Journeying back to Self

Chris and I wish you and your family a wonderful New Year.

It’s been fifteen years since Chris was first hospitalized and more than that since he began to show symptoms of psychosis.

Today’s is my last post.

Thank you friends and readers for joining this blog and sticking with us. I started this blog in 2009, and recently welcomed my 150th follower. Thank you for your comments, thank you for personally getting in touch with me and sharing your own stories.

Chris is much older than when we started out and I’ve said and done all that can be said and done. The blog will still be here for reference and entertainment purposes only. My New Year’s project is to improve the categorization of my posts to make the blog more accessible. Pick a post, any post, and you may find something informative or just fun to read. If you would like a condensed version of the journey, do consider purchasing my book. I can guarantee, you’ll love it.

Just when I thought Chris had plateaued, something surprising happened. Chris’s motor tics have greatly diminished. I’ve noticed, too, that he is taking more initiative, such as going regularly to the gym and by speaking up for himself. The newfound initiative is a welcome sign because the negative symptoms of schizophrenia (motivation/initiative) are the hardest to treat and are what keeps most people with serious mental illness from working or studying.

This sudden shift appears to have been caused by his being prescribed an antidepressant back in August for his OCD symptoms (in addition to the Abilify he has been taking on and off at low doses for years). We learned that an antidepressant could reduce the tics. I’m now wondering if his problem all along has been some form of OCD and underlying depression that got labelled schizophrenia. These labels (and the drugs that are prescribed to treat the symptoms) are increasingly interchangeable (but not always effective).

Here’s what I know after fifteen years, and it’s not much. The treatment for what is called serious mental illness is woefully hit and miss. Nobody gets it. Psychiatrists haven’t much of a clue and, despite years of trying, neither have I. We are at the mercy of the latest research results that may or may not help our relative. I had understood for many years that antidepressants were not recommended for schizophrenia, as it was thought that they could drive the person into mania. My husband was all in favor of trying one, Dr. Stern and I were not. Nobody even raised the possibility of OCD in Chris’s case.

I had no idea that motor tics were a sign of OCD and I’m guessing that this nugget of information is something that has come out only within the past decade. I recently stumbled across a page from the Mayo Clinic linking motor tics to an underlying symptom of schizophrenia. (Never heard that one before. Have you?)

I don’t know if these promising changes will last. Who knows what Chris’s future holds? I’m optimistic. He’s has a lot to give.

Parting thoughts

  • Trying anything is usually better than trying nothing. (In my experience, all interventions, coming from a place of love, lead to small improvements).
  • Learning good communication skills is essential.
  • Be an advocate for your relative. When it comes down to it, you’re on his side, not the doctor’s. Leave no doubt that you want what your relative wants and you will try your best to make it happen.
  • Holidays bring added stress.
  • Drugs have their place, but keep them as low as possible and never stop searching for a drugless alternative.
  • Not all doctors are automatically wrong. Be open to what they have to say.
  • Take an interest in this most intriguing condition. Enjoy the mystery.
  • Lighten up. The journey has its moments.
  • Look after your own health.
  • Live in the moment.

Someone who did have a clue about what is called mental illness was author Herman Hesse, my go-to person for his reflections about journeys and discovery. Chris and I leave you with this:

“One must find the source within one’s own Self, one must possess it . Everything else was seeking — a detour, an error.”
― Hermann Hesse, Siddhartha

Does neurofeedback work?


Eric Coates wrote an interesting piece on neurofeedback on the Mad in America website, Neurofeedback is Not for Everyone: The Dangers of Neurology   His experience with it and the subsequent comments on the article taught me what to look for in  finding a qualified practitioner for Chris. Not everyone who practices neurofeedback has the right credentials, as I learned at the first center that I called where no one on the staff had the critical letters after their name. The director of that center said that he was pulling together the right staff, but it was going to take time. There is a skills gap in making neurofeedback more available to the general public.

The Coates article was the catalyst for me to dig a bit further. Why had I not realized sooner that neurofeedback could be useful for someone with a diagnosis of schizophrenia? I accept that “schizophrenia” is a term that covers a variety of symptoms, making it a rather meaningless term. What is really at stake with “schizophrenia”, what prevents the person from forming meaningful relationships, working full-time, furthering their education, paying income tax, are the negative symptoms that affect motivation, energy, and logic. Focused listening, which Chris has been doing for the past year, has been very helpful in addressing some of the negative symptoms. I believe that doing it daily has enabled Chris to successfully get off his medication and demonstrate increased logic. However, his motor tics have not abated. They are a huge impediment to his moving forward. Part of me thinks that he can control the tics, but chooses not to when he’s around me, his way of expressing dissatisfaction with the status quo. It’s the motor tics that brought us to neurofeedback. 

Neurofeedback is a type of biofeedback where sensors are placed on the scalp to pick up real-time displays of brain activity to teach self-regulation of brain function. It strikes me that outside of research facilities neurofeedback therapists are concentrating their initial efforts on the large demographic of parents of school children who want their kids to succeed in school through greater focus and concentration. Like Tomatis Centers they promise improved attentiveness and impulse control; a decrease in hyperactivity; improved academic, athletic, and artistic performance. “Reduced extraneous movement” is one area that caught my attention. There is ongoing research into the effectiveness of neurofeedback for disorders such as autism, anxiety, depression, chronic pain, etc.

The staff at the next center whose website I looked at had the right credentials and the director had been working in neurofeedback for the past thirty years. Chris prepared for the first appointment by answering a lengthy questionnaire focusing on why he was seeking neurofeedback and what else he had tried in the past to alleviate his symptoms. The two of us put our heads together to tally the many treatments he had tried and articulate why further treatment was being sought. To be clear, the therapies he has tried to date were not directed at the motor tics per se, they were part of ongoing attempt to improve his logic, get off his medications, act “normal”, advocate for himself, etc. He e-mailed the questionnaire to the center and received back an on-line cognitive assessment which took about 20 minutes to complete. 

We met with the director of the center that same day. The staff person at the Center encouraged me to accompany Chris as I would have further useful information to contribute. 

“So, tell me why are you here?” he asked. I sat on my hands and kept my mouth shut, knowing that Chris would reveal all. Chris said that he had motor tics. If there were any doubts that Chris has motor tics, he quickly dispelled them. Throughout the interview he was flopping around on the couch like a newly caught fish on the bottom of a boat. “Are these the tics you are talking about?” asked the director at one point as Chris winced and wiggled. Anxiety, motor tics, schizophrenia, OCD, Tourettes, emotional lability, whatever it is that Chris is suffering from, it was all there on display. Chris rambled quite a bit, there was no coherent time line of events and a vast chasm between how he interpreted what happened to him and how I saw it. He said that he was first hospitalized at 18, whereupon I interjected to say that it no, it was at 20. When the doctor asked him what he felt contributed to his psychotic break, Chris pinned it firmly on his alcohol intake during his first year at college, and alluded to having a drinking problem that he believes has continued unabated to today. The director then started talking about addictions and I had to raise my finger as a point of interjection to keep him from heading down the wrong path.
 
“Chris, from what I’ve seen, you have no alcohol problem, unless you consider having an occasional glass of wine or a single beer an alcohol problem. If anything, I’d say you have a guilt problem and somehow has convinced yourself that you’re a semi alcoholic. You may have had too much beer during your first year at university, but who hasn’t done that? 

This is where Chris got angry and started to throw his father and me under the bus, alluding to OUR supposed alcohol problem. But, he quickly forgot where he was going with that and calmed down a bit. Had I not intervened, the doctor would have assumed that Chris has a drinking problem, which he patently does not. 

We limped through the rest of the interview. There was no logic on display. The story coming out of his mouth was not the story coming out of mine. I was totally confused trying to keep up with where Chris was going. The two of us presented an emotionally wrought, confusing narrative. We were pathetic. I did learn one thing though. Chris told the director that he hasn’t been on medications since September, to which the director nodded approvingly. “We can get a much clearer picture of what’s going on with your brain,” he said.

“So when he was hospitalized the second time, what do you think was the reason?” the director asked me. I said that in retrospect I first believed that we were trying to push him back to college and he didn’t want to go, then I said that with the passing years and further reflection, I began to think that the supplements he was on were good but not good enough to keep him from relapse, then I said that from the vantage point of even more passing years, it’s anyone’s guess as to what was happening. The correct answer, I assume, the one the director would say, is that his brain waves are stuck in an abnormal feedback loop and he hadn’t learned how to control them.

Reconfiguring your brainwaves for optimal mental and emotional health sounds plausible to me, but is it just another therapy that makes intuitive sense but doesn’t really work well enough for most people in practice? On the other hand (and this is important, so listen up), why should Chris or I care about how it works for most people? it really only needs to work for HIM. I’ve heard people say that they overcame their afflictions (let’s assume it always related to a lack of focus) through niacin therapy, through psychotherapy, through Focused Listening (Tomatis therapy) through the power of love, through Bible reading. For example, years ago I increased my focus big time through niacin therapy, but when I recently tried Lions Mane and niacin hoping for even more, nothing happened. Perhaps the niacin therapy I did years ago set me up for life. Similarly, through listening to high frequency mostly Mozart violin concertos, I stopped a lifelong nail biting habit. That was a visible expression of any anxiety that my body and mind were dealing with, but I had no idea that Focused Listening would fix it.  

I always hope that the latest treatment tried will be the last treatment tried because it delivers on the promise. 

More to come on neurofeedback. Stay tuned.

You might also enjoying watching Dr. Daniel Amen on the most important lesson learned from 83,000 brain scans

Is neurofeedback the future of psychiatry?

It’s nice to be back to some semblance of a routine after the holidays. I had back-to-back houseguests, twelve in all if you include my husband and two younger sons who flew over from Europe. No time to even think about a blog post until now.

The guests have gone home and the glass ornaments has been put away till next year, so here’s an update of what’s been happening. Chris is seeing a psychologist for his motor tics in addition to the psychiatrist who seems to there as a placeholder only. So far, Chris has had only one appointment with him. Chris’s first and last appointment was in October. The next one is for the end of February. This is managed care, I guess. I’m not actually complaining, as the lack of attention can work in the client’s favor. The client should feel liberated enough to manage his own care. That’s my spin on it, anyway. Or, maybe his psychiatrist is busy studying neurofeedback. More about that later.

Military language seems to have made steady inroads into everyday American life over the past few years. My husband and I noted that our visits to our new family doctor are considered “encounters” according to the printed reports that we are given on leaving the clinic. “Do you think, though, if we called the office asking for an “encounter” they’d understand what we mean?” he asked rhetorically. We’ve been hearing a lot of late about government workers being “furloughed,” rather than being “sent home.” My reminder that an automatic bill payment  was going to be “drafted” from my account was mind bender. Had to read and reread it several times before realizing that my account was going to be debited. In banking terms “draft” to me means to prepare a cheque, not to take money out of the account.

Chris is enjoying his new recovery program, which is a privately funded vocational training center. The vocational part is helping people with Chris’s diagnosis gain skills needed for entry level jobs in the service industry. The staff doesn’t put a cap on their expectations as to what someone is capable of achieving with their life, but the idea is to start slow and gain confidence. Chris has been going most days and often comes home dead tired. Good. It’s about time. He seems to be getting by on very little to no medication. He’s got traction under his feet. . . .  

. . .  if it weren’t for the motor tics that continue to plague him. The next stop for us is NEUROFEEDBACK which promises great things – a cure for all kinds of issues that make concentration and focus difficult. It works on PSTD, OCD, Tourettes, bipolar, disorder, schizophrenia, depression, etc. Neurofeedback talks a good game. If we believe the promise, it is the future of psychiatry and will turn psychiatrists into neurologists. It will complement the work Chris has been doing with Focused Listening. We’ll see how far he can run with it. 

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.

NAMI’s 12 Principles of Support

One evening last week, in an effort to be more of a joiner (and for the material, naturally!)  I headed to a church for the monthly parents’ meeting of the local NAMI chapter. The turnout was impressive and as people came in and sat down there was a lot of joking and general bonhomie. Hello, I thought, these people don’t seem to fit my image of the stereotypical NAMI members as sad, depressed, and blaming. This is great. We introduced ourselves to each other as we sat in chairs forming a circle.

The circle got bigger as more people arrived. There must have been at least twenty five parents in attendance. The leader for the evening had us read aloud from handouts the 12 principles of support, guidance on how we should conduct ourselves during the meeting, how we are should view mental illness, our loved ones, and each other. We see the individual first, not the illness, we are not to judge others, we embrace humor as healthy, etc.

Before beginning, we were asked to accept these principles of support as the basis for what goes on in the meeting. I asked if we had to support every principle, which got chuckles, but no answer. I did had a problem with Principle no. 2 We recognize that mental illnesses are brain disorders. Wanting to be more of a joiner, I raised my hand along with the rest of them as a show of general support for the principles.

Each of us then had two minutes to introduce ourselves and our situation. Continue reading “NAMI’s 12 Principles of Support”

Come to Jesus

I’ve been busy transitioning to Florida starting in early August. Apart from buying a new car, finding a family doctor, camping with a cooler in my own home because the fridge died, setting up new accounts everywhere, I’ve also had my first experience in the United States with buying prescription drugs (in this case Abilify) and trying to find an “open-minded” psychiatrist, meaning one who is willing to respect the current low dose of medication my son is on and to collaborate with Chris in an eventual tapering program.

I can’t say I was shocked at the price that the pharmacies here bill the insurance company because I knew that prescription drug prices in the United States are astronomically high compared to most other countries, but when you come face to face with it, that’s another story. Ouch. The first time Chris attempted to pick up his Abilify prescription, he realized that the doctor had ordered the tablet form of Abilify. $1800! I heard the pharmacy clerk whisper to her co-worker.

What? $1800 for presumably a 30 day supply that costs the equivalent of  $120.00 in Switzerland?

Once Chris clarified his need for liquid Abilify with the doctor, we went back to the pharmacy and I heard the pharmacist whisper “$500.” Well, that’s not so bad, I thought, although it seemed a bit strange that the liquid was cheaper than the tablet form.

Then I saw the bottle. The measly 30 ml supply of liquid Abilify cost $30. A 150 ml bottle costs the equivalent of $200 in Switzerland. Doing the math, 1 ml of liquid Abilify costs $16.66 in the US and $1.33 in Switzerland.

“Do you want us to put you on automatic monthly refill?” the clerk asked Chris.

“No, no, no!” I frantically signaled to him from where I was sitting, lest he cave, which he has a habit of doing. Obviously, the clerk isn’t clued into the fact that Chris doesn’t take it as it’s prescribed. That’s the same challenge he’s going to have to put to a psychiatrist. He doesn’t take it as prescribed, which is the beauty of liquid Abilify, the flexibility inherent in an easily titratrable form. We left CVS with the prescription filled and no money forked over.

The psychiatrist recommended by the family doctor isn’t taking on new patients, I found out. Now I was on my own, with no recommendation at all, so I started calling around. I was told that my best bet was at a behavioral health center. I found one near our home and phoned for an appointment. Had to leave a message on the answering machine. No one called back. I thought about just driving over and asking for an appointment, but that would be too simple, and was obviously the wrong approach to take in these matters. A human to human interaction when booking an appointment  is so passé. I was learning. I went to the company’s website, filled out a  message form involving no more than 220 characters, and hit “send”. Continue reading “Come to Jesus”

Convincing people who are convinced they don’t need help

I popped in to see Jennifer last week to see how she was doing and to find out if she had started the Focused Listening program (which she hadn’t). She seemed in need an outing so we got in my car and went for a coffee at a hotel by the lake. No sign-out procedures at the hospital. I doubt anyone knew she was gone. This made me think that the staff believed that the headphones that I gave her a few weeks ago posed no suicide threat. Because of the hospital’s liberal policy of allowing patients to wander off-site I figure she has ample opportunity to kill herself and so I don’t need to go wireless for her.

Conversationally, she’s much improved. I disregarded the occasional forays into paranoia. (The bloodbath is still raging in town.) She said she’d like to work again, and that was my chance to reinforce the music therapy by saying that that my son hoped to work, too, and Focused Listening might help get them both there. Any chance I got, I put in a plug for listening to the music. She went to the washroom. I donned my headphones in her absence so when she came back she could see how much I was enjoying them.

We got back in the car and she suddenly suggested that I drive her to her old apartment so she could pick up some summer clothes and shoes. People (she didn’t say who) have been cutting holes in her shoes. She showed me where there was a hole.

When I got home after dropping her back at the hospital I wrote her a letter and posted it later that day. I wrote that the next time I came out, I’d like some reassurance that she had been doing the therapy. I would bring my headset and we could go for a walk.

A meeting with the Board

I took my proposal to help Jennifer (see previous posts) to my Board meeting last week. What I was looking for was a commitment from the members present that the Club would support her by making sure that she has what she needs to concentrate on her Focused Listening. I’ll be moving to Florida this summer and regret that I won’t be around to keep an eye on the situation.

I told the Board that I don’t know at this point whether Jennifer will want to devote two hours a day to the listening. To find that out I’ll make a couple of more visits to the hospital to see how it’s going.

Interestingly, three people on the Board have professional experience dealing with psychiatric patients: A social worker, a psychologist, and a pharmacist. The social worker was entirely in agreement with taking on the “Jennifer project” and wants to be part of the long run plan. The pharmacist had just written her boards the day before on psychiatric drugs and raised lots of ethical and liability concerns about the dispensing of care. The psychologist raised a further concern that the Focused Listening music therapy was not peer reviewed science.

What I take away from this is that professionals will always tell you why something can’t be done. Deviations from the norm can be construed as dangerous and untested.This seems especially true in psychiatric situations. The psychologist and the pharmacist no doubt felt duty bound  to raise the issues, and the Board was probably prudent in wanting to limit its liability, but the reaction is an example of why I think it’s a good idea to limit one’s exposure to the medical model. Progress will be slow or non-existant if health care is left to the professionals. If there Board might have been inclined beforehand to make it official, they weren’t about to after hearing from the professionals.

The President proposed that the Club informally help Jennifer, and she encouraged any  member to informally contribute keeping Jennifer supplied with visitors and focused Listening equipment. Afterwards, two Board member approached me and offered money to keep the project afloat.

All in all, a wonderful outcome to the meeting.

 

 

 

 

“Jennifer”

I have been aware of “Jennifer” for almost fifteen years. I can’t say I really know her, but at one point I made a concerted effort over the course of a year to visit her in the psychiatric hospital. She’s pretty, she has a daughter who lives with her an ex-husband, and for the past two years at least, she’s become progressively very, very, delusional. From what I’ve seen, and from what others tell me, she wanders the streets every day, alone.

She has nobody in a position of real caring to help her. I mean family. Her mother lives far away. I tried contacting the mother at one point to find out how I and others could be of more help, and was rather rudely brushed aside. If the mother had been smarter, she could have swallowed her understandable anger enough to establish contact with people who were willing to visit her daughter and would gladly welcome her suggestions as to how best to help her daughter. It’s blindingly obvious that involving non-relatives is a poor substitute for a having a mother in close proximity, but it’s certainly preferable to having no one.

I tried calling Jennifer’s state appointed guardian today. The office phone rang and rang and rang, then a message clicked in that nobody was around to take the call (despite the fact that my call was during office hours). The message instructed me to call back later. So, I called back later, and got a woman shouting to me over the loud music in the background that the guardian was out, call back later. I called the office for the third time that hour, was told, after checking with the guardian, that he was busy, and I should e-mail him. Long story short, I found out she’s back in the hospital.

This is a contained opportunity to do more.

Resume the resume

I’ve been helping Chris spruce up his résumé this past week. It’s not targeted for employment, it’s more of a snapshot of what he’s been doing in the past few years, which is lots, judging from the content. There’s all of his chorus and solo work as a member of a musical theatre group and the church choir, as well as community service work, along with his part time course work.

What is not evident from looking at this very impressive list of accomplishments is the behind the scenes frustration trying to make sure he got to the places he needed to be on time. There were so many no shows and late shows on his part. Chris often didn’t realize that a rehearsal had been cancelled or changed to a different location. He got on the bus, went all the way there, only to discover a darkened hall. Or, he was so slow getting ready to go out that I had to drive him to make sure that he made a timely entrance. He was usually late for choir practice. I can’t tell you the number of times that he was late to a class, so he didn’t bother to go. The number of missed or partial voice lessons: “I don’t want to receive a message Ever Again! on the answering machine from your teacher wondering where you are.” (And then it happens . . . Again.)

In reviewing the résumé, Chris told me that he recently went back and completed the two week certificate course that he had walked out on several years ago. (Too many people in the class back then, his head wasn’t in the right place, etc.) Tying up the loose ends by resuming what he started seems to me like very good news, indeed.

interesting that the English word “resume” is résumé in French.