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The Impact of Saving One’s Identity through Voice Preservation

“Hi Emily,

A few months ago you asked me to email you about the voice the foundation funded for me. I wasn't done banking yet - and then because of a mic issue, I actually had to start over. I'm happy to say that I now have had my voice for a while and it is working great.

As far as the impact on me that it has had... I knew it would be huge to be able to speak using a voice that sounded much closer to mine than the sample voices. My wife always said it was weird for "Will" (the name of the sample voice I was using) to wish her goodnight. Then there are the specific phrases that I recorded that are in my exact voice, including goofy and silly sayings that are 'Chris-isms' as well as the endearments that are so important to sound just right.

What I didn't expect was the boost in confidence it gave me when interacting with people. Just having my voice (albeit synthetic and somewhat robotic) come out of the speech device rather than someone else's has made a huge difference in my willingness to interact and use the device.

Thank you SO much for funding my voice and for giving me a chance to always sound like me, no matter what comes.”

I've heard time and time again from my patients that the hardest loss was the loss of their voice.

So why is voice preservation so important?

  • Our voice plays a role in the speaker’s life as well as their loved ones. In Costello and Martine's article, 2022 they discuss the role of personal voice and familiar voice. Personal voice is important for the individual to share their personal and social identity; as well as important for communication. The words that we say only convey a small portion of what we mean. We convey a lot of meaning through how our voice sounds, our body gestures, facial gestures, etc. these also carry meaning.

  • A Familiar voice has an impact on those around us. Familiar voice can create an "emotional auditory event". Think about the soothing effect a mother's voice will have on their child, the baby may not know what the mother is saying, but just the sound of her voice can calm the baby. The unique features of one's voice can help sustain and nurture these social bonds and relationships. Not having one's voice can negatively impact these relationships by reducing the emotional connectedness one may feel with another.

  • Finally, having one's personal voice on a device has actually been shown as a motivator for continued use of a device (Creer et al., 2013).

So what is voice preservation?

  • Voice Preservation refers to the act of saving one’s natural voice to later use on a device as either a synthetic voice (voice banking), or with digitized messages (message banking). 'Double Dipping' is the process used to create a synthetic voice through the use of banked messages. This option allows individuals to focus on banking messages that are important to them, and then use these phrases to create a synthetic voice.

How has voice preservation changed, and who could benefit from this?

There have been many changes over the years in voice preservation; increasing the accessibility for individuals seeking this service. This includes changes to the speech engine, equipment requirements, cost, setting requirements, and avenues for voice creation. Here are some examples of the changes:

  • Speech Engine – The technology used to create a synthetic voice has changed from unit selection synthesis to parametric synthesis with deep neural networks. This decreased the number of phrases that were required to create a voice and increased quality of the voice. Voice Banking can now be completed with only 50 phrases in approximately 30 minutes.

  • Equipment requirements – The equipment required to bank one's voice changed as well. Previously you had to use a high quality microphone in a soundproof booth; now you can bank your voice at home with a directional microphone, such as a headset for just $30.

  • Cost – 12 years ago a banked voice would have cost upwards of $12,000 – now it costs anywhere from $100 to $1000, or free for certain diagnosis, I.e. ALS, through Team Gleason.

The ease of access is reflected in the number of individuals that are now seeking out this service. For example, it's not as daunting of a task for an individual considering voice banking; they don't have to spend as much time recording; the cost is much less significant; and it can be done from the ease of their home instead of having to travel to a special clinic; and the equipment is not as expensive. The quality of voices also continues to improve.

You may be working with individuals currently that could benefit from voice preservation! The following populations could all benefit from these services: individuals undergoing laryngectomies; patients that may fatigue throughout the day; individuals with neurodegenerative diseases, such as, ALS, Parkinson’s disease, primary progressive aphasia, Huntington’s disease, progressive cerebellar ataxia, multiple sclerosis; and individuals w/ planned intubation/ventilator support.

Finally, how does this help develop therapeutic alliance and work through grief?

  • “There is no single way to take people with terminal illness through the process, but there are some rules. You sit down. You make time…. You’re trying to learn what’s most important to them” (Gawande, 2014).

  • Working with individuals through voice preservation has provided me endless opportunities to work on my counseling skills. Voice preservation is a deeply emotional and personal experience that requires you to create an emotionally safe environment that allows individuals to express painful feelings. Therapeutic alliance is developed as these feelings are met with validation and acceptance as opposed to judgment. This promotes interconnectedness and improves patient engagement and satisfaction.

I typically begin this process through asking patients to share their story. This allows them to have control over what they’d like to share, and how much they’d like to share. It provides an opportunity for them to express and identify their hopes and fears; as well as process what has happened and how to cope with their new reality and loss of identity. Finally this gives me as a clinician an understanding of emotional, social, family, and spiritual aspects of their life. This helps develop therapeutic alliance, as well as gives me information to help guide their message banking.

I hope this information is helpful in understanding a little more about voice preservation, and how this can be completed with individuals you work with.

Emily Kornman works as a Speech-Language Pathologist full-time for the Team Gleason Foundation and PRN in the acute care setting at Ochsner Medical Center . Emily has been passionate about finding ways for individuals with communication challenges to communicate since she began utilizing AAC with individuals with Autism and other neurodevelopmental disorders. She now specializes in AAC primarily for adults with neurodegenerative diseases. She is driven by finding ways to make the world, and the technology industry, more inclusive and accessible for the individuals she works with. Emily is grateful to work in a unique setting that allows for collaboration with leaders in the technology industry to create innovative solutions in this space.

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