Holistic Recovery from Schizophrenia

Writing my way through The Scenic Route

In August, I came to the end of my ten year writing marathon to document the healing journey that my son and I embarked upon. The Scenic Route will be published in January. Why did it take so long, you may well ask? For one, I’m not a writer. I became a writer over the course of the journey, partly as a way of holding on to my own sanity by having a Purpose in life. Finding a purpose in life is one of the many side roads that Chris and I ventured off on, me doing the driving and he mainly along for the ride, at least for a good part of these years. I felt sure that if he found a Purpose in life, too, perhaps he would eventually take over the steering wheel.

Chapter 46 opens when Chris is 27, which is 7 years after his first psychotic breakdown, and after multiple therapies have been tried. Continue reading “Writing my way through The Scenic Route”

What doctors should believe about recovery (and often don’t)

“Monsieur Auclair,” Saint-Vallier spoke up sharply. “I feel that you evade me. Do you yourself believe that the Count will recover?”

“I must ask your indulgence, Monseigneur, but in a case like the Count’s, a medical advisor should not permit himself to believe in anything but recovery. His doubts would affect the patient. If the Count still has the vital force I have always found in him, he will recover.”

From Shadows On The Rock, a superb historical novel published in 1931 by Willa Cather.

“….this novel of seventeenth-century Quebec is a luminous evocation of North American origins, and of the men and women who struggled to adapt to that new world even as they clung to the artifacts and manners of the one they left behind.” (Vintage Classics, 1995)

Baby aspirin as a possible treatment for schizophrenia

I’ve said it many times. I’m a slow learner. For several years I have read the news and reports about the latest theory that conditions like schizophrenia, bipolar, and depression are linked to the body’s autoimmune system producing a low grade inflammation of the gut and brain. I set this theory aside, figuring that by the time pharma produces a new medication with side effects, another theory will have taken hold.

Last night I was wide awake at 2 a.m., my thoughts pinballing their way as usual around my brain. I was trying to get back to sleep by practicing mindfulness techniques, when suddenly I had a eureka moment. Baby aspirin! Why not baby aspirin for schizophrenia? It’s an anti-inflammatory. I’ve been taking baby aspirin for the past three years to reduce the risk of inflammation leading to heart attack and stroke, but it never occurred to  me to think that it might also be considered a possible treatment for schizophrenia.

This morning I did a bit of google research and discovered that, indeed, researchers have been on to this possibility for several years. If you “do the research” like I did (lol) you’ll see that some articles are quick to say that baby aspirin appears to be an effective “add on” to your normal intake of antipsychotics or antidepressants. Just an add on, not taken on its own. But it you dig a bit further, you’ll come across a different story – that some scientists hope that anti-inflammatory agents such as baby aspirin may eventually  replace the need for prescription drugs.

From the website of a for-profit treatment center: “A number of studies in recent years have drawn connections between schizophrenia and the immune system and have suggested that anti-inflammatory medications may improve treatment of this illness. The immune system has been linked to various psychiatric disorders, and research has associated the HLA gene system in particular (a system that plays a controlling role in various aspects of the immune system) with schizophrenia.

The Dutch study looked at a range of the best of these studies—all double-blind, randomized controlled trials—in order to determine if there was strong evidence in favor of the use of anti-inflammatory medications in combination with antipsychotic drugs. They found that a number of anti-inflammatory agents improved the results of antipsychotic drugs for schizophrenic patients.”

From an article in The Daily Mail:

“As soon as the word depression is mentioned, we tend to think of a mental problem that may need treatment with antidepressant drugs, with all their risk of side-effects such as weight gain and loss of libido.

But what if it actually has a physical cause that could be treated with anti-inflammatory drugs such as aspirin and ibuprofen, or even antibiotics?

This is the fascinating possibility being explored by scientists at Cambridge University.”

“The Cambridge team’s hope is that by teasing out the link between inflammation and depression, they may be able to help prevent thousands of deaths among those who suffer from the mood disorder — and prevent people needlessly being on antidepressant drugs.

Read more: http://www.dailymail.co.uk/health/article-3077263/Can-ASPIRIN-banish-depression-Scientists-say-illness-caused-inflammation-body.html#ixzz4iBvs8xXA

 

 

Recovery and peer support, or the medical model. Why must it be “either/or”?

Today’s post is from Pete Earley’s blog. There is yet another battle currently being waged in the United States, this time over the appointment of the Assistant Secretary of Mental Health and Substance Abuse. The introductory paragraph is clear as to what issues are at stake.

Harvey Rosenthal: The “Worried Well” – A False Narrative Meant To Divide

BY PETE EARLEY

(5-15-17) I bumped into Harvey Rosenthal recently at the National Council on Behavioral Health Care convention in Seattle and invited him to write a guest blog. Harvey is Executive Director of the New York Association of Psychiatric Rehabilitation Services and one of the best known advocates for recovery and peer support services. Given what seems to be a constant battle being waged between the “medical model” that focuses on medication adherence and the “recovery model” that focuses on peer support and other social services, I thought it would helpful to hear his point of view, especially because a new Assistant Secretary of Mental Health and Substance Abuse will soon be appointed.)

Re-Balancing Federal Policy Need Not Have To Choose Between Extremes

BY HARVEY ROSENTHAL

For far too long, advocates for court mandated outpatient commitment have promoted the false narrative that recovery, rehabilitation and peer support providers and advocates don’t want to serve Americans with the most serious conditions…..and that our motivation in supporting the redirection of public funds from hospital to community is simply to capture public dollars for our own purposes. In contrast, these groups have outrageously played upon unfounded connections between violence and mental illness to promote a singular one-size-fit-all prescription of “more meds, more beds and more coercion.”

Along the way, these groups have promoted beliefs that a recovery and rehab focus only applies to the ‘worried well’ and excludes the most distressed, that peer support is inevitably against treatment and medication and that rights advocates are only interested in helping people in the greatest need to avoid such treatment?In recent years, subscribers to these beliefs have succeeded in capturing the attention and support of conservative Republicans, think tanks and the tabloids. They have heavily informed the efforts of self-styled mental health reformer Rep. Tim Murphy and are apparently poised to see the appointment of an apparently like-minded first HHS Assistant Secretary for Mental Health Services.

Advocates across our spectrum must join together to educate both the Senate that will be confirming the first HHS Secretary Read the rest of the post here

 

 

A new documentary CRAZYWISE: How western cultures treat spiritual awakening, available free until March 28

Phil Borges is an award winning photographer and documentary film maker who has spent many years photographing and documenting the practices of indigenous and tribal peoples. He observed the mystical practices of the shamans (healers) who command a respected place in their cultures, and then he wondered: Where are the healers and the shamans in our western cultures? Many of them he found on the streets, a sad commentary on our go-it-alone culture.

From the CRAZYWISE synopsis:

Through interviews with renowned mental health professionals including Gabor Mate, MD, Robert Whitaker, and Roshi Joan Halifax, PhD, Phil explores the growing severity of the mental health crisis in America dominated by biomedical psychiatry. He discovers a growing movement of professionals and psychiatric survivors who demand alternative treatments that focus on recovery, nurturing social connections, and finding meaning.

CRAZYWISE follows two young Americans diagnosed with “mental illness.” Adam, 27, suffers devastating side effects from medications before embracing meditation in hopes of recovery. Ekhaya, 32, survives childhood molestation and several suicide attempts before spiritual training to become a traditional South African healer gives her suffering meaning and brings a deeper purpose to her life.

CRAZYWISE doesn’t aim to over-romanticize indigenous wisdom, or completely condemn Western treatment. Not enery indigenous person who has a crisis becomes a shaman. And many individuals benefit from Western medications.

CRAZYWISE is intended to heighten our awareness of how we treat our mentally ill in western cultures and it proposes solutions. Please watch this paradigm changing film, and spread the word! 

This film is available until March 28: https://vimeo.com/201079582/37ea6dd390

A townhall meeting surr0unding the launch of the film can be viewed viewed on YouTube.  You can also find it on the CRAZYWISE website.

 

Recovery: Pushing them too soon?

In case you’re getting impatient with the slow progress your relative may be demonstrating, I thought I’d share Chris’s experience taking courses. The ability to pay income tax (and, by my inference, to succeed at training courses) is almost the gold standard for recovery (in addition to getting along well within the family and the wider community) according to Doctor Abram Hoffer.

Here’s a long list of the courses Chris attempted, beginning at about age 21, a year after he was first hospitalized.

  1. Audited an art history course (managed to hang on mainly due to the heroic efforts of the professor to accommodate his behavior)
  2. Passed a political science semester course
  3. Quit another polysci course due to worsening symptoms
  4. Enrolled in a month long physics course and lived away from home – didn’t keep up with assignments and, obviously, failed. Final grade about 5%, if I recall.
  5. Failed to submit final work for a communications course
  6. Took refresher math lessons with a tutor; too distracted to concentrate
  7. Enrolled in a three-week French course – quit about day 3. Too anxious.
  8. Took an online music theory certificate course for a semester – I think he passed. It was so long ago.
  9. Resumed piano lessons – didn’t practice much. Stopped the lessons.
  10. Enrolled in a three-week computer course. Passed first module
  11. Enrolled in second three-week computer module. Failed second module
  12. Enrolled in an intensive French course – passed
  13. Enrolled in the next level of the French course – passed
  14. Enrolled in a sound engineering certificate program for one year – not quite making the grade. Quit.
  15. Enrolled in online math course – in progress
  16. Resumed taking piano lessons – as of last week

If I had to do it all over again, I wouldn’t have encouraged Chris to become a student until he was much older and further into his recovery. Chris simply wasn’t ready until HE decided he wanted to do something more, which began around the age of 28 (course number 11 onwards). Getting there has been slow and unpredictable, but Chris has changed a lot and is finally seeing that he if wants to make something of his life, only he can do it.

 

Eric Maisel interviews me in Psychology Today series

Welcome to Childhood Made Crazy, an interview series that takes a critical look at the current “mental disorders of childhood” model. This series is comprised of interviews with practitioners, parents, and other children’s advocates as well as pieces that investigate fundamental questions in the mental health field. Visit the following page to learn more about the series, to see which interviews are coming, and to learn about the topics under discussion:

http://ericmaisel.com/interview-series/

Rossa Forbes is a blogger with an upbeat and decidedly offbeat mom’s perspective on the journey of schizophrenia. Her memoir, The Scenic Route: A Way through Madness will be published early next year by Inspired Creations LLC.

EM: How would you suggest a parent think about being told that his or her child meets the criteria for a mental disorder and ought to go on one or more psychiatric medication for his or her diagnosed mental disorder or mental illness?

RF: Before going down that road I would insist that the doctor conduct a thorough medical history to assess whether there is an underlying medical condition, e.g. Lyme disease, brain tumor, or an autoimmune condition.

As it is only quite recently (2007) that the link between psychosis and an autoimmune disorder called anti-NMDA receptor encephalitis has been made, it is possible that researchers are already identifying other antibodies in the blood and spinal fluid with links to psychosis.

Do keep in mind that doctors know very little about how the drugs work or what causes mental illness. The word “medication” (as opposed to “drug”) implies the presence of a disease state that can be successfully treated pharmaceutically.  As schizophrenia (the mental illness with which I’m most familiar) is considered by the medical profession to be incurable, in the same way that they consider most mental illnesses incurable, this negates the idea that a medication exists that can treat it.

The drugs are actually major tranquillizers and they are generally effective at dampening psychosis –masking it, not getting rid of it. In the process, these drugs make the person sluggish and prone to weight gain and other side effects.

I know from experience, how hard it is to manage “schizophrenia” without resorting to a prescription drug. I do think it is possible, but I think most parents initially are not in any way familiar with how to do this. Acquiring this knowledge may take years of trial and error, although there are online courses that are beginning to teach these skills.

Read the rest of the interview here

Understanding Extreme States: An Interview with Stephen Harrod Buhner

This interview with Stephen Buhner was conducted by Matt Stevenson,  a young man who has recovered from challenges associated with multiple “severe” psychiatric diagnoses and who is building a bit of a reputation on the Mad in America site by interviewing leaders about alternative ways of conceptualizing distress, as well as about about paths to recovery outside the mainstream system.

Understanding Extreme States: An Interview with Stephen Harrod Buhner

One day on the ISPS listserv, psychologist Paris Williams shared a chapter from a book in which an herbalist and alternative healer named Stephen Harrod Buhner described his approach to working with the extreme states of mind commonly labeled as “schizophrenia” by psychiatrists. The chapter was entitled “On the Healing of Schizophrenia” and the book is Plant Intelligence and the Imaginal Realm.

Buhner described concepts which I knew from my study of psychoanalytic approaches to these problems, such as profound fragmentation of the mind into part-selves to counter overwhelming anxiety, and the great care and lengthy time frames necessary to help severely traumatized people regain trust in the outside world. Buhner described how the dedicated healer could painstakingly be permitted access to the fragmented inner world of a terrified person and help them reintegrate their mind. Of “schizophrenia,” Buhner said, “The cultural paradigm or view of the condition is itself dysfunctional, to the extent that the paradigm is crazy.” (Plant Intelligence and the Imaginal Realm, pg. 503)

Finding myself intrigued by this man who’d never trained in psychiatry or psychology but who nevertheless worked effectively with people in severe distress using self-developed theories, I tracked Buhner down. I asked him to speak to me about these issues, and here is what resulted:

Read the interview in its entirety  here  Be inspired!

What I’ve been doing lately

I haven’t posted in quite a while, mainly because, as usual, I’m hard at work getting my memoir The Scenic Route: A Way through Madness ship shape and ready for launch. But, it’s taking much more time than I ever imagined possible. It seems I been saying this for years, and, well, it’s embarrassing that it’s taking so long.

For the time being I’ll opt for a more newsletter style of delivering future blog posts. My random musings will go straight to your inbox.

 

Recovery course starting Sept. 15

If you’re looking for some expert family oriented advice on how to practice recovery, I see that Krista Mackinnon is running another Recovering Our Families online education course beginning September 15th.

http://familieshealingtogether.com/focus/recovering-our-families/

“Krista Mackinnon’s facilitation and training on family recovery provides vital, practical tools for supporting someone struggling with psychosis. I encourage everyone I work with to take this class: it’s a wealth of useful learning that can immediately improve family relations and help find a way through the labyrinth of madness.”
Will Hall, MA, DiplPW
Therapist and schizophrenia survivor, Madness Radio host and trainee
in Open Dialogue at the Institute for Dialogic Practice.

 

Lyme disease and autoimmune issues

I’ve become quite interested recently in two medical conditions associated with psychosis symptoms: Lyme disease and a rare autoimmune disorder.  When my son Chris was diagnosed with schizophrenia in 2002, no blood tests, no tests whatsoever were done, except for the MRI that my husband and I insisted on. He was diagnosed based on a doctor’s opinion of what his symptoms represented. In the years since, Lyme disease has received a lot of attention because of its growing prevalence. (It seemed nobody was talking about it in 2002, and now it appears to be everywhere!) Several people I personally know have tested positive for Lyme disease and received treatment. In June of this year, the amazing story of musician Kris Kristofferson’a recovery from dementia induced by Lyme disease hit the news. http://tinyurl.com/hlk8r9d

Research on autoimmune issues and schizophrenia is still in its infancy. But, for some people, this may eventually prove a game changer. In 2008 Josep Dalmau presented a paper on anti-NMDA receptor encephalitis, a schizophrenia like condition caused by the body’s immune system attacking a protein in the brain.

“Markx and Dalmau are planning to collaborate with German researchers to study patients who have either come to the hospital with a “first break” — an initial episode of psychotic symptoms — or who are showing early signs, such as social withdrawal or cognitive problems, that typically precede the onset of psychosis. Blood and spinal fluid samples from these patients will be tested for antibodies to the NMDA receptor, and other antibodies. The results might change psychiatry’s approach to patients with new-onset psychosis, Markx said.”

http://tinyurl.com/za2dy4r

 

 

And my book publisher will be . . .

I’m proud to announce that I have recently signed a publishing agreement with Inspired Creations LLC, I love how the company describes itself:

Publisher of

Socially Relevant Culturally Significant and Individually Transformative works

I hope that my memoir, The Scenic Route: A Way through Madness, to be published later this year, will live up to Inspired Creations’ mandate: “dedicated to promoting works that entertain and enlighten, inform and transform, and possess the potential to impact individuals concerned with nature, culture, and the future of our beautiful planet.”

I want my book to do all of that and more – to offer hope to parents caught up in the current biochemically derived definition of mental illness by showing by example that there are choices. You can take the road that everyone else takes, often unsuccessfully, OR, you can take the scenic route and discover things about yourself and your relative that you may find interesting, empowering, fun (yes FUN!), educational, literary, dramatic. I want to blow your mind by introducing you to some off-beat therapies and thinking patterns  that nudged my son towards wellness. I want you to return from the trip, wondering “was that all a dream or was it real?”

I came across Inspired Creations when I read A Moment of Time, by Jilaine Tarisa and was impressed by how neatly this book wove together a lot of millennial themes in a tightly written mystery. I thought to myself, this is a publishing company I’d love to approach, because my book has a lot of themes in common with the publisher’s aspirations.

Stay tuned.