Communication

Communication with Caregivers
As ALS progresses, you may need a help-summoning app for when the PALS is on their own, which could be as simple as a Home screen shortcut or a free app; a bed call button, which can be operated by eye, voice, toe, finger, head (or an ability switch taped to any reliable muscle, such as cheek or forehead); a means to monitor the PALS via wifi, USB or Bluetooth camera with or without a speaker, etc. (The latter may be classified as baby/pet monitors or security cameras, depending on form factor.)

Very sophisticated baby monitors are available, but generally require special baby-sized clothing for full functionality such as monitoring breathing. If a CALS needs to monitor respiratory rate in real time, rather than wake someone up with a pulse oximeter, or sit by their bed, the PALS could wear a FitBit and the CALS can monitor pulse rate on the PALS' paired phone in the FitBit app. Pulse rate is usually a good indicator of respiratory distress, especially if there are sudden severe changes.

Smartwatches, though more costly, have similar functionality.

Apart from waking someone up in an emergency, there is an ongoing need to communicate when speech and/or limbs no longer work. Some approaches are below.

Low/Medium Tech
Some PALS will never be able to use smart phone/tablet speech options. Lower-tech options for communication include a word/phrase board (printable from online sites) and use of a white board where the CALS writes or points to common questions or guesses and the PALS responds however possible. Questions may be spoken, of course, but sometimes the white board method is faster with questions that are asked frequently. Some CALS develop personal shortcuts or nicknames to save time.

PALS whose issues are primarily bulbar can often use their fingers for texting or a simple thumbs up/down for yes/no, late into the disease.

As fingers weaken, supporting the arm with a desk support such as the ErgoRest line (on Amazon) may extend keyboarding time. Using a low-force keyboard and devices that allow for taps instead of clicks may also help.

Voice Assistants
For PALS who still speak, iOS8 and later versions permit access to Siri without pressing buttons. Android permits voice recognition control as well. Some Web sites imply that a separate software purchase is necessary to be able to utilize a “virtual” (onscreen) keyboard. It is not, although apps that enable creation of custom keyboards are available.

Also, modern OS have text to speech (TTS) capability built in; you do not need to buy dedicated apps to have text read to you when you can no longer hold books or phones. If you do not like the default voices in your OS or e-reader app, snazzier ones are available for little money, for use in apps such as Voice Dream, or you can pay for books that are professionally narrated, from portals such as Audible and free sources like LibriVox.

TTS apps like Voice Dream Reader will work with any PDF, so you can go to the many sources of free ebooks in the public domain, and get PDFs that can be read to you, and/or automatically scrolled and highlighted in a style and speed of your choosing.

Bonus: Apple's Personal Voice feature can be used in VDR, so, for example, your kids or grandkids can hear you "reading" their favorite book even if you've lost your voice. Admittedly, it will still sound more mechanical than an audiobook.

Generating Speech When You Can't Speak
Some PALS use dedicated eye gaze-activated “speech generating devices” such as Tobii and Dynavox for Windows (which are now one company, Tobii) and Eyegaze (Mac). However, speech-generating devices (SGDs) are no longer the answer for most PALS.

These systems are expensive, reimbursement can be a challenge (current regulations call for patients to relinquish their Medicare-funded devices when they enter hospice or long-term care, for example) and, by all accounts, are often difficult to calibrate as the PALS progresses, or to use in settings such as the outdoors or a sunny room.

If PALS are content with an SGD, that's great, but if it's difficult to use, moving to built-in head tracking or eye tracking as per below is recommended as a next step, or, if there is another equally reliable muscle above the neck that's easier to use, try the TetraMouse.

For any PALS with lip, tongue, and/or chin control ability, the TetraMouse, which can leverage a USB port, is worth a look.

Voice Banking
Voice banking generates a voice that may or may not remind you/others of your pre-ALS voice. Your clinic's SLP may be able to advise you which platform to look at. All are not compatible with all devices or apps, and each takes a slightly different approach to creating your "voice."

Voice Keeper's advantage: funding from the Steve Gleason Foundation may be possible, and it can use previously-recorded sound files.

Acapela may offer more languages.

For iOS and Mac users, "Personal Voice" offers a pretty quick process, and is free. So far it only works in limited apps, but is becoming available to others. I've tested it, and the "record everything in 15 minutes" claim is real, though you can break up the sessions. The resultant voice is so good, my son had to ask if it was artificial, upon which he declared it "spooky."

Tips for recording the Personal Voice: use expression as if you were presenting to an audience, speak as quickly as you would in conversation, and re-record a phrase if you fluff it. And, of course, do it early on if you can.

Free Voice Clone
As of August 2024, Bridging Voice & ElevenLabs Voice Clone offer PALS a free "clone" for use with their app. Medical verification is required. The application is here. People who have used the process, which can use new or prerecorded audio, describe it as a success.

Switch interfaces
Anyone who can use any kind of switch, as opposed to eye gaze only, is likely better off with a modern computing device rather than an "SGD" like a Tobii/Dynavox device (these were two companies and are now merged).

As iOS devices (iPhone, iPad) and Android devices (Nexus, Galaxy, Lenovo, Moto, Pixel, etc.) evolve their operating systems to play well with switches and have built-in switch access, e.g. via head movement and being able to attach switches with even a single working muscle (e.g. forehead, cheek, jaw, tongue) via Bluetooth, head tracking and eye gaze are not always needed. And apps are being developed that will make switch interfaces, such as currently required, obsolete.

A switch can be used to interact with applications that can utilize “switch scanning,” that is, automatically cycle through menu items, words, choices or letters (as with a virtual keyboard). Then, using a switch, the user makes a selection. Google your platform/device + “switch access” or “switch scanning.”

However, for some people who still have a reliable muscle other than in their neck or eyes, head tracking or eye gaze is faster and easier than using a switch.

In addition, many PALS don't have that reliable muscle at all. They need head tracking or eye tracking.

Head tracking
To use your head as a "mouse" without a separate device on your head, both iOS and Mac have built-in functionality. Android is a bit more complex and I would ask on more Android-specific sites.

One way to check ability to use head movement/a head mouse as a switch is to enable the head movement setting in your favorite device, if/as applicable, and see what can be done with scanning, the speed of which is usually selectable.

If neither of these works well enough, well-reviewed hardware devices that you wear for head tracking include the Glass Ouse (all major OS but Mac), Smyle Mouse (Windows only), and various gaming packages.

Eye tracking
Newer iPhones and iPads that have a TrueDepth camera, like the iPhone X. XR and XS, and the iPad Pro, permit direct use of (pair with) a Tobii 5 eye tracker (the smallest one). Apps extending the OS functionality are available for download, though some of the more expensive ones such as PCEye, are a couple of thousand dollars and therefore it pays to try other software first. OptiKey, a free app, can be paired with some eye trackers.

There are also eye gaze apps in the Google Play store for Android devices. iOS18 has native eye gaze built in so it's worth trying. The Personal Voice as well as voices from Acapela and others can be used in AAC applications, Facetime, etc. Compatible iOS devices for the eye gaze functionality include:

iPhone: iPhone 12 or later or an iPhone SE (3rd generation).

iPad: iPad Pro (M4), iPad Pro 12.9-inch (5th generation and later), iPad Pro 11-inch (3rd generation and later), iPad (10th generation), iPad Air (M2), iPad Air (3rd generation and later), or iPad mini (6th generation).

Tobii/Dynavox
The Dynavox of yesteryear, a bulky freestanding device that includes hardware and software in one, is obsolete in the age of mobile devices for anyone willing to use a phone or tablet.

People are doing fine with a Tobii eye tracker paired with a mobile device (which may not be needed if your device has iOS 18) and OptiKey to augment the OS functionality.

pceye has the Tobii software built in but is much more expensive, so I see no point in buying either one as yet before seeing what you can do for free in iOS and Mac.

You can test all this out and you always have the eye tracker or SGD options if you need them.

Android options are evolving, too, with a beta eye tracker app available if you have an Android device. However, if you don't currently have a mobile device or are already on iOS, that's the direction I'd go. Apple has always been further ahead in using mobile devices with assistive technology in ALS, spinal cord injury, muscular dystrophy, etc., with the possible exception of medical/legal dictation with Dragon under Windows.