Life with ALS...Farel Robins' story

http://www.dailystatesman.com/story/1899174.html

Sunday, September 30, 2012

Purchase this photo at dailystatesman.com NOREEN HYSLOP - nyslop@dailystatesman.com Farel Robins of rural Advance, who suffers from ALS, is shown sharing a lighter moment with his wife, Eileen, as he utilizes a specially equipped computer that voices concerns or commands. ALS strikes about five in every 100,000 people worldwide. [Order this photo]

By NOREEN HYSLOPManaging Editor ADVANCE, Mo. -- At just over six feet, five inches tall, Farel Robins was always a towering figure. A retired postal clerk, Robins has always had a passion for flying and has been an accomplished pilot for most of his 68 years. But Robins no longer walks tall, and the veteran pilot has taken his final flight above the skies of Stoddard County. Robins was diagnosed with ALS nearly three years ago. The first symptoms appeard in December 2008. "We were out shopping one day," recalls his wife, Eileen, from their spacious rural Advance home, "and suddenly he was dragging his right foot behind him. We had no idea why. I was afraid he had suffered a stroke." The initial visit to the doctor resulted in a prescription for therapy for a condition called "drop foot." Therapy was not at all beneficial at the time. It was a prescription, the couple would learn later, that did more harm than good. But the couple was months away from a confirmed diagnosis of ALS, and were following doctor's orders. Finally in September 2009, the Robins drove to St. Louis for an appointment at Barnes Hospital. Experts there confirmed that Farel had amyotrophic lateral sclerosis -- more commonly referred to as ALS or Lou Gehrig's disease. ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. The disease strikes about five out of every 100,000 people worldwide. In about 10 percent of the cases, ALS is caused by a genetic defect. The cause is unknown in the other 90 percent of patients. The nerve cells of an ALS patient wither away and die. As the disease takes its toll, the nerves are no longer capable of sending messages to the muscles. The process leads to first weakening of the muscles, twitching, and then an inability to move the arms and legs, eventually affecting the entire body. There is no cure for ALS. It is an ugly, unforgiving disease that, in the end, leaves its victims virtually motionless. The brain, however, is unaffected by the disease, and so the patient is ever aware of his or her diminishing capacity as the illness progresses over a period of three to five years. In the end, the disease robs the patient of the ability to swallow. When the muscles in the chest stop functioning, it eventually becomes impossible to breathe on one's own. Farel Robins is in the late stages of ALS. The man who once stood so tall is now confined to a wheelchair, specially designed for his height. And he seldom takes a breath without the aid of oxygen. Until recently, he could sip from a straw and relieve a dry mouth with ice chips, but those days are now behind him. He is equipped with a feeding tube. For a four-hour period each day, a smooth liquid meal of nutrition makes its way into his stomach through a line that is fed into a port on his left side. He is lifted with the aid of a swing-type brace that is placed under and around his long frame. Eileen helps Farel as the belted contraption "hoists" him from one setting to another.  Eileen is never far from her husband's side. Since a specially equipped recliner now offers more comfort than a bed, he spends his nights there.  "I just pull up a twin mattress and lay it down on the floor next to him in case he needs me through the night," Eileen says, with the same smile that gets her through the everyday continual challenges of the disease. Eileen has witnessed the steady decline of her husband for nearly four years. Every doctor's visit entails a breathing capacity test. "He still had 58 percent lung capacity last year," she notes. "But that dropped down into the 40s, and in June this year, it declined to 19 percent. When we visited the doctor in August, he didn't want to tell me what the number was." Farel's voice is now reduced to a raspy whisper, and his breathing is shallow. And yet, he smiles and converses with what little speaking ability remains. His wife acts as an interpreter when the words don't come or when they are too difficult to comprehend. Despite the toll the disease has taken and the fear of the unknown, Robins projects a positive attitude, never questioning why he has been stricken with such a devastating diagnosis. Rather, he still enjoys a little time each morning at his computer, catching up with friends with Eileen's assistance, and reading some online news. He follows a daily routine that changes only as more limitations surface. Frustration seems to be a thing of the past. For Farel Robins, there is no point in dwelling on the 'whys' -- he'd rather wake up spending what quality time remains for him in the company of a devoted wife who approaches each task seemingly with the ease and poise of an expert in the field. "I've learned to do what I have to do," Eileen explains. "We've been very fortunate to be equipped with this equipment to help Farel. I have no doubt that without them, he would not still be here."The machines to which Eileen refers are within her reach at all times. One is a cumbersome "cough assist" unit. When phlegm makes its way to Farel's chest or throat and causes choking, Eileen places a mask from the cough assist over her husband's face. Once in place, the mechanism forces air into the chest and then pulls it out, usually releasing any obstruction. If that doesn't suffice, she uses a suction tube that she places down Farel's throat in a second effort to clear the airway. "That's a very scary procedure," Eileen says, "but when he can't get relief from the cough assist, that's what we have to do." Another device is utilized twice daily for 20-minute intervals. Again a bulky device, it wraps around the chest, and once put into operation, it literally shakes the chest wall, vigorously vibrating to loosen any chest congestion that has developed as a result of Farel remaining in a stationary position. At night, Robins is equipped with a bipap machine that works by maintaining a certain amount of air pressure within a mask that he wears while sleeping. The air pressure keeps the wearer's airway open, allowing him or her to breathe easily while at rest. A former waitress, Eileen's full attention these days is on her husband. Other than bi-weekly, one-hour long visits from a visiting nurse organization and occasional visits from a friend and neighbor who is an RN, Eileen is her husband's caregiver.  Farel is limited to the use of only his left hand these days. A uniquely programmed computer is available to serve as his voice. His functioning hand wraps around an extended wooden dowel that gently taps an icon on the computer screen. An audible command says, "I need a pillow," or "Please get me a drink of water," among a number of other requests.  "Most of them are outdated now," his wife says, indicating that he can no longer drink or eat. In spite of the outdated data, though, Farel smiles at his wife and teasingly taps out a command. The couple deals with the inevitable with grace and an appreciation for every day that dawns. Eileen seems to judge her husband's needs by only the look in his eyes and is quick to respond to any request. They still anticipate sunny days and special television broadcasts to watch together. Farel fights tears as he tries to find the words to describe how one prepares for life's end. When words don't come, his eyes tell the tale and his wife, who is now his voice, interpets. "We just take one day at a time and consider it the gift that it is," she says, with a squeeze of Farel's hand.