Hope and Recovery

Pat Deegan reflects on her own experience an shares about the need for hope in recovery:

He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.

When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.

Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.

Amen. Please go and read the whole post at her blog and spend some time poking around her posts.

NIMH acknowledges that antipsychotics worsen prospects for long term recovery

Mad in America
Mad in America (Photo credit: Wikipedia)

Thomas Insel, the Director of the National Institute on Mental Health comments on a recent study of the long term effects of antipsychotic maintenance for schizophrenics. The study looked at patients who discontinued antipsychotics compared to those who were maintained on antipsychotics.

…by seven years, the discontinuation group had achieved twice the functional recovery rate: 40.4 percent vs. only 17.6 percent among the medication maintenance group.

…antipsychotic medication, which seemed so important in the early phase of psychosis, appeared to worsen prospects for recovery over the long-term. … At least for these patients, tapering off medication early seemed to be associated with better long-term outcomes.

…It appears that what we currently call “schizophrenia” may comprise disorders with quite different trajectories. For some people, remaining on medication long-term might impede a full return to wellness.

Mad in America reports that this information has been around for years and the establishment has willfully ignored it. He adds that there’s also a better way to respond to psychosis.

The Open Dialogue therapy protocol delays the use of antipsychotics in first-episode patients, instead utilizing psychosocial support and selective use of anxiety-reducing benzodiazepines (e.g. Ativan, Klonopin,Valium) with the hope that patients can “chill out,” and get through their first crisis without ever going on antipsychotic medications. And if patients need to go on antipsychotics, the Open Dialogue protocol allows for them to subsequently try to taper from the drugs.

The results? “With this selective use of antipsychotics,” Whitaker reports, “Open Dialogue has produced the best long-term outcomes in the developed world. At the end of five years, 67% of their first-episode patients have never been exposed to antipsychotics, and only 20% are maintained regularly on the drugs. With this drug protocol, 80% of first episode patients do fairly well over the long-term without antipsychotics.”

This begs a critical question. If antipsychotics are impede the recovery of many schizophrenics, what do they do to the millions of non-psychotic adults and children that are prescribed them?

One other observation. This notion of “functional recovery rate” sounds a lot like quality of life. Interesting that this is the kind of measurement exposed this pharmacological treatment as harmful for many patients and some prominent advocates of a pharmacological treatments have dismissed quality of life as an outcome measurement.

UPDATE: This is precisely why so many of us have been so concerned about mergers between mental health and addiction treatment systems. Many of these mergers are really the mental health system taking over addiction treatment systems.

2012′s most popular posts #1 – Hope and Recovery

Pat Deegan reflects on her own experience an shares about the need for hope in recovery:

He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.

When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.

Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.

Amen. Please go and read the whole post at her blog and spend some time poking around her posts.

 

Beware of misleading headlines

Caution Tape
Caution Tape (Photo credit: Picture Perfect Pose)

A new article discussing the expanding use of medications in addiction treatment has the following sub heading:

Experts are pushing for a truly medical approach to treating addiction as a disease rather than relying solely on longtime unproven therapies like 12-step programs.

Unproven?

I’m certain a day will come when we have effective pharmacological tools to help addicts initiate and maintain recovery but, beyond detox, I find the current meds pretty underwhelming as a group and troubling in some cases.

When you hear the push for these “scientific”, “medical” and “evidence-based” treatments, keep these exhibits in mind:

A Doctor’s Dilemma: When Crucial New-Drug Data Is Hidden

The positive spin surrounding industry-funded studies — which are, after all, the studies that the government uses to approve drugs — isn’t the only ongoing problem. Goldacre further describes how drug companies hide data about medication risks that affect children, how they attempt to intimidate the employers of researchers who produce results they don’t like, and how they routinely withhold safety data in various other ways that do harm to patients.

A Call for Caution on Antipsychotic Drugs

You will never guess what the fifth and sixth best-selling prescription drugs are in the United States, so I’ll just tell you: Abilify and Seroquel, two powerful antipsychotics. In 2011 alone, they and other antipsychotic drugs were prescribed to 3.1 million Americans at a cost of $18.2 billion, a 13 percent increase over the previous year, according to the market research firm IMS Health….several recent large randomized studies, like the landmark Catie trial, failed to show that the new antipsychotics were any more effective or better tolerated than the older drugs.

It was also soon discovered that the second-generation antipsychotic drugs had serious side effects of their own, namely a risk of increased blood sugar, elevated lipids andcholesterol, and weight gain. They can also cause a potentially irreversible movement disorder called tardive dyskinesia, though the risk is thought to be significantly lower than with the older antipsychotic drugs.

Nonetheless, there has been a vast expansion in the use of these second-generation antipsychotic drugs in patients of all ages, particularly young people. Until recently, these drugs were used to treat a few serious psychiatric disorders. But now, unbelievably, these powerful medications are prescribed for conditions as varied as very mild mood disorders, everyday anxiety, insomnia and even mild emotional discomfort.

Top 10 Drug Company Settlements

Record-breaking multibillion-dollar settlements against big drug companies have become routine in the U.S. In recent years, pharmaceutical companies seem to have been playing a game of one-upmanship, each surpassing yet a new milestone of wrongdoing — fraudulently marketing their drugs or making misleading claims about their safety — and the threat of massive payouts appears to have offered little deterrent.

A brain disease AND (fill in the blank)

 

Schizophrenia
Schizophrenia (Photo credit: Alaina Abplanalp Photography)

 

Not addiction related, but a very interesting look at  new directions for treating and understanding schizophrenia.

 

The article opens by reflecting on where we stand with our attempts to understand the causes:

 

…the outcome of two decades of serious psychiatric science is that schizophrenia now appears to be a complex outcome of many unrelated causes—the genes you inherit, but also whether your mother fell ill during her pregnancy, whether you got beaten up as a child or were stressed as an adolescent, even how much sun your skin has seen. It’s not just about the brain. It’s not just about genes. In fact, schizophrenia looks more and more like diabetes. A messy array of risk factors predisposes someone to develop diabetes: smoking, being overweight, collecting fat around the middle rather than on the hips, high blood pressure, and yes, family history. These risk factors are not intrinsically linked. Some of them have something to do with genes, but most do not. They hang together so loosely that physicians now speak of a metabolic “syndrome,” something far looser and vaguer than an “illness,” let alone a “disease.” Psychiatric researchers increasingly think about schizophrenia in similar terms.

 

The author reports disenchantment with a simple biomedical model and offer three reasons.

 

First, disappointment with medication:

 

The first reason the tide turned is that the newer, targeted medications did not work very well. It is true that about a third of those who take antipsychotics improve markedly. But the side effects of antipsychotics are not very pleasant. They can make your skin crawl as if ants were scuttling underneath the surface. They can make you feel dull and bloated. While they damp down the horrifying hallucinations that can make someone’s life a misery—harsh voices whispering “You’re stupid” dozens of times a day, so audible that the sufferer turns to see who spoke—it is not as if the drugs restore most people to the way they were before they fell sick. Many who are on antipsychotic medication are so sluggish that they are lucky if they can work menial jobs.

 

Second, the genetics are much more complicated than was assumed:

 

The second reason the tide turned against the simple biomedical model is that the search for a genetic explanation fell apart. Genes are clearly involved in schizophrenia.

 

But:

 

The effort to narrow the number of genes that may play a role has been daunting. A leading researcher in the field, Ridha Joober, has argued that there are so many genes involved, and the effects of any one gene are so small, that the serious scientist working in the field should devote his or her time solely to identifying genes that can be shown not to be relevant.

 

Third, global research is revealing that culture and social factors play a much bigger role than previously understood:

 

The third reason for the pushback against the biomedical approach is that a cadre of psychiatric epidemiologists and anthropologists has made clear that culture really matters. In the early days of the biomedical revolution, when schizophrenia epitomized the pure brain disorder, the illness was said to appear at the same rate around the globe, as if true brain disease respected no social boundaries and was found in all nations, classes, and races in equal measure. … In recent years, epidemiologists have been able to demonstrate that while schizophrenia is rare everywhere, it is much more common in some settings than in others, and in some societies the disorder seems more severe and unyielding.

 

For example:

 

Schizophrenia has a more benign course and outcome in the developing world. The best data come from India. In the study that established the difference, researchers looking at people two years after they first showed up at a hospital for care found that they scored significantly better on most outcome measures than a comparable group in the West. They had fewer symptoms, took less medication, and were more likely to be employed and married.

 

The article closes with a few examples of alternative strategies from other countries. I’m sure it will provoke controversy, but seems increasingly hard to defend the status quo.

 

 

 

 

 

Hope and Recovery

Pat Deegan reflects on her own experience an shares about the need for hope in recovery:

He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.

When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.

Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.

Amen. Please go and read the whole post at her blog and spend some time poking around her posts.