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Speech Management for ALS: Ventilator Interventions and Augmentative and Alternative Communication (AAC) Devices Jeannette Hoit Cassandra Faux Department of Speech, Language, and Hearing Sciences University of Arizona ALS Clinical Conference Phoenix, AZ November, 2014
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Presentation 213 jeannette hoit and cassandra faux speech management for als_ventilator based intervention and aac devices

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Page 1: Presentation 213 jeannette hoit and cassandra faux speech management for als_ventilator based intervention and aac devices

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

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ALS destroys speech and strips away the ability to communicate.

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Normal Speech ProductionNormal Speech Production

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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

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The Move from Speech to AACThe Move from Speech to AAC

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Spinal

Bulbar

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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

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Common speech signs:

Reduced loudness

Short phrases

Slow inspirations

Spinal ALSSpinal ALS

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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

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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)

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Invasive VentilationInvasive Ventilation

Hixon & Hoit (2005)

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Invasive VentilationInvasive Ventilation

Hixon & Hoit (2005)

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Invasive VentilationInvasive Ventilation

Hoit & Banzett (1997)

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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)

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Noninvasive VentilationNoninvasive Ventilation

Facemask

Nosemask

Nasal pillows

Free-standingmouthpiece

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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

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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

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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

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Speech Enhancer ◦ http//www.speechenhancer.com/

ChatterVox◦ http://www.chattervox.com

Voice AmplifiersVoice Amplifiers

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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

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Low Technology (communication boards)

High Technology (dedicated/integrated/non-dedicated speech generating devices, mobile technology)

Forms of AACForms of AAC

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Communication Boards Topic Boards

Alphabet Boards◦ E-tran display

Writing◦ White Board (App)◦ Dry erase◦ Notebook

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Direct Selection

◦ Head Pointers

◦ Laser pointer Low tech solutions

Partner-supported systems◦ Partner-assisted scanning

Low Technology AccessLow Technology Access

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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

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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)

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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)

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Bluetooth (AbleNet)

Tapio (Origin Instruments)

Switch Access for Mobile TechnologySwitch Access for Mobile Technology

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Headmouse Extreme◦ Origin Instruments

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◦ 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

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EyeMax

EyeTech Digital Systems

AccentNuEye

EyeGaze Edge

Tobii I-Series

Tobii EyeMobile

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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

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Medicare◦ 13 month cap◦ Hospice◦ December 1, 2014 decision

Medicare Funding & Integrated SystemsMedicare Funding & Integrated Systems

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PCEye Go (Tobii)

EyePro (EyeTech Digital Systems)

Peripheral Eye TrackerPeripheral Eye Tracker

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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

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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

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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

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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.

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http://www.youtube.com/watch?v=NIG47YgndP8

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Memory Books (App: Scrapbook by Album tArt LLC) Major Events Visual Scenes

Phukan et al., 2011

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Insurance & Medicare ALS Association AzTAP◦ SW Human Development◦ TACT

MDA VA Out-of-pocket purchase

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The ability to communicate is key to maintaining

quality of life in people with ALS.

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Ball, L. J., Beukelman, D. R., & Pattee, G. L. (2004). Acceptance of augmentative and alternative communication technology by persons with amyotrophic lateral sclerosis. Augmentative and Alternative Communication, 20(2), 113-122. http://dx.doi.org/10.1080/0743461042000216596

Ball, L. J., Nordness, A. S., Fager, S. K., Kersch, K., Mohr, B., Pattee, G. L., & Beukelman, D. R. (2010). Eye-gaze access to AAC technology for people with amyotrophic lateral sclerosis. Journal of Medical Speech-Language Pathology, 18(2), 11-23.

Baxter, S., Enderby, P., Evans, P., & Judge, S. (2012). Barriers and facilitators to the use of high-technology augmentative and alternative communication devices: a systematic review and qualitative synthesis. 47(2), 115-129. http://dx.doi.org/10.1111/j.1460-6984.2011.00090.x

Beukelman, D. R., Fager, S., Ball L., & Dietz, A. (2007). AAC for adults with acquired neurological conditions: A review. Augmentative and Alternative Communication, 23(3), 230-242. http://dx.doi.org/10.1080/07434610701553668

Bourke, S., Tomlinson, M., Williams, T., Bullock, R., Shaw, P., & Gibson, G. (2006). Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: A randomised controlled trial. Lancet Neurology, 5, 140-147.

Doyle, M., & Phillips, B. (2001). Trends in augmentative and alternative communication use by individuals with amyotrophic lateral sclerosis. Augmentative and Alternative Communication, 20(2), 113-122. http://dx.doi.org/10.1080/0743461042000216596

Fried-Oken, M., Fox, L., Rau, M. T., Tullman, J., Baker, G., Hindal, M., Wile, N., Lou, J. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication, 22(3), 209-221. http://dx.doi.org/10.1080/07434610600650276

Hess, D. (2006). Noninvasive ventilation in neuromuscular disease: Equipment and application. Respiratory Care, 51(8), 896-912.

Hixon, J., & Hoit, J. (2005). Evaluation and Management of Speech Breathing Disorders. San Diego: Plural Publishing.

Hoit, J., Banzett, R., Lohmeier, H., Hixon, T., & Brown, R. (2003). Clinical ventilator adjustments that improve speech. Chest, 124, 1512-1521.

Kübler, A., Nijboer, F., Mellinger, J., Vaughan, T. M., Pawelzik, H., Schalk, G., . . . Wolpaw, J. R. (2005). Patients with ALS can use sensorimotor rhythms to operate a brain-computer interface. Neurology, 64, 1775-1777. http://dx.doi.org/10.1212/01.WNL.0000158616.43002.6D

Light, J. & McNaughton, D. (2014). Communicative competence for individuals who require augmentative and alternative communication: A new definition for a new era of communication? Augmentative and Alternative Communication, 30(1), 1-18. http://dx.doi.org/10.3109/07434618.2014.885080

McNaughton, D., Light, J., & Groszyk. (2001). “Don’t give up”: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication, 17(3), 179-195. http://dx.doi.org/10.1080/aac.17.3.179.195

McNaughton, D., & Light, J. (2013). The iPad and mobile technology revolution: Benefits and challenges for individuals who require augmentative and alternative communication. Augmentative and Alternative Communication, 29(2), 107-116. http://dx.doi.org/10.3109/07434618.2013.784930

Prigent, H., Garguilo, M., Pascal, S., Pouplin, S., Bouteille, J., Lejaille, M., Orlikowski, D., & Lofaso, R. (2010). Speech effects of a speaking valve versus external PEEP in tracheostomized ventilator-dependent neuromuscular patients. Intensive Care Medicine, 36, 1681-1687.

Radunovic, A., Annanne, D., & Rafiq, M. (2013). Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease (Review). The Cochrane Collaboration. John Wiley & Sons, Ltd.

Wendt, O. (2003). Outcomes of low and high technology AAC intervention strategies for AAC patients [PDF document]. Paper presented at the annual conference of the Center On Disabilities Technology and Persons With Disabilities, Northridge, CA. Retrieved from http://www.edst.purdue.edu/aac/ALS%20and%20AAC%20CSUN%202003%20handout.pdf

Wilkinson, K. M., & Mitchell, T. (2014). Eye tracking research to answer questions about augmentative and alternative communication and intervention. Augmentative and Alternative Communication, 30(2), 106-119. http://dx.doi.org/10.3109/07434618.2014.904435

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