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 email@example.com or 616-622-3066 ext. 4 to receive assistance.
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 firstname.lastname@example.org 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 email@example.com.
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 firstname.lastname@example.org.
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.
Susan Mast ALS Foundation