TALKING WITH TECHNOLOGY The widening world of augmentative, alternative communication

Occupational therapist Valerie Pingle (left) and MDA client Pati Milewski work with speech-generating devices at a January meeting of the Olympia, Wash., MDA ALS support group. Photos by Craig Cudnohufsky

Dean Adraktas is more than used to speaking his mind.

In fact, Adraktas voice was his bread and butter for over a decade while he worked in radio news and as a radio news talk show host.

But all of that came to a standstill for the 37-year-old from Fair Oaks, Calif., when his speech began to slur as a result of ALS (amyotrophic lateral sclerosis, or Lou Gehrigs disease).

Now, Adraktas speech is affected to the point that only his wife, Katherine, and a few others close to him can clearly understand what hes saying. Even the most basic communication can take a long time and is increasingly frustrating for Adraktas, who received a diagnosis of ALS in 1999.

Dean and Katherine Adraktas before his ALS had advanced.

But in late December, waiting for a brand new communication device a CA35 from Gus Communications to arrive, Adraktas was focused on making the most of the high-tech speech-generating machine.

"One thing I havent done that I would like to do is talk to my neighbors. I used to talk to them all the time, and I havent in over a year now. And on the phone I havent talked on the phone in quite a while," Adraktas said.

Adraktas communication needs arent unusual for people with certain types of neuromuscular diseases. Fortunately, technology has many solutions for people of any age whose ability to speak becomes limited or even disappears altogether.

Enter the World of AAC

Augmentative, alternative communication (AAC) is a term that can apply to anything that helps you communicate without speaking ranging from simple hand gestures to high-tech, computerized systems that read brain waves or subtle eye movements.

A growing number of devices designed for communication are available to consumers today. In 2002, MDA established a policy to pay up to $2,000 for the one-time purchase of such a device by anyone registered with MDA whose doctor prescribes the device.

The policy follows Medicares 2001 decision to cover equipment that generates speech, and some private insurers also cover AAC devices. For example, Medicare paid 80 percent of the cost of Adraktas machine, which starts at about $5,775, and MDA paid the rest.

Thats all good news for people with progressive neuromuscular diseases that may affect speech, such as ALS, Friedreichs ataxia, myotonic muscular dystrophy and certain myopathies.

Most AAC devices follow the same basic idea: Users input information about what they want to say, and the machine "speaks" it for them. Some devices generate speech via computerized voices, while others have digital display readouts, or both.

AAC devices come in many forms: hand-held devices; laptop-like devices; compact, portable machines; or "tablet" machines with touch screens instead of keyboards. Another option is software that can transform a personal computer into a speaking device.

In addition to a variety of machines and software, theres a growing number of accessories for AAC. Add-ons like switches, head mice or adaptable computer mice can help a person continue to use a speech-generating system even as physical abilities diminish.

Machines can even be wheelchair-mounted, allowing the user to get out and about and still be able to communicate.

Newer systems include effort- or keystroke-saving features such as "word prediction" or other features in which the system guesses what word the user is typing. Some can even be programmed to learn words or phrases the user enters most frequently.

It All Adds Up to Quality of Life

To many people served by MDA, the addition of an AAC device in the family has meant an easing of frustrations and a dramatic increase in quality of life.

For Harry and Tessa Aldrich, a text-to-speech machine called a LightWRITER has meant the Tacoma, Wash., couple can again communicate, despite Harrys ALS.

"I can converse with anybody," said Harry Aldrich, whos been using the device for three years. Aldrich, 75, retired in 1985 after 30 years with the Tacoma Fire Department.

"It has been absolutely essential. Weve developed hand signals and things, but lots of times I dont get it," Tessa Aldrich said.

The Aldriches use of the Light-WRITER grew gradually, she said, at about the same rate that Harrys speech was affected by the disease. "If I couldnt understand something he was saying, Id hand him the machine. We gradually became more dependent on it."

Aldrich, who uses a walker and sometimes a manual wheelchair or motorized scooter, enters what he wants to say by typing on the machines keyboard with one finger at a time.

In addition to singing at churches, temples, funeral homes and in musicals, Aldrichs main hobby was singing in a barbershop quartet. Although he can no longer sing with his group, he can still keep in touch with them.

Harry and Tessa Aldrich appeared on the local broadcast of the 2002 Jerry Lewis MDA Telethon and Harry spoke to the audience via his LightWRITER.

"When his barbershop friends come to visit, they can sit here and have a normal conversation," Tessa Aldrich said.

Plus, the couple has found they can easily take the device on the road, and plan to continue traveling whenever possible. They especially enjoy taking trips to Las Vegas and Reno, Nev., and are planning an anniversary cruise this spring.

Airport security personnel treat the device just as they would a laptop computer, and the couple has never had any problems because of it as long as they remember the battery charger, Harry added.

"We just pack all of our stuff and off we go for the next adventure," Tessa said.

No More Pencils and Paper

For Jim Parton, who has nemaline myopathy, using a communication device means no more scribbling out his thoughts on paper.

Parton, who lives in Indianapolis and also uses a LightWRITER, even gave a 2-minute demo of how he speaks with his device on the local broadcast of the Jerry Lewis MDA Telethon last year.

His appearance really made the phones ring. One caller pledged $500 intended for a communication device, said Parton, who has used the LightWRITER for nearly a year.

With a headset and adapter, Jim Parton can speak on the telephone with his LightWRITER.

Parton, 69, uses a power wheelchair and a ventilator, and has many family members who are also affected by nemaline myopathy. Hes retired from a career in the heating and air conditioning service and installation business.

Partons wife, Linda, said the communication device makes ordinary conversation much easier and faster. She said her husband really does quite well with the device, considering that most of the time he types with just one finger.

Parton has his device programmed so that he takes advantage of word-prediction and scanning features to speed up the input process.

When starting a conversation or telephone call with someone new, he or Linda explains that Jim will enter the words he wants to say, the computer will speak them, and when he says the word "period" hes finished.

"It just takes a time or two to get used to it, but once you do, its great. He even tells jokes on this thing and everything," Linda Parton said. "Whenever we go to the doctors, they want to know what the new joke is."

With a customized wheelchair mount, Parton is able to take his speech device just about anywhere. That gives him the freedom to stay involved in several community activities, such as serving on the board of directors at his church and volunteering in the recreational therapy department of a community hospital.

Parton also makes use of special sounds for signals on his machine. He uses a doorbell-like "ding-dong" to signal family members, and a whistle to call his dogs and they actually respond, Linda Parton said with a laugh.

The dogs, however, "dont seem to realize when I am talking to them," Parton said.

The Ultimate in Reassurance

Pati Milewski looks at her life as a journey, and her future as one “with ALS in it.”

Its with a similar strength and positive attitude that Milewski regards her LightWRITER; to her it represents reassurance.

"I will always be able to express what I am thinking. I will always have a way to say no or yes. I will always have a way to say I require assistance or I need help," said Milewski, 47, who lives in Olympia, Wash.

But best of all, she said, is the "elimination of fear of losing my speech with no alternative way to say what I want and remain in control of my life."

Pati Milewski

A former computer programmer and reserve police officer, Milewski is still able to speak clearly most of the time, but it becomes difficult to understand her when shes overly tired, she said.

Milewski said MDA staff has been very "proactive" about encouraging people with ALS to get devices before their natural abilities are gone. Thats important because it gives them time to introduce the items to family, friends and caregivers, she said.

"When you can still speak and explain why you have any assistive device and how it works and why you need it, people are more likely to be comfortable with you and the accommodation right away."

Another plus of the LightWRITER is that it features a two-way digital readout and a "silent mode," enabling a private conversation in which both people see their own readout windows.

Milewski also makes use of a text-to-speech program called ReadPlease that makes her personal computer speak what she types. A simple version of the program is available on the Internet for free at www.readplease.com.

Etiquette and Patience

While the rapidly progressing technology of AAC devices is nothing short of amazing, there are still some nuances and etiquette issues that users must deal with.

Problems can arise because conversing with someone who uses a device is often considerably slower than a regular conversation.

The simple solution, users say, is patience.

Parton likens the process to using a two-way radio, on which only one person can and should speak at a time.

"The main thing: Just wait for me to finish. I dont mind people guessing what Im trying to say, but a lot of people start to talk before I get done," Parton said.

Parton said he wants time for typing and listening, because "I dont have volume and expression. I think I miss that most of all, and saying I love you to my wife."

Milewski added that its equally frustrating when a person tries to read what shes typing over her shoulder.

"Please wait for me to type and say my reply," Milewski said. "Do not read over my shoulder until you know the question I am typing, and [then] cut me off with a reply. I am not on a game show."

The Aldriches said they havent encountered any difficulty with friends since using the system.

Some popular AAC devices for people with neuromuscular diseases include (clockwise from left) Enkidu Research's Palmtop Portable Impact, DynaVox's DynaMyte and the LightWRITER by Zygo Industries.

That includes members of MDAs Olympia ALS support group, to which Milewski and the Aldriches belong. Several group members use communication devices during meetings.

"When Harry types something, they know hes getting ready to talk, and they wait to hear what hes going to say," Tessa Aldrich said.

Milewski said the group often experiences a "patient, waiting silence" while one person types out whats on his or her mind. As nice as that sounds, it can still create some awkward moments.

"If you wave them [other group members] on and type your comment as they move along, by the time you get your thought typed in and press GO, your comment seems out of context," she said.

Its a common situation that works itself out in the support group meetings because people are especially empathetic. But it "doesnt work well in the real world for all the obvious reasons," she said.

Regardless, most users agree that the benefits greatly outweigh the challenges that AAC presents.

In fact, Dean Adraktas, who will use a head mouse to operate his device, is especially looking forward to being able once again to say exactly what he wants to say.

"Right now theres a real disparity between people understanding me. For example, my wife and my sister understand me well. People from a foreign country, like my father (a native Greek speaker), and the man who helps me at home, who is from Fiji, have a lot harder time comprehending what Im trying to say.

"This device will also allow me to use words that I would not dare use otherwise," Adraktas said.