MS PATIENT USES HEAD, HEART TO GET HER MESSAGE ACROSS - The Buffalo News

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MS PATIENT USES HEAD, HEART TO GET HER MESSAGE ACROSS

Anne Shuell can type between 15 and 20 words per minute.

That's lightning quick, when you consider that she can't use her hands. Mrs. Shuell -- with the help of the Head Master/Screen Typer computer software -- types letters and speeches by moving her head and puffing on a mouthpiece.

Even though her multiple sclerosis has put her in a wheelchair and denied her the use of her hands, Mrs. Shuell, 50, is a health-care consultant, lecturer and free-lance writer.

She is believed to be one of an estimated 5,000 disabled people in Erie County -- and one out of almost 1 million people in the United States -- who need computer technology for help in writing and speaking.

That local group will get a boost Thursday night, at the first session of the Coalition for the Communicatively Challenged, a group of clients, family members, service providers and other professionals in the field. The meeting will start at 7:30 p.m. at the United Cerebral Palsy Association on Union Road in Cheektowaga.

The group's goal is to define the local population in need, then provide a clearinghouse for ideas and available services so that services can be expanded to that population.

"We want to get the knowledge from the clinics and bring it into the homes where it's needed," said Margaret Holden of Amherst, an advocate for communications technology for the disabled.

"Advanced technology has opened a new world to non-speaking persons," Ms. Holden added. "Communication is now possible where previously there was no hope."

Mrs. Shuell always could talk. But now, thanks to the improved technology, she has carved out a much fuller life for herself.

"I've been able to propel myself into a very independent world," she said.

She already was lecturing, to health-care professionals and community groups, and serving on the local board of the National Multiple Sclerosis Society 1 1/2 years ago, when the sophisticated computer software program opened up a larger world of communications for her.

Now Mrs. Shuell sits at her computer in her East Amherst home, typing letters with her head, not her hands.

Wearing a headset, she uses quick head movements to move the electronic cursor to the letter of the alphabet she wants.

Then she puffs on her plastic mouthpiece, signaling the computer to type that letter.

She has perfected that typing method, to the point that she "hits" the average key in less than a second.

Mrs. Shuell uses similar technology to dial phone numbers.

"I'm still as excited about this as I was 1 1/2 years ago," she said. "I'm up early in the morning, and I stay up late. My husband accuses me of being a workaholic."

Mrs. Shuell has more opportunities than many of the disabled people who lack communications skills. Among them are people disabled by cerebral palsy, muscular dystrophy, stroke, head trauma, Lou Gehrig's disease, arthritis, cancer and spinal cord injuries.

Some, who have lost their ability to read, can use a system called MinSpeak (for minimal effort speaking), involving a keyboard with about 30 symbols. For example, pressing the "apple" key means the person is hungry; "glass" means the person is thirsty; and "pillow" means the person is tired.

Combinations also can be used. The "apple" and "clock" keys, when pressed in sequence, may mean circular food, or pizza.

There also is an Eyetyper, for people who can't speak, use their hands or move their heads. With this device, a disabled person looks at any one of 64 keys, with the camera in the computer registering the message on that key. One of the keys, for example, might communicate the following message: "I have an itch. Can you scratch my nose?"

All these devices can help correct one glaring injustice for people with limited communications skills.

"There seems to be a lack of awareness that people (lacking communications skills) still have their favorite tastes in music, food and activities," said Cheryl Rogers, of the Augmentative Communication Center at the Cerebral Palsy Association.

She will be one of the speakers at Thursday's session, along with Jeffery Higginbotham from UB and Barbara Weitzner-Lin from Buffalo State College.

Thursday's meeting will be another step toward creating a network for ideas and services for this population.

The goal is to have other disabled people with communications problems echoing the words of Mrs. Shuell.

"You talk about total independence," she said. "I can't think of more that would make me more independent."

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