Wednesday, September 29, 2010

Staying Well - Part II

Yesterday's post focused on a very unusual 2005 study by Sarah Russell, in which she actually asked 100 "successful" bipolar patients what worked for them. The patients' keys to managing their illness are the type of things we advise each other in support groups and other venues all the time, such as maintaining a strict sleep schedule, being microscopically attuned to mood and energy levels, managing stress, taking strategic down times, and so on.

The one knock on Russell's study was that her inclusion criteria relied solely on the patient's own self-reporting of their wellness. Researchers tend to be sticklers for quantifiable data, and a very recent study published in Clinical Psychology and Psychotherapy (abstract here) addressed that concern.

The researchers found 33 Canadians with bipolar who qualified as "high functioning" according to a number of rating scales, then interviewed the patients individually or in focus groups. The authors of the study openly acknowledged Dr Russell's work, which they cited as the only previous qualitative study that has examined stay well strategies by those with bipolar. (Pause for a brief second to consider the implications of that statement.)

To no one's surprise, the patients in the study identified very similar stay well strategies to those in Dr Russell's study, which the authors broke down into six key areas, namely:
  1. Sleep, rest, diet and exercise
  2. Ongoing monitoring
  3. Reflective and meditative practices;
  4. Understanding bipolar and educating others
  5. Connecting with others
  6. Enacting a plan.
To go into more detail:

Sleep, rest, diet and exercise

According to one patient in the study: "I make sure that I get to bed by 10:30–11:00 every night. And a routine is really important." The researchers also identified "waking rest" such as lying down or watching TV, which "enabled people to meet social and work responsibilities."

Sleep and rest are tied into diet and exercise, as all have to do with maintaining a sense of mental alertness. One patient reported that she avoids heavy foods when she's down; another that "being active really works for me." As the authors observed: "These strategies are inexpensive, within one’s control and reflect common sense."

Ongoing monitoring

According to the authors: "Participants described the importance of learning to pay close attention to their moods and involvement in activities, in order to judge when to make changes." Thus, "individuals would spread tasks out over the week, cancel social engagements if necessary and maintain some unscheduled time."

As one patient described it:

To me it’s an ongoing basis where it’s like a ship that’s always righting itself, you know. Or when you’re driving, you’re sort of correcting as you’re trying to drive in a straight line. So those were the things that I see, and then I make minor adjustments and hopefully I don’t have to make major adjustments because I’ve been always making these corrections.

Reflective and meditative practices

These ranged from yoga to praying to journaling. One patient's Tai Chi practice, combined  with self-monitoring strategies fostered a "zone of stability" that allowed her to manage her illness well, despite experiencing symptoms.

Understanding bipolar and educating others

The successful patients in the study engaged in a variety of practices, from reading to attending support groups to charting their cycles to learning new skills from practical talking therapies such as CBT. In addition, the patients shared what they learned with family and friends, which in turn enabled them to become more supportive. As one patient explained:

I think my husband is really important because he will notice a depressive episode coming on before I will and he can tell by my body language. He says I walk differently. I carry myself differently and there is a look in my forehead and my eyebrows. He picks it out before I do. . . . He makes me aware of it and [then] I will just become more diligent about exercise, eating right, more sleep, and trying to . . . I guess, reassign priorities.

Connecting with others

Successful patients reached out in various ways, from contacting friends to finding formal support venues to volunteering to seeking professional help. As the authors explained, these activities are not unique to people with bipolar; rather the difference is the impact that these social interactions had on maintaining wellness especially during times of stress.

Enacting a plan

The patients in the study acknowledged the likelihood of things going wrong, and accordingly they had various arrangements in place, ranging from WRAP plans to informal understandings with friends and family.

Final word

The authors expressed the hope that once clinicians became aware of these stay well skills, they could tailor their therapies accordingly. But the successful patients in both Dr Russell's study and this one did not wait for their clinicians to become enlightened. Yes, they did learn from their clinicians. But, more important, they figured things out themselves.

Trust me, "Knowledge is Necessity" is not just a title to a blog; it's a way of life.


Willa Goodfellow said...

WRAP plans?

And I didn't notice meds on this list. In my "noncompliance" research lately, I discovered one review of literature that suggested patients actually do a decent job of selective partial noncompliance, self-reducing meds when side effects become intolerable.

I don't know enough about bipolar I or schizophrenia to recommend partial noncompliance here, as you may have noticed in my recent posts -- and absolutely do not want to give stupid advice..

But gosh, I am now at the stage that if I complain to my doc that my meds aren't working, all she has left in her toolbox are things that would make me feel worse.

John McManamy said...

Hey, Willa. My noncompliance research from a few years back took me down some very interesting paths that really opened my eyes. So I'm very excited by your noncompliance project. It's wonderful that we're independently making the same kind of investigation and follow where it leads us, and I eagerly look forward to picking up this dialogue in the weeks and months to come.

Continued next post ...

John McManamy said...

Hey, Willa. This is part two. It's very interesting that you noticed that meds didn't feature on the list in the second stay well study. Likewise, in the first study, the successful patients assigned a very low priority to meds. Other things - such as managing sleep - were way more important. (But note that sleep can be managed by using meds.)

Selective noncompliance is an interesting strategy. If your pdoc is an idiot who doesn't listen, this may be the only way to go. But if you can find a doc who can work with you on a low or no meds strategy then you are in compliance.

A number of patients in the first study who didn't take meds regularly had some kind of backup meds strategy. If they felt a crisis coming on, they took a prescription med. This, of course, necessitated a very sophisticated mindfulness practice. The two studies gave these practices different names, but both talked about a heightened awareness to impending mood and other changes, then acting fast to nip the episode in the bud - usually with a non-meds approach, but sometimes going for a med.

More ...

John McManamy said...

Part III. Psychiatry is very stupid at distinguishing between getting well and staying well, and confuses both with stabilization. Obviously, in crisis, meds are a first option, and we don't quibble if the doses are too high.

But psychiatry has no answers to getting well and staying well. There is absolutely no database. When the meds don't work well, psychiatrists have nothing in their toolbox, like you said. This is unacceptable to me. Anything that works is good medicine, and psychiatrists need to get back to practice medicine. Medications and medicine are not synonymous.

More ...

John McManamy said...

Part IV. So, is selective noncompliance advisable for those with BP I or SZ? I have the same hesitation as you. We both make subtle and nuanced arguments, which may be lost on many people. Last thing I want is someone misinterpreting what I say, then going off their meds and suffering the consequences.

Yes, getting to low doses or no doses is something to shoot for, even against the advice of our pdocs, and our recovery tools can help us out. But certain people, through no fault of their own, may need to stay on Zyprexa or other heavy duty meds the rest of their life.

John Nash did eventually achieve remission from schizophrenia with no meds, but he also admits he lost 25 years of his life to the illness.

Could we have helped out John Nash, knowing what we do now? Say, stabilize him on meds, educate him in various recovery tools, and have him fully functional on low or no doses? Impossible to say.

No easy answers, but to borrow from you - we gotta keep asking the questions.