Rollin’ with my Homies

Since I’m Jewish, I feel equally at home with both lawyers and doctors. Throw in a sadistic dentist and a dull accountant and I’m basically back in high school. Despite my ease with MDs and Esquires, they are two completely different breeds.

Doctors vs. Lawyers

 The differences are evident as early as middle school. As students, future doctors always did their homework and handed in assignments on time; future lawyers never did their homework but used their power of persuasion to successfully convince teachers for extensions. Doctors were the studious teachers’ pets sitting in the front row and lawyers were the smart asses sitting at the back of the class. Not much changes when these students become professionals. Doctors are funny in that ABC sit-com laugh track kind of way; lawyers are funny in that wickedly inappropriate, filthy and vulgar NC-17 HBO kind of way. I fucking love lawyers. Doctors never have any conflicts to declare and lawyers make their livings off of conflicts. Doctors are humble and modest rarely making any definitive statements without dozens of peer-reviewed studies supporting their position; lawyers are cocky, pompous and just generally full of ego. They are constantly trying to assert outrageous new arguments no colleague has ever previously attempted even if it massively stretches the intention of the law.

Why the comparison? Well, this past weekend I had the pleasure of attending the Canadian Sleep Society Conference hosted at the Marriott Hotel in downtown Toronto. I have been to this conference centre many times before for legal events such as OTLA and CLA where rooms are overflowing with lawyers. Snarky remarks abound, self-deprecating humour is the norm, one-up-manship reigns supreme and overworked students cling to their mentors like an overdressed entourage from a Ralph Lauren catalog.  I couldn’t help but notice how different the atmosphere was when the rooms were filled with doctors, nurses and scientists. It was like night and day. Like the juxtaposition of dark Harry Rosen suits against pristine white lab coats. There was no heckling during lectures, nobody was going vendor to vendor stealing pens, students were praised and held in high regard, and most surprisingly, nobody made a single joke about the Carbolic Smoke Ball which would have been oddly apropos, though perhaps a bit obvious, given the link between narcolepsy and the flu vaccine.

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Day 1: 

Patient Engagement Workshop

The conference started Friday afternoon with a half day workshop entitled Engaging Patients in Sleep Disorder Research. This was by far, my favourite part of the weekend. Four sleep disorders were represented at the workshop – sleep apnea, insomnia, restless leg syndrome and of course, narcolepsy. Unsurprisingly, I was seated at the narcolepsy table which naturally became the most popular table upon my arrival.  There were a number of other fellow narcs, including my new sleepy best friend Shannon, my new ten-year old BFF who also happens to be a blogger and thinks I look like Sleeping Beauty, her parents, a narc from Montreal, a narc from Halifax, a scientist from the University of Toronto who studies narcolepsy & cataplexy in mice, a neurologist from McGill, an advocate from Wake Up Narcolepsy and a representative from Jazz Pharmaceuticals (the company that owns the Xyrem patent). It was a motley crew of characters, all with different points of view, sharing their unique perspectives.

A patient and a doctor from each sleep disorder group presented information about their particular malady and area of expertise respectively. It was eye-opening (literally) to learn about the other sleep disorders. As knowledgeable as I am about narcolepsy, I knew very little about the other conditions. What struck me most as each group presented was a sad commonality amongst all of the patients. Regardless of the disorder, it always seemed to take an inordinate amount of time to be properly diagnosed. Sleep is such a basic and fundamental biological function yet doctors receive shockingly little education on the topic. At the conference, it was mentioned that just a single solitary class in all of the 500 years of med school is devoted to sleep and sleep disorders. Imagine if lawyers learned about contract law in just one class. Consequently, doctors know very little about the different conditions and are therefore hesitant to make a sleep disorder diagnosis. It quickly became apparent that educating doctors is essential.

Following the individual group presentations, we broke off into smaller groups according to our affliction for roundtable discussions. The purpose of the discussion was for patients to share with the doctors and researchers which specific symptoms of narcolepsy are most crippling and to give patients an opportunity to voice their opinions in terms of possible avenues for research. The idea was to bridge the gap between research done by hypocretin rich individuals and the everyday struggles faced by hypocretin poor individuals to lessen the disconnect. For instance, a lot of research seemed to be focused on daytime sleepiness when in actuality cataplexy was the more problematic symptom for most sufferers. Researchers shared that from their perspective hypnogogic hallucinations must be terrifying and something patients would likely want to prevent but most of us actually didn’t mind our vivid dreams. The roundtable discussions were informative, thought-provoking and engrossing. I learned a lot, especially from the parents of my ten-year old BFF. Their past struggles were my current struggles and their current struggles would be my future struggles. I also learned a lot from the advocate from Wake Up Narcolepsy. His 18-year-old grandson has narcolepsy & cataplexy. He shared with us the challenges of managing childhood narcolepsy that eventually evolves into teenage narcolepsy, many of which I had never previously considered. The process of transferring from a pediatric patient to an adult patient is almost like starting from scratch with a completely new doctor. If you’re lucky, records are transferred but that’s about it. What will be close to fifteen years of personal information that we will eventually share with Dylan’s current doctor will be lost once he becomes an adult. University and college also present new challenges. Apparently six of the fifteen universities his grandson applied to refused him entry into the school because of his dependency on Xyrem and their strict no tolerance drug policy. This seemed like a gross violation of civil rights and a clear-cut case of discrimination so naturally I assumed these were some small, unknown, backwards American colleges but sadly McGill was one of those six iniquitous schools. His grandson is now a student at the University of North Carolina and although they allow him to bring Xyrem into the school, they require him to leave it in a locked box at the health centre. This means that every night when he wakes up to take his second dose, he has to get out of bed, leave his dorm room and walk all the way over to the health centre across campus. On one occasion he actually passed out before he made it back to his dorm and ended up sleeping outside all night. I made a mental note of my inevitable future fights with Dylan’s university of choice. I’m confident I’ll win but it’s yet another seemingly unnecessary battle I’ll have to suit up for to do right by my boy. (Luckily I have the email addresses for all of the deans at all of the universities in Ontario for those of you who are familiar with my infamous battle against the York Region District School Board).

There was also much to be learned from the doctors. One of the things most narcoleptics wish for is the engineering of synthetic hypocretin to replace the missing neurons in our wondrous brains. However, much to our surprise and chagrin, the neurologist explained that replacing the hypocretin would not reverse all the symptoms nor would it serve as a complete cure. He drew an analogy to diabetes (sadly though, he did not pronounce it diabeetus as Wilfred Brimley would have and missed out on a potentially great comedic moment). Although diabetics are lacking insulin, replacing the insulin via injection is not a cure. The only real cure is a new liver. Similarly, the only true cure for narcolepsy would be a new brain. I haven’t asked Dylan, but I’m pretty sure he wouldn’t want to part with his mind grapes. Much like Adam in Untamed Heart who hopelessly clung to his broken baboon heart for fear he would stop loving his beloved Caroline, I think Dylan would refuse a brain transplant for fear of forgetting about his beloved mother. That and the fact that brain transplants aren’t yet a thing outside of sci-fi movies.

Another interesting tidbit of information I discovered was that everyone with the condition sitting at the revered narcolepsy table unanimously felt better when they stuck to a strict paleo type diet. I have asked several doctors about changing Dylan’s diet in the hopes it would have some positive effect on his symptoms but I was always told there was no evidence to suggest it would. However, evidence by doctor standards is different from evidence by laypeople standards. Just because there haven’t been any published studies proving there is a link between food and the symptoms of narcolepsy doesn’t mean there isn’t a link. It just means one has yet to be proven. A change in diet is something relatively simple to implement and surely much safer than all the experimental drugs we’re pumping through our bodies. I can easily try the paleo diet for myself but it will be mission impossible to pull D from his steady diet of milk and fishy crackers. Nonetheless, I marked it on my to do list for an older Dylan, right alongside learning to swallow pills, taking Xyrem and taking exceptional care of his elderly mother when she’s old and senile.

The entire workshop ran from about 1pm to 6pm. The irony of asking a room full of narcoleptics to stay awake and attentive for five hours straight was not lost on anybody. It’s possible I may have dozed off for a moment or three. In contrast, the insomniacs had no issues in this regard.

Days 2 & 3:

Copious Note Taking

The next two days were filled with lecture upon lecture by doctors, scientists, clinicians, researchers and students. Some sessions were quite educational, others were far too technical. I attended all of the session related to narcolepsy and/or pediatric sleep, occasionally sneaking in a nap or two in my hotel room when the schedule permitted.  My favourite session was one called Clinical and Basic Science Perspectives on Narcolepsy. During this hour and a half session, doctors took us through the latest developments in narcolepsy research. They referenced a fascinating case study where a severely narcoleptic & cataplectic woman who had a small section of her brain removed due to an unrelated illness saw a significant reduction in her narcolepsy symptoms following surgery. Interestingly, although the brain surgery was deemed unsuccessful because it left her with a host of undesirable side effects including memory loss and speech impediments, the woman considered the operation to be a massive success because her narcolepsy symptoms were markedly improved. This perfectly illustrates just how debilitating narcolepsy truly is. People would rather sacrifice their memory and communication abilities than endure the frustrating symptoms of narcolepsy & cataplexy. In fact, according to one of the doctor’s presentations, narcoleptics experience a quality of life that is as poor or worse than patients with Parkinson’s disease, epilepsy or sleep apnea.

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The Cole’s Notes

Overall, the weekend was a great success. I got to mingle with sleep experts from across the country, I received some helpful suggestions from a clinician who herself has a narcoleptic son, I finally met some fellow narcs as well as parents of narcs,  I got insight into the current state of research both from a medical and pharmaceutical perspective and most notably, I was told I look like a princess (fittingly, a princess that is famous for sleeping).  I look forward to attending the conference again next year when all of the presentations will centre around the newly discovered cure for narcolepsy.


2 thoughts on “Rollin’ with my Homies

  1. I do enjoy your writing style, thanks! Your conference sounds like the opportunity of a lifetime. It’s so wonderful and important that patients, clinicians and researchers can listen to one another. It’s certainly not the first time that such professionals learn that the symptoms they find most necessary to try to fix don’t jive with patients’ experience of their disorders.

    The sad part from my perspective is that the disorders covered at your conference — sleep apnea, insomnia, restless legs and narcolepsy — didn’t include circadian rhythm sleep disorders! You mention that the disorders all had in common that it can take a very long time to identify — diagnose — them. I wonder if my five decades represents a record. Fortunately I’m likely to hold that record, as internet searches now allow most sufferers of all but the very most rare conditions to self-diagnose and find support groups. That makes it a lot less disastrous that doctors generally know and understand so little. A formal diagnosis may be needed for school, university and work accommodations, but the patient’s knowledge makes life so much better during the wait (fight) for that formality.

    Yes, doctors receive shockingly little education on the topic of sleep. One statistic sticks with me; I hope the survey will be repeated now, 25 years later, to see the improvement, if any. A survey in 1990–91 of 37 medical schools in the US showed that sleep and sleep disorders were “covered” in less than two (2) hours of total teaching time, on average.[1] On average! That probably means zero hours for most schools. In another survey, in 2002, more than 500 primary care physicians self-reported their knowledge of sleep disorders as follows: Excellent – 0%; Good – 10%, Fair – 60%; and Poor – 30%.[1] However much improvement there might have been since, it is not enough.

    1. Benca RM (March 2005). “Diagnosis and treatment of chronic insomnia: a review”. Psychiatr Serv 56 (3): 332–43. doi:10.1176/ PMID 15746509.


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