4 posts tagged “MDD”

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.

………………………………………………………………………………………………………………………………………………………………………………

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.

………………………………………………………………………………………………………………………………………………………………………………

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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Meet Doug from the PatientsLikeMe Team of Advisors

Posted February 19th, 2016 by

We’d like to introduce you to Doug, another member of your 2015-2016 Team of Advisors. Doug is an actor, teacher and writer living with major depressive disorder (MDD). He’s been tracking his health on PatientsLikeMe since 2008.

Doug feels there is a lot of stigma surrounding the term “mental illness,” and shares that one of his biggest challenges has been opening up about his depression. He believes that MDD isn’t talked about enough in society: “We’ve got to figure out how to encourage the sensitivity and understanding.”

Here, Doug describes a vivid picture of what it’s like to live with depression and offers some advice to other patients: Find others living with your condition, and know that you’re not alone.

What gives you the greatest joy and puts a smile on your face?

My kids, their antics and achievements, their growth, even their mistakes, are what get me up in the morning. Drawing closer to seeing or speaking with them is probably my greatest motivator. It’s funny, though; I wouldn’t label what they bring as ‘joy,’ per se. When you’re living with chronic Major Depressive Disorder, and when you’re treated with an affect-flattening medication like lithium, joy all but falls out of your vocabulary. But my kids are definitely the closest I come. My extended family, my girlfriend, creating theatre and my faith all fall in close behind.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Perhaps the greatest obstacle I’ve had in living with depression, aside from considering self-injury or enduring an episode itself, has been personally and openly admitting that I suffer from what society and medicine deem a “mental illness.” Though it may help some folks (docs) with classification, I usually find it a fairly useless, divisive, overly-general, stigma-laden label. Yeah, it may be practical to use medical terms to initiate basic understandings, but I now try to move other folks I affect or who affect me past the crappy designations and into how the disease (and the medication/side effects) actually manifest themselves in my life. Moving past the ill-connoting “mental illness,” with its lurking suggestions of some sort of moral turpitude, loss of touch with reality and personal weakness or inability to perform/produce, I go into the specific realities of this dad’s/teacher’s/actor’s/partner’s life: how I deal with occasional flat effect, distraction and crying episodes; what Electroconvulsive Therapy actually consists of and why it had to be administered to me; and the prescription side effects like word-fishing, tardive dyskinesia and even ED.

When people are moved past the general and abstract toward the specific and concrete, I think we begin to enter productive territory and can make inroads. We’ve got to figure out how to encourage the sensitivity and understanding that come with specificity.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I’ve tried for figurative examples of “normal” human experience that people could magnify and see themselves in, but it usually doesn’t work. I often simply describe my own experience…

Imagine a trained general practitioner making fun of you for your “pretend” gut ailments, asking if you want to “man up” or whether he should prescribe you some Prozac. Imagine trying to choose the former when what you really need is the latter. Imagine suffering the consequences of foregoing treatment…

On the slide down, imagine crying in four-hour stints. Imagine trying to convince your three kids that Daddy’s crying has no relationship whatsoever to them, to what they’re doing, to their innate value or to your profound love for them. Imagine being so distraught that you don’t sleep for a month. That you forego food. That you lose 30 pounds.

Imagine not wanting to wake up. Ever. For weeks. And Imagine feeling that way even when no horrible incident, no traumatic scene, no injury had prompted it. Imagine never wanting to wake up, and for no particular reason.

Imagine not wanting to bathe. Imagine deriving no comfort from the warm water streaming down your body on a cold winter’s day in the shower when you finally get there (you’re mother’s been urging for a couple days now, and finally actually led you by hand into the bathroom).

Imagine finding yourself on a psychiatric ward, where they’re weaning you of meds so as to treat you with ECT. You learn your parents delivered you there (you’re 49 years old and live some 10 hours from them); you don’t even remember them delivering you (motivated forgetting).

I could go on, but I think this gives you an idea. Folks who haven’t done significant time with depression probably don’t understand these illustrations, but they may find a point to connect, or, at the least, be struck by such a profoundly different human experience. These examples, if nothing else, begin to point at the devastation depression creates.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Get armed with info and understanding. Do your homework. Find real, live people like you who deal with the same condition. Talk with them, listen to them, come to see that you don’t stand alone and that there are others who understand. Internet is good, but real life is better. Dive into your faith.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has done three major things for me. I had been logging basic baseline mood and other information on a smaller website when I learned of PatientsLikeMe. The stuff I’ve laid into the site chronicling my illness over the past eight years has served as a solid longitudinal record of the trajectory of my depression and PTSD, a record arguably more significant to me than my formal medical records. In addition, PLM has provided community; through site content and interaction with my fellows, I’ve gained insights and support. I’ve also been able to offer my own impressions and understandings in public forum, and, finally, through working on the PLM Team of Advisors, I’ve been prompted into deeper advocacy and peer support.

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Getting to know our Team of Advisors – Kitty

Posted June 18th, 2015 by

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others.

About Kitty (aka jackdzone):
Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding out what patients’ unmet needs are.

Kitty on patient centeredness:
“To me, it means that it’s all about the patient from start to finish. In the beginning, it’s talking with patients, conducting patient surveys and reading any written material that would be helpful in order to find out what patients are most wanting and needing and not getting. In healthcare, this would translate to a doctor engaging with a patient in a way that is especially helpful for the patient. This may require asking a question a certain way in order for the patient to answer truthfully and to feel that their doctor really cares about them as a person. (I was fortunate enough to have had one primary doctor like this for many years and it makes a huge difference!) It puts the focus on that particular patient at that moment and requires empathy and understanding (and not just going through the motions) in determining what is best for that patient.

In the area of research, the same is true. Research of this kind is done to improve the client’s physical and/or mental life in some way. Any research should be done with the patient’s well being at the forefront. Questions should be asked in a way that will lead the client to be very open about their experiences. The client should be fully informed regarding any research in which they participate and be asked at the end if there is anything that has not been covered that they have questions about. They should be informed of the results of the research afterwards and perhaps be allowed to give their thoughts about the findings.”

Kitty on being part of the Team of Advisors:
“A year ago, when I read that PatientsLikeMe was putting together a Team of Advisors, I didn’t hesitate to apply. I wanted to be part of something that had helped me a great deal during a part of my life when I was the most depressed and struggling. When I was eventually chosen to be on the team, I was and have continued to be very honored. I feel such a strong affiliation with PatientsLikeMe and want to be able to help others in anyway that I can. During this past year, I’ve been able to participate in helping to compose a patients’ rights handbook and be interviewed by a researcher regarding how patients view clinical trials. Being on the Team of Advisors has given me the chance to become an advocate for myself and others. It is something that means a lot to me and something that I enjoy doing–and I think it’s something I will continue to do in whatever capacity I can throughout my life.”

Kitty on helping others:
“From the very first day that I joined PatientsLikeMe several years ago, the website has meant a great deal to me. Most of the people in my life did not really understand what I was going through. At times, they thought I really could have done more, but that I was just being lazy. When you are suffering from MDD, this viewpoint from others only increases your depression. I didn’t know where to turn. What I found on PatientsLikeMe were others who were also suffering from MDD and were experiencing the same symptoms and challenges as myself. As I began posting on the site about what I was going through and how depressed I was feeling, I felt somewhat better just by being able to express myself and even more so when others with MDD began reaching out to me with advice and encouragement. I can really say that this made all the difference to me in the world.

After awhile, I made it a point to also reach out to encourage others. I noticed that some people seemed to be very depressed on a daily basis with very little hope and I felt I had to reach out to them in some way. I began responding to their posts. A lot of times I just said that I was sorry that they were feeling bad, as I didn’t know what else to say. I hoped that just this much would encourage them. I didn’t want to be overly upbeat if that wasn’t how they seemed to be feeling, because I felt this was a disservice to them. I felt that the more I could just be there for them right where they were and with how they were feeling the more I could be of help.”

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