A 50-year-old with DMD escapes his nursing home via the Internet, thanks to a friend with SMA
|Dale Dulaney travels the World Wide Web via a mouth-controlled computer obtained by his friend Karen Wheeler, who also has a neuromuscular disease.|
For over two decades, Dale Dulaney lived in virtual isolation from the outside world. Dulaney, 50, has Duchenne muscular dystrophy (DMD) and is vent-dependent with almost no movement except for his facial muscles. He has spent the last 21 years in a nursing home in Las Vegas, Nev., and has been confined to his bed for the last 15 years.
Without access to a computer and Internet technology, Dulaney watched television or listened to CDs and books on tape. He relied on nurses to do everything for him.
Then artist Karen Wheeler, who’s also affected by a progressive neuromuscular disease, spinal muscular atrophy, learned about Dulaney’s situation. Wheeler, who lives in Henderson, Nev., visited Dulaney in the nursing home, and the two became fast friends.
Friends helping friends
Wheeler was amazed that Dulaney had lived so long with DMD, and she was determined to help him become more independent and less cut off from the world. She was convinced getting him on the Internet was the answer.
|Dulaney's nursing home room|
“He’s a very bright man, and I just thought that if I could get him a computer that he could use and have a little bit of independence, that at least he could tolerate his situation better,” Wheeler explained.
“I couldn’t even imagine being stuck in bed 24/7, and I couldn’t even begin to understand how he could still be sane.”
Wheeler’s goal became to “bring the world to Dale” and get him online before his 50th birthday.
After some research, Wheeler and a friend determined that the Jouse2 joystick-operated USB mouse, which is controlled with the mouth, would meet Dulaney’s needs.
She quickly organized an art auction fundraiser called “Bringing the World to Dale,” featuring donated artwork from herself and local artists. A local family donated a slightly used laptop, and a grant was obtained to help cover the cost of the Jouse2 ($1,495).
The funds raised through the auction ($1,500) were used to pay for Dulaney’s Internet service and other computer-related expenses.
Wheeler delivered the laptop and Jouse2 to Dulaney in May, well ahead of his 50th birthday on August 21.
Exploring a new world
Dulaney had never used a computer before receiving the system, and he admits that it was a bit overwhelming at first. It took him about two or three months to learn how to use everything and to master all the online features. But practice makes perfect, and Dulaney now is online about 10 hours a day.
While his system may look complicated to the average person, Dulaney says it isn’t difficult to use, and it doesn’t take much breath to activate the sip-and-puff switches for mouse clicks. He moves the cursor by using his mouth to move the tube that’s attached to the joystick, sips for a right click and blows for a left click. He uses the same method for surfing the Internet and selecting letters on the onscreen keyboard to type e-mails.
“The Jouse2 is great because it doesn’t take very much movement at all. I can barely blow or sip and it works,” Dulaney said. “I’ve got everything down now, and I can go through it pretty fast.
“I’m able to keep my mind busy, and I can focus on other things besides living in a nursing home,” he said. “I’ve had to depend on nurses to do everything for me, but with the Jouse, I can work it with my mouth. I’m able to read the newspaper by myself, I listen to CDs and watch DVDs, and I can look up all kinds of articles in the paper. I’d never been able to do all of that by myself.”
|It took a little while to learn, but Dulaney now is a whiz at navigating the Internet.|
Dulaney spends his time online sending and responding to e-mails from family and friends; reading the local and national newspapers; reading the Bible; following the UNLV men’s basketball team; researching antique cars; playing games; doing crossword and jigsaw puzzles; and listening to the radio.
He also enjoys visiting the National Geographic and Discovery Channel Web sites. He corresponds weekly with the UNLV’s men’s head basketball coach to get updates on the team and recaps on all the games.
One of his favorite hobbies is logging on to Google Earth, the online mapping program that offers detailed directions and satellite images for local and regional locations.
“I’ve been able to go all over Las Vegas, and with the street view, I can see all of the new buildings and hotels. I haven’t been able to see them since I’ve been in here,” Dulaney said. “It’s a really neat Web site, and it’s opened up so much for me.
Since he’s online for long periods of time each day, Dulaney takes hourly breaks to avoid becoming fatigued.
“Before, I would just have to lie here, but now I’ve got something to keep myself busy,” he said. “Technology will greatly improve your life, especially when you don’t have to depend on anyone else.”
His friend Karen Wheeler is happy too.
“I knew it would change his life,” she said. “He is so happy, and he has a different life now. We laugh at how he doesn’t get any sleep because he’s on the Internet all night. Technology really has opened the world so much for him, and it’s given him a huge escape.”
To view Karen Wheeler’s art and learn more about her, visit her Web site, www.karenwheeler.com.