Independence Day

I dropped Chris off at his new apartment a few days ago where he’d stay for a couple of nights as he eases his way into full time independent living. He’d spent his first night there the week before. It didn’t all go as smoothly as I had hoped. Chris was in a foul mood, alternately blaming me for pushing him out the door at the last minute without adequate time to collect his thoughts or his belongings while giving all the impression of being eager to put as much distance between me and him as possible.

Dumping him at the apartment Saturday morning along with groceries for the week-end and beating a hasty retreat after a shouting match about finding his door keys and his phone so that he could communicate with the outside world was not the way I had envisioned this auspicious day. In my mind I imagined warmly embracing him, both of us perhaps shedding a tear, and agreeing this day was long overdue.

I returned to the apartment a few hours later bearing the previous night’s dinner he could warm up. I saw that tbe grocerties were still in their bags, the bed was unmade, and he still had not managed to find his phone. We got into my car and drive back to my house (no longer his house) and ransacked the place looking for the phone which was nowhere to be found. I drove him back to his place and left him there to survive another night and day on his own. I’ll be there for Sunday night dinner, I promised. Pour a bottle of root beer over the pork and then plug in the crockpot for eight hours. That’s all you have to do.

Sunday night dinner was delicious and when I arrived, the place was spotless. Social services will eventually supply him with a house mate, but for the time being he is on his own.

He’ll make it work.

The 15 minute med check

After Chris’s psychiatric appointment was cancelled due to the doctor’s no show (see previous post) I marched up to the receptionist and demanded a new appointment –not two months from now, or even a month from now, but NOW!

Chris got an appointment for the following week. I accompanied him to the appointment as the doctor had encouraged him the first and only time he saw him to bring along his mother the next time. I came armed with the results of the neurofeedback brain mapping, hoping to get the doctor to request the insurance company to cover twenty sessions of neurofeedback.

Dr Jesus de N. was an avuncular man in his late fifties with (unsurprisingly) a Spanish accent. His friendly demeanor couldn’t warm up his office however, which had all the charm of an interrogation room. Three wooden chairs facing the desk, no artwork or personal momentos on display. I got the distinct vibe that the doctor didn’t occupy the space for very long and it was probably a shared arrangement. I waited while the doctor asked Chris to update him. Chris wandered all over the map, none of his utterings were connected to any point that I could discern. Now I know how logical Chris can be most of the time, but the doctor wouldn’t have a clue that the rambling person in front of him was fully capable of clarity. My interjecting to try to bring reason and linearity to the update and request a letter to the insurance company just made me look, well, illogical and rambling (schizophrenic). Like mother, like son, the doctor may have been thinking.

The doctor brought up the subject of meds and asked Chris where he was with his Abilify. In classic Chris fashion my son intuited that the doctor must want him to go back on the drug. It was hard to tell what Chris was saying but he seemed to be simultaneously telling the doctor that he was no longer on Abilify while teetering on the point of telling the doctor that he would be willing to go back on it! (He hates to disappoint.) I immediately jumped in and laid that one to rest. “Chris is off Abilify, has been off it since September, and he and I agree he’s doing just fine. He has no intention of going back on it.” (Remember, this is the doctor who suggested to Chris at his first appointment that he consider taking Abilify in long term injectable form.)

“So, what’s the purpose of this visit? We only have fifteen minutes,” said the doctor, not unkindly. “If Chris isn’t on meds then there’s no point is my seeing him. Our clinic can provide talk therapy if he wants it.”

If finally dawned on me. This wasn’t a fifty-five minute appointment. It was a fifteen minute med check. Why hadn’t Chris told me this after his first appointment? I wondered. For months I had been under the impression that Chris had spent an hour with the guy.

Our fifteen minutes was up. On our way home, Chris and I high fived each other on the outcome.

Freedom! Freedom! Letting go of psychiatry US style

Today’s vignette is not about the way letting go of psychiatry is supposed to work. Let me explain. Normally when people write about how they ended their relationship with psychiatry, they talk about how they made a conscious decision to just stop going to their appointments, maybe because they felt they no longer needed them or perhaps because they didn’t feel they were serving any useful function.

Chris has seen Jesus de N. (his psychiatrist) ONCE since we moved to Florida in August. Today he attempted a third try only to be told that the doctor had a problem with his car and would be late. Chris was prepared to wait until the doctor got there, but was told that he’d have to make a new appointment because the doctor would not be arriving any time soon. (This was the second time in a row that the doctor has cancelled.)

So, the question is, does Chris actually have a psychiatrist? I think not. He has a psychiatrist on paper, someone whose office he can phone to get a referral, someone who can satisfy our insurance company to continue to cover him, but this person is not someone he actually sees. He is free to do what he wants, unencumbered by psychiatry. This is brilliant! I’m surprised that more people who want to escape psychiatry’s clutches aren’t praising the system here in the United States. (Dr. Stern, Chris’s psychiatrist in Switzerland used to phone him if he missed an appointment or was late. She rescheduled any missed appointments for the same week. Not the case here. Here, it’s like the psychiatrist doesn’t think he needs to see his patients.)

Hallelujah brothers and sisters. Free at last!

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.

Read more here 

 

 

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”