What do ice buckets, Stephen Hawking and voice banking have in common?

You almost can’t get on social media without seeing people dumping buckets of ice water over their heads. This is the ALS ice bucket challenge and it’s soaking the nation. With the ALS ice bucket challenge you have 24 hours to dump a bucket of ice water over your head once you have been challenged or donate $100 to the ALS Association. You then nominate 3 other people to take the challenge with 24 hours or they have to donate $100. Many famous stars are also taking the ALS “Ice Bucket Challenge”. Click here to see videos of 20 famous people taking the challenge. People are throwing these buckets of ice water on themselves to create awareness about the disease and raise money to fund research.The ALS campaign started in July and has raised millions of dollars for their association.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease. This disease affects nerve cells in the brain and spinal cord that causes progressive degeneration of the motor neurons and eventually leads to death. When these motor neurons die the brain is unable to initiate and control muscle movement. This is a progressive disease that makes it hard for someone to walk, speak, eat, swallow and breath. In most cases death will occur within 3 to 5 years although some people do live for many years, even decades.

It usually affects people between the ages of 40 and 70. Approximately 20,000 Americans have ALS. It is unknown what causes ALS. The first sign of the disease is usually weakness in one leg, hand, face or tongue. The weakness slowly spreads to both arms and both legs. In 1939, ALS got national recognition when Lou Gehrig was diagnosed with ALS and it ended the career of one of the most beloved baseball players of all time.

Although, ALS has often been associated with Lou Gehrig (and is often called Lou Gehrig’s disease) it is now often synonymous with Stephen Hawking. Stephen is an example of someone who has lived a very long time with ALS. He is a theoretical physicist who has studied and is known for his theories about time, black holes and the origins of the universe. He was born in Oxford, England in 1942. He was always interested in science and studied cosmology at the University of Cambridge. During his time at Cambridge he  began to notice problems with his physical health. He would occasionally trip and fall or slur his words when speaking. He began to be tested to find out why these things were happening.  At the age of 21, he was then diagnosed with ALS. The doctors informed him that he was in the early stages of ALS and informed him that he had a life expectancy of 2 years. Stephen has often reported that the thing that kept him going was that he was in love. He had met Jane Wilde at a New Year’s Eve party in 1963 shortly before being diagnosed with ALS and they were married in 1965. He has also reported that he was never a dedicated student and that when he suddenly realized that he might not live long enough to obtain his PhD, he dedicated himself to his studies and his future bride. Stephen eventual started losing physical control of his body and he had to begin using a wheelchair in 1969. He had 3 children and wrote books on space and time. He became very well known in 1974 with his research about black holes. His theory demonstrated that matter, in the form of radiation, can escape the gravitational force of a collapsed star. This was called Hawking Radiation.

When Hawking’s lost his voice due to a necessary tracheotomy in 1985, he needed to find other ways to communicate. He started with a software program that would allow him to spell by clicking a button in his hand. He later started using and is commonly known for his use of a augmentative and alternative communication device (AAC), which in his case is a computer that is controlled by the him to communicate.

A movie about Stephen Hawking’s life will be in theaters November 7, 2014. The Theory of Everything distributed by Focus Features is based on a book by Stephen’s first wife, Jane (Wilde) Hawing. Eddie Redmayne (Les Miserables)will play Hawing and Felicity Jones (The Amazing Spider-Man 2) will play his wife, Jane. The film is film directed by James Marsh who won an oscar for his 2008 documentary man on Man on Wire.

This movie will describe Hawking’s life in the 1960’s when he was a student at Cambridge and not yet sick. It will discuss how he started to develop issues with his balance and speech right after they began dating, his diagnosis, their marriage and the birth of their three children. According to his wife, as Stephen’s disease progressed he did not want to discuss what was going on with him or use a wheelchair. She reports that as his disease got worse he became more involved in his work and distant with his family. It is reported that he later fell in love with a nurse and left his wife to marry her. The second marriage did not last. Hawking and Jane were married for 26 year.

Take a look at the trailer for the upcoming movie:

In the above trailer, there is a scene of Hawking’s using his first augmentative communication device with speech and his wife is surprised when hearing the voice for the first time and comments “it’s American”. This was surprising to her because Hawking’s natural speaking voice has a British accent. These computer-generated voices used to speak for the user have not had many voice options. Until recently, there were only a few choices in choosing a voice. such as choosing between a male or female voice or an adult or child’s voice. Can you imagine losing your voice? Think about how it would feel to speak yet hear someone else’s voice….a computer’s voice at that and then to have such limited options.

Technology has now been created called voice banking and is an option for people who rely on assistive technology to speak for them. Voice banking is the process of storing one’s own voice. Their voice is previously recorded and then when/if they eventually need to use the recordings they can program their device so the voice people will hear is their own voice. Many people feel that they lose their identity when they lose their voice. Voice banking is a way for people to hold on to a bit of their individual identity when they lose their spoken voice.

Their are 2 types of voice banking options:

1. Recording their voice outright. This is where they would record phrases such as “my name is”, “how are you”, “i would like a glass of water”. The person would anticipate the phrases, names etcetera they wanted to record and would record each one.

2. Digitized speech is where a person would create a computer file of all the sounds their voice makes from the alphabet and a combination of letters. These sounds are synthesize by a computer to form the words using the sound of their own voice.

Outright recording, digitized speech, word and phrases are saved as a .wav or .mp3 file and then can be used on many different assistive technology devices.

Now there are several software packages on the market that allow people to record their voice to use a synthetic version of their voice for communication in the event they lose their voice. Model Talker is one such speech synthesis software designed for people who are losing or who have already lost their ability to speak. In our Assistive Technology Update podcast, Wade Wingler, Director of Assistive Technology at Easter Seals Crossroads, interviewed Tim Bunnell with Model Talker to learn more about this software. Click here to listen to the podcast with Tim Bunnell.

Being able to take take recorded words,phrases and sounds and synthesize speech is a great development for people who have lost or have never had their spoken voice. Preserving someone’s voice with voice banking is an amazing advance in assistive technology that is making communication devices more personal.

Roger Ebert, american film critic, journalist and screenwriter needed the use of a communication device after losing he speech due to head and neck cancer. He is one of the first examples of someone using voice banking when Scotland company using hours of his past movie commentaries to use for synthesized speech on his computer. Here is a video of Roger using his communication device with his voice and his wife hearing for the very first time.

At Northeastern University, there is currently a human voicebank initiative  with a goal to have people donate their voices so that people who were not able to voice bank their voice and have either lost their speech or never had speech for people to have more synthesized voices to choose from that may be more fitting to their body and personality. Click here you are interested in learning more about the human voicebank initiative or if you interested in donating your voice to the voicebank.

Ice buckets, Stephen Hawkins and voice banking would not seem to have any thing in common. However, they all represent things that are bringing awareness and hope for those diagnosed with ALS.