Believing in recovery

Many of us don’t believe in recovery. We think we do, but we are often unwilling to take the necessary steps. While I am admittedly hard on doctors, doctors can only get away with what they do because they have you as a patient. You may be of the scientific persuasion, a person who reassures him/herself with facts, double-blind studies, and the latest findings in leading scientific journals. You and your doctor will no doubt be very sympatico. When your doctor tells you there is no hope, you will believe him because it fits with the kind of person you are. You will continue to take your meds and be a good patient. You are most likely very conversant with what is written in the product literature.

The technical language of psychosis is so dreary it is hard to muster any hope. Prodromal symptoms, extrapyramidal symptoms – this vocabulary is how schizophrenia is introduced to new patients and their worried relatives. A big downer. When Chris was first hospitalized five years ago, the social worker told me brightly that why, in five to 10 years time, exciting changes were foreseen. I believe she was alluding to a miracle cure. The problem was, Chris didn’t have five to 10 years to wait for something that had eluded medical science for the past 100 years. He needed to start getting better immediately.

It is now over five years for Chris and I have yet to see that miracle cure, although I hear there is one underway. Nor do I expect one. It has taken me at least four years to realize that schizophrenia isn’t all about the biochemistry. Your doctor believes it’s all about getting the biochemistry right, though. In my experience, it’s not just the doctor prescribing medications who talks almost exclusively biochemistry, it may also be the doctor who is trained in alternative, complementary medicine. An MD after the name still makes doctors think mainly in terms of biochemistry.

Like Chris’s doctor who conceded initially that vitamins may not help, but they probably don’t hurt, this is how most medical doctors view the psycho/spiritual side of psychosis. They give it a place, but not a big one. Then they get right back to focusing on the biochemistry. The psychiatrists who specialize in certain therapies, such as Jungian, Freudian, Adlerian, Gestalt, etc. have a much broader perspective on the mind’s power to heal itself. These kinds of doctors are a luxury for many. We have also been told for the past several decades that “talk therapy” is of little help for schizophrenia.

If you are going to reach beyond a purely disease approach, become open minded to the rich tapestry of life, to writers, poets and people who think differently than your doctor does about the human condition.

Your doctor is not your friend

So, it seems simple, doesn’t it? You take your vitamin and mineral supplements, and within a few weeks or a few months you are back to normal.

There are many complicating factors preventing what I thought was supposed to be a fairly straightforward thing. Chris has been taking his supplements now for four years. He definitely seems more normal, but he is still not paying income tax and neither does he seem interested in making this a goal.

If Dr. Hoffer was as successful as he was in treating patients, now fifty years on, why is schizophrenia still viewed as “chronic”? Or, more personally, why aren’t you well?

I will throw out three ideas. One is your doctor. Two is you. Three is the competition. These will be discussed in separate posts. I’ll begin with your doctor.

Your doctor probably doesn’t believe in vitamins and may do everything he or she can to undermine your desire to introduce these into your personally designed program of total health.

Chris’s psychiatrist was one such person. To be fair, the psychiatrist was part of the institution in which Chris was enrolled as a day patient. So, it wasn’t necessarily the doctor who disapproved of vitamins. It was the institution that saw it as a threat to its way of doing business. The institution has a program to help young people in their twenties reintegrate back into society by giving them a focus for their day, therapeutic activities and medications. Recreational drugs were forbidden (rightly so) for those enrolled in the program but medications were not just encouraged, they were mandatory.

When naive me let the doctors know that Chris was taking vitamins, at first they said this was fine with them. They said the usual stuff like “vitamins aren’t proven useful, but they are not really harmful either.” When I began to notice improvements in Chris (usually I noticed the improvements – the doctors did not) I asked that Chris’s medications be lowered. The stage was set for conflict. If Chris had a problem with incontinence, for example, I blamed it on the medications being too high, they blamed it on the vitamins. If Chris was more out of it than usual, the doctors said his medication needed to be raised or even changed. To this I countered, “well, since he’s on medications, why is this even happening?” So then they would earnestly talk about damaged brains and the need for medications to protect the brain from further deterioration. I’m sure you have seen pictures of the damaged schizophrenic brain. It looks like a blue bicyle helmet that has had pink paint dumped on it.

One of the hardest parts of all this is having a spouse/family member who disagrees with your approach, or who may be supportive but is understandably worried about being wrong. None of us operates in a vacuum. This makes unilateral action on using vitamins challenging. The doctors and pharmaceutical companies exploit this, believe me, by terrorizing us about the damaged brain.

So, we try to work with vitamins in a climate of fear. It would have been wonderful if Chris were never on medications and if he had started on vitamins as soon as we thought something was wrong. But we didn’t know about vitamins or schizophrenia at the time, and we believed the doctors when they told us that medications were not only effective, but necessary in treating schizophrenia.

There is tyranny in the vitamin approach, too. I’ll save my comments on this for another day.

Why it is an honor to pay income tax

In the 1950s, Dr. Abram Hoffer, together with Dr. Humphrey Osmond, successfully treated hundreds of schizophrenic patients at the Saskatchewan Hospital, with supplements aimed at correcting the body’s biochemical imbalances, a treatment approach later termed “orthomolecular medicine.”

Dr. Osmond and his student Dr. John Smythies noticed that schizophrenic hallucinations are like hallucinations suffered by otherwise normal people who have taken a bad mescaline trip. Mescaline belongs to a family of psychedelic compounds known as phenethylamines. It is present in several cactus species of the American Southwest and the Andes mountain range of South America and used by native American tribes in certain religious and mystical practices. Adrenaline, which is naturally produced in the body, is similar in its properties to mescaline.

Drs. Hoffer and Osmond hypothesized that schizophrenics produce an excess amount of an amino acid similar to adrenaline (which they called “adrenochrome”); this amino acid is also produced naturally in the body. Dr. Hoffer determined that adrenochrome belongs to a different family of psychedelic compounds known as “indoles.” (LSD is an indole.) Dr Hoffer prescribed niacin in high doses to reduce adrenochrome levels. It works.

Dr. Hoffer defines recovery from schizophrenia as threefold: The person is able to function well with friends and family, is free of signs and symptoms, and is able to pay income tax.

Dr Hoffer is still in the minority of doctors and institutions who think so optimistically about schizophrenia. The standard medical opinion is that the most one can expect is managed recovery, quality of life, and part time work if any. Dr Hoffer expects more. Why are most so-called experts setting the bar so low? It surely has something to do with the word “cure”. Many people shudder at the use of the word cure” in the context of schizophrenia. A cure simply means that someone with an illness has become healthy again or it can be the solution to a problem. If you rely solely on pharmaceutical solutions, curing schizophrenia is difficult, if not impossible.

Be wary of institutions that talk about ending discrimination of the mentally ill, e.g. the problem with mental illness is “stigma”. No, the problem with mental illness is that people are not getting well in sufficiently large numbers. The mentally ill have been discriminated against because they haven’t been seriously helped to get well. Most institutions promote mental illness as chronic and hopeless. Let’s not set the bar so low. Why, for heaven’s sake, instead of celebrating people whom they seem to regard as chronically disabled, don’t these organizations say that they are dedicated to helping people with serious mental illness get over it and get on with their lives? Why not, indeed?

Orthomolecular Dr. Hoffer

Dr Abram Hoffer is the dean of orthomolecular psychiatry. He is the first, the starting point, the base, for anyone who wants to learn more about what schizophrenia is and how best to treat it using vitamin support. Orthomolecular is a term coined by Nobel laureate Dr Linus Pauling. It means “the right molecule”. It is using supplemements to correct biochemical imbalances.

Dr Hoffer is still going strong at over 90 years old. I like Dr. Hoffer. I wrote him a fan letter in 2005 after Chris had been on his recommended combination of niacinimide (vitamin B3), vitamin C, B-complex, omega 3 and zinc for only a few weeks. The changes in Chris after such a short time were noticeable, despite the fact he had been on meds for over a year. He was more focused and engaged. His skin became clearer. His hair, which was becoming alarmingly thin for someone his age, became thicker.

Dr Hoffer’s book, How to Live with Schizophrenia, is a must read. It is positive and upbeat, unlike some other well-known and widely quoted authorities on schizophrenia. It is loaded with good tips and really interesting observations. He respects his patients and learns from them.

I also have been faithfully using his recommended combination of vitamins since 2005. Interestingly, what works for schizophrenia also works to prevent alzheimers/dementia, according to Dr Hoffer. Here, there are a couple of things to keep in mind. The first is the word “prevent”. Once dementia begins, vitamins are ineffective. The closer in age you are to dementia (for all practical purposes in your sixties) you should substitute niacin for niacinimide. If you are in your fifties, you should begin with 3 grams of niacinimide per day and an equal amount of vitamin C (to prevent liver damage), a B complex (to make the other vitamins work more efficiently), and throw in an omega 3 and a zinc or another B vitamin (B-6, B-12). Niacin produces a burning sensation in your body. It is harmless, but nonetheless rather scary if you don’t know what to expect.

I never plan to be without Dr Hoffer’s recommended schizophrenia/dementia vitamins. People laughingly refer to “senior moments”, but in my early fifties I was having trouble focusing. At the time I attributed it to the stress of juggling family and work responsibilities, but I feel now that my brain was tired. After only a few days on the niacinimide formula, I felt on top of my game intellectually. I could push through to complete a complex series of thoughts. I now had intellectual energy whereas before I had little. I began reading more complex books. I began to write my own book. Like Chris, my skin became amazingly clear. My hair grew back its former thickness. I was much calmer.

If you think of holistic health as a pyramid, orthomolecular medicine is the broad base of the pyramid. Proper foods, vitamins and minerals are the building blocks of good health.

Here is Dr Hoffer’s vitamin package, courtesy of the Canadian Schizophrenia Foundation.

SUPPLEMENTS: Vitamin B3 (niacin or niacinamide) 0.5 – 2 grams 3 times daily. Vitamin B6 (for many) 250-500 mg daily. A general B vitamin formula. Vitamin C, 3 or more grams daily. Zinc (gluconate or citrate) 50 mg daily. Manganese 15-30 mg daily (if there is danger of tardive dyskinesia).

The list of therapies

Psychiatrists say that single events can be over-determined. Rather than there being one reason and only one reason for something happening, there can be multiple explanations for a single event. Chris’s current hospitalization is not the result of a single event. The obvious explanation to the well meaning outsider is that he needed his medications.

The less obvious explanations arise from what had been happening in Chris’s life over the months leading up to this crisis. Despite the vitamin support that had worked so well for him before, during and after he stopped his medications, something scary was now happening. He dropped his classes, stopped his voice lessons, rambled frequently off-topic, and tested the patience of his family and friends alike. It had all the hallmarks of a return of his psychosis. Did I mention he was angry? He started to express anger for the first time in his life. He scraped the flesh off his knuckles by driving his fist so hard into the wall.

Chris has yet to offer a definitive explanation as to why this recent crisis has happened. He does say he truly missed his younger brother Taylor, who went away to university about the same time that Chris started to change. My husband and I say that we pushed him too hard to think about returning to university full time. Our expectations likely frightened him. Other people had expectations, too. Chris’s voice teacher encouraged him to fulfill his considerable potential as a vocalist. I believe that Chris is struggling with the implications of what it means to become well.

I remain convinced that this crisis is a necessary passage for Chris. He is on a more solid platform this time around and will continue to grow in health, thanks to the following:

1. Orthomolecular medicine
2. Medication, when necessary, in low doses and for short duration
3. Energy medicine/EFT/Visualizations
4. Assemblage Point shift and shamanic rituals
5. Magnetic therapy
6. Cathartic psychotherapies/e.g. Family Constellation Therapy
7. The Alexander Technique (not a therapy in the standard sense)
8. The Tomatis Method
9. Psychoacoustics and bioharmonic resonance
10. Time and understanding

In the coming days I will discuss these interventions and more.

Well meaning people

The other day a friend said to me, “Rossa, I always tell people the truth and it may not always be what they want to hear, but you know, of course, that Chris will always have problems.” She went on to say that she does know one lady in her sixties who is managing very well on her medications and even was working. The point my friend wanted to put across was that Chris will have fewer problems if I accept the fact that he needs to be on medications.

My friend’s comment speaks volumes. She knows that Chris is currently in the hospital and had been off medications for a year. She is well intentioned, as are all the other people who have come to me recently to say that Chris needs to be on medications. The problem is, to paraphrase Professor Harold Hill, “they don’t know the territory”. They have heard that medications are needed for people with schizophrenia. They haven’t heard or experienced the other side of the debate. They don’t even know there is a debate going on.

I didn’t try to argue with my friend. I know that arguing the point would make me look like I am a mother in denial. I will just continue on my chosen path.

Yes, Chris is in the hospital. Going back into the hospital automatically means medications as the price of admission. I’m not happy about that part. However, I do not view his latest hospitalization as a failure of our holistic interventions. Nor do I see the re-emergence of his problems stemming from being off the medications. This time around the hospital is getting a better product in my son. He is communicative whereas he was almost mute the first time he was hospitalized. He is rational for the most part. He is able to express anger and pain. He is no longer overweight.

The doctors and nurses are seeing a more functional person this time around. I attribute this to the therapies undertaken over the past five years and caring enough about Chris to monitor his daily regime of vitamins and activities.

When well meaning people come to me, I thank them but just sigh and think “they don’t know the territory”.

Who am I? What am I here for? Why you might be interested in what I have to say.

“Who am I and what am I here for” are the fundamental questions of our existence on this planet.

I am Rossa Forbes, a pseudonym for me. I became a new me, a wiser and more focused me, when my oldest son was diagnosed as having schizophrenia. That was six years ago when “Chris” was 19. His diagnosis forced me think about many things in a different way.

My blog is for people who expect more out of recovery than what they are currently achieving.

I was naive when I started on this journey. Over time I became very critical of the medical treatment Chris was receiving when I realized he wasn’t getting better, despite the huge amounts of money being spent. I expected “better”. I expected “well”. Doctors instead spoke about “recovery”. Recovery is such a vague concept. It seems to be associated with quality of life, another term that I abhor when it comes to schizophrenia. Who wants to be spoken of in terms of “quality of life” when you are young and your whole life is ahead of you?

BS (before schizophrenia) I thought life was pretty good. I still do, but it is much more meaningful. Schizophrenia is not like other illnesses. I do not really consider it an illness, so if you are looking for advice on medications and how to deal with schizophrenia as a brain disease, this blog is not for you. I do consider schizophrenia a “problem”. Something isn’t working well for the individual and it is certainly a huge problem for the family members. Problems can be solved, however. They take time and effort. Nobody said this was easy. A brain disease, on the other hand, sounds final. And, of course, expensive medications are prescribed for this brain disease. These medications also have rather serious side effects.

While I hesitate to even use the term “schizophrenia” in this blog, it is useful shorthand for a collection of characteristics related to someone who is having difficulties with living.

The purpose of my blog is to do the following and more:

1. Introduce you to holistic therapies that my son underwent (I tried most of them, too.)

2. Explain why a holistic approach is better than a medication only approach. Holistic allows that low doses of medication can be useful and often necessary, but should not be considered a long term strategy.

3. Stimulate a positive and even humorous perspective about the condition

4. Encourage you to think that the expected outcome of this condition is to achieve total health

5. Demonstrate that writers, artists, poets often have a better understanding of schizophrenia than your doctor does

6. Establish a platform for the book that I am writing (feedback is most appreciated!)