Voice Of The Future

Electronic tool gives local woman ability to communicate

ALS sufferer Sheila Watts communicates with her sophisticated computer wheelchair, which allows her to interact in society. Watts cannot speak or move her limbs.

Wendy is a mere six pounds, but those six pounds have become essential to the Watts family. That's because Wendy is a Vanguard Plus speech assistance device that gives Sheila Watts the ability to communicate. When diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease) in April 2005, Sheila knew the progressive loss of muscle control, characteristic of her terminal illness, would eventually rob her of intelligible speech. By last spring, her ability to be understood was severely compromised. It was a tremendous relief when she acquired her electronic "voice" in mid-June. Without it, she says tongue-in-cheek, "I'd have been dead from frustration."

"Wendy" is the factory-given name for one of the Vanguard's eight pre-programmed synthesized voices and the moniker stuck. Sheila chose the Wendy voice, she says, because "it was the least obnoxious."

Sheila and her family know how much harder coping with the progression of her ALS would be without a way for her to communicate. They experience it daily in situations where Wendy cannot be used, such as transfers out of her wheelchair or trying to get her comfortable in bed. Without Wendy, Sheila has to spell out a word by indicating its letters one by one with a nod of her head as someone points to an alphabet card. It is painstakingly slow, imprecise and extremely frustrating.

Sheila, who now only has limited movement of her head, adds with her typical dry humour, "it's not like I can play Charades."

"Speech is a fundamental part of being human," says Mike Watts, Sheila's husband of 28 years. "Communication is essential to any relationship and Wendy allows that to continue. It may not be Sheila's voice, but it is her personality. Sheila is still Sheila."

Ontario residents who were born without the capability to speak or write, or who have lost the ability through accident or disease, are able to lease augmentative communication devices, such as the $10,000 Vanguard, from the provincial government's Centralized Equipment Pool. The equipment pool was set up in 1991 as part of the province's Assistive Devices Program. The ALS Society of Ontario is also a key in providing equipment, funding and support services to ALS patients, Sheila stresses.

Sheila is under the care of the ALS Clinic at the Ottawa Hospital Rehabilitation Centre, which uses an interdisciplinary team approach to help ALS patients achieve the highest level of function in all aspects of their lives. The ability to communicate is essential to quality of life and Sheila has been guided through the options available to her by speech-language pathologist Margo Butler and the Rehab Centre's Augmentative Communication and Writing Service. This is the only such program for adults east of Toronto.

Once it was determined that the Vanguard was the best device to meet Sheila's needs, Wendy was programmed with her personal information, as well as words and phrases specific to her requirements in categories such as basic needs, comfort and social phrases. Sheila can say if she is cold, hungry, tired or annoyed, and even ask for a glass of wine. Specific instructions for the myriad of equipment that is part of Sheila's daily life are also included and additional phrases can be added as needed.

To use Wendy, Sheila points a reflective dot placed on the nosepiece of her glasses to the phrase, word or letter on the screen she wants to use. Wendy will then speak, with its mechanical intonation and sometimes quirky pronunciation. When Sheila uses the keyboard in a conversation, the listener can either wait for Wendy to speak or read along, often anticipating the words to save Sheila time and effort. This "head-pointing" method, which uses infra-red light, also allows Sheila to use her computer, which is equipped with a head-mouse and specialized software. Sheila cannot hold a pen to write a letter, but she can surf the Internet and send and receive e-mails.

People are fascinated by Wendy when they meet Sheila. A former teacher by profession, and always a teacher by instinct, Sheila patiently demonstrates how Wendy works.

"I'm enough of a show-off to enjoy doing it," she admits.

Wendy meets Sheila's communication needs for now, but as she becomes increasingly bed-ridden, she is determined to figure out how to use it in bed. As she loses movement of her neck and head muscles, her Rehab Centre team assures her they will utilize whatever residual movement remains to give her access to other communications technologies, so she will always have a voice.

Working with Sheila has been a joy, says Butler. "I love getting her e-mails," the speech-language pathologist adds. "Her ability to keep her sense of humour really makes a difference."

Sheila's attitude towards her situation is simple: "The glass can be half-empty or half-full. I can say, 'Poor me, I can't talk,' or 'Lucky me, I have Wendy.'"

-- by Heather Jamieson

Reproduced from http://www.eastottawa.ca/article-186078-Voice-of-the-future.html

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