The Story of My Friend Doug, and The Problem of Time
By David E McCarty, MD, FAASM (but you can call me Dave)
I was speaking with an old friend yesterday. And: yes, the friendship is old, and he is, too.
Dr. Doug Moul retired from the practice of Sleep Medicine from the Cleveland Clinic, two years ago, but I’ll always remember him for the role he had in my development as a clinician, back in the early days.
Back at LSU Shreveport.
Doug Moul is one of the smartest men I’ve ever met.
He started his educational journey as a philosopher, chomping through tomes by the likes of Kierkegaard and Heidegger like they were Stephen King books, and then casually discussing them in conversation, as if it was an episode of Friends.
If Doug played three-dimensional chess with Mr. Spock, I’d lay odds on Doug.
It was Doug who taught me the importance of time.
About The Problem of Time.
I’ll get to why that’s important in a minute.
Back then, I was following a trail that I’d sniffed, linking Vitamin D deficiency to sleep disorders. As just about everybody knows now, Vitamin D is actually a hormone, and it does all kinds of great things for us, in practically every organ system of the body. It does what it does by interacting with the nucleus inside cells, changing how they behave.
Chronically low Vitamin D levels in children causes obvious changes in skeletal development and a clinical phenotype called Rickets.
Rickets: It’s NO PICNIC!
There’s illness in adults too, from being low in Vitamin D. It’s called osteomalacia.
The symptoms are nonspecific, but can include muscle soreness and body aches. If you don’t have enough Vitamin D around, the bones lose mineral content, and take on water, causing them to swell, just slightly.
Bones have a protective covering called the periosteum, which is almost like a sprayed-on plastic coating. The periosteum has a lot of nerves in it, and when it gets stretched or damaged, it hurts like an aching toothache. You remember the last time you barked your shin on that stupid glass coffee table? That’s a direct hit on the periosteum of your shin bone. That’s why it hurts so darn much. There’s no padding.
With osteomalacia, the bones don’t change shape, or at least, not until the stress fractures start. With osteomalacia, diffuse muscle soreness and nonspecific bone pain are the rule.
Let’s stop for a moment. Ponder the significance of those symptoms. Diffuse muscle soreness. Nonspecific bone pain.
Think what those symptoms DO to a person. Body mechanics are different, when you’re sore. Exercise is a problem. You have to wonder…
If the pain is bad enough to disrupt your sleep, wouldn’t nonspecific sleep-wake complaints…I don’t know…flourish?
At this point, it may be suddenly occurring to you that the words insomnia and fatigue might be pretty likely to come out of the mouths of any person who is suffering with osteomalacia.
You’d be exactly right, dear reader. Right on the nose.
This observation was very interesting to the younger me, trying to help people find their way through a territory that felt (to me anyway) dark and mysterious.
The notion that sleep-wake complaints can come from multiple sources felt like an important insight, indeed.
So I started to follow the scent.
I began to ask my patients, rather routinely, if nonspecific musculoskeletal pain impaired their daytime experience, or their sleeping experience. And when I say “rather routinely,” what I really mean is that I became obsessed with this question. Anytime somebody would answer “yes,” I’d ask them to go get their blood drawn.
Because, you want to know, you know?
You sort of…have to know.
At that point in time, LSU had not switched over to an electronic health record, not yet anyway. That wouldn’t come for another 2 years. At that point in time, therefore, I kept a ledger book, in order to track all the labs I had requested.
The paper results sometimes got lost, you see? Big piles of paper, floating around the hospital. Ending up in piles. Stuff always gets lost in these types of administrative transfers. I wanted to make sure I didn’t lose track of ANYBODY.
I hated the idea of possibly missing out on an opportunity to intervene on something treatable.
Here’s the reason I’m talking about the tracking system: after about a year of carrying that little black and white composition book around, I started to see some patterns.
My “screening question” was turning out to be pretty darned effective! Over half of the patients I tested using this crude system met the formal definition for Vitamin D deficiency.
Wow. That’s useful information!
Wait, though. It gets better.
See, when you drilled down on specific populations, the rate was much higher. Much higher.
Here’s what I mean: For obese persons who self-identified as African American, the rate of Vitamin D deficiency was over 90%.
This thought blew the top of my head off, flipping it into a triple-summersault, landing thickly back in place at a slightly skewed angle, accompanied by an unhealthy-sounding PLOP!
I felt like shouting it from the mountaintops! One simple screening question (DO YOU HAVE PAIN?) was capable of predicting the presence of a treatable contributor to someone’s sleep-wake complaints!
I couldn’t believe how important this was!
That was when I started making sure that ALL of my patients were vitamin D-replete.
That was when, before my eyes, I saw some of my patients experience miraculous transformations.
I am not making this up. Some of my patients felt as though they’d been born again! Muscle pain: improved! Bone pain: gone! Sleep: more satisfying!
Then came the woman who was thought to have idiopathic hypersomnia, whose sleepiness went away after we normalized her Vitamin D level.
That was when I thought I was going to flip a gasket.
Could Vitamin D deficiency cause excessive daytime sleepiness?
It’s embarrassing to admit how obsessed I became with this question after that case, which I wrote up in JCSM. I became convinced that, somehow, I’d be able to find an answer in my little composition book. I figured that it would be relatively easy to plot a relationship between two variables and see if there is any correlation.
The two variables, of course, being Vitamin D level and Epworth Sleepiness Scale scores.
Most folks know by now that the Epworth is a commonly-used numeric scale for describing daytime sleepiness. My hunch back then was that those with the most severe deficiency would be the sleepiest. In my giddiness, I imagined I’d see a linear relationship (lower levels = more sleepy).
That’s not what the data showed, though. What the data showed was something much, much more complex.
And it seemed to depend on race.
When we analyzed the data, we found that African Americans had lower levels overall (compared to white patients). We also found that the prevalence of identifiable deficiency was much higher in African American patients. This wasn’t a surprise. Skin with darker pigment must be exposed to sunshine for a longer time to make Vitamin D, compared to skin with less pigment. It’s well known that having a dark complexion is a risk factor for developing deficiency, in other words.
So: expected revelations, these.
Here’s the part we didn’t expect: African Americans were sleepier than white patients. Significantly so.
And not only that: the degree of sleepiness statistically correlated with the Vitamin D level in African American patients (the way I had hypothesized), but NOT in white patients, where there was no correlation whatsoever.
That was when I started to feel the steam coming out of my ears. What the heck was going on? Why would the sleepiness coming from Vitamin D deficiency depend on RACE?
Now we can get back to my friend, Doug.
This is the part where I’m getting back to what my philosopher friend taught me about The Problem of Time.
“Your problem isn’t your data, your Problem is Time,” he said, stoically, enigmatically. Like Spock.
Doug is a straight-talking person, and I like that about him.
“Ummm,” I explained.
“You’ve only got one blood sample, right?”
“Right.”
“Well, what happens to Vitamin D levels over time?” he asked.
“Well, I imagine they go up and down, based on season,” I answered.
“You think probably higher levels in the summer, lower in the winter?” he prodded.
“Well, that’s the rule, that’s what it says in the textbooks,” I responded. I was beginning to smell something that whiffed distinctly of my own ignorance.
“How do you know what is actually happening with your patients?” he asked.
“I don’t,” I answered.
That day, in clinic, I had a revelation. It happened like this:
Me: How are you doing today, Samantha?
Samantha: I’m doing fine. Boy is it hot outside! I’d say its 110 degrees in the shade out there. I almost died coming in from the parking lot!
Me: Yeah, it’s tough to be outside on a day like today.
Samantha: Doctor Dave, I’m fat and I’m black! I don’t ever go outside, particularly when the sun’s out!
I almost fell off my chair.
Samantha just handed me a piece of the puzzle, and I wouldn’t have seen it, if it weren’t for the discussion I just had with Doug.
Samantha made me aware of something I’d never actually considered before:
If being heavy and African-American in Shreveport, Louisiana makes for different behavioral choices when the sun is out and the weather gets hot, this could explain what we found.
The missing element was The Problem of Time.
Perhaps the reason we found a signal connecting Vitamin D levels and sleepiness in our African American patients was because they were most likely to be deficient, 365 days a year.
The only way to prove it would be to somehow find the funding for serial testing of a large population, over a long period of time. I wrote a grant proposal, got some money, but I was too inexperienced a researcher to pull it all together, and I got de-funded.
So I never got to find out the answer.
Such is life.
Timing Is Everything
Sometimes it matters when you collect your data.
The element of time is important in Sleep Apnea, as well, dear reader.
That’s where I’m going with all of this.
There are two flavors of Sleep Apnea—obstructive and central—and they coexist to varying degrees between individuals. That’s all well and good.
Here’s where things get a little weird.
Sleep Apnea is not static—on the contrary, it is remarkably fluid across an individual’s lifetime. The two components of Sleep Apnea are independent, but also linked to each other. Each can change as a result of lots of factors: time, altitude, and interaction with other health problems.
Even the treatment itself can create changing results over time!
With so many variables—so many moving parts--the individual journey of Sleep Apnea is always unique, for each person who makes it. No two journeys are exactly alike.
So, here’s the point of all this: during my six years of practice at Colorado Sleep Institute, I was actually able to study Sleep Apnea the way I wanted to study Vitamin D, but never had the chance. At CSI, you see, the equipment team was integrated into the same charting system that the clinicians used.
This is an important point, and I’ll explain why.
Your standard clinical operation will typically use standalone durable medical equipment companies (outfits like Apria and Lincare) to get their patients set up with equipment. The equipment company is very interested in having access to usage data, because they are required to show evidence of “compliance,” in order to be paid by the care plan.
Most providers will therefore get a glimpse of the data in the form of a printed report, typically capturing a 30-day timeframe. They will get a glimpse of this so they can discuss it with you at your office visit.
In this sort of system, if you and your provider decide to make a change, your provider has to send an order to Apria (or Lincare, or whomever), and someone on the other end of the fax machine has to remember to put it into the task list for their respiratory therapist, to make the change when she comes in for her shift on Friday. Or whenever.
If you’d like to follow up on how that new setting feels, you are welcome to make another appointment, and you can do the whole thing again.
The process is cumbersome and involves administrative transfers, and it’s not very satisfying for the patient. Or the provider, for that matter.
At CSI, though, the model was completely different.
At CSI, I had something I’d never dreamed it was possible to have:
24-7 access to real-time PAP data, 365 days a year. I mean.
And almost EVERY PATIENT I CARED FOR WAS ON IT. I could log in to my computer at home, anytime I wanted, and I could check results or adjust pressure settings. And then I could follow up and look at the data, myself, to see what happened.
It was positively intoxicating.
I could finally figure out how this disease WORKED.
It still makes my heart beat fast to remember what it felt like: I had done it! (for Sleep Apnea, anyway).
I had finally solved The Problem of Time!
That was when I became obsessed with the process of making adjustments.
Each time I made a change, I obsessively followed up with a two-week data download. No need, anymore, for my little ledger book—the electronic health record never forgets! After each change, I made it a point to provide feedback about the change, so the patient knew what happened.
I wanted them to understand the reason, so that they would better understand the outcome.
My ritual was this: if the numbers looked better, I’d notify the patient by letter. If the numbers didn’t improve, or were worse, they got a phone call, leading to a new setting and another two week data check.
For this process to work, my patients had to do more than follow orders. They’d have to use their brains to help me sort through their problems, so that we’d be more likely to find a solution.
Hence: The Curriculum.
At the very beginning of my relationship with a patient, I’d teach them the curriculum that’s now captured in Empowered Sleep Apnea, the book. You have to start with the patient feeling empowered, you know? They’ve got to have a sense of agency.
Anyway, once the patient was comfortable with what we were trying to do, and why we were trying to do it, we’d put our heads together and figure out how to do it the best way, for them!
That’s when we’d go adjustin’…
In this manner, I got to walk side-by-side with my patients, accompanying them up to the mountains, down to the sea, into and out of atrial fibrillation, along the ups and downs of diets, walking with them the whole way, honing in on the most important element: their narrative.
And, because the patient always knew what we were looking for, this process empowered each of them to contact me, if something should go off the rails.
As I’ve said in a prior essay: patient centered medicine is a self-correcting system, and it favors the patient.
So, that’s the story of my friend Doug Moul, and The Problem of Time.
Part of the solution to The Problem of Time is to BE PRESENT. 24-7 access to continuous data gave me that access, for sure.
It’s not enough to just SHOW UP, though. It’s more than just accompaniment, it’s more partnered than that. It’s being present whilst also being receptive to the messages that matter most to the patient.
It’s being present, for the long haul, in the company of the patient’s NARRATIVE.
That’s the ticket. That’s the solution.
Thank you, Doug.
My old friend.
(Tee hee!)
Recommended Reading
McCarty DE. Resolution of Hypersomnia Following Identification and Treatment of Vitamin D Deficiency. J Clin Sleep Med 2010;6(6):605-608. To Blow Your Mind and access this paper, click HERE!
McCarty DE, Reddy A, Keigley Q, Kim PY, Marino AA. Vitamin D, Race, and Excessive Daytime Sleepiness. J Clin Sleep Med 2012;8(6):693-697. To view reality a little differently, access this paper HERE!
I think it was fun that this paper generated a lot of interest. It was mentioned as the first study to document a link between Vitamin D deficiency and Sleep Disorders. So y’all can just call me Scoops from now on, if that’s cool.
See: Study is first to find significant link between sleepiness and Vitamin D. Eurekalert! AAAS
It was also written up in (of all places!) Glamor magazine!
McCarty DE, Chesson AL, Jain SK, Marino AA. The link between vitamin D deficiency and sleep medicine. Sleep Medicine Reviews. 18 (2014) 311-319. To read my manifesto on Vitamin D and SLEEP, click HERE!