ALS Brochure

COMMUNICATION

SOLUTIONS

FOR PEOPLE WITH

ALS

DynaVox is the leading provider of communication solutions that allow persons with ALS (pALS) to express their thoughts, feelings and ideas. Our technology adapts to a person’s changing access needs and provides control over their environment. We know how important it is to be able to communicate effectively with family, caregivers and those providing health care. Further, our products help people to connect to the outside world through email and social networks.

solutions Copyright Š 2013 DynaVox Systems LLC. All rights reserved.

We can help At DynaVox Mayer-Johnson, we help persons with ALS (pALS) communicate and connect to the world through innovative technology, and support them with the solutions and services that enhance their quality of life.

We support pals by providing tools that address several key areas of need:

Efficient and Precise

Connections

Communication

with others

Customizable Communication and Access Methods

DynaVox is the leading provider of communication solutions that allow pALS to express their thoughts, feelings and ideas. Our technology adapts to a person’s changing access needs and provides control over their environment. We know how important it is to be able to communicate effectively, and in a variety of ways, with family, caregivers and those providing health care.

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ALS and communication

ALS

Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s Disease, is a progressive, neuromuscular disease that attacks nerve cells and pathways to the brain and spinal cord. The progressive degeneration of the motor neurons may affect speech. Speech may become slow or slurred, and, for some, speaking may become impossible. The ability to communicate becomes even more important as the individual requires additional support from others. Fortunately, many proven communication solutions such as augmentative and alternative communication (AAC) devices, also known as speech-generating devices, help those with ALS maintain independence.

What is communication?

What is self expression?

Communication is the process by which one person gives information to or receives information from another person.

It is through communication that we express our thoughts and ideas, learn new things and build relationships.

Communication can be spoken, but it can also take on other forms such as sign language, writing or using a common set of symbols1. Communication can also be in the form of facial expressions, behavior, body language or through the use of a communication device.

Communication is also about expressing who you are as a person. It’s about expressing your individuality and having the ability to show people your unique personality, beliefs, feelings and ideas. Expression is a creative act that gives each of us a voice and defines our unique self to those around us.

communication is

communication is

sign language

writing

True expression requires the right tools at the right time in order to be successful.

For pALS, self-expression can be challenging as the disease progresses. Symptoms can range from very mild to severe. Additionally, communication difficulties can be compounded as physical abilities decline and the ability to write or sign is lost. Throughout the progression of ALS, individuals may experience: •

•

Declining ability to produce speech naturally.

Isolation as abilities decline making it harder to connect with others, and limiting one’s ability to go places.

“Self expression must pass into communication for its fulfillment.”

Pearl S. Buck

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communication is

communication is a

communication is

device

talking

1

Beukelman and Mirenda, 2005

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What is augmentative and alternative communication?

Augmentative and alternative communication (AAC) can include any strategy used to express thoughts, needs, wants and ideas.

Examples of common AAC strategies might include: •

Gestures

Communicate in noisy environments.

•

Picture communication books

Talk in large groups.

•

AAC or communication devices

Share stories.

Many AAC strategies use picture symbols, letters, words and phrases to represent the messages needed to talk about objects, people and places.

Individuals with communication challenges can use AAC to supplement their existing speech or replace speech that is not functional.

AAC for real-life interaction AAC can be used in any environment where communication is difficult. AAC helps individuals communicate, and provides visual information about the situation that can increase understanding for the individual and/or the communication partner. For example, showing someone a communication page with words and/or pictures of a location provides the vocabulary needed for that environment or situation. While individuals have multiple ways to communicate their needs and wants, having access to an AAC device will allow them to have the right tool for the right situation.

AAC has the power to give both the communicator and communication partner understanding about what is trying to be communicated.

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AAC allows individuals with ALS to:

Reduce end-of-day fatigue.

Talk with new people.

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ALS

How can AAC support individuals with ALS? Anyone who is having problems being understood by others can benefit from the use of an AAC device. Adults who either do not have the ability to communicate or find that in certain situations communicating is challenging can benefit. Not having or losing communication skills can impact an individual’s quality of life and affect their ability to independently convey thoughts.

AAC devices are often considered when individuals experience a change in their speech skills that significantly alter their ability to communicate.

Individuals with ALS Want to engage with the world around them

AAC Devices Can...

Offer access to the phone, TV, and email pages to allow individuals to be connected.

Individuals with ALS Want to share information quickly

With AAC devices, individuals can: •

Actively engage with others in communication.

•

Communicate more effectively than their existing skills allow.

•

Increase opportunities to communicate.

•

Maintain current communication skills.

It is never too early or to late to start using AAC devices, as they can give a voice to adults with ALS and provide them with the tools they need to communicate with the world around them.

“To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others”

AAC Devices Can...

Manage a large amount of specific vocabulary to support communication at home, work and in the community.

Individuals with ALS Want to use what is familiar

Anthony Robbins

AAC Devices Can...

Give individuals the power to say whatever they want by providing choices of keyboards and frequently used words.

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solutions What communication solutions are available to help improve communication for paLs? AAC devices such as the Vmax+, Maestro, EyeMax, DynaWrite 2.0 and Xpress, as well as the Navigator and AlphaCore page sets, are designed to meet the broad range of needs for individuals living with ALS. DynaVox delivers the tools that pALS need to communicate effectively and efficiently in virtually every situation, and have the ability to adapt as skills and abilities change.

A little bit about our devices At DynaVox, we offer a wide-range of AAC devices, many of which can be valuable tools for pALS. The Vmax+, Maestro, EyeMax accessory, and DynaWrite 2.0. are the DynaVox AAC devices that are often selected by pALS. But everyone is an individual with differing needs and not every product is appropriate for every person. Here you can learn more about the variety of AAC devices that might be helpful to you, but you will want to work with your speech-language pathologist to select the DynaVox AAC device that will best meet your needs.

Maestro: •

•

•

•

•

Sleek and stylish, the Maestro weighs just 2.75 pounds (slim battery).

The integrated camera allows you to capture memories as they happen, and instantly add them to new and existing communication pages.

Available with two battery configurations to meet your needs.

Standard battery lasts for 9.5 hours.

Supports a wide-range of selection methods, including touch, joystick, Morse code eye tracking (when used with the EyeMax) and mouse pause.

Integrated infrared capabilities allow users to control common household appliances such as televisions and DVD players, as well as thermostats and lamps equipped with infrared remote controls or X-10 controllers.

Vmax+: •

•

•

Vmax+ delivers 6 hours of continuous use, and battery efficiency that matches the EyeMax. Supports a wide-range of selection methods, including touch, scanning, joystick, Morse code and eye tracking (when used with the EyeMax).

Integrated infrared capabilities allow users to control common household appliances such as televisions and DVD players, as well as thermostats and lamps equipped with infrared remote controls or X-10 controllers.

augie USES the eyemax TO stay connected with the world, raise funds for ALS research and live a full life!

Augie Nieto, vice president and co-chairperson of the Muscular Dystrophy Association’s (MDA) ALS division, and the driving force behind Augie’s Quest, recognizes the importance of maintaining his independence as ALS progresses. “People diagnosed with ALS right now lose the will to live…because they cannot communicate. The EyeMax gives me the ability to connect and communicate with others again. This is extremely powerful and has given me the will to live,” said Augie. “It is important for individuals with ALS to stay ahead of the curve and begin exploring available communication options before the need to use them arises.”

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Xpress: •

•

EyeMax: •

•

•

Allows Vmax+ and Maestro users to access the device and make selections by blinking or dwelling on the desired area of the screen.

Supports rapid communication while minimizing the fatigue that is sometimes associated with other eye tracking systems.

The EyeMax accessory may be purchased along with the Maestro or Vmax+ or added to either device at a later time.

This small, ultra-portable device features a 5” diagonal screen that can be easily navigated by “swiping” the screen with your fingers or thumbs.

Natural-sounding voices provide inflection and emphasis, and allow you to laugh, cry, shout and whisper.

•

Available with two battery configurations to meet your needs:

•

Two 3.5-hour swappable batteries

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One eight-hour extended battery

•

•

Stay connected using the onboard Wi-Fi and Bluetooth capabilities.

Integrated infrared capabilities allow users to control common household appliances, such as televisions and DVD players, as well as thermostats and lamps equipped with infrared remote controls or X-10 controllers.

DynaWrite 2.0: •

•

•

•

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Features a familiar, full-size QWERTY keyboard.

Time-saving tools reduce the number of keystrokes required to compose messages ensuring that conversations flow smoothly.

DynaVox’s Voice Retention Technology (VRT™) makes it easy for pALS who have not already lost their voices to share even the smallest nuances of their personalities by recording up to an hour of favorite phrases, stories, greetings, etc. with their natural voices for later use on the DynaWrite 2.0.

Onscreen scanning streamlines the scanning process by focusing the pALS’s attention on the screen.

Integrated infrared capabilities allow users to control common household appliances such as televisions and DVD players, as well as thermostats and lamps equipped with infrared remote controls or X-10 controllers.

Helen uses the eyemax system to enrich her relationship with her grandchildren.

Helen was 72 when she was diagnosed with ALS. When she first lost her voice to the condition, she would write her thoughts down on a note pad. This worked well for a while – and with adults. But this method of communication wasn’t working with her young grandchildren who were unable to read. With the EyeMax System Helen is able to read to her grandchildren, joke with them and make memories that will last forever.

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solutions As part of our commitment to ensuring that pALS have everything they need to successfully communicate in all environments, we offer a variety of communication software and accessories that support device use.

Communication software

Power and mounting accessories

The hardware that drives AAC devices is very important. But the software that drives the communication is just as important.

That’s why we offer a variety of communication software designed specifically to support the needs of individuals with ALS.

Wheelchair Power Adapter Converter (WPAC): •

•

Navigator: •

•

•

•

•

•

A component of the powerful InterAACt language framework, the Navigator page set was designed specifically for individuals with conditions such as ALS.

•

Pages are structured and buttons sized for easy selection.

Supports complete communication and full integration with features such as e-mail, eBook reader and infrared (IR) controls, including IR phone capabilities.

Functions with a wide-variety of access methods.

ConnectIT Mounting Systems:

•

AlphaCore:

•

•

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For use exclusively with DynaVox communication devices.

Allows pALS to navigate the system and begin communicating within moments of turning on the device.

•

•

Leverages the power of the wheelchair to extend the battery run time of the DynaVox device while ensuring ample power to run the wheelchair.

An alphabet-based word strategy that provides quick access to speech, email, ebooks, and environmental controls.

•

•

Delivers on-the-go flexibility and freedom.

An optional, specialized word-based software for individuals with ALS. Combines alphabetized core words and conversational phrases to support communication.

Enables pALS to share messages promptly and with little navigation.

Supports the easy transition through various access methods as the individual’s access needs change.

Made of aircraft-grade, high-strength aluminum that delivers a strong, light weight mount with less vibration.

Provides a wide range of positions.

Available ConnectIT Mounting Systems include Wheelchair, Rolling Floor Stand, and Desk mounts.

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ALS

Language is the foundation of communication and expression.

In order to be truly useful and meaningful, a language system must have a framework and structure. It must be more than a random collection of words and phrases. It must be appropriate for the communicator, meaningful to the recipient and relevant to the environment within which the communication is occurring. It is because of this principle that DynaVox has combined current research with powerful technology to create the InterAACt language framework.

InterAACt can be used by people with ALS to express thoughts, feelings and ideas in real-life situations. Language is presented in a natural and familiar format, providing pALS with the tools they need for efficient and precise communication. These tools are so flexible that they enable customizable communication and access methods to ensure that when communication and/or access needs change, the communication system easily adapts to continue to support independent and efficient participation.

Making a Telephone Call

InterAACt is based on a simple premise - that successful communication is primarily driven by three key factors: •

Age

•

Environment

•

Ability

Age relevance Due to the fact that most individuals who have been diagnosed with ALS are adults, the vocabulary found within InterAACt is specific to adult issues and needs. It takes into account different roles (e.g., employee) and responsibilities (e.g., parenting), and ensures that the individual has the right tools to effectively manage their life.

Communication environment Communication environments are the everyday situations where interaction with others can occur. An environment could be a place, like the library. An environment could be an event, like a birthday party. An environment could even be a standing obligation, like the workplace. The environment will have an impact on the type of communication messages that we use to participate in those settings. With InterAACt, individuals will have the right vocabulary to support interaction in many everyday environments.

Communication ability People with ALS have the desire to talk about a broad range of topics in flexible ways. InterAACt strives to provide the appropriate communication tools by allowing individuals to combine spelling, single words, phrases and complete sentences to create novel messages.

Talking with a Co-Worker Household Management

Ethan is 72 years old and the proud grandfather of 5 grandchildren. He loves spending time with them telling stories and discussing the events of the day.

To stay connected with his grandson who is away at college, Ethan stays in touch via email and text messaging using his EyeMax System.

Daily Activities

To learn more about InterAACt or to download the InterAACt framework guide and review a complete list of characteristics, go to www.dynavoxtech.com/interaact.

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The Power of InterAACt The power of InterAACt lies in the common elements that support communication in real-life situations. These common elements work together to create a robust and complete communication system. InterAACt reflects real people, real words and real life.

The five common elements of InterAACt include:

Efficient Say it quickly. InterAACt takes advantage of reusable words, phrases and sentences to provide access to communication messages useful in many everyday environments and activities (e.g., greetings). This encourages fast and efficient conversations so that individuals with ALS can communicate right away in any situation.

Topic Pages (e.g., kitchen) and the related Topic Messages (e.g., “Are the dishes in the dishwasher clean or dirty?”, “It’s in the cabinet.”) include predictable comments, questions, directions and requests related to one activity or situation. The purpose of Topic Pages and Topic Messages is to help individuals say messages in a timely manner.

Precise

Quickfires are useful in all communication environments and situations. The purpose of Quickfires is to provide a way to quickly initiate (e.g., “excuse me.”) and maintain interactions, get more information, direct attention, comment (e.g., “that’s awful.”) and request.

Say it in your own words. There are times when an individual may want to create very specific messages by typing it letter-by-letter or word-by-word. Composing a speech or writing an email may require precision elements such as keyboards and word banks containing frequently used words.

Precision elements also provide rate-enhancement features (e.g., word prediction) to speed up the message creation process.

My Phrases are conversational statements and questions that can be used in a variety of situations. My Phrases provide a way to comment about what we think, initiate and close conversations, argue and indicate wants and needs.

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The Power of InterAACt Organized InterAACt uses consistent organizational strategies that make learning effortless. Communication messages are organized in a logical and intuitive manner, making it easy to find the right words for the right situation. For example, using organization tabs on a communication page will allow pALS to quickly choose a topic and access relevant comments and questions.

ALS

Physical access customization. Adaptations can be made to DynaVox AAC devices to allow individuals to use their residual skills to continue to achieve maximum use the device. The InterAACt framework allows for such adaptations, making communication as efficient as possible.

EyeMax

Headmouse

Can be customized Due to the high degree of flexibility, InterAACt ensures that communication needs are met both now and later as the condition progresses. People with ALS may find that they need to adapt their AAC device so that it better meets their needs as their physical abilities change.

Communication customization. While it allows messages to be created letter-by-letter or word-by-word, InterAACt offers less physically taxing message creation tools to be used when the individual feels fatigued.

Direct Selection

Switch

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InterAACt Provides Connections to the World As physical abilities decline, many pALS may feel frustrated, not only by the inability to communicate, but also the loss of ability to do simple tasks that they used to do with ease. DynaVox communication solutions combine powerful hardware and software that work together to enable pALS to communicate with others by voice, phone and e-mail, and control their environment and maintain greater independence.

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Email and Internet

Phone

DynaVox communication solutions are designed to allow you to stay in touch with family and friends, and handle business affairs via email from within your communication software - regardless of how you are using the device! The optional web browser puts a world of information within your reach.*

Built-in infrared capabilities enable pALS to effortlessly use infrared phones. Dial, talk and end the call all from within the InterAACt communication software using the access method that you prefer, and all the communication tools that you use for faceto-face conversations.

Control Your Environment Built-in remote control capabilities, and software specially designed to support the needs of pALS, give you the power to control many common household appliances such as TVs and DVD players that come with infrared remote controls. In fact, the remote control codes for some of the most common appliance brands are already incorporated into DynaVox communication solutions equipped with remote control capabilities! These same capabilities allow you to control thermostats, lamps and other household appliances not equipped with infrared receivers when optional X-10 controllers are installed. *System response will vary in response to user abilities, and software applications running outside of the DynaVox Series 5 software.

With email, phone and remote control capabilities, as well as optional web browsing*, DynaVox communication solutions provide pALS with powerful connections to the world. These integrated features allow for seamless control over communication and the environment removing some of the difficulty that many people living with ALS experience.

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Common Questions That persons with ALS and their families have about AAC

How will an AAC device help me?

How are AAC devices paid for?

AAC devices can help individuals to communicate more effectively, maintain independence and employment, as well as experience increased self-confidence and reduced frustration.

AAC devices can be paid for in a variety of ways, including Medicare, Medicaid or private health insurance providers. Military veterans may look to the Veterans’ Administration for funding.

Others turn to not-for-profit organizations that work to provide AAC devices for individuals who do not qualify for or do not have access to funding. DynaVox assigns a funding specialist to assist you throughout the funding process. To learn more visit www.dynavoxtech.com or call 1-866-DYNAVOX.

Will an AAC device replace the other ways in which I communicate?

No, an AAC device augments, or adds, to the individual’s natural communication methods to improve intelligibility or effectiveness.

When is the right time to get an AAC device?

It is important to begin exploring AAC device options early in the diagnosis. This will allow you to explore many options without feeling as if a decision must be made immediately!

How do I select the most appropriate communication device?

A speech-language pathologist (SLP) will perform an evaluation to determine if an AAC device is appropriate. As part of the evaluation, the SLP will compare a variety of AAC devices to determine those which will best meet your immediate and future communication and access needs. Your SLP may suggest that you trial several different devices before a final decision is made.

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How do I ensure success with an AAC device?

DynaVox has a team of dedicated professionals to help you every step of the way. Our commitment to an individual’s success with our devices goes far beyond hardware and software and includes support that begins with our dedicated sales consultants and includes expert technical support representatives, knowledgeable funding specialists, and no-cost device training and implementation assistance. Collaboration is the key to communication success.

Do I or does someone on my care team have to be a technology expert to be successful with an AAC device?

No, our devices are designed for easy setup and use. Additionally, DynaVox offers a wide-range of tools, resources and services to help ensure your success.

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Our Commitment Our commitment to persons with ALS and their families We are committed to helping pALS enjoy their relationships with family and friends while giving them the tools they need to continue to develop meaningful connections with others. DynaVox offers a comprehensive network of resources that will support you through the entire process of obtaining and using a DynaVox AAC device. At DynaVox, we offer: •

•

•

•

•

The AAC industry’s largest technical support team to answer your questions. Support is available by phone or online.

Visit Us Online Our website is designed to help guide you through your search for communication solutions.

Visit www.dynavoxtech.com and www.mayer-johnson.com to learn more about our products, resources and available services.

A team of funding specialists familiar with state and federal funding guidelines to help you navigate the funding process.

A local sales consultant who will provide hands-on demonstrations and ensure that your speech-language pathologist has the equipment necessary to complete a full AAC evaluation.

Many local and online training opportunities and implementation resources.

Communication software designed to support your current and ongoing communication and access needs.

Our commitment to SLPs, teachers and other professionals Our goal is to provide the tools you need to support individuals with ALS. We honor your commitment to helping each individual that you serve communicate to his or her fullest potential, and want to help you work effectively and efficiently toward that goal. DynaVox provides SLPs and other professionals with the following resources: •

•

Funding specialists to help streamline the funding process.

Local consultants to provide hands-on demonstrations and offer support during evaluations.

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Evaluation equipment to complete the AAC assessments.

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Local and online trainings.

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Implementation resources in the form of instructional videos, data collection forms and planning worksheets.

DynaVox can help you with the funding process by assigning a funding specialist who is knowledgeable about your state’s specific funding requirements.

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The ALS Association

The Muscular Dystrophy Association

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ALS

mdausa.org

alsa.org

ALS Therapy Development Institute

Augie’s Quest augiesquest.org

als.net

National Institute of Neurological Disorders and Stroke (National Institutes of Health)

Additional Resources:

AAC-Rehabilitation Engineering Research Center (AAC-RERC)

ninds.nih.gov/disorders/ amyotrophiclateralsclerosis/ detail_ALS.htm

Center for Disease Control / National ALS Registry

aac-rerc.psu.edu

cdc.gov/ALS Default.aspx

References: Beukelman, D & Mirenda. P. (2005). Augmentative and alternative communication: Support for children and adults with complex communication needs.

Baltimore MD: Paul Brookes Publishing Co. Cafiero, J. M. (2008). Your child with autism: when is augmentative and alternative communication (AAC) an appropriate option? Exceptional Parent, April 1, 2008. Accessed at www.highbeam.com on 11/19/2008.

Cafiero, J., Acheson, J., & Zins, J. (2007) Autism spectrum disorders and augmentative and alternative communication: from research to practice.

Perspectives on Augmentative and Alternative Communication: American Speech-Language-Hearing Association Division 12 Millar, D., Light, J., and Schlosser, R. (2006). The impact of Augmentative and Alternative Communication Intervention on the Speech Production of Individuals with Developmental Disabilities: A Research Review. Journal of Speech, Language, and Hearing Research, 49, 248-264.

Mirenda P. & Iacono T. (2009). Autism Spectrum Disorders and AAC. Baltimore MD: Paul Brookes Publishing Co.

connect with us All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form, by any means (electronic, photocopying, recording, or otherwise) without the prior written permission of DynaVox Systems LLC. Copyright protection claimed includes all forms and matters of copyrightable material and information allowed by statutory or judicial law or hereafter granted, including without limitation, material generated from the software programs which are displayed on the screen such as screen displays, menus, etc.

2100 Wharton Street • Suite 400 • Pittsburgh, PA 15203 1.866.396.2869 • dynavoxtech.com 150164 2/13 US,CA,UK

The cost of a device may be covered by Medicare, Medicaid or private insurance. Call 1-866-DYNAVOX for more information, or visit dynavoxtech.com to find your DynaVox Sales Consultant.