When asked what the word ‘sleep’ brings to mind, Reg offers words like ‘quiet’, ‘peaceful’, and ‘rejuvenation’. Yet, for much of his life, his sleep was the opposite. It was a decades-long struggle marked by silence, choking, and a danger that went unnamed and untreated until a terrifying moment on a busy freeway. This is the story of Reg’s 50-year journey with sleep apnea.
THE EARLY WHISPERS
The first signs of trouble emerged when Reg was in his early 20s and recently married. He recalls, “My wife would wake me up saying, ‘Reg! Breathe, breathe, you’re not breathing!” At the time, ‘sleep apnea’ wasn’t a common term. With no name for the condition, it was easy to dismiss. Reg was in good shape, so he figured it wasn’t weight-related. Years later, a comment from an anesthesiologist offered a clue to a potential predisposition: “You’ve got one of the smallest air tubes I’ve ever seen.” This physiological trait likely meant he was prone to obstructive sleep apnea from a young age. It meant that he was more prone to experience collapse of the upper airway during sleep, leading to interruptions in breathing.
In his 20s, without any obvious daytime impact, Reg simply lived his life as normal and would wake up, go to work, and feel fine throughout the day, as there was “no obvious problem” affecting him at that point. He explained that it’s difficult to define coping mechanisms because he wasn’t consciously managing a known problem, stating, “When you’re not doing anything about it, you don’t know it, so I can’t say how I was coping with it.”
As the years went on, he read a newspaper article that described a new disease called ‘sleep apnea’ and its symptoms. He remembers thinking, “Oh, I got that. Or that’s what that must be, what I have.” However, his self-described easygoing nature and tendency to believe physical problems will go away kept him from seeking help. “It was not severe enough to warrant doing so, so I just coped,” he explains. He didn’t connect his general tiredness to a lack of quality sleep; he simply accepted being a “tired kind of person” as part of his identity. He’d wake up, have a cup of coffee, and feel good enough to get through the day.
By his mid-to-late 40s, his body could no longer cope quietly. The benign pauses in breathing escalated into life-threatening events that would jolt him from sleep.
I would wake up literally choking, because I would swallow spit, and the spit, instead of going down my esophagus, would go down the air tube, and I would wake up gagging and trying to get control of my breath so I could get some air into my system.
AN OFFICIAL DIAGNOSIS
These episodes, happening two to four times a year, were terrifying wake-up calls. The daytime fatigue also worsened dramatically. Reg remembers falling asleep at a red light in Las Vegas and also being woken up by his boss while he slumped over at his work desk. This was the point where the condition began to have an overt impact on his life. He finally went for his first sleep assessment in 1998, where tests revealed the true severity of his condition. His blood oxygen level was dropping to a dangerous low of 69% during the night. He was diagnosed with severe sleep apnea and prescribed a CPAP machine, a machine that blows air into the airway to hold it open, to prevent it from collapsing. But his journey toward acceptance was far from over. Reg admits he was looking for an easier solution. “I suspect, knowing me, I wanted the pill. Take a pill, and I’ll be fine forever.”
While the CPAP machine sat beside his bed, unused, for the better part of seven years, he explains the common resistance with candid honesty: “Like all good men in their 40s and 50s, [the attitude is,] ‘well that’s nice to know… but it’s not causing me too many problems. I’ll buy it, but I won’t use it.’”
THE WAKE-UP CALL
The moment that finally shattered his denial didn’t happen in a doctor’s office. It happened on a California freeway over the Compton district, while driving 70-80 miles an hour with his wife and teenage children in the car.
I must have just started to… doze off, because my kids yelled, “Dad! Wake up!” That woke me up in more than one way. From that day forward, I have never not worn or used my CPAP machine at night. That was the wake-up call that finally said, ‘This is a problem that can end your life and those you love around you.’
That single, terrifying event changed everything. Reg became a diligent CPAP user, even renting a machine on vacation when he forgot his own in the back seat of his friend’s car. The machine worked like magic. His severe apnea is now considered minor, and he remarks that he does not nod off anywhere near as much as he used to.
Today, Reg reflects on the decades of his condition which went untreated and wonders about the long-term consequences. He suffers from a host of health issues, including osteoarthritis, depression since his late 20s, blood pressure problems and possible vasculitis. “I honestly believe a lot of that has to do with [sleep] apnea over the years,” he says. He also wonders if his father, who suffered a stroke at 55, may have had the same undiagnosed condition. Indeed, the National Institutes of Health (NIH) cited that approximately 80% of individuals with Sleep-Related Breathing Disorders remain undiagnosed.
THE NEED FOR CHANGE
His experience has transformed Reg into a passionate advocate for sleep. Reg serves on healthcare committees and volunteers with respiratory technology students, sharing his story so others can learn from it. He is on a mission to promote earlier diagnosis and greater awareness. The following are some of his recommendations:
1. Implement Early Diagnosis: Reg is passionate about lowering the average age of diagnosis and suggests that sleep apnea tests should become a routine part of health screenings for young people once their primary growth has finished, such as in their late teens or early 20s. He believes proactive screening would function like other routine tests performed to rule out potential problems.
2. Change Doctors’ Diagnostic Approach: He believes doctors, particularly general practitioners, need to “reset their approach to diagnostics”. He argues they need to start understanding that “sleep apnea is a major foundational problem for a lot of diseases that happen later in life”. Notably, it’s known that sleep apnea increases the risk for cardiovascular diseases, stroke, hypertension, diabetes, and mortality. Thus, equipping general practitioners with the necessary sleep medicine knowledge is critical. Reg has taken a step further in his advocacy efforts. He is a part of the team that co-designed the “Obstructive Sleep Apnea Pathway” for general practitioners to help them identify and refer patients with obstructive sleep apnea in Alberta, and which has been implemented by Alberta Health Services.
3. Increase Access to Experts: Reg stated that patients need “more professional help upfront when they’re first diagnosed”. This requires producing more specialists, as he notes that “breathing doctors… they’re just not around”.
4. Provide Financial Assistance: He pointed out that the costs are “almost prohibitive if you don’t have a health plan”. To overcome this, he suggests two specific financial actions:
a) Increasing the subsidy for CPAP machines, which hasn’t changed in about 10 years, even as machine prices have increased.
b) Providing financial help for the high recurring cost of supplies, such as masks and headgear, which can be $300 every few months. Making treatments affordable can, in turn, help decrease the inequity in treatment access.
5. Improve Supplier Accountability: He acknowledges that suppliers offering both diagnostic services and hardware/accessories for sale have come a long way since his first involvement with them. However, he suggested that continued improvement is needed so clients do not have to answer the question, “Do I have a significant medical problem or does my doctor just want to sell me a CPAP machine?”
Reg’s 50-year journey is a powerful testament to the hidden dangers of sleep disorders. It’s a call to listen to our bodies and to recognize that the fight for a good night’s sleep can sometimes be a fight for life itself.
Interviewed by Madhura Lotlikar, Ph.D. candidate, Neuroscience, McGill University
