Clinic Offers Look At Communication Devices
Last updated Monday, November 17, 2008 4:42 PM CST in Your Family
By Debbie Miller
THE MORNING NEWS
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FAYETTEVILLE — The disease has sapped strength from the denim-clad legs and limited use of the hands that used to grip the reins. It’s also wreaked havoc on Greg Hatfield’s emotions.
“If you told me you had a hangnail, I’d probably cry for three days,” shares the man who found out nine to 10 months ago that he has amyotrophic lateral sclerosis, or ALS.
But like the bronc rider of his younger days, Hatfield hangs on — this time grasping hold of hope.
“I’m not going down without a big fight,” he said with emphasis.
He’s also pragmatic.
Hatfield was one of three patients with neurodegenerative diseases attending an open house Thursday at the University of Arkansas Speech and Hearing Clinic. The purpose of the open house, co-sponsored by the ALS Association-Northwest Arkansas Partner, was to demonstrate alternative and augmentative communication devices that can help people with ALS and other illnesses communicate more effectively. The items demonstrated ranged from the “no-tech” — laminated sheets printed with words or letters and common phrases — to an eye-controlled speech-generating computer.
Barbara Shadden, professor of communication disorders in the College of Education and Health Professions, said the open house provided an opportunity to see what’s available and learn more without having to make a commitment that day.
The opportunity to explore options now appealed to Hatfield, whether he needs the devices in a year and a half or 10 years.
“The time is coming when we’re not going to be able to communicate (orally),” he said.
Before the open house officially began, Hatfield sat beside Dick Summitt for a conversation with journalists and students in the master’s degree communication disorders program. The students helped set up and staff the stations that showed the visitors the different kinds of devices.
Summitt said he wanted to come out and learn firsthand what’s available.
Varied Progression
The experience is different for each patient who has ALS, also known as Lou Gehrig’s Disease. ALS is a motor neuron disease in which the nerve cells that control voluntary muscle movement degenerate and die. The disease — and other conditions such as multiple sclerosis, Parkinson’s disease and stroke — can affect speech and/or language and may cause weakness in the hands and arms that make communicating by writing and typing problematic.
Hatfield bluntly shared that he has been told in the final stages of the disease, he may be lying flat on his back and only able to blink.
One of the devices demonstrated allows communication even when the eye’s function is the only voluntary muscle activity left.
The MyTobii Speech Generating Device on display at one of the stations enables individuals to communicate using only their eyes. There’s an initial calibration with the user sitting in front of the unit and looking at keys or symbols displayed on the screen. Then the communications package allows people to interact through printed words, pictures, speech or voice output — all by just looking at the image of what the person wants to say.
DynaVox, a company that makes a variety of products for communications, displayed several of its offerings as well. A brochure showed pictures of equipment as varied as palm-held units and keyboard-based devices.
Several of the devices demonstrated would allow a patient to record messages now so that later, when he has lost the ability to speak clearly, he can press buttons to play phrases in his own voice.
Shadden and colleague Marilyn McGehee, an instructor in the communication disorders program, said the cost for the items vary. For some of the higher tech pieces on display Thursday, they estimated the expense at $8,000 to $14,000.
Finding Strength
Summitt and Hatfield attend support group meetings organized through the ALS organization. Summitt’s diagnosis is Primary Lateral Sclerosis or PLS, another neurodegenerative disease. The illness has begun to affect his speech, in small ways.
He mentioned having to repeat information for others and not really knowing why the information wasn’t understood the first time, he said.
Hatfield wears cowboy boots, but he said if he had to bend over to tie shoes, he’d be exhausted when finished with the simple task.
“Every day brings a new challenge,” he said.
Summitt spoke of a new difficulty from that day — fastening the buttons on his shirt’s cuffs.
Shadden serves as a facilitator for the ALS support group.
“They share with each other,” she said, adding that’s a helpful way to learn about challenges encountered along the way and possible methods of dealing with them.
The patients came to learn about devices Thursday, but an added bonus was the unofficial meeting with others and the opportunity to draw support.
Linda Buckner, another member of the ALS group, arrived at approximately the time the open house was scheduled to begin and entered the impromptu discussion.
“Each individual in our support group is special and unique in their own way,” she said.
Every patient is unique. The life expectancy of an ALS patient averages about two to five years from the time of diagnosis. About 20 percent live five years or more.
Buckner’s diagnosis was 11 1/2 years ago.
She said she draws strength from her husband, Jim.
“I know he’ll walk the walk with me,” she said. “That gives me comfort for the future.”
It’s also one of the reasons, she said she “can’t quit and give up.”
Buckner came to the open house for reasons similar to those of Summitt and Hatfield.
One opportunity she hoped to explore was checking out devices that allowed her to record essential phrases in her own voice.
Hatfield spoke of how he had been around livestock all of his life and how much he enjoyed the sensory experiences of riding a horse — the scent of the animal, the feel of the wind against his face. He will take an opportunity to enjoy one last ride, he said.
He turned from that imagery to ask if he could offer advice to the others in the room, including the students.
“This can happen to you one day,” he said of ALS.
People should enjoy what they’re doing, he added, and then he advised: “Don’t take anything for granted.”
At A Glance
ALS Association-Northwest Arkansas Partner
Address: 3311 S.W. “I” St., Suite 7, Bentonville 72712
Services: The local partner organization provides a variety of services, including a support group, lending library, equipment loan closet and advocacy.
Phone: 273-7411
Web: www.als-arkansas.org
University of Arkansas Speech and Hearing Clinic
Address: 410 Arkansas Ave., Fayetteville 72701
Services: The University of Arkansas Speech and Hearing Clinic offers evaluation and treatment of communication disorders for children and adults.
Phone: 575-4509
Web: http://cdis.uark.edu/1229.htm
Source: Staff Report
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