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ALS & COMMUNICATIONA Les Turner ALS Foundation Guide for People Living with ALS

ContentsHow ALS affects communicationHow ALS affects speechImproving speechSpecialists to help with communicationOptions for recording your voiceAlternative and augmentative communicationUsing speech generating devicesInsurance coverage and evaluationsAdaptive devices for computer useTelephone and in-home communicationLearn moreDisclaimer Statement: The information in this guide is not medical advice. Talk to your ALS care teambefore making any decisions about your health or treatment. Together, you and your care team can find atreatment plan that works for you.Last Reviewed: October 15, 2021 Les Turner ALS Foundation 2021lesturnerals.org33455799101112

How ALS affectscommunicationAmyotrophic Lateral Sclerosis (ALS) can weakenthe muscles you use when speaking andbreathing.This can lead to speech changes ranging from mildto severe. ALS can also cause a loss of strength inthe fingers, hands, and arms, which may impact yourability to communicate by writing or typing. With today’stechnology, you have options to communicate with thepeople who are most important to you.In this ALS & Communication guide, you will learn about!With today’s technology,you have options tocommunicate with thepeople who are mostimportant to you.Your ALS care team cancustomize the best wayfor you to meet yourcommunication needs.the speech changes that can occur with ALS. You willalso learn tips for navigating through those changes.Your ALS care team can customize the best way for youto meet your communication needs.How ALS affects speechHoarse orstrained voicelesturnerals.org/resourcesNasal or muffledsounding speechSoft voice3Unclear orslurred speech

Improving speechar·tic·u·lateSpeak slowly.Pause betweenwords, phrases,or thoughts.Over-articulate speechby exaggeratingmouth movements(particularly the firstsound of the word).Project yourvoice. Think oflisteners as beingfarther away thanthey are.Point or use gesturesin addition tospeaking.Shhh!Rest your voice ifyou know you willneed to talk a lotlater in the day.!Consider using noninvasive ventilation (NIV)NIV is a special type of medicalequipment to support breathing.Non-invasive means that it doesnot break the skin or require anysurgery. You’ll wear a mask that’sattached to a device. NIV is thepreferred and most used form ofventilation in ALS care.You can use My ALS DecisionTMTool to learn if NIV is the rightchoice for you.TMalsdecisions.org/breathingGet the listener’sattention beforespeaking so theyknow you areready to talk.Speak in awell-lit and quietenvironment.lesturnerals.org/resourcesSpeak face-to-facefor added facialcues to improveunderstanding.Rephrase if youare notunderstood.Identify the topicof conversation orinterest.Perform breathstacking exercisebefore a plannedconversation.4Then, talk with your ALS careteam. Together, you and yourcare team can find a treatmentplan that works for you.Watch this video, bit.ly/ambu-bag for instructionsor ask your pul monologistduring a clinic visit aboutbreath stacking.For more information onALS & Breathing visit,lesturnerals.org/breathing

Specialists to help withcommunicationSpeech-Language Pathologists (SLPs) and Occupational Therapists (OTs) worktogether to help you keep up with your changing communication needs.SLPs can help in the following ways, even if you have not noticed changes inyour voice:Start the voice/message bankingprocess to record your voiceProvide strategies to enhancespeech clarity and introduceexercises if appropriateProvide education, training, andfinancial resourcesRecommend adaptations, toolsand devices.OTs work with SLPs to determine what devices and techniques are going tomake communicating easier for you. This is important if you are experiencingdecreased hand function and as well as diminished ability to speak.Options for recording your voiceRecording your voice is highly recommendedonce you are diagnosed with ALS. Youcan use your recorded voice with differentdevices in the future to communicate withothers.The effort and cost to record your voice varies. Thetechnology changes often, so please contact yourALS care team. They will help you stay up to date onyour options.If you would like an idea of words andphrases to record, the Jay S. FishmanALS Augmentative CommunicationProgram has a great urces5

Voice BankingMessage Banking The process of digitally recording your voice toRecording messages using your natural voice.create a custom synthetic voice. This new customThese messages sound more natural than voicevoice can be used with a speech-generating devicebanking by keeping the tone of your voice. For more(SGD). The process needs to begin when your voiceinformation visit, mymessagebanking.com.is relatively unchanged. The earlier in the diseaseprocess, the better. A family member can alsocomplete voice banking for you if you desire.Legacy Messages There are several differentsoftware systems that you canuse to bank your voice. There aretwo main ones:The process of recording phrases and sentences.These are usually phrases that you frequently useor are meaningful to you. Record catchphrases thatyou are known for. For more information visit, legacymessages.com.My Own Voice Acapela (aka Acapela) ismore expensive, but many people find iteasier to use. For more information visit,mov.acapela-group.com.Double Dipping ModelTalker can be harder to use but isless expensive. For more information visit,The process of recording your voice only once formodeltalker.org.both voice banking and message banking. Thistechnology was developed by the Jay S. FishmanALS Augmentative Communication Program atBoston Children’s Hospital. For more informationvisit, bostonchildrens.org/ALSAugComm.Voice banking is not covered by insurance. The nonprofit group, TeamGleason, will pay for Acapela or ModelTalker. This applies for anyone in theUnited States who has with ALS.For more information visit resources6

Alternative and augmentativecommunicationAlternative and augmentative communication (AAC) are tools and strategies thataid you in speaking. AAC can also replace your speech when you are no longer ableto speak on your own. AAC ranges from low-tech tools to high-tech computers andtablets.Types of AAC that are available include:Low Tech AACAdaptive writing toolsUsing a stamp or electronicsignature to “sign” your signaturein cards or documents T bar or flexible stylus Writing bird- writing helper EaZy universal cuffsA whiteboard and dry erasemarker or pen and paperLCD writing board (aka boogieboard)Picture, word or letter boards You can point to letters, words, or pictures to aid communication Partner-assisted scanning can be used to communicate if you cannotphysically select a word or phrase. A partner will point to different items on the communication boards for you.When the partner has pointed to the desired item on the board, use a standardsignal or sound. This is the “switch” to notify them that this is what you want tosay.Emergency communication devices Use noise-making items like a bell or buzzer to get the attention of others incase of an emergency. A slightly higher-tech version would be a CallToU wireless caregiver pagersystem for the home (calltou.com). A wearable medical alert device such as Life Alert can also be used in anemergency if no one is around to help you (lifeline.philips.com).Low tech options are less expensive options if you are able to write or point. Adaptive stylusesor universal cuffs are ways to adapt writing utensils if you have decreased grasp.lesturnerals.org/resources7

AmplificationMicrophoneIncrease the volume of your voice. One example is Chattervox (chattervox.net).Moderate tech (this is not a complete list)Text-to-Speech Text to Speech!: Free on iOS Text to Speech: Free onAndroid Tell Me- Text to Speech:Free on Android Text-to-Speech with additionalfeatures Speech Assistant AAC: availablethrough iOS with payment and freeon Android Proloquo4text: available throughiOS with payment. Can be usedwith Message Banking Talk for me: Free on iOS Verbally: Free on iOS Predictable: On iOS with payment.Can be used with MessageBanking Moderate tech apps are a great bridge between low tech and high-tech devices. The apps can bedownloaded on your existing smartphone or tablet through your app store at a wide range of pricepoints.High techA Speech generating device (SGD) is a device that is used for communication. These devices areusually computers or tablets. They allow you to browse the internet, email and send text messages.SGDs also change text into speech through specialized programs. The device will allow you to selectwhat you want to say through various tools. These tools include a computer mouse, head mouse,touch screen and eye gaze.Commonly recommended speechgenerating brandsSGDs can be changed to suityour communication needs.For more information, talkwith your SLP, care team, andinsurance provider. Tobii Dynavox: us.tobiidynavox.com PRC-Saltillo: prc-saltillo.com Talk to me org/resources8

Using speech generating devices?Direct SelectionIndirect SelectionSwitch ScanningThe computer highlights different items on thescreen by first highlighting groups of objects,letters, or words, and then narrowing themdown within the group.TouchTouch the item on the screen to select it.MouseClick with a mouse to select an item on thescreen.Head mouse pointerUse head motion to select an item on thescreen.As your abilitieschange, you canalso change yourselection method.Eye access selection or eye-trackingUse eye movement and eye-tracking softwareto select an item on the screen.Insurance coverage Medicare usually pays up to 80% of the cost of a SGD. Private insurance will usually cover most or all of the cost of a SGD. Coverage will depend on your type ofinsurance. Insurance will not cover the cost of an SGD if you live in a nursing home or if you are receiving hospice care.How can I get evaluated for assistive communication devices?Shirley Ryan AbilityLab’s Assistive Technology Program offers a variety of services. The servicesavailable will enhance your independence and quality of life. (sralab.org/services/assistive-technology)Asyst Communications Co. Inc. offers accessible technology to help you communicate and control yourenvironment. (asyst.us)The Marianjoy Assistive Rehabilitation Technology Institute will evaluate you to maximize yourindependence and communication options. (www.marianjoy.org/rehab-technology/marti)Talk with your ALS care team to get a referral to a technology center near you.lesturnerals.org/resources9

Adaptive devices for computer useTalk to your ALS careteam for adaptivecomputer equipmentrecommendations.Computer armsupports and accessibilityfeatures for keyboardmodificationKeyboard aid(pointer)Head- or eye-controlFuturo wrist braceVoice-activated programsSmart speakerTechnology centers oftenhave a large selectionof state-of-the-art,commercially availabledevices on hand to assistin assessing the bestequipment for you.electronic/computer deviceAdaptive computer mice Foot-operated computermouse Trackball mouse Vertical style mouse Roller mouse- allows you tokeep hands on keyboard atall times to decrease armmovement and fatiguelesturnerals.org/resourcescapable of streamingaudio content, relayinginformation, andcommunicating with otherdevices10such as Dragon Speak

Telephone and in-home communicationTelephones can be adapted in many ways.Receiver holderheadsetSpeed dialSpeakerphoneVoice activated phoneIn-home communicationInfant monitorWalkie-talkieVoice-activated house controls(Google Home, Alexa, etc.)paired with smart itemssuch as doorbells, light bulbs,outlets, and kitchen appliances.lesturnerals.org/resources11Portable doorbell

Learn moreThe Les Turner ALS Foundation exists to guide you to answers, support you andyour loved ones and advance scientific research. To learn more about living withALS visit, lesturnerals.org/resources.My ALS Decision ToolTMTMIf you have ALS, you will need to make some importantdecisions about your health care. As your disease progresses,your ALS care team may recommend different care options. Youcan use this tool to learn about some common ALS treatments,answer a few questions to help you think through what is mostimportant to you and get ready to talk with your ALS care teamabout your options. To learn more, visit: alsdecisions.org.ALS Learning SeriesOur online ALS Learning Series aims to empower the ALScommunity through the latest information and insights.Educational webinars and interactive Q&A’s covering a diversearray of topics, from nutrition to respiratory care, are offeredmonthly featuring members of the Foundation’s SupportServices team, our Lois Insolia ALS Clinic at NorthwesternMedicine and other national ALS experts. To learn more aboutALS care and research, visit: alslearningseries.org.My ALS Communication Passport to Quality CareMy ALS Communication Passport to Quality Care was createdto make your life easier. You will be able to share healthinformation and care preferences with caregivers. You have alot of information to keep track of, and this tool will help you dothat. To find out more, visit: lesturnerals.org/passport.Support GroupsWe facilitate support groups to provide people living with ALSand their caregivers and family the opportunity to share theirexperiences, give encouragement and help each other navigatetheir journey with ALS. To find out more, visit; esources12

Oct 15, 2021