A Window on Recovery or Computer Becomes Family Friend*
by Peter Marsh
THRIVEnet Story of the Month - April 2000
"He's never going to leave, he's going to need institutional care for the rest of his life." Jayne Quigley remembers exactly what the doctor told her after her husband's second stroke--and her reaction. "That made me so mad. I told him that's not what I need to hear: that my husband is going to live out his life in an institution." Norm had made an amazing recovery from his first stroke in 1988, and along the way Jayne had learned her most important lesson--to never give up hope.
"After that first stroke he didn't get any therapy for over a year," she recalled, remembering how difficult it was the first time around, "but he still regained the ability to drive." Norm actually went back to work for a short time, until his 60th birthday, then retired and was able to continue with other interests like cooking, photography and walking. The Quigleys had enjoyed eight, satisfying years since then. Jayne had continued to work as the secretary at a holistic health clinic and they had recently returned from a memorable visit to Israel with their church.
However, this second bleed was "the size of a quarter," she was informed, and immediate surgery was needed to relieve the pressure. Norm had fallen at home, severely bruised his face, and might have laid there all day if a friend had not been staying with them. Jayne had faith that he had survived for a reason, and simply refused to give up. "I was so busy running between my clinic, the hospital and home, but I knew I had to be the strong one. The therapists at Providence began working with Norm as soon as possible and he regained some speech within a week. Slowly, things began to work out. I even managed to lose some weight, which makes life much easier for me." Despite her full-time role as caregiver, Jayne looks younger than her 61 years and seems to have the energy of someone half her age.
Norm Quigley was glad to be home after two weeks, just before Christmas. But he had now lost his short-term memory and suffered significant deficits on his right side. Once again, at the age of 68, he had to call on an inner strength to overcome this crisis. As a systems analyst and manager for the Bonneville Power Administration from 1961 to 1988, Norm had seen the computer come of age, but he had no idea that their PC would become an essential part of his recovery.
Terri Nichols, one of Norm's speech therapists at Providence, had offered him a free, trial copy of a new, home-therapy program designed by her husband Clay, a software engineer. They had recently completed work on the first installment of the Aphasia Tutor series, which enables survivors to do word recognition and recall exercises on a home computer. Ironically, although Norm had spent his career in computing, the Windows operating system was entirely new to him.
Jayne had already learned to use a PC to e-mail news to friends and relatives and connect with a stroke support group, so it was up to her to install and run the program first. "Actually, the program really installs itself," she admitted. "It made such a difference to us to have something this useful right here in the house. There's always a temptation to pass the time with television, but this program was a real benefit to Norm."
A couple of years passed, with Norm progressing slowly, until they happened to see a feature on the TV news about Terri, Clay and their business, Bungalow Software. Jayne was one several people--caregivers and therapists--who called them that evening. She learned that Clay had spent the past two years creating a complete range of therapy programs which she could try without charge. At their internet website, she was able to download the demonstration version of "Sights and Sounds" onto her PC.
"The first time we ran it, I was amazed at how much our old computer could do. I didn't even know it had its own microphone! It was just what Norm needed to give him some new goals," she explained. "I remember the first time he heard the computer applaud his efforts he lit up like a Christmas tree. Now he can easily spend an hour working on his own," she continued. "And I can always tell when he has been using the Sights and Sounds because his diction really improves.
"Jayne also does her own "therapy" on the internet--by staying in touch with caregiver and prayer groups, and sharing with Norm the stream of jokes that friends circulate. She proved she was right to ignore that first medical opinion--now she takes responsibility for his diet, making sure he gets all the necessary vitamins and minerals to keep his strength up.
Sitting in their living room, surrounded by pictures of their children and grandchildren, this inspiring couple continue to count their blessings. As Jayne puts it: "We have so much to be grateful for--first the surgeons and therapists, and now the computer as well."
Using a PC for Speech and Language Therapy
Speech and language therapy software has become an important tool in recovery, and is especially valuable for those whose insurance coverage has ended. It uses many of the same techniques that have been proven effective by speech-language pathologists. Computer-based rehab that is controlled by the survivor is highly flexible, eliminates peer pressure and the fear of failure. It is more acceptable to mature adults than workbooks, which often feel like "child's play."
The Aphasia Tutor series by Bungalow Software, for example, provides five separate programs requiring increasing skills: letters and words, phrases and sentences, paragraphs and stories and functional reading. A survivor can operate the program alone using just one or two keys on a standard personal computer running Windows 3.1 or better.
Sights 'n Sounds, Bungalow's newest product, uses digitized speech to reproduce a human voice, then plays back the survivor's spoken response for comparison. You can obtain free demonstration copies of the software, information on speech therapy technology and a listing of online stroke resources at http://www.bungalowsoftware.com/sc
Or, call Bungalow Software at (503) 648-0518.
* Published in the Stroke Connection, Aug/Sept of 1999
© 1998 Peter Marsh
This article may be reprinted in its entirety if the citation (above) is included.