Jay S. Fishman ALS Augmentative Communication Program | Voice Preservation

The ability to communicate is essential to human interaction. Of all the challenges ALS brings, many people tell us that one of the most devastating is the loss of speech. People with ALS have told us that losing the ability to speak is like losing an important part of self-identity. We believe that the greatest contributor to loss of identify and self when speech is difficult is the loss of one’s authentic voice.

ThumbprintOur voices define us. Our voice is our acoustical fingerprint (Costello, 2010). How many times have you heard someone say "it is so good to hear your voice!"? We are able to provide comfort, establish personal connection, and bring the spectrum of emotions to people around us with our voice and our unique intonation, prosody, and passion. There are even studies that suggest physiological reactions at the neuroendocrine level to hearing authentic voice of loved ones (Seltzer, Ziegler, and Pollok 2010, Seltzer, et.al, 2012).

There is no crystal ball with ALS progression. Many people with the same diagnosis of ALS are impacted and progress very differently, at different rates and with different symptoms.

The Jay S. Fishman ALS Augmentative Communication Program supports people with ALS and their families to PROACTIVELY create tools and learn strategies in the event they are needed in the future. Voice preservation is a critical component of advanced planning. It may never be needed but much like an insurance policy, we believe it is better to take control of the future and have one’s voice available but not need it, then to regret not having it. Commercial speech-generating devices offer generic synthetic voice output. Our goal is to help people maintain their "acoustical fingerprint."

The clinical decision making equation when supporting a person with ALS in voice preservation.

Message banking

The BCH Message Banking Process™ is a proactive approach for people with ALS. The process allows people to authentically and proactively digitally record and store words, phrases, sentences, and personally meaningful sounds and/or stories over time, using their own natural voice, inflection, and intonation. If and when it's needed, following the BCH Message Banking Process™ process allows for these recorded messages to be incorporated into the most appropriate technology to enhance communication and presentation of self.” When a person with ALS uses a communication device, a synthesized computer voice will “speak” the sentence that is typed. Any message that was “banked” such as “I love you," “I’m proud of you," “please do me a favor," etc., will be spoken out exactly as recorded.

Voice banking

Voice banking is a process that allows someone to create a synthetic voice that ideally sounds like your natural voice. Learn more.

‘Double dipping’

“Double dipping” combines the abilities of Message Banking™ and voice banking to create a unique product. Learn more.