In my life, the person of the year is Dr. Maria Stern, Chris's psychiatrist. She has done a lot, not just for Chris but for Ian and me. It's easy for me to see the flaws in psychiatrists, psychiatry and the medical community in general but then there are the exceptional psychiatrists like Dr. Stern, who manage to balance the interests of the client and the parents alongside their own belief system and training.
Dr. Stern is very supportive of our difficulties, and offers positive encouragement when occasionally I get a little down. I'm sure there are many times when Dr. Stern would love to tell Ian and me exactly what we are doing wrong and how foolish we sometimes seem in her eyes, but she doesn't. She is diplomatic and skillful. She always thanks us for our observations and usually says that she has noticed exactly the same thing. When I signal to her that there is an area where I think Chris can improve, she takes it to heart. The next thing you know he has improved in that area and there's no longer an issue. I plan to make greater use of her gifts in this way.
Thank you Dr. Stern for working wonders.
Thursday, December 31, 2009
Tuesday, December 29, 2009
Why parents need to get and stay involved
Recently I have been mulling over why parents need to be very involved in helping their adult children overcome the crisis of schizophrenia. There are so many reasons why it is harder to help an adult than a young child but these are excuses. The most often cited reason parents give is that the person won't accept help. Depending on how you feel about it, you can either respect the choices of the person undergoing the crisis to allow him to remain in the crisis without active intervention on your part or you can believe that it is the parental duty to take over when that person is not able enough to make wise choices. Speaking as a parent, I favor the interventionist approach.
As parents, by having children we signed up to lifelong commitment of caring, which doesn't end magically at the ages of 18 or 21. We are still the adults here, to help guide our children through young adulthood, which these days seems to last well into the third decade for a lot of people and much longer for some.
Choosing to be an interferring parent is tough but it is far easier than being a helpless bystander as the years go by. It means that most likely you will have your adult relative living at home with you as the only way to exercise some degree of control over the situation and to demonstrate by actions not words that he is she is secure under your roof. Adult children living with their parents doesn't go down well in certain Anglo-Saxon cultures, paving the way for life on the street and a reduced chance to ever get well. Hands-on parenting means that sometimes you have to be in the bully pulpit, sometimes on the side of forcing meds compliance and/or sometimes forcing a vitamin regime or other interventions that you feel would be beneficial. Then there is the social responsibility of the parent to not allow their adult family member to victimize the wider public and at the same time to protect him or her from becoming a victim. Your child is no one else's responsbility but your own when it comes to protecting others. If you can avoid an unfortunate social outcome without resorting to meds, great, if not, insist that meds be used sparingly. If you are a parent who sees medication as the final answer, then you are not doing justice to your relative.
My job was made easier by becoming an informed interferring parent while still preparing for the day for Chris to assume control. This inevitably led to a clash with the medical profession over the use of the medication and the role of therapy. Just because the medical profession is stuck in an outdated paradigm when it comes to schizophrenia doesn't mean a parent has to be. And, when the doctor who is treating us has had schizophrenia him/herself, then we'll talk. Until then, parents and child are the real experts. What the doctor brings to the table can be useful, but it is also imperfect. Always keep in mind doctors' claims that people with schizophrenia who get well often aren't good patients and that they have a supportive family.
In my personal experience I spent several wasted years wallowing in the misery factor. We owe it to our relative to become relentlessly optimistic and cheerful in the face of obstacles, which are many. There is no point feeling sorry for ourselves and them. Being sad doesn't help your relative see a positive way out. It sends off all the wrong messages. You will never get out of this, for one. You are damaged, for another. "I" prefer being miserable to "your" getting better is another one.
What the medical profession hasn't done is to reveal to its clients that well-known "secret" that the crisis of schizophrenia is an understandable human condition, and that's a problem. If more people were exposed to the idea that schizophrenia is an understandable, albeit somewhat unusual reaction to life's pain, it would make the task of helping your relative through it so much easier. There are psychiatrists who have been saying this for years, but their message has been stifled by the greater number of medical professionals and researchers who are funded directly or indirectly by the pharmaceutical industry. Parents should be positively reinforced by medical authority figures when their own strength begins to wobble, not gently dissuaded of the foolhardiness of their beliefs.
As a mother I felt quite hopeless in the face of grim doctors telling me that my son has a lifelong brain disease. Nothing can be further from the truth, but I had to find that out for myself while the medical profession continued to enrich itself pursuing research grants from pharmaceutical companies rather than bringing Jung to the table and illuminating others. It has turned its back by and large on helping parents like me believe in ourselves and in our children, that we have something to offer.
Once you begin to understand what your relative is going through it is a journey, not an ending.
As parents, by having children we signed up to lifelong commitment of caring, which doesn't end magically at the ages of 18 or 21. We are still the adults here, to help guide our children through young adulthood, which these days seems to last well into the third decade for a lot of people and much longer for some.
Choosing to be an interferring parent is tough but it is far easier than being a helpless bystander as the years go by. It means that most likely you will have your adult relative living at home with you as the only way to exercise some degree of control over the situation and to demonstrate by actions not words that he is she is secure under your roof. Adult children living with their parents doesn't go down well in certain Anglo-Saxon cultures, paving the way for life on the street and a reduced chance to ever get well. Hands-on parenting means that sometimes you have to be in the bully pulpit, sometimes on the side of forcing meds compliance and/or sometimes forcing a vitamin regime or other interventions that you feel would be beneficial. Then there is the social responsibility of the parent to not allow their adult family member to victimize the wider public and at the same time to protect him or her from becoming a victim. Your child is no one else's responsbility but your own when it comes to protecting others. If you can avoid an unfortunate social outcome without resorting to meds, great, if not, insist that meds be used sparingly. If you are a parent who sees medication as the final answer, then you are not doing justice to your relative.
My job was made easier by becoming an informed interferring parent while still preparing for the day for Chris to assume control. This inevitably led to a clash with the medical profession over the use of the medication and the role of therapy. Just because the medical profession is stuck in an outdated paradigm when it comes to schizophrenia doesn't mean a parent has to be. And, when the doctor who is treating us has had schizophrenia him/herself, then we'll talk. Until then, parents and child are the real experts. What the doctor brings to the table can be useful, but it is also imperfect. Always keep in mind doctors' claims that people with schizophrenia who get well often aren't good patients and that they have a supportive family.
In my personal experience I spent several wasted years wallowing in the misery factor. We owe it to our relative to become relentlessly optimistic and cheerful in the face of obstacles, which are many. There is no point feeling sorry for ourselves and them. Being sad doesn't help your relative see a positive way out. It sends off all the wrong messages. You will never get out of this, for one. You are damaged, for another. "I" prefer being miserable to "your" getting better is another one.
What the medical profession hasn't done is to reveal to its clients that well-known "secret" that the crisis of schizophrenia is an understandable human condition, and that's a problem. If more people were exposed to the idea that schizophrenia is an understandable, albeit somewhat unusual reaction to life's pain, it would make the task of helping your relative through it so much easier. There are psychiatrists who have been saying this for years, but their message has been stifled by the greater number of medical professionals and researchers who are funded directly or indirectly by the pharmaceutical industry. Parents should be positively reinforced by medical authority figures when their own strength begins to wobble, not gently dissuaded of the foolhardiness of their beliefs.
As a mother I felt quite hopeless in the face of grim doctors telling me that my son has a lifelong brain disease. Nothing can be further from the truth, but I had to find that out for myself while the medical profession continued to enrich itself pursuing research grants from pharmaceutical companies rather than bringing Jung to the table and illuminating others. It has turned its back by and large on helping parents like me believe in ourselves and in our children, that we have something to offer.
Once you begin to understand what your relative is going through it is a journey, not an ending.
Monday, December 28, 2009
Jumping on the clozapine bandwagon
I am reading more and more media reports extolling the virtues of clozapine as an effective antipsychotic. Clozapine has been around for years, since the 1970s in Europe and the 1990s in North America. It is the first of the second generation of atypical antipsychotics and has been described as the treatment of last resort for people who have not shown improvement on other antipsychotics. The fact that it is off-patent is one reason why it is not more widely used, but only one reason.
Anybody thinking of taking clozapine should think twice before doing so. Begin by resisting the label of "treatment resistant" that is probably being directed at your relative. Treatment resistant simply means that medical science hasn't found out what your relative's problem is, but by golly, they are going to get a drug for whatever ails them, anyway. If your relative's problem is psychospiritual, which I suspect in most cases it is, then no drug is going to fix a mind that is "on strike." (John Nash's words, not mine.)
Antipsychotics, whether first or second generation, don't make anybody well, they simply repress the more outward signs of psychosis, and very often they even fail to do that. In my experience with Chris, clozapine was no more effective than any of the others, it is much harder to withdraw from, and then there is need for regular blood testing to avoid a potentially fatal condition called agranulocytosis, which involves the white blood cell count.
I am always heartened when I hear that people have managed to get off clozapine, even after many years.
Anybody thinking of taking clozapine should think twice before doing so. Begin by resisting the label of "treatment resistant" that is probably being directed at your relative. Treatment resistant simply means that medical science hasn't found out what your relative's problem is, but by golly, they are going to get a drug for whatever ails them, anyway. If your relative's problem is psychospiritual, which I suspect in most cases it is, then no drug is going to fix a mind that is "on strike." (John Nash's words, not mine.)
Antipsychotics, whether first or second generation, don't make anybody well, they simply repress the more outward signs of psychosis, and very often they even fail to do that. In my experience with Chris, clozapine was no more effective than any of the others, it is much harder to withdraw from, and then there is need for regular blood testing to avoid a potentially fatal condition called agranulocytosis, which involves the white blood cell count.
I am always heartened when I hear that people have managed to get off clozapine, even after many years.
Tuesday, December 22, 2009
An important blog ingredient - readers
I would like to take this opportunity to thank the people who contributed comments to my blog since it began in April of this year. Thank you, all of you, who have felt moved enough to write. I appreciate your support, even your criticism, and I trust that other readers have also benefited from the wisdom of your experience.
Monday, December 21, 2009
What a difference a year makes
Last year at this time Chris was psychotic and Christmas was hell. (See Christmas was hell (July 2009)). While it isn't an experience I want to go through again, I'll tell you why it also wasn't the end of the world. Contrary to what I had been led to believe, Chris did not suffer brain damage and he has not been irreparably marred by the experience of his subsquently spending another three months in hospital, bringing him up to a total of nine months in hospital over the past six years. Rather, we used the experience of psychosis and hospitalization to ask ourselves what we could learn and how we can avoid a repetition of these events.
I had been led to expect by the "experts" (official websites) that someone who is undergoing repeat psychosis and hospitalizations is getting further and further away from recovery. Could it be that this viewpoint is simply wrong? Could it be that this view is promulgated by pharmaceutical companies to keep people on their meds? Protecting the brain and all. It would be lovely to think that someone who suffers one psychotic breakdown is suddenly going to figure it out and do what ever needs to be done to avoid a repeat performance. It's not reality, though. Clinging to the notion that relapses are to be avoided at any cost puts an enormous and sad burden on the family: that if a relapse does occur there is the nagging fear that their relative is burning out, getting stupider, will never amount to anything, will never hold a job, etc. The misery of letting the official viewpoint guide your thinking is grinding.
While it is true that Chris has lost a year of the kind of productivity I would like to see (university, meaningful work), he has gained a lot in terms of insight and resiliency. He is back in the church choir, has done a couple of solos, has resumed his voice lessons, volunteers at the soup kitchen, and travels widely and independently. He is getting along well with his brothers, making this Christmas extra special.
I had been led to expect by the "experts" (official websites) that someone who is undergoing repeat psychosis and hospitalizations is getting further and further away from recovery. Could it be that this viewpoint is simply wrong? Could it be that this view is promulgated by pharmaceutical companies to keep people on their meds? Protecting the brain and all. It would be lovely to think that someone who suffers one psychotic breakdown is suddenly going to figure it out and do what ever needs to be done to avoid a repeat performance. It's not reality, though. Clinging to the notion that relapses are to be avoided at any cost puts an enormous and sad burden on the family: that if a relapse does occur there is the nagging fear that their relative is burning out, getting stupider, will never amount to anything, will never hold a job, etc. The misery of letting the official viewpoint guide your thinking is grinding.
While it is true that Chris has lost a year of the kind of productivity I would like to see (university, meaningful work), he has gained a lot in terms of insight and resiliency. He is back in the church choir, has done a couple of solos, has resumed his voice lessons, volunteers at the soup kitchen, and travels widely and independently. He is getting along well with his brothers, making this Christmas extra special.
Friday, December 18, 2009
Why not just tack on an antidepressant?
Something sinister is afoot with the proliferation of add-on psychiatric drugs to treat non-psychiatric conditions. This one below is particularly strange and scary as it combines an anti-depressant with an anti-convulsant. Don't want to go there.
Caveat emptor.
W W W . A L U M N I R E V I E W . Q U E E N S U . C A 17
When two drugs are better than one
People who suffer from debilitating neuropathic pain may get more relief and sleep better by combining two commonly prescribed drugs, a new Queen’s-led study shows.
When given both an anti-seizure drug (gabapentin) and an antidepressant (nortriptyline), patients experiencing neuropathic pain caused by nerve damage or disease reported less pain than when they took one or the other individually. They also slept better, reports Dr. Ian Gilron, director of Clinical Pain Research for two departments – Anesthesiology and Pharmacology & Toxicology. “That’s a very important issue for this group of patients, whose debilitating, unrelenting pain often interferes with normal sleep,” says Gilron. Since 45 per cent of Canadians being treated for neuropathic pain take two or more pain drugs, there may also be safety issues, he adds. Funded by the Canadian Institutes of Health Research, this study focuses on two specific types of neuropathic pain: diabetic neuropathy and postherpetic neuralgia. However, researchers believe the methodology could also be used to study chronic conditions such as cancer-related pain, degenerative spinal disc disease, and the pain experienced after chemotherapy and mastectomies.
Caveat emptor.
W W W . A L U M N I R E V I E W . Q U E E N S U . C A 17
When two drugs are better than one
People who suffer from debilitating neuropathic pain may get more relief and sleep better by combining two commonly prescribed drugs, a new Queen’s-led study shows.
When given both an anti-seizure drug (gabapentin) and an antidepressant (nortriptyline), patients experiencing neuropathic pain caused by nerve damage or disease reported less pain than when they took one or the other individually. They also slept better, reports Dr. Ian Gilron, director of Clinical Pain Research for two departments – Anesthesiology and Pharmacology & Toxicology. “That’s a very important issue for this group of patients, whose debilitating, unrelenting pain often interferes with normal sleep,” says Gilron. Since 45 per cent of Canadians being treated for neuropathic pain take two or more pain drugs, there may also be safety issues, he adds. Funded by the Canadian Institutes of Health Research, this study focuses on two specific types of neuropathic pain: diabetic neuropathy and postherpetic neuralgia. However, researchers believe the methodology could also be used to study chronic conditions such as cancer-related pain, degenerative spinal disc disease, and the pain experienced after chemotherapy and mastectomies.
Thursday, December 17, 2009
Clever drug companies
How brilliantly big pharma has succeeded yet again. It has managed to convince gullible doctors and parents pre-softened by all the emphasis on autism (a condition that does emerge in early childhood), that there is also something called "childhood schizophrenia." Well done. Bravo. Parents are now on the alert for it in children as young as two. I am not doubting that children have mental health problems. Psychiatry has famously failed adults by continuing to insist that emotional problems are biochemistry. The repercussions of this meds only approach are far worse for children.
Posted by Sandra (below), on Circle of Moms: Mothers of Special Needs Children, in answer to another "mom" Jennifer whose nine year old has schizophrenia.
"if you don't mind me asking, how old was she when she was diagnosed? has she always had problems or is it a new thing? how is she handling it? sorry if i am being forward or if you just don't want to answer, it's just i have a 2 yr old girl who may have childhood schizophrenia unfortunately she is to young to get a proper diagnosis. i'm just not sure what to expect or what is going to happen with her so am looking for other mums who have been through similar"
Posted by Sandra (below), on Circle of Moms: Mothers of Special Needs Children, in answer to another "mom" Jennifer whose nine year old has schizophrenia.
"if you don't mind me asking, how old was she when she was diagnosed? has she always had problems or is it a new thing? how is she handling it? sorry if i am being forward or if you just don't want to answer, it's just i have a 2 yr old girl who may have childhood schizophrenia unfortunately she is to young to get a proper diagnosis. i'm just not sure what to expect or what is going to happen with her so am looking for other mums who have been through similar"
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