By Natsumi Asanuma, M.S., CCC-SLP
As we enter the fall, farmers markets fill with a variety of colors, textures, and flavors of the season’s harvest. Each crop required its own optimal combination of nutrients in the soil, sun, temperature, water, and protection from pests to thrive. Living well with ALS and caring for pALS also requires an individualized mix of care and attention, but can often feel like planting mystery seeds in unpredictable weather. Despite the uncertainties about the changes with ALS, there are some universal skills to nurture throughout any point of the ALS journey.
Foster a Growth Mindset: Good communication and fostering quality connections with others are skills. While acknowledging the devastation that accompanies the decline or loss of speech with ALS, you can always improve the skill of communication. PALS who develop their communication skills often find new ways of participating in meaningful activities, including time with family and friends, supporting other pALS, advocacy, spirituality, and making new connections, through creativity, technology, and advocating for their needs.
Be Proactive: This process of improving and adapting communication skills takes time and effort and is often easier to accomplish by learning about the available tools even when they are not needed today. Those who choose to digitally preserve their voices using voice and/or message banking will have the best results by starting sooner. Communication equipment can also take time to acquire and learn to use. Just like we buy insurance with the hope of not having to use it, it’s okay to maintain hope that speech will be preserved while still taking the steps to be prepared.
Tend the Seeds of Change: Facing potential or actual decline and loss of speech is severely challenging. Especially for those of us supporting pALS, keeping in mind that repeated opportunities to learn and be exposed to information with compassion is important in helping pALS take the necessary next steps. For pALS, identifying the best way you learn and seeking opportunities to revisit difficult or confusing information may make things a bit easier.
Understand Symbiosis: Though the burdens of communication challenges often fall on the pALS, communication is multi-directional. Communication partners and the world at large also have the responsibility of adopting the principles of good, attentive communication, slowing down, and being inclusive of the needs of those with communication disabilities.
What skills do you think are necessary to communicate well with ALS? Share your ideas with us in the comments or on our Facebook page. For patients of the Susan Mast ALS Foundation interested in assistance with speech and communication needs, contact SLP Natsumi at 616-622-3066 ext. 4 or email@example.com.
This month, Marsha M. shares her perspective as a pALS navigating the process of preserving her voice and preparing for augmentative communication needs proactively:
“I chose to do voice and message banking because my husband and I were noticing changes in my voice such as a “gravelly” voice and low volume as the day progresses. A main issue was fatigue and lack of energy to communicate at length with friends who come for a visit. I realize that I am approaching this common voice and speech concern of ALS a little early; however, the process to get eye gaze technology is fairly involved. I wanted to be forward looking and plan for the days to come. Hopefully this will give me greater PEACE and CONTROL…that technology can be my helper.
“I was concerned about the time it would take to record messages, bank them, meet with a Speech Language Pathologist (SLP) to complete the Augmentative and Alternative Communication (AAC) evaluation and then learn how to use the eye gaze technology. I wanted to get it done before my situation worsened and I wouldn’t have the energy to carry out the process one has to go through to get the right type of communication device.
“Something to keep in mind throughout this process is for someone (patient or caregiver) to be proactive and follow up at all stages keeping good documentation. Natsumi Asanuma is one great SLP that Susan Mast ALS has on their staff. Be sure to include her on your journey to find the best communication device for you.
“I would recommend others bank their voices and messages because it can give you HOPE to still be around, to be able to communicate with friends and family, to share your life stories and lessons with family and to leave your messages of LOVE for family members in your own voice.”
Do you have questions about voice and message banking or communication tools? Patients and families of the Susan Mast ALS Foundation can contact Natsumi Asanuma, SLP, at firstname.lastname@example.org or 616-622-3066 ext. 4 to receive assistance.
By Natsumi Asanuma, MS, CCC-SLP
Preserving and cherishing personal memories is often an important part of many pALS journeys. The use of audio and video recordings can be a good way to capture these stories and your voice. Message banking and voice banking are commonly used by pALS who have experienced minimal speech changes to preserve their voices digitally, in case a speech device is needed in the future. However, recordings in recordable books, albums, and digital interviews are additional methods that provide opportunities for creating that personal record.
Message Banking is a method of recording phrases of your choosing into a digital recorder to save in case a speech device is needed for communication in the future. First started in the ALS augmentative communication program at Boston Children’s Hospital, they coined the term “Legacy Phrases” to mean those phrases that are unique to you: the way you voice affection, humor, favorite jokes, signature sayings. Though message banking’s primary goal is to save phrases for a speech device, pALS often use this process as a way to save special messages for loved ones as well.
Recordable Books & Albums
Another way to preserve and share voice recordings is with recordable books and photo albums. For pALS with important children in their lives, recordable storybooks (can be found online or at stores like Hallmark) can be an easy way to save stories read in your voice. A talking photo album is another way to record memories associated with personal photos or to make your own custom recordable storybook with a little creativity. This album by Talking Products has additional features including locking recordings, a headphone jack, and a USB plug to transfer audio files for a back-up. Remember that these products and recordings are not compatible with speech devices and would be enjoyed as is.
Digital interview apps provide question and discussion prompts combined with an audio and/or video recorder to preserve your stories. RecordMeNow is a free app that allows you to choose your own prompts and creates videos of your responses that are saved directly on your phone’s photo album as videos that you can choose to keep private or send to loved ones. StoryCorps is a project aimed at preserving stories through interviews between two people. Though StoryCorps encourages sharing stories, the app is free and does not require publishing the interviews. With digital interviews, those who use speech devices or apps may use them to answer questions and communicate in the recordings, however, the recordings would not be used for message banking.
What are some ways you cherish your memories? Have you tried any of these recording strategies? For patients of the Susan Mast ALS Foundation interested in assistance with message and voice banking or other communication needs, contact SLP Natsumi at 616-622-3066 ext. 4 or email@example.com.
By Natsumi Asanuma, MS, CCC-SLP
Writing a best-selling memoir with eye blinks. Making award-winning contributions to theoretical physics. Leading ALS organizations. These are some of the accomplishments of public figures who used alternative and augmentative communication (AAC), with many more works are listed here. Meaningful communication independence can also be in the form of using an eye gaze speech device to participate in a support group, speaking with an iPad to your doctor at a clinic appointment, or “liking” a photo of your granddaughter on Facebook; all examples of successes from within the Susan Mast community.
Steve Gleason, ALS philanthropist/advocate and former New Orleans Saints football player, once said about ALS, “Until there is a cure, technology is the cure.” Though not all pALS will need to use them, the following are some of the types of communication technologies that may be a part of a toolkit for communication independence.
High Tech Alternative and Augmentative Communication
AAC encompasses a wide range of tools and strategies ranging from no/low tech to cutting edge technology used for communication by those who have speech impairment or loss. An evaluation with a speech language pathologist (SLP) knowledgeable with AAC can help you find the tools and techniques that best match your current and anticipated needs for communication and motor/physical access of a device, and adjustments may be made to your toolkit if your needs change. With high tech AAC, pALS may pursue options that are often covered by insurance called speech generating devices (SGDs) or may use lower cost personal electronic devices such as smartphones and tablets.
Speech Generating Devices are electronic AAC devices that speak aloud messages that the user selects. The user may type messages on a physical or on-screen keyboard or select buttons with words, phrases, or pictures that are combined to make the message. The software program used to create the messages and the methods of selection are customized to the user’s communication and physical needs. For example, the late physicist Dr. Stephen Hawking used a switch activated by his thumb to type during this 1994 speech, but later used a switch activated by his cheek muscles as described in this segment. Many pALS, such as Steve Gleason, opt for devices that track eye movements to “click” on screens like a mouse. Insurance-funded SGDs can be particularly helpful for those who require specialized selection methods such as eye gaze tracking, which can be costly to purchase out-of-pocket.
Whatever the device or method, SGDs require an evaluation with an SLP, a doctor’s order, and insurance authorization, with Medicare covering 80% of the cost of a device and mount (with the rest often covered by Medicaid or private insurance). Insurance typically only covers one device every 5 years in the best-case scenario, so it is important to get the evaluation at the right time and have the opportunity to try different devices to make the right match for your current and anticipated needs. Your clinic SLP can answer questions about your individual case and when it may be right to start the evaluation process.
Personal electronic devices such as smartphones, tablets, and laptops have options for text-to-speech and communication apps as well as built-in accessibility features that may make communication easier or possible at all for those experiencing changes in dexterity or limb mobility. Depending on the features needed, some pALS use personal devices exclusively, while others start with personal devices and transition to SGDs.
Communication Apps: For many pALS, a communication app needs to have the functions to have typed messages spoken aloud, save and categorize frequently used phrases, ability to choose or load a custom synthetic voice, and have the button/keyboard sizes match their vision and motor skills. Communication apps are available at different price points, features, and for different devices. Your SLP may have recommendations or may be able to demonstrate apps for you, and patients of the Susan Mast ALS Foundation may speak with our SLP as well. Using search terms such as “text to speech” and “AAC” (which stands for alternative and augmentative communication) in your device app store may be a good starting place for exploring options.
Accessibility Features: These features may offer ways navigate your phone differently, such as by voice control (for those with clear speech), camera head tracking, and switch control or button modifications (for those with fine motor difficulties). Your SLP may help you to set up these features in conjunction with a communication app, if this is the best method for you. Features vary by type of device, and an occupational therapist or assistive technology specialist may be good resources for learning how to make adaptations that best suit your needs.
Accessories for Personal Devices: Adding more powerful speakers, adaptive mouses or switches, or mounts to devices can also make these tools more accessible to your needs. Eye tracking sensors and software are also available now for Windows and iPad Pro even without an insurance-funded SGD (though cost can be a limiting factor). Even for those not pursuing an insurance-funded device, an evaluation with an SLP, occupational therapist, and/or assistive technology professional can be helpful in getting recommendations for the best set-up for your individual case.
Long Distance Communication
The broad view of communication includes anything from texting and video calls to e-mail and social media. Fortunately, many AAC devices also make some of these other forms of communication accessible as well. Medicare rules require that SGDs paid for by insurance provide only speech-related functions, so users should reach out to their device companies to find out the fee (usually under $30) and procedure for “unlocking” their device to be able to use the normal internet and computer functions typically built into their devices. There are often accessibility adaptations for some of the most popular apps and functions, such as e-mail, social media, internet, video streaming, e-books, and games that are available after paying the unlock fee for SGDs, and the accessibility features on personal devices may also help make non-communication apps easier to use as well.
The wide range of available technologies and options for AAC means greater opportunities for staying connected with others in the way that suits your individual needs and goals. Don’t be afraid to find assistance from an SLP, occupational or physical therapist, and/or assistive technology professional to match you with the tools that are best for you. For patients of the Susan Mast ALS Foundation, contact SLP Natsumi at 616-622-3066 ext. 4 or firstname.lastname@example.org for assistance or more information.
Accessibility Features by Operating System: Speech Generating Device Vendors (alphabetical):
by Natsumi Asanuma, MS, CCC-SLP
Planning ahead for communication can help increase safety and control for pALS with speech impairment. Do you have your safety and emergency plans ready? Do you need to compile your safety toolkit?
Ensure that you have reliable ways to get the attention of family/caregivers that are in your home and family/caregivers or medical/emergency responders outside of the home. Your current communication methods, motor skills, and lifestyle/routines may dictate which style of call bell and medical alert system you choose to use, and you may need to adapt or change what you use as time goes on. For in-home alerting, various models of call bell systems are available commercially and may include repurposing wireless doorbells, purchasing off-the-shelf call bells, or customizing adaptive call bells to use with accessible switches for your motor skills. Medical alert systems are paid services that usually provide a device to activate a call to a dispatcher who can call emergency responders or designated caregivers/contacts.
Communicating with first responders or helpers
How will you communicate your needs to unfamiliar helpers in an emergency? Prepare a Communication Passport, which includes your basic information, communication needs/preferences, and printed communication boards, or print and fill out the Medical Information Tools from the ALS Association. Become familiar with and print an emergency communication board (such as this one from the Temple University Institute on Disabilities). If you have a speech generating device or app, program key emergency-related phrases ahead of time. Medical identification bracelets and cards (and through state ID cards through the Michigan Secretary of State starting in July 2021) may also reduce others’ unfortunate confusion of speech impairment with intoxication.
A general “Go-Bag” is an easily accessible supply of emergency goods, tools, and documents. It is essential to include communication-related items for those with speech or communication impairments. Some version of your Communication “Go-Bag” may be good to keep on hand in your vehicle and to take if a hospital trip is necessary. Items to include:
Safety and emergency plans will depend on your personal and family situation, location, and needs. However, building a support network familiar with your needs and making sure you have the right back-up equipment are essential parts of a safety plan. Check with local police/fire/emergency management offices to see if they can keep your information on file in case they are responding to an emergency at your residence. Many pALS rely on electric medical and communication equipment, and maintaining a power source during outages is often a high priority.
Additional safety considerations are usually needed for pALS with FTD. Having predictable routines, the appropriate level of supervision, chair or bed alarms, and setting up the environment/home appropriately to remove distractions and hazards, are all ways to increase safety. Ask your clinic and team about specific considerations in your individual case.
For more information on improving communication while living with ALS, talk with your speech language pathologist and clinic. Patients of the Susan Mast ALS Foundation can find out more about communication tools in our loan closet and support from our speech language pathologist, Natsumi, at email@example.com or 616-622-3066 ext. 4.
Additional Online Resources:
By Natsumi Asanuma, M.S., CCC-SLP
Voice banking is one process to digitally preserve your voice in case of speech or voice impairment requiring the use of a speech generating device in the future. There is a possibility of decline or loss of speech with an ALS diagnosis, and many people with ALS (pALS) choose to bank their voices before experiencing any speech changes to preserve this part of their identity. Voice banking is offered by several different organizations and companies, and while the overall process is similar, features and prices vary. Recent updates to voice banking technologies may make it easier or faster to create a custom synthesized voice for those without speech symptoms or make it possible for digital voice creation for those already experiencing speech/voice impairments.
Fewer phrases to record: Voice banking services typically have a minimum number of phrases you will have to record in order to create a custom synthesized voice. As technology has improved, some companies have reduced the number of phrases required to as few as 30-50 phrases (e.g. The Voice Keeper & Acapela My Own Voice). These options may be good for those who need to prioritize time and vocal effort/energy. Most services have options to record a greater number of phrases to enhance the likeness and quality of the voice as more voice data is input into the creation of your custom voice.
Familiar Recording Equipment & Software: Most voice banking services now offer web recorders, which make it possible to make your recordings from your computer’s Internet browser, instead of having to download software. While most services require or recommend using a USB headset microphone to record, The Voice Keeper has an option for recording on an iPhone or iPad through their app. The Susan Mast ALS Foundation offers our patients loaner recording equipment and the assistance of a speech language pathologist (SLP) free of charge as well.
Custom Phrases and Personal Message Banking: Even a custom synthesized voice is still an artificial voice, which means that some words and names may not be pronounced correctly or sound “computer-like.” To help overcome this barrier, some services now offer the option of recording custom phrases that you come up with yourself, to improve the accuracy of personally relevant words (e.g. ModelTalker & Acapela My Own Voice). Message banking is another process of preserving custom phrases in just the way you usually speak them. If you already completed message banking, some services offer a custom synthesized voice creation based off of high-quality message banking recordings (e.g. Acapela My Own Voice, The Voice Keeper, & Speak Unique Voice Design). The Jay S. Fishman ALS Augmentative Communication Program has a great explanation on this process they call “double-dipping” here.
Custom Voice Options for Those with Speech/Voice Changes: If you are unable to complete the traditional voice banking process due to speech/voice impairment that is already present, it is always a possibility to ask a family member or friend with a similar voice to yours to bank their voice for you to use. However, some services may be able to match you to a voice similar to yours from a donor (e.g. VocalID BeSpoke Voice) or voice bank with impaired speech (e.g. SpeakUnique Voice Repair) or design a voice based on chosen characteristics (e.g. SpeakUnique Voice Design).
When selecting a voice banking service, you will want to think about your individual priorities, goals, and current voice/speech quality. Consult with your SLP to decide what would be best for you. You can also review a recently updated chart of voice banking services and features here. The Susan Mast ALS Foundation offers our patients education and loan equipment on voice and message banking with an SLP. Contact Natsumi at 616-622-3066 extension 4 or firstname.lastname@example.org.
By Natsumi Asanuma, M.S., CCC-SLP
Think of the many tools we all use for communication. I’m typing this on a computer keyboard, texted my friends, called a patient on the phone, and took notes on a pad of paper with a pen. These days, there are countless tools available to support communication, and we are all more proficient with some more so than others.
We speech language pathologists (SLPs) often talk with people with ALS (pALS) about a broad range of tools called Alternative and Augmentative Communication (AAC). Many (though not all) pALS will experience changes in their natural speech or voice, and AAC encompasses tools and strategies to make communication as effective as possible for these pALS. Though some utilize speech generating devices or other tools to take the place of vocal communication when speech is not an effective option (the “alternative” in alternative and augmentative communication), there are many options in between to boost (or “augment”) your natural speech. AAC is not an all or nothing approach.
For those starting to notice changes in their voice, speech, or endurance with talking, first identifying your challenges and personal preferences or goals can help with identifying an augmentative communication plan.
Identifying the Challenge
Tools in the Augmentative Communication Toolkit
Guidance from a speech language pathologist that knows your situation well can be helpful for identifying the right tools for you, but here are some examples of augmentative communication methods. You may have even identified some of these tools on your own! Remember that these are new skills for you and likely your communication partner, and trial and error with practice can go a long way.
Though there is a chance of speech abilities changing with ALS, there is always hope of learning new communication skills. The Susan Mast ALS Foundation offers education on these strategies and more, as well as a communication loan closet that includes these quick access tools, through our Jim’s Voice Program. If you are registered with our Foundation and are interested in working with a speech language pathologist to learn more, please contact Natsumi at 616-622-3066 extension 4 or email@example.com.
What I love most about working for the Susan Mast ALS Foundation is the privilege of witnessing the various expressions of love within the ALS community.
The love from those living with ALS. The person with ALS (pALS) who shares her experiences with voice and message banking to encourage peers in support group to take action. The pALS who learns how to use an eye gaze speech device to say “I love you” to his family. The pALS who learns about her communication options proactively take care of her future self. The pALS who records readings of children’s books for his grandchildren.
The love of family and friends of pALS. The family members who reach out to learn about ways they can improve their own communication skills to ease the burden of communicating with speech impairment for their loved one with ALS. The spouses who overcome their unfamiliarity with technology to learn how to program a speech generating device with custom messages for their partners with ALS. The best friends who take charge of the voice recording and uploading of message banking phrases.
The love of the community coming together for our pALS. The ALS clinic speech language pathologists (SLPs) who reach out to us after witnessing a patient’s need for a speech generating device. The SLPs who connect with us to learn new skills to better support their patients residing in their facilities. The local and national ALS support organizations who share best practices and resources. The outpouring of participation and support from community businesses, organizations, and individuals during fundraising efforts to support what we do.
Finally, I love working with a team whose members each love what they do and commit themselves to do better for our patients, families, and community.
By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation
Many people with ALS (pALS) report variability in how clear their speech sounds, depending on factors such as energy level, time of day, and speaking situation. For those experiencing speech difficulties, thinking strategically about speech by working with your communication partner, setting up the optimal environment for communication, and conserving energy, can prevent communication breakdowns and reduce fatigue. These are often new habits that can be built over time and with a little extra attention.
Coach Your Communication Partner
Often, communication partners feel unsure of how to help prevent and resolve communication breakdowns. Have conversations that help them to understand your speech and communication needs, direct them to resources that explain communication needs related to ALS, or involve them when working with a speech language pathologist. The Boston Children’s Hospital ALS Augmentative Communication Program has a great resource for communication partners here. The following are some strategies for communication partners that may spark a discussion on your personal communication preferences:
It takes extra effort and repetition to compete with a noisy or distracting environment. Be mindful of the environment and move important or longer conversations to an optimal location whenever possible. Using a personal voice amplifier may be particularly helpful in some challenging environments and consistent use of an amplifier regardless of environment may still help to reduce fatigue throughout the day.
Check in with yourself periodically, particularly when you notice more communication breakdowns to see if you can optimize your speech or if you need to take a break. Consider using augmentative communication aids in conjunction with speech, such as a personal voice amplifier or letter board.
Mindful approaches to communication such as enlisting your communication partners’ help, setting up the environment, and modifying your speech can help improve comprehension when experiencing speech impairment related to ALS. In addition to trying these strategies, it is important to talk to your speech language pathologist, doctor, and clinic team about any speech changes or concerns to ensure that you get the appropriate individualized support and evaluations completed at the right time.
By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation
Much like how a passport identifies key information about travelers across borders, a communication passport can be a great tool for sharing information about your unique communication needs to others. Learn what a communication passport is, what to include, and free templates for making your own.
What is a communication passport?
A communication passport is a quick way for someone with a complex communication needs to share their needs and preferences for how to best communicate. Many people with ALS (pALS) experience communication challenges, ranging from fatigue and weak voice/speech when tired to utilizing a communication device or system to replace speech. A communication passport takes the burden off of the pALS to explain their best communication methods to new communication partners and can hold commonly needed information that is often repeated. The communication passport can be an actual notebook or pamphlet, a digital note, a business card, or signs posted on your communication device, living area, or wheelchair, and should be easily accessible to share with others.
What to include in a communication passport
Your communication passport should reflect who you are and what your needs are at this time, and should be updated as needed. It can be written in a straightforward style or can incorporate humor. The following are some examples of things you may choose to include:
Communication passports are used by people with complex communication needs arising from any diagnosis or age range. The following are some examples online of communication passports, but note that they are not all specific to ALS:
A communication passport should be a “living document” that is edited to adapt to your current needs to ease the burden of repeating commonly shared information about how to best communicate with you. It is flexible in size and scope, so you may choose to start with jotting down a few key points to share with others and build the passport from there. Consider recruiting a family member or friend to work on this together, and talk to your speech language pathologist for further information about communication supports such as these. Find out more about communication support for West Michigan ALS families through the Jim’s Voice Program.
Susan Mast ALS Foundation