2 posts tagged “communication device for ALS”

Communicating with ALS: From devices to voice banking

Posted January 17th, 2018 by

Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS.

Tablets: Windows vs. iPad vs. Android

Trouble with typing or hand weakness? Amy, an augmentative communication specialist at Forbes Norris ALS Research and Treatment Center, recommends Windows (8 or 10) and Android tablets:

  • Windows devices have USB ports which makes them the most compatible with accessories like a mouse, joystick, eye tracking or head tracking device.
  • Androids may be compatible with these accessories as well, but often require a USB adapter. Adaptors are specific to the Android port and are inexpensive and easy to find online if you search for “USB adapter” and the make and model of your Android device.
  • iPads don’t offer these accessory options that use a pointer because their screens don’t display a mouse cursor. They do offer switch scanning access methods (a system by which a series of choices are highlighted and can be selected by hitting/activating a switch) for people who can’t use their hands on a screen or external keyboard. Some pALS find scanning too slow compared to cursor movers like a mouse or eye tracking.

Text-to-speech apps:

If you have difficulty speaking, there are many app options that convert text to speech:

Want to know more about communication devices? Check out Amy’s tips for paying for your tablethands-free options and message and voice banking.

Voice banking:

Many people with ALS who experience problems with speech, voice, and communication choose to preserve their voice for future use.

How does voice banking work?

Voice banking is a process that allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. The recording is then converted to create a personal synthetic voice.

When the person is no longer able to use their own voice, they can use the synthetic voice in speech-generating communication devices to make an infinite number of words and sentences. The “new” voice isn’t a perfect replica of the person’s natural speech, but it will bear some resemblance.

Want to bank your voice?

Check out these options:

ModelTalker: A software designed for people who are losing or who have already lost their ability to speak. It allows people who use a Speech Generating Device (SGD) to communicate with a unique personal synthetic voice that sounds similar to their own voice.

Message Banking: An app that enables you to record and save messages in your own voice that can later be imported into a Speech Generating Device (SGD) or several tablet communication apps.

VocaliD: A platform that creates unique vocal identities for any device that turns text into speech. From just a three-second sample of sound that you make, the app can match you with a speaker from its voice bank and blend your vocal sounds with their recordings. Check out this moving video to see how voice banking changed the life of one man living with ALS and gave his family a piece of something they thought they had lost forever.

How much does it cost? Recording and banking your voice is free with programs like VocaliDMessage Banking or ModelTalker. With VocaliD, you only pay to download and use your synthesized voice. Pricing starts at $1,199.

When should you bank your voice? VocaliD recommends that you bank your voice sooner rather than later. With two options from VocaliD, you can bank your voice no matter where you are in your speech loss:

  • BeSpoke Voice: For people with speech impairment who are able to record three seconds of sound.
  • Vocal Legacy: For people who want to preserve their voice for the future and are able to record several hours of speech.

Have you banked your voice? Do you use a synthesized voice? Join PatientsLikeMe today to share your experience.

Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device

Posted April 11th, 2012 by

For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost.  But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one.  The problem?  They’re big and expensive, and in many cases, US health insurers won’t cover them.

The "Tag" or Signature for Los Angeles Graffiti Artist TEMPT ONE

This discovery came about when Ebeling learned about a legendary Los Angeles graffiti artist named Tony “TEMPT ONE” Quan (whose “tag” is shown above), who was diagnosed with ALS at age 34.  Quan’s family told him that they were only able to communicate with their completely paralyzed son through spelling out words.  Shocked, Ebeling decided he had to help.  “There are certain inalienable rights that people are entitled to, and I think being able to express yourself is one of them,” says Ebeling, who now gives TED talks (see video below) about this unexpected calling.

First, Ebeling convinced Quan’s insurer to cover an eye gaze system so that the talented artist could “speak” again.  But he didn’t stop there.  He wanted Quan to not only be able to communicate but to draw, so that he could continue his career.  So Ebeling founded the Not Impossible Foundation and enlisted the help of programmers and open source activists in creating a low-cost, open-access writing and drawing device for paralyzed patients.  Despite having no background in ocular recognition, they pulled it off.

Graffiti Artist and ALS Patient TEMPT ONE Wearing the EyeWriter Device

Named one of the top 50 inventions of 2010 by Time, the brilliantly simple EyeWriter device can be made for less than $50.  It involves a pair of sunglasses, IR LED lights, copper wire and a PC webcam.  There’s no technology component that can’t be found at Home Depot or Radio Shack, and that’s the point.  With free open-source software that can be downloaded online, the DIY EyeWriter is a device almost anyone can build and use.  (Download the instructions here.)

A Quote and Sketch from TEMPT ONE About How It Felt to Be Able to Draw Again

“We’ve created a device that has absolutely no limitations,” says Ebeling.  “There’s no insurance company that can say ‘no.’ There’s no hospital that can say ‘no.’ Anybody who’s paralyzed now has access to draw or communicate using only their eyes.”  Case in point:  in April 2009, Quan was able to create a completely new 10-story mural using only his eyes.  Two years later, his post-ALS artwork appeared alongside famous street artists Banksy and Shepard Fairey in a MOCA exhibit.

This amazing story of inspiration and ingenuity has now been turned into a documentary entitled Getting Up: The TEMPT ONE Story.  Directed by Ebeling’s wife Caskey, the film won the Audience Award for Best Feature Documentary at the 2012 Slamdance Film Festival.  Check out the trailer below and read what this husband-wife team think are the universal lessons from their EyeWriter journey.