Startling news

On Friday, Chris and I met with the director of the brainwave center to go over the results of the testing. To cut to the chase there is clear evidence of a brain trauma. According to the report we received, “Frontal, temporal motor strip and parietal dysregulation are consistent with his symptoms. These areas participate in the executive, default, and salience networks, which have been implicated with schizophrenia. The frontal lobes are involved in executive functioning, abstract thinking, expressive language, sequential planning, mood control and social skills. The temporal lobes are involved in auditory information processing, short-term memory, receptive language on the left and face recognition on the right.”

Evidence of a brain trauma in the left frontal lobe was surprising news to the director as both Chris and I had assured him that he has no history of a trauma.

“Oh, I guess I forgot to mention that when I was about age 30 I used to bang my head on the wall on occasion, and also, I got hit by a car when I was 24 and landed on the side of my head though my arm cushioned the fall.”

I was both dumbfounded by the news and totally embarrassed that we had failed to report any of this in our previous interviews. I did know of the car accident, but this was the first time I learned that he had hit his head in the accident. (His father took him right away to a nearby clinic and he was pronounced okay.) As for deliberately banging his head on a wall, well, how stupid is that?

The point is there is clear evidence of a head trauma as shown by the spectral analysis and topographic mapping. Chris’s alpha, beta, and high beta powers looked very good to the director.

Recommended treatment: Direct neurofeedback x 20 sessions with left frontal and motor strip emphasis.

Glitches

There were several comments to my last blog post that wound up in my Feedback tab and I can’t figure out how to get them out of there. I’m being given two choices: Mark them as SPAM or mark them as TRASH. For the life of me I can’t figure out how to mark them as VALID COMMENTS. My apologies to those of you who took the time to comment and are wondering why they didn’t get posted.

Dialling in on medical

Now that Chris and I have lived in Florida for a few months I’ve had a glimpse of the way the health system operates here, which, not surprisingly, caters to old folks, of which Florida has lots. Many of them are relatively affluent to truly rich, but not to be forgotten is that Medicare is available to those over 65. Ergo, there are tons of medical facilities here.

Some old people like to talk about their medical problems, many to the point where other people’s eyes glaze over. (Not a good thing to do around the kids if you want to appear youthful.) In Florida, you can spend your whole day indulging in this pastime because of the demographics. When conversation veers this way I call it “dialling in on medical.” So, where am I going with this? Well, much as I dislike discussing my own health (but don’t mind discussing Chris’s, lol) I can see that navigating much of life here requires a certain attention to the medical.

My post today is what can happen when people move between systems. In Europe, I was on no prescription drugs (with the specialist’s blessings). Apparently, I didn’t have a big enough heart problem or else my atrial fibrillation (A-fib in US speak) was considered minor. I was advised that I could get by on a daily baby aspirin. “Now that we’ve plugged the hole in your heart you’re fine and no need to see a cardiologist was the gist of my send-off.

Today, barely three months into living in Florida, I find myself on two prescription drugs and I have a cardiologist. My A-fib (which I’ve had all my life and is as much a part of me as the freckles on my arms) set off alarm bells at the GP’s office when I went in for a check-up. “But I’m on baby aspirin to prevent strokes and heart attacks,” I protested, “and the Swiss cardiologist didn’t think my A-fib was a problem!” Baby aspirin, the doctor replied, isn’t effective enough. This was news to me, and probably to all those people who are on baby aspirins for the same reason I am. He left the room and returned with three boxes of sample anticoagulants. “They’re very expensive,” he said, “so this’ll tide you over until you see the cardiologist,” which turned out to be the following week.

“You’ve got A-fib,” said the cardiologist after reviewing my records, “and your heart rate is too high right now.” After arguing back and forth a bit with her I wasn’t about to ignore her advice and bravely forge ahead on a baby aspirin, but I still can’t figure out why I can’t just ditch the expensive prescription anticoagulant (twice a day which means a refill twice as fast) in favor of the once a day baby aspirin and the virtue of being on one less prescription med. Well, maybe I can figure this out. Am I being too cynical?

Chris had his own encounter with the long arms of pharma. His new psychiatrist suggested to him at their first meeting back in October that he consider going on injectable Abilify. When I heard this I hit the roof. Injectable Abilify? What the hell did the doctor think he was doing by suggesting to a patient on the first visit, a person who appears “relatively normal” on very little liquid Abilify, that he up his dose and lock himself into perpetual patienthood? Chris told the doctor he would think about it. What have I been doing wrong all these years that Chris would even suggest to a doctor that he would “think about” being locked into something that he is pretty much off of? There are several reasons I can imagine why Chris said it, and only one reason I can think of why the doctor suggested it.

No escape from being on a prescription here is the conclusion one might draw.

My guest post for Virgil Stucker

In August I answered an invitation from Virgil Stucker and Associates to submit a post to their site in anticipation of September being the month dedicated to mental health advocacy and suicide prevention themes. The request was open-ended: I could write on basically whatever I wanted to write about, and if I had any particular treatments that I thought others would want to hear about, they wanted to hear about those, too. I thought that was a pretty decent invitation because it didn’t filter what was considered “acceptable” treatment from “unacceptable treatment.” Anyone reading my blog this past year knows that I’ve been pushing Focused Listening, so if you don’t want to hear any more about this treatment, you can stop here. On the other hand, if you are curious to read different perspectives on mental health recovery from parents and professionals, you can find them on the Virgil Stucker and Associates blog.

Virgil Stucker has over thirty years of leadership experience in the recovery movement (encompassing therapeutic communities and directorships of not-for-profit organizations). Virgil Stucker and Associates empowers mental health decision making for families and individuals facing issues due to serious mental illnesses such as depression, anxiety, bipolar and personality disorders, schizophrenia and schizo-affective disorder as well as substance abuse.

Rossa Forbes reflects on where an open mind led her when she sought help for her son, who was diagnosed with schizophrenia.

August 29, 2018

Guest Post

Guest post by author, Rossa Forbes.

I wish recovery were simple and straightforward for people like my son Chris who have experienced a serious mental illness. Often parents speak about recovery in terms of getting their old son or daughter back, meaning I suppose that their child’s personality, skills, and accomplishments before the onset of psychosis were pretty darn close to being as good as these things can be.

What a difference a change of continent makes

Abilify (aripiprazole) is still considered an antipsychotic in Europe (or in Switzerland, at least) but by changing continents with my recent move to the US, I find that Abilify has grown in stature, no longer a drug used by a small percentage of the population, but more like a drug superhero that watches over a lot more people with its magic protective powers. The drug superhero is paid handsomely for services rendered.

We all know that several years ago pharmaceutical companies began to market Abilify as an add-on treatment for major depressive disorder, downplaying its original role as an antipsychotic. Then, $uddenly, our $uperhero $aw a chance to help more people, $o pre$to chango, our $uperhero is now primarily an antidepre$$ant.

I don’t normally read the folded up drug information that comes inside the box. This time the Aripiprazole Oral Solution information was printed on two front and back pages of letter size paper stapled to the receipt, so it was hard not to be curious about the contents.

Let’s assume that a person who is being treated for depression, but is otherwise quite functional in his or her day to day life, decides to actually read the Aripiprazolerole literature, like I just did. She will see that the first page through to the very top of page two Continue reading “What a difference a change of continent makes”

Grapefruit consumption and the country reporting the lowest cause of death from hypertension

In my last post I supplied some ancedotal evidence about the amazing grapefruit’s ability to lower blood pressure. Coincidentally, we, meaning Chris and me, have just moved to Florida. Let the grapefruit fest begin! (Except for me with my low blood pressure.) As further proof that grapefruit lowers blood pressure, I’d like to show you what I’ve since learned, by introducing Exhibit A, my husband, and Exhibit B, the country of Japan.

Exhibit A: Ian, my husband, is worried about staying in Switzerland without me while Chris and I take up residence in Florida. Ian won’t be joining me until he retires from his job early next year. The usual stresses (paperwork and logistics) of a transatlantic move have also weighed heavily on him. Ian will continue to cohabit our flat in Switzerland with Taylor, our youngest son.

Not unsurprisingly, my husband’s blood pressure over the past year has been on the high side. Just before we crossed the pond in early August, it became worrisomely high. So, I convinced him to have a glass of grapefruit juice every day. After doing so, he said he felt better but of course, wanted to have it checked by a doctor, so we got him in for an appointment the week after we arrived here. He was greatly relieved to learn that his diastolic blood pressure had dropped a whopping 19 points (!) since it was last measured in July. There was no need to discuss medication, according to the doctor.

Exhibit B: Curious about grapefruit’s astonishing effect on blood pressure I did a bit of internet research on Florida and grapefruits and learned the following: Continue reading “Grapefruit consumption and the country reporting the lowest cause of death from hypertension”

Anecdotal evidence

Like many people, as I’ve aged, I’ve learned to trust my intuition when summoning the body’s ability to heal using non-drug interventions whenever possible.

Three examples come to mind:

Example #1. The amazing grapefruit. A few years ago for a while on and off I could hardly get out of the bed in the morning. I simply didn’t have enough energy to propel myself and had to sit down or lie down at every opportunity. My naturally low blood pressure had never bothered me before. What was I now doing differently that might contribute to the problem? It had to be something. The answer: Stop the recent daily breakfast routine of a glass of freshly squeezed grapefruit juice. Switch my daily baby aspirin from nighttime to daytime. Baby aspirin taken at night lowers blood pressure. I certainly didn’t need to aggravate my low blood pressure.

So, I’m guessing that anyone with high blood pressure should do the opposite: Drink grapefruit juice daily and if taking a baby aspirin to avoid strokes and heart attack, take it at night.

The usual disclaimer applies: I am not a physician. Check with your doctor.

Other examples of unexpected and rather miraculous healings to follow in future posts.

Why I don’t write about Chris much anymore

I haven’t updated readers a very long time on what Chris is doing. The main reason is that he’s thirty-four, and well, it just gets awkward. He’s done enough therapy and the ball’s been in his court for quite a while now. I’ve written my book, we can all take a breather.

Chris will be moving to Florida with me in August where he plans to enroll in a program that will help him find a job and upgrade his skills. My husband will join us when he retires early next year. Chris has a new girlfriend who he met in April. Not great timing given the move, but these kinds of things have their own timing.

He’s becoming more assertive and motivated by doing the Focused Listening music therapy every day and having a girlfriend who’s pushing him to achieve more. I feel like we’re in a holding pattern right now waiting to see if the promise of the music therapy will come to pass. (I’ve been told that I won’t recognize the old Chris once his ear muscle is no longer weakened by the medication. (Chris may want to begin tapering his medication after he transitions to his new environment.)

Booked for safekeeping

Booked for safekeeping is a 1959 Public Health Service instructional film intending to show policemen proper procedures for handling mentally disturbed citizens. It was front page of WikiMediaCommons* on May 31st. Well worth watching, for many reasons, but one that stands out for me is how important it is for the disturbed person to feel that someone is on their side and for the person who professes to be on their side, to carry through on his promises. This attitude applies in how family members establish good communication with their relative.

*Wikimedia Commons has more than 38 million media files, one of the largest free media collections in the world.

A psychophysical approach to treating schizophrenia

In my memoir, The Scenic Route: A Way through Madness (coming out in the New Year), I devote part of a chapter to The Alexander Technique. In researching the technique, I came across the name of Kitty Merrick Wielopolska who was a student of the technique in the 1930s. I haven’t read her book, but it seems that it would be well worth adding to a collection of schizophrenia memoirs that have credited healing to a non-mainstream approach. In this interview, I also learned for the first time about a relatively recent psychotherapy (phenomenological psychotherapy) which my experience tells me shows great promise in breaking the habitual patterns of thought that Alexander termed a “misuse of the self.”

Never Ask Why

THE LIFE ADVENTURE OF KITTY WIELOPOLSKA (1900-1988)
Her experience with the Alexander Work, schizophrenia and the psychic state

Published by Novis Publications, January, 2002. www.novis.dk

(NOVIS is a small publishing company specializing in publishing literature on the Alexander Technique)

The following is from Joe Armstrong’s interview with Kitty that was published in 2001 several years after her death

From the moment I met Kitty (Catharine Merrick) Wielopolska in 1966 – over ten years before we began recording these stirring conversations about her struggle with schizophrenia 1 – I felt she was an extraordinary person. But after hearing for the first time in these talks about her many breakdowns and the inspiration for getting herself well that she found in the Alexander Work, 2 I realized that there were many more reasons why she was so very remarkable than I could ever have imagined.
While these conversations don’t claim that Kitty used the Alexander Work itself as a direct means to her recovery, 3 I believe they do show that her intensive experience of it had a substantial indirect influence on her ability to find her way to health. This is because the Alexander Work is based on the conception that it is impossible to separate “mental” and “physical” processes in any form of human activity, and it would therefore require us to regard a condition like schizophrenia not just as a “mental disorder.” It would also require us to take into account the “use” of the whole person when diagnosing the disorder and searching for ways to treat it. “Use,” in Alexander terminology, refers to our combined manners of responding, moving, and thinking as they are manifested in our overall behavior at any given moment, whether the behavior is governed subconsciously by our habits or is consciously guided by our chosen intention.

With that in mind, it’s very interesting to read that at least one branch of psychiatry has recently been taking a psychophysical approach to schizophrenia and is focusing on the same area of concern that F.M. Alexander found to be central in re-educating the use of ourselves as a whole. Phenomenological psychiatrists such as Shaun Gallagher are considering the possibility that the “voices” heard by people diagnosed as schizophrenic stem essentially from a breakdown in what he calls our “protentional function.” This governs our ability to “anticipate experience which is just about to happen,” in contrast to our “retentional function,” which governs how we “retain previous phases of consciousness and their intentional content.” Gallagher also says that our sense of “agency” in both motor action and cognition “depends upon Continue reading “A psychophysical approach to treating schizophrenia”