On book reviews and book clubs

Dear readers,

I’m asking a favor of you that will help inspire a more positive view of schizophrenia and get this healing message into the hands of a wider audience. My target audience is mothers of adult children who have been diagnosed with a serious mental illness. How do I attract their attention? Mainly through book promotion on my part and book reviews and recommendations on your part.

The Scenic Route: A Way through Madness has been stuck at five reviews for over a year now and sales are slowing. Mind you, the five so far are great reviews –just not enough of them to attract the attention of more readers who will contribute to the virtuous cycle of greater awareness through more reviews generating greater awareness.

Here’s what reviews of my book will do for potential readers:

Lessens their time and risk: A review of my book saves the buyer time and money by decreasing the risk that my book is not their cup of tea. The more informative a review is (what you liked, what message you took away, etc. ), the more confident the reader will be in knowing whether it’s right for them. Maybe in the end they will decide not to read the book, but they will at least know about it and perhaps even recommend it to readers who are “right” for the book.

Greater chance of finding what they want through visibility and buzz: Book reviews give books greater visibility and a greater chance of getting found by more readers. More book reviews will also help amplify my book’s reach among book clubs, bookstores, blogging communities, etc.

You may protest that you are not a writer, but I disagree. I know most of you are decent writers because I’ve corresponded with you over the years and your eloquence when putting “pen to paper” (figuratively speaking) is humbling. You write well because you are experts in how schizophrenia has impacted your own life story .

Thinking abut writing a review but stuck on what to say? How about a paragraph or two on a particular treatment approach that appealed to you, or on some random event in the book that struck your funnybone, or on how your experience compares with mine.

Speaking of book clubs: I would love to see my book on your book club’s list for 2020. Contact me for information about group discounts.

Thank you,

… Rossa

Let go, let go, let go

I’ve been busy of late in places other than the blogosphere. Like going to my 50th high school reunion, visiting friends and family in Ontario, taking on the role of chair of the communications committee in my gated community here in Florida.

I’ll start with the reunion, spread out like an Indian wedding over a wonderful three days in rural northern New York State. In a small town small school, everyone knows everyone, the years didn’t matter. We picked up with each other almost where we left off fifty years ago. At the banquet on Saturday night in the Catholic Church Hall I was honored to receive the Alumnae of the Year award for my writing efforts to promote a more holistic approach to the treatment of schizophrenia.

What was not so amazing was the number of people in the room who came up to me later to share how they have been personally touched by schizophrenia. One man told me that my speech evoked a flood of memories of a favorite cousin who disappeared years ago. Another woman approached me to tell me that her daughter is doing graduate work in psychology, focusing on schizophrenia. Someone else wanted to order my book for the local library. Schizophrenia touches many lives.

The community newsletter that I’m putting out once a month has given me a chance to get to know my neighbors more. In theory, it should be easy. I just work off a template and wait for board members and others to send me their news. In reality, there are always small problems that need fixing. It’s vying for time with this blog.

A few weeks ago, Chris and I began attending a metaphysical church where the emphasis is on awakening to the inspiration and guidance of spirit, focusing on healings, mediumship, and embracing the teachings of all Master Teachers.

The church also offers courses based on A Course in Miracles, the words of Jesus transcribed over many months by Helen Schucman, a professor of medical psychology at Columbia University. The book was published in 1975 by The Inner Peace Foundation. It’s essentially an instructional device in how to love (become whole), by letting go of the fear and delusional thoughts to which our ego clings. “It teaches that the way to universal love and peace—or remembering God—is by undoing guilt through forgiving others. The Course thus focuses on the healing of relationships and making them holy.”

only the mind can be sick, only the mind can be healed. Only the mind is in need of healing; we must change our mind about the “reality” of illusions; there is no such thing as “sin” (there are only errors (in thought) that we must correct; Illness of any kind may be defined as the result of the view of the self as weak, vulnerable, evil and endangered, and thus in need of constant defense; while truth is simple, it must stil be taught to those who have already lost their way in endless mazes of complexity. This is the great ill.

And what then is my error in thought in this journey of healing? That I did not put full trust in the healing power of the Universe (God, if you will) to let go of my fear that the result would be inferior to the result that I wanted. My ego knew this was a error that I was hoping I wouldn’t have to correct one day. I carried on nonetheless, endlessly trying new therapies that got closer to God in many respects (music and vibration) without callng on him by Name, in the hope that I almost singlehandedly could lead Chris to taking responsiblity to heal himelf. I was giving an intellectual nod to God that he obviously was important, except I wasn’t treating Him like he was. Where was the mysterious hand of God in all of this?

Recalling Level 5 of Dr. Dietrich Klinghardt’s healing pyramid, where I started off years ago:

Level 5:
The 5th level is the plane of self-healing. I call this level
the “spirit body”. The only relationship that exists here is the
relationship between the individual and god. The fifth level
is this part of God that reaches into us and wants to learn and
experience the physical word through this individual with all
his or her flaws, strengths and idiosyncrasies. A physician,
psychologist, or guru who claims that he can be helpful on
the 5th level is being arrogant, misleading, dangerous and
simply wrong. Anyone who truly has experienced this level
will have an attitude of deep respect and understands that it
cannot be explained using language. People that talk often
about “god”, “angels” and other spiritual experiences are suspicious to me. People too deeply involved in the “New Age”
often have significant unresolved family issues or guilt (that
is either taken on from another family member or “earned”
through one’s own mistakes). The pain and necessary healing work is often avoided by involving oneself in extensive
spiritual practices that never seem to resolve the real issues.
Treatment:
Any exploration of this level is left to the patient.
As practitioners we have no right to intrude on this plane.
An attitude of great respect and humbleness is appropriate. Interfering would be saying: “the part of God that
works through me ( the practitioner) is more important or
healed then the part of God you (the client) represent”.

I’m still around, I’m still interested in helping Chris where I can, it’s just that I can’t do it all, have never wanted to do it all, and I’m more and more interested in finding my own peace by turning this over to Chris and his Father.

Let go and let God.

Stop insisting that people with schizophrenia take their medication (or else!)

Best selling author Pete Earley reposted a recent New Yorker article written by a woman who lost her brother to homeless and then to suicide. It’s a familiar (and very sad) story that echoes the heartache that families encounter trying to figure out how to help our relatives and coming up short most of the time. I followed Pete over to his Facebook page and left the following comment:

Rossa Forbes What if, rather than kicking his son out of the house because he wouldn’t take his medication (and therefore precipating his long spiral into homeless and death) the father in this article had taken a different tack by siding with his son? Yes, Taking His Side by researching what the medications do, how efficacious they are, and finding out why people don’t like to take these drugs. Then, he could have said, “I understand the way you feel, and let’s try some alternatives first, of your choosing. I don’t like these medications, either, but at the very least, if, in the end, you agree to take a single medication, I will make sure that it is at the lowest dose possible. I will become your ally, not your adversary.” The author has got it right when she complains about the fact that educating ourselves doesn’t necessarily result in better outcomes: “In our family, we did all of this, and more—we took classes, consulted experts, conferred with lawyers, and met with people with schizophrenia who had rebuilt their lives. But applying what we learned was rarely simple. Though our efforts often helped us enormously, they did not, in the end, do much for Tom. I wonder, still, what could have saved him.” Had her brother an ally in a close relative who was willing to work with him (as difficult as these things are), much of the misery he was in could have been avoided. I say this as a mother of a young man with a diagnosis of schizophrenia, whom we kept at home probably far too long for his own good, and it was a strain, to say the least, but at least we knew where he was and we could work at building better communication skills and becoming allies. Rossa Forbes, author, The Scenic Route: A Way through Madness

Neurofeedback continues

We met with the neurofeedback specialist at the end of April to see how Chris’s brain mapping results looked now after he had undergone twenty neurofeedback sessions. As I expected, the results were good. His delta and theta absolute power readings in the Z scored FFT Summary Information sheet were now uniformly green instead of blighted by the occasional red mass. This looked like a good thing, and the specialist assured us that indeed it was. My son had improved in all functional areas and particularly in the critical pre-frontal cortex.

If you can understand the technical stuff that I just wrote, you are well ahead of me. I take it on faith from the impressive brain science jargon that neurofeedback can beneficially modify brain wave patterns. Does neurofeedback achieve the results it promises? I’ve no idea.

I do know that the neurofeedback specialist and I agreed that Chris was speaking more conversationally and on track than when he started the sessions. What I don’t know is if that is the results of neurofeedback or Chris feeling more relaxed with the man, or whether it was due to the many other things that are going on in his life right now, such as living on his own for the first time and having to get himself up in the morning and go to his vocational program.

Chris felt that much of the neurofeedback mimicked what he was doing in Focused Listening and what he understands about Rife frequencies. I can’t address that from a neurofeedback perspective but I’ll take his word for it. I do know from my own experience with Focused Listening how beneficial it has been for me. The key to logic and relaxation seems to be listening to high frequency sounds. In Rife frequencies, 528 herz is sometimes called the Cure-all frequency. Focused Listening emphasizes Mozart violin concertos (whch are in the 528 herz range). Neurofeedback frequencies are tailored to the individual’s actual brain wave patterns, which can be seen on the computer screen. I have no idea what the actual frequencies, in Chris’s case, are.

So, what was the outcome of the meeting with the neurofeedback specialist? Chris signed up for ten more sessions. He’ll be done by the end of July.

Information, not ablation

Ablation: A relatively new procedure that scars or destroys tissue in the heart with the aim of getting the heart to beat normally.

The doctor I consulted last week specializes in ablations. My cardiologist referred me to him because the heart medication wasn’t working to control my atrial fibrillation.

I wasn’t there that day because I wanted an ablation. I wanted more information about how I could fix my atrial fibrillation (A-fib) naturally, but I knew that I wouldn’t get that information from him. I had gotten that information myself and was hoping that taking cell ready liquid magnesium and other mineral supplements, listening to high frequency music, and correcting my breathing patterns over the past couple of months had put my heart in sinus rhythm.

The TV on the wall in the waiting room broadcast eerie warnings about all the possible things that can go wrong with your heart, no doubt a deliberate strategy to scare the bejeezus out of us sheeples so that ablation looks like the only solution.

After my name was called and I shuffled into the consultation room, the nurse sat me down and asked a few questions about my medication history. I told her the side effects to my heart medication were intolerable and I wanted off! She agreed that the drug should be dropped. I noticed a cardboard sign on the counter opposite us illustrating what dead arteries look like. I excused myself, got up off my chair and walked over to turn the picture to the wall. “Gee, said the nurse, “I had thought about removing it because we don’t deal with artery disease here.” (I couldn’t help noticing that the only pamphlet in the room was a glossy brochure on why you need an ablation. Continue to ramp up the fear, why don’t you?)

Next, the ECG. To my immense relief, I was in normal heart rhythm. I haven’t had a normal rhythm detected in a doctor’s office since one was last heard in December. I may still have A-fib, it’s just that it now it appears that I no longer have persistent A-fib. I’ll take that.

Now, if I was expecting this new doctor to talk to me about natural means of eliminating my A-fib I would be incredibly naive and misinformed about what a heart rhythm specialist in Florida actually does and how much he earns doing it. The top heart rhythm specialists (electrophysiologists) can make more than $600,000 a year, way more than even what cardiologists earn here. I’m guessing the doctor I was about to see earns well over a gazillion dollars per year because there are lots of us old folk in Florida who have arrythmias. We’re easy pickin’s.

Getting a second opinion from an MD in Florida strikes me as a waste of time. I had done my some of my ablation homework by searching for second opinions from YouTube cardiologists about what atrial fibrillation is and why ablation should be avoided. (Don’t let your doctor tell you otherwise: YouTube is a great source for medical second opinions.) What I learned from YouTube about ablation is this:

The operation is successful in about 30-60% of cases. Many people have to keep having them done and of course, it is a surgical procedure that carries its own risks. You should only consider ablation if you feel that your quality of life is impaired, for example, maybe you’re an athlete who doesn’t like getting winded or maybe you’re a sedentary type but having trouble doing even small amounts of physical activity. It’s not for people like me who are able to live with it. Better yet, rather than just living with it or going for the surgical option, why not first investigate the miracle of liquid magnesium? As ablation is a relatively new procedure, not much is known about what can happen to your heart down the road because of the procedure. You still need to take an anticoagulant even if your ablation is successful. Just because you have no more heart arrhythmia does not mean that your risk of stroke has diminished. Strokes are fellow travellers with A-fib but A-fib does not cause strokes, as my favorite YouTube cardiologist explained. You need an anticoagulant to mitigate against strokes, not an ablation.

I also learned from YouTube that A-fib can be minimized and even eliminated using natural means. The benefits of cell ready liquid magnesium are touted,** the desirability of losing weight if you are overweight, fixing any sleep apnea, cutting back on coffee and alcohol, destressing your life, etc. And, most critically, you don’t need an ablation if A-fib doesn’t bother you.

The doctor I was about to see makes his living by telling you that A-fib is a problem, and he can do something about it. Here we should all pause for a moment: Remember the enthusiasm for lobotomies back in the 1940s and 1950s where connections were severed in the prefrontal cortex of the brain in an effort to control mental illness? How well did that experiment turn out?

There was a quick knock on the door and the high earning specialist entered the room. We shook hands, exchange some pleasantries, and got down to business. I had about fifteen minutes to find a drugless way forward.

Right away he said that I could drop the heart drug I’m currently on. (Strange that even though the ECG reading was normal for the first time in months the doctor didn’t claim that the heart drug was now suddenly working. If there was another explanation for why I was in sinus rhythm, he wasn’t curious to know.) I briefly started talking about the magnesium effect, but he wasn’t listening. He had whipped out a pen and notepad and began drawing an electrical storm of misfiring atria while enthusiastically writing down and circling the names of the drug possibilities I could take to control the A-fib. No talk of ablation but also no talk of natural means. He was fixated on the drugs of which there were about seven. He mentioned a “pill in a pocket”, something I could take as needed when my A-fib kicked up. “Okay, I’ll take that one,” I said, not that I was planning on using it. He promised to phone my prescription in to the pharmacy. End of appointment.

On my way out the door he asked if he could give me more information on ablation, evidently hoping that I might reconsider. I said I’d be willing to consider having the procedure done if I felt that my quality of life was becoming impeded. “What are the chances that the procedure would actually be successful in my case?” I asked playfully. (I knew the answer.) Funny, but I don’t remember his answer. I think he laughed, but I’m not sure.

If you’ve read all the way through to this point, you may be wondering what on earth this has to do with my usual theme of schizophrenia. My point is this: How would someone half my age with a diagnosed mental health problem be able to do the amount of homework that is needed to be an effective self-advocate, let alone make himself understood in a fifteen minute med check?

Fifteen minute med checks are a danger ground.

*The usual disclaimer: I am not a doctor and what I am writing should not be construed as medical advice. I specialize in opinions only. Do your homework. Form your own opinions.*

**See Dr. Carolyn Dean, MD, ND

Schizophrenia and gluten

BEYOND THE GUT: THE RELATIONSHIP BETWEEN GLUTEN, PSYCHOSIS, AND SCHIZOPHRENIA

May 16, 2018GlutenPsychosisSchizophrenia

JAMES GREENBLATT, MD & DESIREE DELANE, MS

INTRODUCTION

The National Institutes for Mental Health provide a succinct definition for schizophrenia as periods of psychosis characterized by disturbances in thought and perception and disconnections from reality; however, diagnosis is much less straightforward.  Schizophrenia represents a wide illness spectrum with symptomatic features and severity ranging from odd behavior to paranoia.  With a prevalence rate over the past century holding steady at 1% worldwide and immovably poor patient outcomes, schizophrenia delivers profound relational and societal burdens, proving to be a complex clinical challenge and an unyielding epidemiological obstacle.

GLUTEN AS A TRIGGER FOR PSYCHOSIS

Although the role of food hypersensitivities in disease pathologies is highly controversial in the medical community, many recognize a parallel rise with dietary evolution in modern history.  Major shifts from ancestral diets largely absent of wheat or dairy to one with these as foundational components generate reasonable arguments on their implications for human health.  Industrialized food systems that streamline the way foods are grown, processed, and stored are often charged with altering their very nature down to its most infinitesimal molecules.  Yet, despite their diminutive size, micronutrients from food are essential to the complex processes and interactions that represent optimal health.

Intolerance to gluten represents one of the most prominent food hypersensitivities arising in recent history, delivering profound impacts to both physical and mental health.  As the most severe reaction to gluten, Celiac Disease (CD) affects a growing population of men and women READ MORE

My guest post at Virgil Stucker and Associates

Mothers, Fathers, and Others

May 15, 2019

Guest post: Rossa Forbes

I’ve been doing all right when it comes to being a supportive mom of an adult son with a schizophrenia diagnosis. I am his life coach, his cheerleader, and his 24/7 shrink. Outside of the home, I try to put a positive face on schizophrenia because I

believe it needs an image make-over and also because I do see a lot of positives in a condition when the world all around me often doesn’t.

I regularly remind myself that in order for someone to gain this label they’ve got to be a pretty thoughtful and generous person to begin with, okay, maybe a tad too thoughtful and a tad too generous to survive in sales, probably too religiously obsessed to even qualify as a preacher, too philosophical and/or poetic to ever work at being a philosopher or a poet, and too generous with their possessions to ever accumulate much in the way of worldly goods. What a wonderful human being my son with all of these traits is.

There’s another aging side of me that increasingly lacked the energy to keep up this degree of cheerful commitment to my son. He’d been living at home  READ MORE

Too much going on now to write about properly

Since Ian retired at the end of March and arrived home in Florida a couple of weeks ago after eight months away, I’ve had my hands full adjusting to our new retired normal. Thankfully, Chris is out of the house and living on his own so there is one less personality to deal with on a daily basis. (Insert emoji smiley face.) The last few weeks have been days filled with administrative tasks involved in “hubby’s” transition from work to retirement. He’s making “helpful” suggestions to add to my growing to-do list. Grrr. He wants everything done now!

Tomorrow afternoon we’ll get the results of Chris’s second brain mapping at the neurofeedback center. We’ll find out what has changed after his undergoing twenty neurofeedback sessions.

Did I tell you that Chris has also been sleeping under a weighted blanket for the past few weeks? He loves it! I got the idea from an article that Ian sent me about a woman who mistakenly purchased a weighted blanket on Amazon, and slept through the night for the first time in a long time. These blankets have been used in the autism community for years. Amongst other things the blankets stimulate the release of serotonin to alleviate the effects of many anxiety related conditions. He does seem less anxious. Is this the effect of the neurofeedback? Or is it because he’s more and more on his own and no longer being nagged at by me? Or is it that he’s back on 1 ml of Abilify?

I may have fixed my A-fib using natural methods. I won’t say anything more about this until after my appointment with the electrophysiologist later this month. I seem to have gotten my heart rate under control, but will need ECG results to know if the heart rate variability has improved. Too soon to cry victory.

The Challenge of Going off Psychiatric Drugs

Laura Delano sent a message around a couple of weeks ago that found its way into in my inbox. She is featured in a New Yorker Magazine article, The Challenge of Going off Psychiatric Drugs. Well worth a read.

A little more than a year ago, Laura and a small team launched a non-profit organization called Inner Compass Initiative (ICI) with a mission to help people make more informed choices about the mental health system—and specifically, choices about taking and coming off psychiatric drugs.

She writes: “I know firsthand how physically and emotionally debilitating the process of medication withdrawal can be, having come off 5 drugs in 5 months (way too fast!) in 2010. The conversations I’ve had over the years with thousands of people around the world have shown me that I’m not alone. Though it’s common knowledge that prolonged use of psychiatric medication can have serious adverse effects, there have been (to date) no formal scientific studies on safe tapering protocols. Few physicians and psychiatrists and no specialized detox facilities have experience with harm reduction-oriented methods of psychiatric medication withdrawal. If a person wishes to reduce their dose or stop taking a psychiatric drug, there is nowhere to turn for support or guidance in the mental health system.

Find out more about the Inner Compass Initiative and consider making a donation. ICI website states emphatically that “We are not a “mental health” organization. We are a social-change organization.”

The rush to intervene/DO SOMETHING!

My post this week is a random gathering of my observations on the “NAMI Basics” course I’m enrolled in and how my experience with US style medicine as a rush to medicate/operate is confirming what I’ve observed from abroad before moving here.

The NAMI Basics course is a bit of a surprise in that it questions the use of medication more than I would have thought. What is troubling is the emphasis on early intervention in the teen years, which sounds like a good idea, but really means bringing in a swat team of doctors, psychologists, etc. and elevating what could be a one-off situation into something more sinister and chronic. This is one version of the hammer approach to problem solving that I discuss in more detail in this post.

My more pressing concern these past few months has been my own health, not Chris’s. Without getting too specific about the details, I moved to Florida from Europe, proud of the fact that at my age I was on no prescription drugs and taking only baby aspirin to prevent blood clots. I’ve had atrial fibrillation on and off for many years, but I’ve lived with it and never consulted a doctor about it. It hasn’t impeded my life so far. Exercise doesn’t leave me breathless. I’m not saying that A-fib never requires some form of attention, but the devil’s in the details.

In November, I went for my first physical here in Florida and it was like setting off a five alarm fire judging from the response to the taking of my pulse. (This was the first time that my A-fib had been “caught” in real time.) The panicked look on the medical assistant’s face was the first tip-off that A-fib was not okay. (I had always heard that it might be scary, but not life threatening.) The doctor arrived. He pooh poohed the baby aspirin, gave me free samples for an expensive anti-coagulant and set me up for an appointment with a cardiologist. “But,” I protested, “I’ve always had A-fib to some extent or another. I’ve lived with it.”

Fast forward to today. The two heart drugs tried so far have not stopped my A-fib, and I’m no longer feeling quite as perky as before because of the side effects. Furthermore, the medical reaction to my condition had added stress. The cardiologist is sending me to an electrophysiologist and there is talk of surgical intervention (ablation). To gain some reassurance that my concerns about unnecessary intervention are well founded, I’m listening to a Youtube doctor from the UK who takes a much more laid back, non-surgical, non-drug view of atrial fibrillation. I am trying a variety of ways to normalize the heartbeat (heart rate is down already) and plan to discuss my preferred approach with the specialist. I’ll shut up and not question the need for the prescribed anti-coagulant if the specialist will backpedal on the need for the surgery.

I now find myself in the position that people under psychiatric care are in: being encouraged to accept stronger intervention that perhaps can be best managed by holistic means outside of a doctor’s office.

Magnesium, anyone?