital Scribbler, Inc) - $1.99 Choiceworks (by BBee Visual, LLC) - $6.99 Able Jr AAC (by Ablevox) - $24.99 SpeechHero AAC (by Andrew McKinney) - $99.99 Avatalker AAC (by Metova, Inc) - $189.99 Easy Speak HD – AAC (by Pocket Apps Canada, Inc) - $49.99
For-Purchase AAC Apps Available for Mobile Technology (from $1.99 to $299.99)
Bluetooth (AbleNet)
Tapio (Origin Instruments)
Switch Access for Mobile TechnologySwitch Access for Mobile Technology
Headmouse Extreme◦ Origin Instruments
◦ Click-N-Type (Lake Software)◦ Dasher◦ Origin Instruments SofType◦ WiVik◦ My-T-Mouse◦ Hot Virtual Keyboard
Access Through On-Screen Access Through On-Screen Keyboards Keyboards
EyeMax
EyeTech Digital Systems
AccentNuEye
EyeGaze Edge
Tobii I-Series
Tobii EyeMobile
Cursor control with eye movement Least fatiguing movement Preserved volitional movement Calibration Eyelid control Oculomotor Apraxia (Rambold et al., 2006; Zadikoff & Lang, 2004)
Cataracts Glasses (angling the camera)◦ Reducing glare
Easy to train
Medicare◦ 13 month cap◦ Hospice◦ December 1, 2014 decision
Medicare Funding & Integrated SystemsMedicare Funding & Integrated Systems
PCEye Go (Tobii)
EyePro (EyeTech Digital Systems)
Peripheral Eye TrackerPeripheral Eye Tracker
Embedded Technology into goggles or glasses
EyeSpeak: Beyond Communication EyeSpeak: Beyond Communication by Luso Vu-USAby Luso Vu-USA
Mobile Eye Tracking SystemsMobile Eye Tracking Systems
ThinkTalk AppThinkTalk App
Requires the use of a NeuroSky MindWave Mobile Bluetooth-enabled headset
Available in the iTunes App Store and Google Play for $9.99
Compatible with Android 1.6+
Compatible with iOS 7.0+ on iPhone, iPad, and iPod touch
Easy-to-use interface
https://itunes.apple.com/us/app/thinktalk/id910349915?mt=8
https://itunes.apple.com/us/app/thinktalk/id910349915?mt=8
NeuroSky MindWave MobileNeuroSky MindWave Mobile
Research-grade EEG headset available (packages starting at $99.99)
Additional iOS and Android apps are available on iTunes App Store and Google Play, respectively
http://www.thinkgeek.com/product/eed1/http://store.neurosky.com/collections/mindreflector-promo/products/brainwave-starter-kit
Brain computer interface (BCI) technology has generated considerable research interest for people who are physically “locked-in” such as those in the late stages of ALS
To date, no investigations have reported of the use of BCI throughout the disease progression of ALS to determine if PALS would be able to maintain training and functional use of the systems.
Memory Books (App: Scrapbook by Album tArt LLC) Major Events Visual Scenes
Phukan et al., 2011
Insurance & Medicare ALS Association AzTAP◦ SW Human Development◦ TACT
MDA VA Out-of-pocket purchase
The ability to communicate is key to maintaining
quality of life in people with ALS.
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