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Raise Your Voice to Elevate the Fight Against ALS

May 24, 2018

ALS Association Banner - Raise Your Voice. Together We Will Be Heard.May is National ALS Awareness Month.  Amyotrophic Lateral Sclerosis (ALS) is sometimes referred to as Lou Gehrig’s Disease.  The ALS Association is asking supporters to “Raise Your Voice to Elevate the Fight Against ALS” in May.

I plan in this month’s blog to talk about the importance of your voice.  People with ALS are robbed of their ability to move, talk, swallow, and breathe.  The loss of speech can be devastating to the person with ALS as well as family, friends, and caregivers.  We all want to be heard and understood.

Early this year I was approached by a speech-language pathologist who was working with a man diagnosed with ALS looking for options for using an augmentative and alternative communication (AAC) device because the man was losing his voice.  I began doing research and found a considerable amount of information on voice banking.  The gentleman’s voice was still good, and he chose to use ModelTalker to bank his voice and then use the synthesized version with the AAC application (Predictable).

In this process, we found out that once registered, the ALS Association would lend him an iPad with the Predictable application, so he didn’t need to purchase the application or the equipment.  The staff at the ALS Association (Minnesota, North Dakota, South Dakota Chapter) could not have been more helpful.  Click here for their website.

What is Voice Banking?

Voice banking is the recording of a person’s voice for future use with a SGD (speech generating device) or voice output communication aid. It cannot be stressed enough the importance of recording the voice of the person with ALS while they are still easily understood.

What does a person need to bank their voice?

With most voice banking systems, a person needs a computer, a good microphone headset, a quiet area to record, and perhaps the help of a speech language therapist.  The person does not need a recording studio.  The person will also need patience; this is not a fast process in most cases.

A person who is losing their voice may decide to record certain messages for the future such as “I love you,” “Please get me some water,” “Hello, how are you?”  By recording messages for the future, the recordings will sound exactly like the person. This is called message banking.  The idea is to have recordings of those messages that are important to you and your family.  These may be family jokes or sayings or any requests you may have.  Here is a great list of generic messages. 

Another method called synthesized speech requires you to record many words or phrases with a company which will use the recorded phrases to create a synthesized voice that will sound like you to be used in an SGD.  Stephen Hawking used a computer-generated voice developed in the 80s.

There are many companies who are able to take your voice and create a computer-generated version of your voice which will allow you to use a SGD and say anything you want to say.   Below are some companies with prices.

Products for synthesizing voice

  1. ModelTalker System from Nemours Speech Research Laboratory ($100). The GleasonFoundation covers the cost for individuals living with ALS.  This is a speech synthesis software package where you record 10 sentences for review.  Then the company will tell you whether or not your voice is ModelTalker logostrong enough or whether the equipment such as the microphone is picking up well enough.  Next, you will record between 400-1600 phrases in multiple sessions.  When all the recording is done, the company will convert your voice into a synthetic voice. To record you must use a Windows computer or Mac computer using the Chrome browser.  It will not work with iOS devices to record.  The finished synthetic voice can be used with the Predictable application or ChatAble application.  The Predictable application allows you to use both banked messages and banked voice.
  2. CereVoice Me from CereProc (approximately $670). This is a web-based program where you read a script and collect audio data used to build a Windows version of your voice in a few hours.
  3. VocaliD BeSpoke ($1499)
    There are two ways to get a synthesized voice from this company. You can preserve your voice by recording 3500 sentences and creating a vocal legacy, or you can use the BeSpoke voice and record only a few seconds of your voice for someone with very limited speech.  The company will then try to match your vocalization with a donated voice and create a custom voice.  The synthesized voice uses the MyVoaliD app for iOS or Android systems.
  4. My Own Voice from the Acapela Group ($2400 ) This system doesn’t charge for the recording process.  You will be asked to record 1500 sentences, and they will create the synthesized voice which you can hear and decide whether to purchase to use on a device.  It can be used on the Proloquo4Text app for iPad and the Tobii Dynavox.

You can see there are many options.  Another option is to have a close relative who sounds like you record their voice if your voice is already too weak.

My sister-in-law had ALS and I wish she would have had these options to explain how she felt and what she wanted.  Raise Your Voice this month in support of the ALS cause.



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