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):
ALS is a relentlessly demanding disease. It requires ongoing adaptations from patients, caregivers, and family members.
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 Emily Brechting, Ph.D.
For many of us, ALS is something we think about abstractly with little awareness of the realities of ALS. Perhaps we call to mind famous athletes like Lou Gehrig and Steve Gleason or the remarkable scientist Stephen Hawking. But for those in the ALS community, that abstract concept becomes concrete when the diagnosis is given to us or someone we love.
For me, ALS became personal four years ago when my friend Scott received the diagnosis. An avid distance runner, his was experiencing an odd cluster of symptoms initially attributed to a running injury. As the alternative explanations were ruled out, Scott and his community of supporters were confronted with those life-changing letters: ALS.
The Susan Mast ALS Foundation rallies around patients and families as they process the diagnosis and navigate the progression of the disease. Our staff provide guidance, equipment, resources, and encouragement to families in our community. It’s personal for us too.
June is National Safety Month and I want to touch on safety in your homes and Severe Weather safety.
PLEASE BE PROACTIVE AND NOT REACTIVE!
Safety at Home -
Severe Weather Plan
What if you fall and need assistance?
by Pam Van Vliet, Care Services Manager
Spring has Sprung – we happily see all the new growth popping up all around us. This is a great time for pALS and families to revisit your needs and what additional support you may need.
Monthly support groups are a great way to grow in your knowledge of what is available from SMAF and learn from others on how they maneuver around the obstacles of living with ALS. A healthy support system includes a group who can relate to your circumstances.
Other benefits of meeting with a support group:
Caregivers, this is a great way to connect with others who share the same feelings and frustrations. Sometimes just knowing you are not alone is a growing experience.
Support groups at this time are via Zoom and by email invitation only. If you do not receive the email invites and would like to give one a try, email Pam at firstname.lastname@example.org.
by Emily H. Brechting, Ph.D.
When working with a therapist or counselor, the sense of connection is vital. With one ALS patient, it was clear that our mutual love for gardening would be that connecting point.
Last spring, I began working with an ALS patient—let's call them Sam. With in-person gatherings cancelled due to COVID, we began meeting online. Sam was grappling with the realities of an ALS diagnosis. They were experiencing anger, frustration, and disbelief while continually adjusting to the relentless progression of the disease. Sam was struggling and decided it was time for us to work together.
In one of our initial meetings, Sam lamented their inability to spend time outdoors due to mobility challenges and COVID restrictions at their care facility. Sam shared about their decades-long passion for horticulture. Sam deeply missed the feel of dirt on their hands, the smell of freshly turned earth, and the sheer pleasure of cultivation.
At that same time, my family and I were partnering with friends in an ambitious project for a mega garden. An open field became a 50x150 foot plot of tilled land. Raised beds with drip irrigation soon followed. Raspberries, blueberries, blackberries, and asparagus were ordered and planted. Tomatoes, beans, cucumbers, zucchini, broccoli, peppers, beets, rhubarb, peas, lettuce, kohlrabi, brussels sprouts...this was no ordinary garden. It was a quarantine enterprise!
I shared with Sam about this family project and they were enchanted. Soon, it became part of our routine. At the start of our meetings, I’d provide a quick update on the garden’s progress and let Sam see garden photographs by sharing my screen. Sam was delighted. In fact, when I forgot to take new pictures before a meeting, Sam let me know that this should not happen again.
After a few minutes of garden talk, we’d transition to "the work” of our time together where Sam shared struggles, practiced coping skills, and processed their concerns. And then to close our meetings, Sam would make suggestions about vegetable varieties to consider, strategies for dealing with garden pests, or flowers they thought would make a nice addition to our efforts. Through the common language of gardening, a connection was made.
Sam’s hands never touched the soil of our quarantine garden but their fingerprints were all over our bountiful harvest.
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 Pam VanVliet
The word support can mean many different things to pALS and caregivers living with ALS. From an equipment stand point, support means adaptive equipment that can help pALS move and live well with ALS. For example, when walking becomes challenging, a walker or power wheelchair. In the bathroom a sliding shower bench, hand grips and automatic soap dispenser for safely bathing, and a raised toilet seat with handles. As eating & drinking starts to become challenging, adaptive untensils and cups. It can also be helpful to change door handles from turn to lever.
Support also comes from family, friends and volunteers! Being aware of the needs of the family, walking the dog, yard work, house work, meals. For a caregiver the question “what can I do for you” can be overwhelming. Instead, look at what the caregiver needs and offer to help with that.
Support also comes from our community, recently a Schwan’s truck pulled up in front of my driveway. The man walked up with a bag of food and I told him I did not order anything. He asked if I was the ALS lady, and I said yes. He said he just wanted to help with food for our families and this was a personal donation from him.
What does support look like to you?
Susan Mast ALS Foundation