9 posts tagged “PALS”

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.


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In the market to live better: ALS members weigh in

Posted November 6th, 2017 by

Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out:

When it gets difficult to turn over, members mentioned:

  • Drive Medical alternating pressure mattress
  • Check out Amazon for a variety of inexpensive alternating pressure mattress pads and pumps

To manage muscle weakness, Kate shared a list of helpful products:

  • For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write. Available online and in office supply stores.
  • Magnetic closure shirts. The shirts have buttons sewn on the front, but the closure is secured with small magnets behind the buttons, including the cuffs.
  • Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.”
  • The “Toilevator” is a very small pedestal that goes under the entire toilet and lifts the entire thing up about 3 ½ inches, works with a bidet seat.

For Eyegaze:

And, other communication devices:

When transferring to and from the toilet gets tough, members mention:

For personal hygiene:

What products help you? In the market for something specific? Head to the forum – the community might have a recommendation.

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