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 Pam VanVliet, Care Services Manager
Making Memories is so important with family and friends especially when living with ALS. Traveling can be tricky and being well prepared can ensure you have a great time!
Here are a few tips when preparing for your trip:
1. Contact the local ALS Association in the areas you will be. They can deliver manual wheelchairs, raised toilet seats, portable ramps, and other equipment you may need.
2. Pack a separate suitcase with any items you require for your comfort such as;
Make a list of what your needs will be and let the hotel know. If you can, look at pictures of the room you will be staying in to get a feel for what the "Handicap" room means to them.
These are just a few things to think about. You can travel well and make great memories living with ALS!
by Emily H Brechting, Patient Support Psychologist
My family has been caught up in the excitement of the Summer Olympics in Tokyo. We gather together to watch the day’s events and collectively marvel at the spectacular displays of athleticism. We ooh and ahh, cheer at the screen like the competitors can hear us, and relish those surprise victories. Some of us (ahem, it’s me) wipe tears during stories of adversity and sacrifice.
Recently, we learned about the daily training regimen and dietary plan of one highly decorated swimmer. The commentator described untold hours of exertion, outlined rehabilitation and strength training, and explained carefully selected nutritional plans. In sum, this one athlete navigates each day with a singular focus.
Dedication. Endurance. Focus. Wait—that sounds like so many of our ALS families.
Before you dismiss my comparison of ALS patients to Olympians, hear me out. Consider the time and energy exerted by patients and families to navigate a single day of meeting nutritional needs: preparation, chewing, swallowing, administering feeds, cleaning feeding tube equipment. Now think about the time and energy expended to transition from bed to a powerchair for the day: getting out of bed/using a lift, bathing, toileting, dressing, getting into the chair. I could continue on this theme highlighting the demands of living with ALS, from leaving the house to navigating a clinic appointment, but I’ll stop here.
We don’t hand out medals for living with ALS but maybe we should. Let’s recognize these warriors and their amazing caregivers who make their daily fight against ALS possible.
They endure. They persist. We see you.
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.