Carlin still searching for cure Section: Sports Earl Vaughan Jr. By Earl Vaughan Jr. Scholastic sports editor Steve Carlin sits in his high-tech wheelchair, more sophisticated than the seat Capt. Kirk occupied on the Starship Enterprise. His arms and legs are almost useless because of the advance of Lou Gehrig's disease. Carlin points a tiny reflective dot on his glasses that directs an infrared beam to send commands to his laptop computer. With the help of Cybership Carlin, he gets out the message of his fight against the disease that robbed him of a successful career designing displays for shows and museums. Sitting not far away in his Fayetteville dining room is his wife, Mary Ann. When Steve speaks, using his own voice, she is one of the few who can still understand his mumbled words and translate them for visitors. As she looks at her husband, she recalls something a friend told her a year ago. ''You didn't sign up for this,'' the friend said. ''Actually I did,” Mary Ann says. “I just didn't know what I was signing up for.'' She left her job as a travel agent to devote full-time to raising 5-year-old daughter Ariel and working with friends, family and health professionals to cope with Steve's progressing ailment. ''I've had other people say to me, 'I don't know how you do what you do. I admire you so. You're so strong,''' Mary Ann said. ''It's not always something I want to do, but when you're called upon, you rise to that need. It does put you in situations that are not always pleasant.'' It's something Steve appreciates, and is one reason he checked himself into a local nursing home for four days last year to give Mary Ann a brief vacation. ''His roommate died the first night he was there,'' Mary Ann said. ''It was a little unsettling.'' But there were some light moments. ''There was this one old gal who was a little touched and she thought he was cute,'' Mary Ann said. ''All the nurses thought he was too, so he got a lot of attention. He's quite the jokester.'' The demands of time, money and equipment to care for Carlin are not a joke. Mary Ann relies on a number of sources for help. A home health nurse works 20 hours a week Monday through Friday. Mary Ann's mother and brother also stop by frequently to help with everything from taking care of Ariel to routine household tasks. Mary Ann and Steve visit the ALS clinic at Wake Forest University's Baptist Hospital every three months. In addition to a variety of therapy and medications, they've gotten a lot of equipment on loan to help make life easier. The equipment includes a shower wheelchair, an over-sized computer mouse that can be controlled with the foot and various transfer devices that aid in moving Carlin from bed to wheelchair to recliner. ''Our insurance is good and paid for his wheelchair,'' Mary Ann said. ''They help you with whatever they can. Whatever they have in the loaner closet you can borrow.'' Getting out and about Carlin is still able to travel in his specially-equipped van, but the progress of the disease has made longer trips more difficult for him. He does get out for visits to Cameo's Hair Gallery, where his stylist, Jennifer Thompson, tries to give him creative looks for the season. ''She gave him a pumpkin head at Halloween,'' Mary Ann said. ''During the summer we had him beach boy blonde.'' When he we getting ready for a forthcoming mailing for his ALS fund drive, he insisted on going to an office supply store. Ariel went along and rode in the wheelchair with her father. On such occasions, Mary Ann said, Steve draws looks from people. ''I'm sure they must be thinking he must be very young to be in a wheelchair,'' she said. ''They never ask us, 'What's the problem?' Most of them to look at him wouldn't know he's terminal.'' Carlin doesn't act like someone who's terminal, either. Mary Ann credits him for keeping her positive. ''I do get depressed,'' she said. ''There are times when I just want to say, 'I'm leaving now and I'll be back in a couple of days.' But that is just a fantasy for the most part. I get past it and get back to what I need to do.'' What she's doing a lot of now is helping Carlin prepare for his annual mailing to seek donations for research into the cause and cure for ALS. One person Carlin's fund has supported is Dr. Jeffrey Rothstein. Rothstein is a professor of neurology and neuroscience at Johns Hopkins and is considered one of the leading experts in ALS. Rothstein said the disease strikes every patient in different ways. For some, it starts in the muscles of the hand. Others experience a slurring of speech first. But regardless of the start, the final phase of the disease is the same. ''They're unable to use all their muscles,'' he said. In Carlin's case, problems began with slurring of speech and problems chewing and swallowing. From there, it progressed to his arms and legs. Eventually, it attacks the muscles that control breathing. ''You lose all muscle movement in time,'' Rothstein said. ''If you don't breathe, you don't live.'' Many studies have been done on the disease, but Rothstein said neither a cause nor cure has been discovered. ''Men and women in the Gulf War had a higher risk of ALS but the study doesn't say why,'' he said. ''We've tried to isolate the events that lead to the disease. That's what we have to spend research on. ''We spend an enormous amount of time to find a drug to slow it down. No drug can reverse the disease. By the time you have it and have weakened limbs, cells in the spinal cord and brain have died.'' Rothstein said the only way to bring those cells back is through stem-cell research. ''That's a target for lab research but nothing for the clinic,'' he said. Some patients gamble by taking drugs in clinical trials. ''It's a risk,'' Rothstein said. The drugs could either help, do nothing, or in some cases speed the progress of the disease. Searching for a cure Rothstein said that's what frustrates many people in the search for a cure . ''We're used to McDonald's,'' he said. ''We go in and 30 seconds later you have a hamburger. ''We think medicine can come up with answers fast. Every time we run a trial and get a failure, we get frustrated. We want more. There's lot of research providing new ideas, but we want a new outcome.'' The key to a cure, Rothstein said, is more money for more research. ''You can't do the research without funds ... and you can't do it without people who aren't committed to carrying out research,'' he said. ''We want people who bring experience to bear, find out why this disease occurs and develop better therapeutics.'' While there is no cure yet, Mary Ann said working to raise money to find one has been therapeutic for both her and Carlin. ''We've been somewhat of a resource for other people,'' she said. ''There is not an ALS support group in this area, but we've sort of put one together. We try to share what we know and give them a heads up on what to expect.'' Carlin's local physician is Dr. George Pantelakos. Pantelakos and Carlin were teammates in high school, both playing football for Terry Sanford. ''He and his wife are real heroes,'' Pantelakos said. ''With all the technology and research we have, not a lot has changed with treatment. ''That's the most difficult thing. We hope we can get some breakthroughs in the next five or 10 years.'' If a breakthrough is found, Pantelakos thinks Mary Ann and Steve will have played a role in it. ''They've stayed on top of the current research,'' he said. ''They are both awfully strong people.'' What is AlS? Following is a look at what is Amyotrophic Lateral Sclerosis or ALS: Often referred to as Lou Gehrig's disease, after the Hall of Fame baseball player who is one of its most famous victims. A neurological disorder with no known cause or cure. It progressively paralyzes its victims as motor neurons in the brain and spinal cord die. Once motor neurons die they can no longer send impluses to the muscles. Because the muscles are no longer stimulated, they begin to waste away, causing ever-increasing muscle weakness. The disease does not impair intellect, the senses of taste, smell and touch, vision and hearing, nor bladder, bowel or sexual functions. Early symptoms include slurred speech, difficulty in projecting the voice or twitching and cramping of muscles. As the disease progresses, symptoms include impaired use of hands, arms, legs and feet, weight loss, weakness and fatigue. In later stages, ALS patients experience paralysis, and difficulty breathing and swallowing. Death usually results from respiratory failure in 3 to 5 years from diagnosis. Photo: Mary Ann Carlin All archives are stored on a library system from NewsBank Media Services.