5 posts from July, 2016

Patients as Partners: Doug on learning about himself through others

Posted July 27th, 2016 by

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.”

Steve can barely move. Wants to, but he can’t.

A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare.

Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t do ibuprofen anymore because of his kidneys; afraid of opioids, and can’t afford them, anyway. Steve’s only relief is a single beer, Sierra Nevada Pale Ale when he can afford it, each afternoon.

So I’m surprised when I overtake him on my walk to work last Tuesday morning, three blocks from home. Halting gait, for sure, but no cane, moving deliberately down Warren Street.

“What’s up? You okay?” I ask, hoping to learn what prompted his sojourn.

“Fibro’s been lettin’ up lately, and I’ve got a little extra cash,” he says. “Headin’ for the bike shop.”

He reads the question on my brow, and, before I can vocalize, explains, “I’m buying a used bike.” My question persists; I try to get my head around the thought of crippled-up Steve flying up a trail, or even simply coasting down the street.

“Think I might be able to ride again; figured it’d be more fun sittin’ my butt down on a moving bike saddle than sittin’ still dying on a fold-up chair.”

He smiles, wipes his brow, looks in the sun’s direction, squinting at the mountains. We move on slowly, chatting, down Warren toward town. I can tell he’s in pain, but I can tell he’s determined. And I can tell he’s excited.

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Winston Churchill’s “black dog” has pursued me since 1998, when I was thrust into my first major depressive episode by worries surrounding Y2K. I lost twenty pounds, I cried the night through in lieu of sleep, I had to daily reassure my kids that they weren’t the source of Daddy’s sadness. Couldn’t work, and confined myself to the bedroom. I held out on professional help for six months (macho bullpucky), on medical treatment and pharmacotherapy for eight. I lost a full year of my life that first time to ruminative inactivity. A year of my marriage, a year of my kids’ childhoods.

As the meds took hold and therapy helped me reclaim my confidence, I became a student of major depression. Learned about neurotransmitters, primal brain centers, PET scans, and diet’s effect on mood. Joined online support communities and found a site for logging my symptoms and other details. I sought out discussion of historic and current medication protocols and information on emerging electric/electromagnetic therapies. I even found academic papers that argued depression could be an evolutionary adaptation. In short, like scores of other PatientsLikeMe members, I became an expert on my malady.

But my Tuesday morning stroll with Steve raised big questions. Did I really need to be as expert as I had become? (Did I need even to be on the Team of Advisors?) My family had been strained enough dealing with the depression itself. Did the addition of a couple of hours, isolated, reading all of the latest on mental illness every morning provide more benefit than if I’d just spent that time with my wife or kids instead?

Steve, when presented with an opportunity, elected to act contrary to his disease. To ignore it. When his joints allowed, and while he still had reasonable strength and balance, he got back on the proverbial horse…or mountain bike. He didn’t spend the regained time, comfort, and strength his “remission” afforded learning more about his disease; he sought to regain a part of his former life, a part that provided him great pleasure. In my efforts to master my disease and feel like I had some control in a miserable situation, had I unknowingly shot myself in the foot?

Depression had to some degree taken me away from life; had studying the condition ad nauseam simply moved me even further from it?

I’ve been “coming back” now for some six years, after being gravely injured by a drunk driver, losing my marriage (and ready access to my three children), and enduring a years-long emotional decline that saw me into psychiatric hospitalization and a couple months’ worth of electroconvulsive and outpatient therapy. The post-ECT psych-drug regimen they’ve got me on now does a number on my emotional range (what range?) and plagues me with crappy side effects, and I’ve continued research to see how to abet my situation.

But I’ve increasingly become more Steve-like, too. Ventured back into relationships and found a wonderful partner. Travelled independently (first time in eight years) to NYC to see my daughter and her husband last fall — I even attended my first theatre in a decade (I had formerly been a professional actor). I’m a depressive, yeah, but I’ve decided — and Steve reinforced that decision — not to let that label serve as my singular definition. I’m still trying to start a bipolar/depression support group, still counseling and messing with my pharm cocktail, and still working with PatientsLikeMe as an advisor. But I’m trying not to succumb or obsess.

I believe other PatientsLikeMe folks might also benefit from auditing their day-to-day and learning where they’ve allowed their (totally understandable) prepossession with their condition to eclipse possibilities for a richer life. After Steve rearranged my thinking the other morning, I went home and read a one-man play I’d heard about from friends. I decided to perform it next fall. I’m working on rights, finding crew, putting together an agreement for using a local space, even thinking about the possibility of performing it in schools or on tour.

The fact that I’m depressed will shape the way my experience unfolds, but obsessing over it won’t preclude that experience altogether. I’m electing to dethrone the disease and reassert a part of my former self.

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Steve mounts his new used bike outside on the street. He’s fragile, even tottering, as he balances. He’s really slow, and I worry that he’s not wearing a helmet. But he moves determinedly up and down our block. He’s obviously in considerable pain, and his forehead is shiny with sweat. And the smile on his face tells me he’s undeniably happy, despite the challenges. So am I. I dive back into scoring my script.

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Sleep health: An interview with Dr. Lisa Shives from the National Sleep Foundation

Posted July 20th, 2016 by

 

How much do you know about sleep health? We’re digging deeper into how sleep relates to chronic illnesses in a new collaboration with the folks at the National Sleep Foundation (NSF), who are dedicated to improving health and well-being through sleep education.

To kick things off and share what NSF is all about, we sat down for a chat with board member Dr. Lisa Shives. Dr. Shives has extensive clinical experience treating sleep-related disorders like sleep apnea, insomnia, narcolepsy, restless legs syndrome, and circadian rhythm disorders. See what she says below about the role of sleep in medicine and how sleep quality affects other health conditions.

Tell us a little bit about what you do and how you became interested in the study of sleep.

I became interested in sleep disorders because I was so sleep deprived as a medical student and resident. That experience made me take sleep very seriously and deepened my empathy for patients with sleep problems.

What do you think is the biggest misconception about sleep disorders?

I think the biggest misconception is that people think that people with “sleep problems” (usually meaning insomnia) are just anxiety-ridden or Type A personality types. — that they just need to relax and get into some good bedtime habits and then they would sleep fine. For people who do not have sleep/wake problems, sleep is the easiest thing in the world. They can’t understand how elusive a good night’s sleep can be.

You’ve managed clinical research studies that focus on sleep disorders, the effects of diet and exercise on sleep, and metabolic and cardiovascular abnormalities associated with sleep disorders. What can you tell us about how sleep disorders affect other conditions?

We have known for years that sleep apnea increases the risk of cardiovascular disease, but now we have evidence that short or poor sleep for any reason also increases the risk of diabetes and weight gain due to the metabolic disturbances that are caused by poor sleep.

For you, what’s the most interesting part of your work? The most interesting discovery that’s come out of your work?

For me, the most interesting recent discovery is that poor sleep or even sleeping at the wrong time deregulates metabolic and hormonal processes. It’s a major contributing factor to the chronic conditions that make up the bulk of the disease burden in modern society: cardiovascular disease, hypertension, diabetes, and obesity.

What role is the study of sleep currently playing in medicine? And how do you see that evolving in the years to come?

I am happy to report that I see a growing awareness among my colleagues in the other fields that sleep is just as important as diet and exercise.

What’s your best piece of advice for patients living with sleep disorders alongside other chronic conditions?

Don’t accept that nothing can be done about your sleep problem. Just because it is common for people with your medical problem to have a sleep disorder does not mean that nothing can be done to improve your sleep/wake cycle and how you feel when you are awake.

Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we discovered that a bad night’s sleep is the norm for people with health conditions and that lack of sleep affects them far more than the general population. What are your thoughts on this?

As I said, just because sleep disorders are common among people with certain conditions, that does not mean that the sleep/wake cycle cannot be ameliorated. My advice is that patients should talk to their primary care physicians and sometimes seek out a trained sleep specialist to help them sleep better and feel more alive in the daytime.

 

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