To some, the Internet is a good time; to others it’s a time-waster. Some say it promotes isolation, while others point out that it lets them reach out and touch someone on the other side of the world.
Some praise its virtues; others decry its faults.
Say what you will, but to people with ALS, having the World Wide Web at their fingertips (or their toes, eyes or even eyebrows) opens the door to a world that otherwise may have been lost to them.
Web of connection
Rose Kisker of Rochester, N.Y., learned she had ALS in the summer of 2007 just before her 44th birthday. Following the diagnosis, Kisker says she spent a lot of time in bed pondering what her life could have been like and mourning her own death, which led to increasing depression.
“So I changed my attitude, and with that came a newfound hope,” Kisker says. “I had to change my way of thinking — after all, ‘terminal’ is just a word.”
Kisker began to research every aspect of ALS she could and says, “The most powerful tool I’ve found has been the Internet.”
For four to eight hours a day, Kisker surfs the Web for the resources, information and support she can find, and for the wonderful friendships she cultivates through chat sites and forums.
She recalls her mom’s death from ALS in December 1996.
“My parents didn’t have access to the Internet during that time, and I only wish my mom could have experienced that type of support,” she notes, adding that with the increasing difficulty of getting out of the house due to the physical challenges of the disease, “I would be lost without the Internet — it has become part of my life.”
Kisker says there’s “enormous benefit” in “staying connected,” and urges everyone to take advantage of the Internet. In the process, she says, “you may just find you’re enjoying the moment.”
Web of communication
Steve Smith, whose bulbar-onset ALS was diagnosed in June 2001, has lost the ability to talk but not to communicate.
Although like many, he uses the Internet to keep in touch with family and friends, the 56-year-old from Winterville, N.C., points out the value of the Internet in facilitating communication with health professionals involved in the management of his ALS.
Smith spends 10 hours a day online, during which he talks with physicians, nursing staff and other members of his medical team. He describes the Net as a “vital portal” for maximizing doctor-patient interaction.
The ability to talk with physicians and others online, Smith explains, allows him to have a hand in development and management of his medical care, often saving him a trip to the doctor, enabling him to request prescription renewals and providing the conduit through which he can discuss possible new treatments or options with those who can advise him.
The ability of the Internet to reopen the lines of communication ALS closes reduces stress levels, Smith says.
“It gives you a voice again.”
Web of control
For Marie Dunman of Roxboro, N.C., the Internet is a tool for maintaining control over as many aspects of her life as possible.
Marie Dunman with neighbor girls Arissa and Anica Stewart
Dunman, 56, has weakness in her arms and legs. She uses a walker and braces for walking short distances on uncarpeted floors and an electric wheelchair otherwise. She requires assistance with dressing, showering and cooking.
But for two to four hours a day, through the Internet, Dunman researches her disease, prices on hotels, and anything else she’s in need of or that sparks her curiosity. She communicates with family, friends and physicians, pays her bills, and monitors and manages her bank accounts daily.
She shops for clothes, books and medical or assistive equipment, listens to audio excerpts from the Bible, and seeks and enjoys games and other online entertainment.
Dunman says life with ALS and without the Internet would be “boring to the point of depression,” and that it would make her feel “helpless” and “more disabled.”
“It keeps me informed and in touch,” she says, adding she hopes she never has “to do without it.”
Web of contributions
Beth Rookey, 47, of Enfield, Conn., says the Internet is “the gateway” to her world. She gets on the computer at 6:30 a.m., takes a break for lunch, and then finishes up at 5 p.m., Monday through Friday.
Beth Rookey with husband Ralph and son Robert
In addition to communication, Rookey uses the Internet to read her local paper and keep up with local, national and world news. She takes e-classes, sends e-cards to family and friends, checks her son’s school Web site and talks to his teachers, and keeps up with the shows she misses on TV by watching the episodes online.
Rookey also built and manages a Web site for her husband Ralph, a professional photographer. Ralph photographs two football games a week from September through November for their son’s high school football team in addition to a repertoire of wedding, family, sports and nature, and other types of photos. Beth spends her days working on the photographs and posting them to the site for clients to view.
Rookey says the Internet has helped keep her mind active and always learning, and that she’d “be bored to tears without it.”
Most importantly, “It has helped me contribute to life,” she says, “rather than watch it go by.”
Web of wonders
Through its offerings of e-mail, chat groups, forums and instant messaging; through its search engines and online resources; through newsgroups, and interest- or hobby-related professional and amateur Web sites; through online business, banking and retail outlets; and through the endless possibilities it offers for learning from others and making one’s own contribution in return, the Internet offers something for everyone — and most assuredly, with the independence it imparts, a little something extra for anyone dealing with ALS.
How has the Internet helped in your journey with ALS? What sites would you recommend to others? Send responses to firstname.lastname@example.org, and mark “ALS Internet Survey” in the subject line.