In 1990 I read, in the fall issue of the MDA NEWSMAGAZINE, a story about a man, Keith Gossett, who had ALS/MND. At that time, I was about 4 years into my ALS/MND and Keith was about 13 years into his. The story inspired me to call Keith, in Tucson, Arizona. We hit it off immediately and a friendship was quickly formed which exists to this day. Keith and I see some, but not all, self-healing methods, eye to eye. But, in spite of any self-healing differences, we both possess the same will to survive.  
     Early in our friendship we called each other often, about 2 or 3 times a week but, under some circumstances, 2 or 3 times a day. We enjoyed each other's sense of humor and generally had a good time talking about new books on self-healing or some new supplement to try. We both had a zany sense of humor which afforded us very enjoyable times. Keith had a delightful ornery streak, too. Once Keith highly recommended "miso" to me, a Japanese sticky, brown soy product that can be made into sauces, soups and other dishes. Without being aware of its cathartic properties, (Keith was very aware) I made a big batch of soup with the miso I had bought at the health food store. After having it for supper I spent that evening, and part of the night, on the toilet. I didn't talk to Keith about his setting me up for this, but wrote a letter, explaining my reaction to miso, and writing that, while sitting on the toilet, I could just see the caption in the newspaper:

When Keith got the letter he called and we both cracked up over all the ramifications to this. And, Keith admitted that, he too, suffered the same reaction. On another occasion, Keith and I were discussing the fine line between the feminine and masculine aspects in a person. We agreed that there was a very delicate balance between the two. After we hung up, Keith had his daughter call back immediately. She said, "Bill,  this is Keith. I just sneezed."
    In January or February of 1994 Keith's wife, Katie, called and asked if it would be all right if Keith flew up for a visit. She and their son and daughter  wanted to treat Keith by buying tickets to fly up for a vacation. I was excited at the prospect and answered, "Of course."
    Keith flew to St. Louis where his son, by his first marriage, and his sons wife and child lived in a suburb. Keith stayed with them for a while before they drove him to my house. We had a  few hours in which to get aquatinted before Keith Jr. had to drive home with his family.
    Keith stayed a week during which we celebrated his 57th birthday with a cake I ordered and ice cream. We had a good time but it all ended too soon. Keith's son drove up to take him back to St. Louis for a brief stay before Keith flew home to Tucson.
    Keith is a shining example of what belief in a method of healing can do for the body. He is a walking, talking placebo effect. Keith is thoroughly and unshakably convinced that his regimen of exercise, diet, supplements and meditation works for him and ,of course, it does. It is his profound faith in himself and belief in his healing methods that have given him, to date,  22 years of life with his ALS/MND.
    My life is infinitely richer for knowing Keith. He has shown me what faith in oneself and belief can do to enhance one's life and cope with ALS/MND. I'm grateful for and feel blessed with Keith's friendship. The following is the story that lead me to a magnificent friendship.

KEITH GOSSETT FINDS HIS OWN ROAD
TO COPING WITH ALS,
AND TRIES TO LEAD OTHERS THERE
KEITH'S WAY

One day many years ago, Keith Gossett had a heart attack. He was young to have had a heart attack --- only thirty- nine, and he began what he expected to be a steady recovery. Six months later, despite an  extensive rehabilitation program, he had made almost no progress. He was having trouble walking, trouble controlling his hands, trouble keeping his balance. He had little strength or stamina and was experiencing twitching in his muscles and cramping in his legs.
    Keith was living in Fort Lauderdale then. "My doctor couldn't explain why I wasn't getting any better, so he scheduled me for tests.  He hooked some electrodes up  to, me and stuck some needles into me and then sent currents running through me. After calling the Mayo Clinic to consult, he looked me in the eye and told me I had ALS and I had 3 to 5 years to live."
    This is not a story of the devastation of ALS --- amyotrophic lateral sclerosis, a progressive disorder that attacks and destroys the nerve culls controlling muscle movement --- causes its victims and their loved ones. It's not about the inevitable depression, confusion, and anger one feels when one has been given this diagnosis. This is the story of a man, ordinary by his own standards, who discovers a wealth of inner resources he never imagined her possessed.
    His doctor's words hit Gossett like a hammer. "I was spinning and spinning when I walked out of there. I could have smashed windows and broken chairs. That was how I felt."
    A few months later Gossett sold his home, and with his wife and two children moved to Colorado, where his wife had friends. Doctors in Denver ran more tests and confirmed the diagnosis.
    Gossett found that the cost of living in Denver stretched him beyond his means, so he and his family moved again --- this time to Tucson, Arizona, where he had two other children from his first marriage. "The kids thought I had only couple of years to live, and they wanted to be with me.. And then after I'd bought a house, they left town when their stepfather got transferred. And there I was in Tucson."
    And Tucson  is where he stayed. Today, more than thirteen years after hearing his doctor's fateful words, Keith Gossett is alive and fairly well, following a daily self-help exercise  and meditation regimen that would exhaust or frustrate plenty of people in the best of health. And running a biweekly support group to help other ALS patients who are on the same ride.
    But it was a long and  bumpy road that brought him here. People who've known him over the ears can testify to some very dramatic changes in the metamorphosis of Keith Gossett.
    Marsha Drozdoff, a clinical social worker at the University of Arizona Medical Center, remembers her first encounter with Gossett. "About eight years ago he came to see me. He had been referred --- it certainly wasn't his idea --- because he was terribly depressed. He was having trouble breathing and performing other functional activities at home. That was the worst session I've ever had with a patient in all my years of counseling. Halfway through, Keith said he didn't want any more counseling, he didn't  want any more to do with it, and he stormed out."
    Drozdoff kept her wits and scheduled Keith for another session. Soon he was a regular patient of hers.
Those first months of counseling, Gossett talked a lot, she recalled, about being in an emotional "bubble" that he couldn't break through. He was often in despair and his image of the future was bleak. The problems he had breathing and swallowing made it difficult to sleep. His legs were very unsteady, he had trouble enunciating.
    The symptoms were particularly frustrating because Gossett had always been physically active. Growing up in Miami Beach, he swam a lot and played sports. As a young man he was a frogman in the Marine Corps. Later he had his own automotive repair business. Even after the move to Tucson, until his stamina and mobility began to wane, Gossett was an active soccer and Little League baseball coach.
    Despite Drozdoff's help and concern, Gossett did not immediately respond. "I saw her every two weeks," he says, "but then after our session I'd go home and get in bed and fall back into this deep depression. She called me every Thursday and let the phone ring off the hook. That was how she got me out of bed: I had to answer the phone before it drove me crazy."
    About four years ago, Gossett initiated another relationship that would make a big difference in his life. Bob Wallace was a physical therapist at the SPORTE Medical Center in Tucson. Gossett had been to see Wallace three years earlier, when he was having problems recovering from a shoulder fracture.
    This time Gossett decided to see if physical therapy could help him in a more general way. "Bob worked with every joint in my body, from head to toe. It felt great to get massaged. I started to get out more, do some walking. I still see Bob every two or three weeks to get worked on...a little 'TLC.'"
    It was about two years ago, Gossett recalls, when all the counseling and support and the material he had been reading finally "registered." It was then he devised his own  self-help program, a routine incorporating breathing exercises (intended to strengthen the lungs), self-massage (designed to relax and to strengthen other specific parts of the body), sensible nutrition, and a good dose of Eastern philosophy. (See "A Few of Keith's Routines")
    "Marsha and Bob, the doctors and all the other medical people, the folks at MDA --- so many people had done so much for me. MDA did for me whatever was in its power. The fact that so many were doing so much helped convince me that they believed in me. That helped me believe in myself."
    "The Chinese figured out thousands of years ago that you can't separate mind and body.", Gossett says. "Norman Cousins and others have been preaching the same thing: the way your body deals with disease has a lot to do with your mental attitude. I deal with ALS by putting it far away from my mind. ALS has nothing to do with what I am. I visualize my body as strong and healthy, and the visualization helps me feel that way."
    "I have my daily routine all,  scheduled out, from 6:30 in the morning to 9:30 at night. Everything's on a routine --- the exercises, the self massage, when I eat and what I eat, when I meditate, when I rest. I explained it once to a guy who was interested, and he just hook his head at me and said, 'that all sounds too complicated.' But if one change, one procedure can help you, why wouldn't you want to do it?"
    Dr. Lawrence Stern, MDA director of research and also director of MDA's Muncio F. Delgado Clinic for Neuro-muscular Disorders at the University of Arizona Health Sciences Center, has been seeing Gossett since 1979. Stern champions his positive attitude wholeheartedly.
    "There unfortunately is no treatment that can affect the rate of progression of ALS in a patient. But there's a lot science doesn't know about the disease. Maybe Keith has touched on one of the factors involved."
    "The rate of progression is different in every patient," Stern says. "In Keith it's been very  slow. Unusually slow. At first we weren't sure we were dealing with ALS because of its slow progression. But Keith's condition conforms to everything we know about the disease and there isn't any real doubt about it now."
    It was Stern who first suggested that Gossett might be able to do other ALS patients some good, and arranged for a series of support group sessions --- actually an offshoot of the regular MDA ALS support group --- under Gossett's tutelage, in a abasement room at the University Medical Center.
    "His attitude is bound to infect some of the others," Stern says. "And he's a tremendous example of how hard work can make a difference. He works extremely hard."
    Gossett's marine training surfaces just a trace in the biweekly sessions. He paces like a drill sergeant with a touch of rheumatism, coaches and coaxes his troops through their exercises. Each session is attended by MDA Patient Coordinator Michelle Girard and physical therapist Carol Stumpf, as well as a group of ALS patients and their spouses.
    "You're my star," he tells one woman as the group goes through self-massage and breathing exercises. "Thirty or forty times No cheating." he admonishes. "Now we're coming to the good part." And finally, "We're almost home. Keep it up."
    There is another ex-marine in the group this evening. "A fellow jarhead," Gossett tells the others, and then he turns conspiratorially to the man. "What they didn't tell us in basic training was that smiling once in a while did you a lot more good than two hundred sit-ups," he chuckles.
    "Keith is pretty amazing," Drozdorff says. "He's always asking, 'what can I do to make myself more independent'. He had trouble holding a cup, so he devised a contraption for his hands that made it easier. He invented some other gadget for his shoes that increased his mobility, and a special bike seat. If there's an obstacle, he's always looking for a way over it."
    Earlier this year, after falling a couple of times, Gossett had to borrow walker to get around. "And then I was lying in bed one night, thinking about how a tightrope walker has to practice and practice before he gets it right," he explains. "I envisioned myself practicing walking with a harness cable. I sketched it out and got a neighbor to help rig it up on the back porch. It helped me get my balance back. I don't need the walker anymore, and I don't worry about falling down."
    "Physically, I'd have to say that Keith hasn't changed much since I've been working with him," Wallace says. "He's maintained a good degree of mobility, he's increased his muscle strength in areas not affected by the disease." "But," Wallace adds, "the deterioration isn't something you can reverse or even arrest."
    "Where the real change has been is in Keith's emotional outlook, and I think it has to do with his altruism as much as his personal approach to health. He's extended outside himself. He doesn't focus on his own problems as much, and that's helped him immensely."
    Gossett is openly proud of his accomplishments, and of the fact that he's lived with ALS for so long. At the same time, he has no delusions about the medical prognosis.
    "I'm not cured. I would never say that I'm cured. But I've built myself up in those areas that aren't affected by the disease, and my outlook is positive. My life is better now than it was a few years ago. I think that's the bottom line, and that's what I want other patients to understand: you can make your life better, and maybe increase your chance that you'll be around when a cure is found."
    As for the specifics of Keith's physical regimen, Stern cautioned that it may or may not help another patient. He agrees, though, that there are many good reasons to strengthen the body in those areas that ALS has not affected, as Gossett does in his daily exercise routine.
    "There's o question that strengthening your lungs can help you deal with a respiratory emergency," Stern says. "It's a terribly frightening thing to wake up in the middle of the night gasping for air. In the long run, [strong lungs] can certainly affect your ability to survive, and the quality of your life."
    On top of everything else, it helps, Gossett believes, not to worry and get frustrated over things you can't ultimately control.
    "I used to be that way --- get upset because I couldn't do all the things I once did," he confesses. "I'd look out the window and see that the lawn needed cutting and I couldn't go out there and do it. Finally I decided it was no big deal. The neighbors help out."
    "Thank God for my neighbors," he continues. "They mow the lawn and even paint the house when it needs it. And when one of them is having a problem with his car, I have him make a pot of coffee and then I sit down and tell him how to fix it."
    The benefits of Gossett's group sessions are very apparent. On the one, hand he seems energized by having a real opportunity to help others, a forum for his ideas and his philosophy. On the other, group members seem to genuinely appreciate the advice and support of someone who is going through it all with them.
    "In a situation like this," says Stern, "where a disease is progressive and fatal and the physician has no cure to offer, sometimes it's difficult to maintain a close relationship with a patient. A doctor... isn't in the position to provide the kind of emotional support a patient needs. And then too, a patient doesn't like to hear what he sometimes needs to hear from a doctor. It can be an uncomfortable relationship."
    "With support groups like Gossett's," Stern says, "there can be a closeness and sharing not otherwise possible. The same information can actually be transmitted more effectively than in a structured doctor-patient situation."
    "I've been going to ALS group meetings and counseling sessions for 13 years," Gossett says. "They can be constructive, but I've also seen a lot of people at these meetings just giving up, wanting to die. I want to tell them I've been where they are and they don't have to give up. My routine --- maybe it won't work for the next person the way it's worked for me. The important thing is to do something, find out what works for you."
    Wallace calls Gossett "my guru. He's always bringing in literature for me to read -- where man stands in relation to the planet, the fact that were only here for a short time. We talk during his sessions about the metaphysical things more than the physical. I think that sustains Keith as much as anything."
    It's Confucius revised for contemporary appeal: "As we go through this life," Gossett reflects, "some people are wheelbarrows. They have to be pushed to get to where they ought to be."
    Keith Gossett took a few pushes, but he's not a wheelbarrow anymore.

A FEW OF KEITH'S ROUTINES

Many of the techniques that ALS patient Keith Gossett practices are from many written sources, especially those embracing Eastern philosophy and medicine.
    Most important to his breathing exercises is "upside-down" breathing, in which one passively allows air into one's lungs and then rapidly, actively pushes it out (quite the reverse of the way we're accustomed to breathing). As one pushes the air out, the stomach is flattened.
    Apart from strengthening the stomach muscles, this exercise can be emotionally relaxing, according to its proponents. And it can be practiced anywhere, at any time. Gossett practices in bed, in the shower, during his walks, while he's doing the dishes --- and while he's doing his self-massage routine.
    A related exercise is what Ian Jackson, in his book, The Breath Play Approach to Whole Fitness, calls "Body Mind breathing." With this exercise, one focuses on a specific part of the body with each out breath. One "turns off" that image with each breath, "turns it on" again with the next out breath. This is an exercise in concentration and relaxation.
    Gossett's self-massage routine has twenty independent steps, corresponding to twenty specific parts of the body. Each area is massaged fully and slowly --- about a two-minute treatment. The twenty areas massaged are "pressure points" --- the temples, the rib cage, the spine and sacrum, the lumbar area, the calves, the soles  of the feet, among others. The idea is similar to the concept underlying acupuncture --- without the needles.
    Those who embrace the practice of self-massage feel that it not only strengthens the muscles, but helps speed the rehabilitation process.
    Agatha Colbert, M.D., Consultant Physiatrist and co director of MDA's clinic at the Lakeville (Massachusetts) Hospital Rehabilitation Center, views these techniques with an open mind.
    "I definitely think the course of an illness is influenced by the person's psychological approach to that illness," she says. She views the type of exercises Keith Gossett is practicing --- meditation, breathing exercises, positive visualization, self-massage --- as positive ways to relax and to add to a person's overall feeling of well-being. "The more relaxed you are, the healthier you are."
    She does caution that inexperienced persons might tend to hyperventilate and faint if they're not careful with the breathing exercises, and that persons with neuromuscular diseases should avoid causing muscle fatigue if they engage in muscle-strengthening exercises.
    "Meditation and visualization have proven to be of significant benefit among cancer patients," Colbert adds. "Although there is no research to show that the same would be true in persons with ALS, my intuitive feeling is that these approaches would improve the persons ability to take more responsibility for his or her own health and well-being. And that in itself improves the quality of life and gives it deeper meaning."