Advocacy + Media
Guest speaker on
CBC Radio| B.C. Almanac show hosted by Gloria Macarenko
The full podcast can be found here: http://podcast.cbc.ca/mp3/podcasts/bcalmanac_20160922_90425.mp3
SHAW TV Nanaimo
Although he’s come up against a lot of challenges, Ciro is turning his narcolepsy into a positive by raising awareness about sleep health through his involvement with Project Sleep In 2015.
Front Page of the Nanaimo Daily News
Published on March 04, 2015
Vermont Gov. Peter Shumlin Proclamation for Narcolepsy
The Navigator Newspaper
Shane Koyczan tickets and my first poem published = Winning
Published on March 12, 2015
Snooze blues – Vermonters with sleep disorders turn to local hospitals for help
Times Argus, The (Montpelier-Barre, VT) – Sunday, October 3, 2004
Author: Susan Youngwood
Ciro DiRuocco, a tall, gangly freshman in my writing class at Vermont Technical College, sits right up front, his desk piled with books and papers. He cradles his head in his palm as he reads a book on Italian immigration for his research paper. I watch as his eyelids slowly shut. His head nods down, then jerks up. He opens his eyes briefly. Then his lids close again. He is fast asleep.
Normally, the last thing a teacher wants to see is a student fall asleep in class. Waking snoozing students is a skill many teachers develop. But I let Ciro sleep and didn’t take it personally.
Ciro is one of about 250,000 Americans who suffer from narcolepsy, an incurable but treatable disease that wreaks havoc on sleeping patterns. Before Ciro, my only contact with narcolepsy was a humorous character on the 1980s TV series Hill Street Blues , a comic who fell asleep in the middle of his act. But as I learned from my interactions with Ciro, sleeping disorders are no laughing matter.
Approximately 40 million Americans have one of dozens of chronic long-term sleeping disorders – conditions that can undermine their education and work, ruin their physical and mental health and destroy family and social relationships. In addition to narcolepsy, they include insomnia and a condition called sleep apnea. In Vermont in the last decade, many hospitals have opened sleep-disorder clinics to serve the thousands here who have sleep problems.
Ciro introduced me to this issue. While I understood why he dozed off in my class, his constant sleepiness confounded his teachers in high school.
In his junior year at Harwood Union High School in Duxbury, Ciro failed several classes. “I have no recollection of chemistry. The moment the teacher touched the chalk to the chalkboard, I was out,” he says. “On my permanent record, it says, ‘Ciro couldn’t stay awake in class’,” he adds. Spanish was no better; the teacher sent notes home about his sleeping in class.
“I denied it – I’m not asleep. I thought I was awake,” he says. “I became a joke to everyone – Ciro’s asleep again.”
Unlike some teenagers who burn the candle at both ends, Ciro was getting seven to eight hours of sleep a night. His parents, who owned a restaurant in Waterbury, the Villa Tragara, were not home in the evenings to monitor his sleeping patterns.
“I had never heard of narcolepsy,” says his mother, Tish DiRuocco. “He had no symptoms that made you think he needed a doctor. The teachers just thought he was bored in their class. I scolded him, told him to get more sleep at night.”
His senior year started with similar problems, but his human physiology teacher John Kerrigan realized there was something seriously wrong with Ciro. “If it weren’t for him, I still would not be diagnosed,” Ciro says. “He started checking to see what I was eating, how much I’d slept the night before. One day he gave me pretzels to eat in class, as an experiment. Mid bite, my head hit the desk. I was out.”
Ciro got into a car accident that fall. It was 7:30 on a clear night, and he totaled his mom’s Subaru. When he rammed into a tree, Ciro didn’t wake up on impact. He stayed asleep until a passerby shook him awake.
Propelled by the car accident and Kerrigan, Ciro’s parents brought him to Fletcher Allen Medical Center in Burlington late in 2002 for tests.
Before 1970, Vermonters with sleep problems had nowhere to go. In fact, our understanding of sleep then was still new, for sleep research hadn’t really begun until the 1950s, when scientists first realized how active the brain was during sleep. Even today, scientists don’t fully understand why we need to sleep.
Fletcher Allen Health Care in Burlington, then called Medical Center Hospital of Vermont, opened Vermont’s first sleep clinic in the mid-1970s (Dartmouth-Hitchcock in New Hampshire opened its clinic in 1971). About 20 years later, other hospitals around the state began responding to the demand. Rutland Medical Center opened its center in the early 1990s, and Central Vermont Medical Center in Berlin and North Country Hospital in Newport opened theirs in the late 1990s. Southwestern Medical Center in Bennington followed in 2000. A freestanding clinic in Essex Junction, the Vermont Medical Sleep Disorders Center, opened in the mid-1990s.
Dr. Stephen Gorman helped start the Rutland sleep center after treating patients in the intensive care unit who had a variety of medical conditions and additional problems that disturbed their sleep. “It jolted me that we are missing the boat on these people,” he says. He formed a “sleep council” with other doctors and started studying sleep. “We found that there was a tremendous number of people in the community with sleep disorders that needed treatment.”
Like the Rutland Sleep Council, which continues to meet, sleep centers tend to be multi-disciplinary affairs. Medical personnel trained in psychiatry, neurology, cardiology, pulmonary medicine, pediatrics, dentistry, respiratory therapy and other fields work together to diagnose and treat patients.
Most sleep centers have a similar routine. Ciro, for example, met with a physician who specializes in sleep, who asked a range of questions – such as whether he snored or fell asleep while talking on the phone – and gave him a physical exam.
An accurate diagnosis often requires that the patient spend a night in the hospital’s sleep lab.
Gary White, the technician at the Sleep Disorders Center at Central Vermont Medical Center, which is affiliated with Dartmouth-Hitchcock, describes the experience Ciro most likely had. In about an hour, more than 20 wires are attached to various spots on his body. Wires in the hairline measure brainwaves, those near the eyes follow eye movement, a chest wire records heart rate and rhythm. An audio mike records snoring while a wire on the upper lip gauges the flow of air moving in and out of the nose. Wires on the legs reflect movement and a pulseoximeter on a finger measures oxygen level.
While I have trouble imagining falling asleep with 20-odd wires attached, most patients are out quickly. “Ninety-five percent of the people have no problem falling asleep because they are tired,” said George W. Kimball Jr., coordinator of the Sleep Center at Rutland Regional Medical Center.
The wires transmit information to a computer, data like heart rate, eye movement and oxygen level showing up as jagged lines etched on the computer screen. A technician watches the computer screen as well as a video monitor trained on the patient. Changes in the lines on the computer screen show when the patient goes through the various sleep phases.
Sleep cycles through five stages. Stage one is light sleep, when we can be awakened easily. Our brain waves begin to slow down in stage two. Stages three and four are considered deep sleep, when it is very difficult to wake someone up; there is no eye movement or muscle activity. In fact, if you wake up in these stages, you’ll feel disoriented.
The last stage is called REM, or Rapid Eye Movement. Here, our eyes flit rapidly under our closed lids. We breathe rapidly, our heart rate increases, and our muscles freeze. Dreams occur during REM sleep. Most of our sleep time is spent in stages one, two and REM. Interestingly, if REM sleep is disrupted one night, the next night we go directly into REM, as if to make up for lost time.
The computer records the patients’ sleep patterns. All the information – the equivalent of hundreds of pages – goes on a CD that is then analyzed by a sleep physician. Usually within two weeks, a diagnosis is made.
According to Ciro, his nighttime sleep lab experience set a record: “Most narcoleptics take five to 10 minutes to fall asleep; I was out in like a minute and a half.” Most people without a sleep disorder take about 15 minutes to fall asleep.
The next day, Ciro had daytime sleep tests. After having a good night’s sleep, he was told to take five naps separated by about two hours of awake time. “I fell asleep every time.” He was diagnosed with narcolepsy; in a letter sent to his school, his doctor wrote that Ciro’s “school performance over recent years most likely was compromised by the pathological degree of daytime somnolence he had been experiencing.”
When confronted by the doctor, Tish said, “Ciro was in complete denial. He insisted, ‘I don’t have this.’ Only when the doctor pointed out that he had fallen asleep in the waiting room and couldn’t be awakened did he begin to accept his condition.”
Ciro’s denial is typical. “Studies show that on average, it takes 20 years to diagnose narcolepsy from the onset of symptoms,” said Dr. Hrayr Attarian, director of the Vermont Regional Sleep Center at Fletcher Allen. “People don’t go to the doctor and complain. Sleep is taboo. You are lazy if you sleep. People are embarrassed to talk about it.”
There are at least 84 recognized sleep disorders. Narcolepsy is one of the rarer ones; estimates of its occurrence range from one in 1,000 to one in 2,000. The National Institute of Health Web site says 250,000 Americans suffer from it.
Narcolepsy, according to the National Sleep Foundation, is a “chronic neurological disorder.” The most common symptom – which can appear at any age, although typically appearing between the ages of 15 and 30 – is excessive daytime sleepiness, which results in falling asleep at inappropriate times.
“For people with narcolepsy, the messages about when to sleep and when to be awake sometimes hit roadblocks or detours and arrive at the wrong place at the wrong time,” the Web site says. Doctors now think narcoleptics lack a chemical in the brain called hypocretin, which regulates sleep and arousal. Sleep for Ciro is different than for most of us – when he falls asleep, he bypasses the first four stages of sleep and goes immediately into the deepest stage, REM.
One of the most common sleep problems is sleep apnea, which affects up to 18 million Americans, the majority of which have not been diagnosed, according to the NIH. People with sleep apnea suffer from frequent but brief interruptions of breathing during sleep, when air cannot flow into or out of their nose or mouth. When they are unable to breathe, they awake briefly. While they typically don’t recall waking up, people with sleep apnea can have as many as 60 arousals an hour. Because they don’t get a prolonged period of deep, restorative sleep, sufferers are often very sleepy during the day. There is a strong link between sleep apnea and snoring; Dr. Attarian says five of six male snorers have sleep apnea.
Sleep apnea increases with age; it occurs in 4 percent of middle-aged men and 2 percent of middle-aged women but rises to 28 percent of women and 24 percent of men over age 65. In Vermont, Dr. Gorman estimates just 1 percent of sleep apnea patients are receiving treatment.
Sleep apnea is caused by a blockage of the airway, often when the throat muscles and tongue relax. “Weight change is a huge trigger of sleep apnea … 70 percent of overweight men have sleep apnea,” Dr. Attarian says.
Bob Fuqua, 69, of Underhill, is a typical sleep apnea patient. He snores. His wife started noticing that at night he would often stop breathing. “I would wake up in the morning and feel tired,” he says. “I was always tired. The worst part was being tired all day long.” His wife brought the problem to his doctor’s attention – a typical scenario, according to doctors.
Another common sleep disorder, called restless leg syndrome, is also believed to be caused by chemical imbalances, said Dr. Attarian. As many as 12 million Americans experience this disorder, in which uncomfortable leg sensations can only be relieved by stretching, bending or rubbing the legs, or walking around – all of which disturb sleep.
While many people experience problems falling asleep, chronic insomnia is when the condition continues for more than six months. About 20 million people have this problem. Sleep centers also see patients with parasomnias: Sleepwalking, sleep terrors, sleep-related eating – a variation of sleepwalking when someone eats while asleep without conscious awareness.
Whatever the diagnosis, victims of sleep disorders suffer the same hardships from lack of sleep. Studies show links between sleep disorders and a host of physical ailments.
Almost every illness is aggravated by lack of sleep, explains Dr. Gorman. “If you improve a patient’s sleep, you improve the disorder,” he said. “Sleep dysfunction aggravates the disease.”
Lack of sleep impairs the immune system, makes one more apt to gain weight, leads to higher blood pressure, and increases risk of heart attack and stroke. “Sleep is anti-inflammatory,” Dr. Gorman said. “Chronic pain drops with sleep.” Just by curing a sleep disorder, some patients have been able to stop taking their blood pressure medicine and control their diabetes, Dr. Gorman says. He estimates that there are 108 new cases of heart disease in Vermont each year that can be attributed to sleep apnea alone.
“Most people are not aware of how important sleep is in terms of their total health and improving their medical condition,” Dr. Gorman says.
The good news is that most sleep disorders are treatable. Ciro started taking a drug called Provigill in the second half of his senior year. The change was immediate.
“Before, I felt tired all the time. I went to speedy all the time,” he said, explaining that he suddenly had a ton of energy. “I became obsessive compulsive. I retook L.C. Algebra II, got an A-/B+. My grades improved. I wasn’t falling asleep any more. I felt better.”
Unfortunately, when Ciro started college his condition resurfaced. The drugs weren’t working as well. When I met Ciro spring semester, his condition was affecting his academic work again.
“After awhile, the meds were not helping me,” Ciro recalls. “I had three alarm clocks, but I slept through them. I was still falling asleep in class.” One night in his dorm, he says, “I passed out mid step. I was holding juice, I fell asleep and woke up and the juice was all over me.”
The doctors prescribed another medication; he missed a doctor’s appointment, couldn’t get a refill and new problems arose. He missed numerous classes because of doctor appointments and time spent in the hospital. In my class, Ciro fell seriously behind in his work.
Because of his condition, Ciro falls under the Americans with Disabilities Act, and is eligible for accommodations both at school and work. Sensitive to his situation, I extended his deadlines. However, Ciro says, many teachers and administrators were not sympathetic.
“The general society has a perception of college kids as being lazy,” he says. “There is a difference between being lazy and having narcolepsy. But some teachers saw narcolepsy as an excuse for laziness.”
In an essay he wrote for my class, he described his frustration. “This condition is still very new to me and is starting to become very frustrating because many people would rather see me as a slacker, rather than a kid with narcolepsy trying to succeed. The more I try to be just a normal person at school, I realize I can’t. Above all the hardest thing for me right now at school is the professors. I feel as though every time I go to a class most professors look at me like I am a freeloader. The professors cannot comprehend this condition, so rather than an open-minded approach, I receive punishment for my minor handicap.”
By the end of the semester, Ciro was far enough behind in his classes that he took a medical leave of absence. He ended up getting no credit for any of the classes he took.
Sleep disorders play havoc with our bodies and our lives.
“The biggest problem of lack of sleep quality is memory,” says Dr. Attarian. “Attention is the first to go. If you can’t pay attention, then the information doesn’t go into short term memory, or long term memory.”
Lack of sleep leads to irritability and mood problems, Dr. Attarian says. It impairs judgment, which leads to car accidents and industrial accidents. Reasoning, creativity and the ability to solve problems decreases. Loss of self-esteem and depression often follow.
Eight hours of sleep debt, Dr. Gorman said, affects one’s mood. “You get tired, listless. Depressed, irritable. You lose patience, energy. Your sex drive drops.
“There are increased interpersonal conflicts, decreased effectiveness at work and home,” he continues. “It interferes with child raising. Children become hyperactive, impulsive, crabby.”
Peggy McCullagh, 49, was just recently diagnosed with narcolepsy, even though she believes she has suffered her entire life. “I’ve always been aware that I’ve lived my life differently from other people. … My perception, from very early on, is that the rest of the world is flying by me. My siblings and friends learned so effortlessly. I always felt like I was in a bubble. I was a terrible student. … In school I went into a zone where I’d struggle to stay awake and not fall asleep and embarrass myself.”
Her troubles continued after graduation. She was unable to keep many jobs and needed to find work that kept her busy constantly. She now cleans houses. Both of her marriages ended in divorce.
Now on medication, she marvels at the difference. “This is the way the rest of the word felt and I didn’t know it,” she says. “My interactions with my kids are easier. Before, everything was an endurance test. … Look, I’m talking right now. The words come out so much faster. It’s hard to converse with someone when you’re tired.”
As Peggy says, sleep disorders are curable. Narcoleptics and patients with restless leg syndrome can take drugs. Masks that keep airways open help those with sleep apnea. Just making lifestyle changes can help. Sleep apnea sufferers should not sleep on their backs, for example, and losing weight and quitting cigarettes help alleviate the condition. Dietary changes are recommended; alcohol, caffeine and sedatives aggravate many sleep disorders.
“Not only is it treatable, it’s quick,” says White, from CVMC. “It’s about the only place in medicine today with instant gratification. You can take someone who is essentially dead several times an hour and in 30 minutes he’s cured.”
This fall, Ciro is taking classes at VTC’s Williston campus, and hopes to earn a degree in business management. He knows he needs a job with more flexible hours that will allow him to start work later in the day and take afternoon naps.
“I want to show that this doesn’t affect me, that I can rise above it,” he tells me.
Ciro’s situation really touched me after I read an essay he wrote for my class. The assignment was to write a “cause-effect” essay; Ciro explains the effect narcolepsy has had in his life. He got an A for the assignment. Here are some excerpts:
“When a person thinks of narcolepsy they generally leave out the paralysis and the vivid dreams. These symptoms are factual for me, and I constantly find myself trying to decipher reality from dreams.”
“When I wake in the morning I can feel a slight headache and my body pleads with me to go back to sleep. Most mornings I prolong the appeal to sleep, and I take my meds. After a half an hour or so I transform like Dr. Jekyll to Mr. Hyde, but instead of becoming a visible beast, it’s more like an obsessive/compulsive version of me. When I have taken my medication I become a different person. I can clean whole houses in minutes and do weeks of work in hours. While performing typical tasks of the every day my fear is fatigue, especially when I need to drive. My fears live vividly with me everywhere I go. I understand that there is no cure for what I have, but only adaptation.”
“This year at Vermont Tech, I have learned a valuable lesson. I figured out how to become my own self-advocate. … All I wish for is an equal opportunity at success and an understanding of a few idiosyncrasies.”
Published October 3, 2004
Son of a Chef – The Valley Reporter
Published on March 24, 1994