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Who Is Thomas R. Insel and Why Should You Care? June 1, 2010

Posted by Crazy Mermaid in Healthcare, mental illness, NAMI, Recovery.
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Who is Thomas R. Insel and why should you care?

I first came across Thomas R. Insel’s name in April 2010’s Scientific American article, Faulty Circuits.  (I wrote a blog about that article).  After seeing his name listed as one of the keynote speakers at NAMI’s (National Alliance on Mental Illness) Washington D.C. National Convention, I became “curiouser and curiouser”, to quote Alice in Wonderland.  With the miracle of Google to aid me, I decided to do some research to assuage my curiosity .  Who exactly was this guy?

As it turns out, Dr. Thomas R. Insel is the Director of the National Institute of Mental Health (NIMH). Part of the United States Department of Health and Human Services, it is the largest research organization in the world specializing in mental illness.  Formally established in 1949, research is conducted in Bethesda, Maryland at a central campus- not too far from NAMI’s roots in Baltimore. Their mission,  “transforming the understanding and treatment of mental illness” aims to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior, with particular focus on genetics, neuroscience, and clinical trials of psychiatric medication.

Based on blog entries In his Director’s Blog ( http://www.nimh.nih.gov/about/director/index.shtml) as well as the Scientific American article, it’s not surprising that his tenure at NIMH has been distinguished by groundbreaking findings in the areas of practical clinical trials, autism research, and the role of genetics in mental illness.  What is surprising is the refreshingly honest glimpse into the state of affairs that his blog gives the general public.

In his March 30 entry, Who Will Develop the Next Generation of Medications for Mental Illness, Insel examines the mass exodus of the pharmaceutical companies from the psychiatric medication development programs.  According to Dr. Insel, two of the major pharmaceutical companies, GlaxoSmithKline and AstraZeneca will  no longer develop new psychiatric medication for a number of reasons that he goes into depth about in his article.  He then comforts the audience with the exciting notion that “the scientific opportunities for progress (in the psychiatric medication development department) have never been better”, and then goes on to explain how NIMH can help get the job of developing new psychiatric medications done.

In today’s blog, Dr. Insel cites several surprising (to me, at least) statistics, including:

  1. Each year, there are nearly twice as many suicides (33,000) as homicides (18,000).
  2. The life expectancy for people with major mental illness is 56 years (the average life expectancy in the U.S. is 77.7 years).
  3. Mental disorders and substance abuse are the leading cause of disability in the United States and Canada.

Then, he moves on to show how much mental illness and incarceration are intertwined and what can be done about it.  As he is in a position of authority, with the power to make changes, I have hope that he will be able to make a difference. This one man, in the right position at the right time with the right experience and knowledge, will no doubt make a great difference in the lives of the people living with mental illness, both inside the prison system and outside of it. He just might even change the face of the prison community.

Overall, his blog, highlighting the challenges and successes of his work at NIMH, presents hope for those of us suffering from mental illness that progress is indeed being made on the medical front.

I am excited to have such a distinguished gentleman in such an important position. Great things can and will be accomplished with Dr. Insel at the helm of the NIMH.  In conjunction with NAMI, we will no doubt see great strides made in the way we look at and treat mental illness in the not-too-distant future.

Mental Illness Medication and Slower Thinking February 18, 2010

Posted by Crazy Mermaid in Disability Claim, mental illness, Recovery, Therapy.
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Yesterday, I had a “Flowers for Algernon” moment.  Or rather an hour and a half.  Let me explain.

Distilled into the Readers Digest Condensed Version, Flowers for Algernon, the 1958 story by Daniel Keyes, is about a man with an IQ of 68 who is given an operation to increase his IQ to genius level. He maintains that genius IQ for a relatively short period of time and then reverts back to his former self.

In my case, although I never had my IQ tested, I performed work that was intellectually challenging.  I managed many projects over my 25 year career, and they all required the ability to simultaneously process large quantities of information.  My last job, project managing the construction of a $55 million ice hockey rink, was no different. Building a  project of that magnitude requires some heavy duty brain power.

Thinking quickly, making snap decisions, and processing vast quantities of information in the blink of an eye, skills that I developed from a very early age, were all second nature to me. My intelligence allowed me to walk into any meeting or presentation and do the “Vulcan Mind Meld” with any presenter, routinely asking the presenter a barrage of questions allowing me to acquire an accurate understanding of exactly what the presenter knew and, more importantly, what he didn’t know. That knowledge allowed me to make the kind of decisions I needed to make in order to perform my job as efficiently as possible. That ability made me very good at my job.

I regarded my talent as normal, and was routinely disappointed in people when they couldn’t perform according to my standards. I had difficulty relating to many people, since I believed that they simply weren’t putting their God-given abilities to work.  It never occurred to me that they might not have the ability to process the same quantities of information as rapidly as I could.

When I was hospitalized in May 2008, the medication that I was given began the process of bringing me back to reality. But the side effect of that medication was what I call the “Flowers for Algernon” effect.  The speed that I process information severely slowed down.  Immediately. One minute I thought quickly, the next I thought slowly. That fast. I now think about ½ to 1/3 as fast as I used to.  Unable to hold four thoughts at a time, I have had to re-learn how to think.  More importantly, I have had to re-think exactly who I am, since my identity  is tightly tied to the speed with which I think.

Generally speaking, I have come to accept the new terms of my existence.  The further away I get from my past, the easier it is to forget how fast I used to think and how much information I could absorb.  Very few incidents in my relatively cocooned existence occur that renew my sense of frustration and shame at losing part of my brainpower. Yesterday was one of those days that reminded me of what I have lost.

In consulting an attorney about a personal matter, I was obliged to have an hour and a half consultation in the attorney’s office. As the attorney talked, I found it surprisingly difficult to keep up with the conversation. My brain just couldn’t process the concepts the attorney spoke about. I took notes, but they were too nonsensical to help me retain any information. Despite the fact that I had ample opportunity to ask the attorney any questions I wanted to at any point, I felt, at the end of the visit, as if I hadn’t even been present for the majority of the consultation. This happened, I should add, through no fault of the attorney’s. I’m the one who can’t comprehend relatively simple concepts. That’s virtually unheard of in my universe. Until now.

The woman who ran the meetings and made the snap decisions is gone.  In her place is a much more humble, much slower-thinking person who vaguely remembers what it used to be like to have some heavy-duty brainpower. Flowers for Algernon.

Mental Illness: Short Term Care Facilities February 17, 2010

Posted by Crazy Mermaid in Mental Hospital, mental illness, Psych Ward, Recovery.
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With the advent of the changes wrought by the new Parity law that just went into effect January 1, 2010, one of the consequences will be that short-term hospital stays will be lengthened beyond the standard 2 weeks period now in effect, since this 2 week period of time is currently driven by insurance requirements rather than patient need.

As the parity law increases the length of visits, demand for hospital beds, which are already in short supply, will be increased. I’d like to think that the end result of the new parity law will be that more facilities will be built to house those patients not ready for discharge. But building those new facilities will be difficult since anyone trying to build them will run smack dab into neighborhood NIMBY’s (Not In My Back Yard).

The communities where these new facilities will be built are already up in arms about siting short-term mental health care facilities in their neighborhoods because of misunderstandings about the nature of  medical care for mental illness. They don’t understand the concept of short-term care. Encouraged by the entertainment world, they perceive those receiving short-term psychiatric care as a bunch of crazies running around killing and/or maiming people, especially young children.  Thus is the picture the entertainment world has provided to society at large regarding the nature of those afflicted with mental illness. So if they’re not the psychos of the world, then just exactly who are those people receiving short-term care?

A vast majority of short-term patients are people who are severely depressed. So depressed, in fact, that want to and/or try to commit suicide. They have either been talked into seeking help themselves (voluntary commitment) or have been taken to the hospital by others (involuntary commitment) for short-term inpatient treatment. The treatment is designed to alleviate their depression and get them to a point where they no longer desire to kill themselves.

The second group of patients are those who have psychotic breaks with reality in some form. In some cases (like me) they believe they are Mermaids. In others, they hear voices.  Or they believe people are out to get them. Or they believe they can fly.  Like their severely depressed brethren, they have been talked into seeking help themselves or have been taken to the hospital by others for short-term inpatient treatment.  The purpose of their treatment is to bring them back to reality.

A handful of patients are previously stabilized mentally ill people who have, for whatever reason, become de-stabilized.  They have either stopped taking their medication for a short period of time and need to get re-stabilized, or their medications have stopped working through no fault of their own. Either way, they are readmitted for some intensive care as they receive the care needed to restabilize their medication, thus enabling them to be re-released back into society.

One group of mentally ill people  not found in these short-term care facilities are the “forensic” mentally ill people.  “Forensic” in this usage designates a mentally ill person who has committed a crime.  Forensics are under the strict supervision and control of the Criminal Justice System, and have a snowball’s chance in hell of winding up in a short-term care facility.

Besides the fact that the criminally insane cannot get treatment in short-term psychiatric care facilities, people should take comfort in the fact that nobody can just walk out of a mental health hospital. In fact, unlike any other medical care they will ever receive in the world, patients check their civil rights at the desk when they walk through the door to get treatment.

If the neighbors think they’ll have some lunatics loose on them, I challenge them to visit one of those facilities. The razor barbed wire, locked gates, and other security measures taken by the staff of these facilities virtually guarantee there will be no loose “loonies” in the neighborhood. No more likelihood of violence than your average suburban neighborhood, in fact.

So the NIMBY crowd should take comfort in the fact that only the “good” loonies are treated in these facilities, and that it’s almost impossible for these “good” loonies to get out of the facilities and wander around the neighborhood unsupervised. It’s okay to have a short-term mental hospital in your neighborhood. Nobody will bite you. Or stab you. Or whatever. They’re only there to get better.

Psychiatrists January 27, 2010

Posted by Crazy Mermaid in mental illness, Psychiatrists, Recovery.
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There’s nothing more important to a person with a mental illness than their relationship with their psychiatrist.

Some people, not realizing the critical difference between a psychiatrist and other medical disciplines, make the mistake of substituting their General Practictioner (GP) or other “mainstream” doctor or nurse for the services of a psychiatrist. That’s like going to a podiatrist (foot doctor) to get a mammogram (breast exam).

The primary difference between a psychiatrist and another type of doctor is that the psychiatrist has been trained in diagnostic evaluation of mental disorders. This is an under-appreciated fact in the medical community as well as in the general public.

For example, if a patient comes into a GP’s office and announces that he has a broken ankle, the GP won’t begin treating the broken ankle without taking xrays and verifying the patient’s self-diagnosis. Generally, the GP will have the skills necessary to perform those tasks.

But that same GP won’t hesitate to begin treating a patient coming into his office complaining of depression. Without verifying that the patient has depression rather than bipolar disorder or a number of other psychiatric disorders, the GP begins treatment of the patient. He has neither the knowledge nor the skill necessary to do the diagnosis, and yet he has no qualms about treatment. This type of thing happens more frequently than not.

The right psychiatrist assesses the patient, diagnoses the patient, and then helps the patient manage his symptoms (not cure the illness) the quickest and least painful way possible, while a GP messing around with psychotropics (mental illness drugs) is likely going to do the patient more harm than good.

GP’s, being very conservative in trying to treat something they really don’t understand, have a tendency to prescribe only one drug at a time to a patient with symptoms of a mental illness rather than the cocktail of drugs needed to combat all of the person’s symptoms.  They don’t know how the mental illness drugs interface with each other, and  they’re afraid of doing the wrong thing.  So their one prescription drug usually does little or nothing to help the mental patient.  In fact, sometimes the patient gets the (wrong) impression that a particular drug isn’t working for them at all when the real problem is that the supporting drugs are missing from the cocktail.

A good psychiatrist gives the patient confidence that there is no problem that is insurmountable. He has “been there, done that” so there are few surprises. And when there is a surprise, he knows how to trace the cause so he can find a solution. The average person has no idea how much of a comfort this is.

A good psychiatrist gives a specific timetable of how long a drug will take to kick in. In my own case, upon my discharge from a mental hospital, my (new) psychiatrist told me straight up to expect several months worth of bad side effects as the drugs built up in my system. He said “give me two months” to get the side effects under control. Not gone, but under control. So I had an end in sight. I could put up with the terrible side effects for two months, whereas I couldn’t do it for an indeterminate span of time. In fact, some of the side effects were so bad that had I not known how long they would last, I would have discontinued my meds (as many people with mental illness do) rather than face a potential lifetime of those side effects.  A good psychiatrist will help keep the patient on his medication so that the medication can do its job.

Having to manage with a broken leg for a lifetime is completely different than having to manage a lifetime living with the symptoms of a mental illness. How long can you stand having voices constantly talk to you before you want to jump off a bridge just to get away from them?  How long can you stand to see terrible pictures when you close your eyes before you want to die to get away from them? The psychiatrist’s  reassurance that all problems are fixable puts the patient’s mind at ease. Whatever the problem, I have confidence that my psychiatrist, Dr. K, can fix it.

Mental Illness and NAMI Family to Family Facilitation Training January 21, 2010

Posted by Crazy Mermaid in mental illness, NAMI, Recovery.
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This past weekend, I had the opportunity to participate in some training. Orchestrated through NAMI (National Alliance on Mental Illness), the training, called Family to Family Support Group facilitation training,  was designed to teach us how to facilitate a group of family members coming to a peer support group.

When I signed up for the training weeks ago, I was given the distinct impression that both mentally ill and non-mentally ill people would be participating in the training. It made sense at the time that both groups could effectively facilitate such a support group, although the perspective of each facilitator would necessarily be different.

I was surprised if not shocked, however, to discover when I arrived that of the 14 students, I was the only one who was mentally ill. There were fathers, mothers, daughters, and sons of mentally ill people, but not mentally ill people themselves. Except for me.

At that point, I became very concerned that I had overlooked some obvious point. Why was it that I was the only mentally ill person there? What did all of the other mentally ill people know that I didn’t? Why weren’t they here with me? And so I gave it serious thought to leaving.

Seriously considering abandoning my mission before I even began, I explained my concerns to my trainer, Kate. Together, we faced every one of my concerns head-on, leaving nothing left unsaid or unexplored.

I was worried about how well I would take listening to all of the pain and suffering the mentally ill person (like me) managed to inflict on family members (like them) who would be showing up for the support groups.

I was concerned that family members (like them) might be afraid to really share their feelings with the support group after they learned that mentally ill people (like me) might be present. We worked through each of these issues, and ultimately she told me that the decision of whether to stay or go was mine.

Making the decision easier in some respects and harder in others was the fact that my roommate for the weekend just happened to be a licensed mental health counselor who just happened to know my sister, also a licensed mental health counselor.  As anyone experiencing any sort of emotional trauma can tell you, life with a professional counselor is much, much better than life without one. It’s like having a heart attack when your neighbor is a heart surgeon. A good place to be ill, in other words.

Ultimately, after much thought, I decided to stay, with the caveat that if I became uncomfortable I was going to just get up and leave without any fanfare.  Giving me her business card, Kate asked me to call her right away if I suddenly bolted, just to make sure that I was in an emotional state that allowed me to drive myself home. I agreed to her request. Fortunately, it never came to that.  Surprising myself, I stayed for the entire training.

In retrospect, I probably shouldn’t have been there. But I’m glad that I was.

My (Fake) Funeral November 11, 2009

Posted by Crazy Mermaid in mental illness, NAMI, Recovery, Therapy.
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My upcoming 50th birthday has been weighing on my mind, but not for the usual reasons. I have no qualms about turning “old”- whatever that means.  But as the day approaches, I’m dreading it more and more. To celebrate it would be a lie.

Because the person that I used to be suddenly and irrevocably died last year. It was a slow death, sort of. Or at least the process of dying stretched out for months. The mental breakdown that started in February 2008 began the process of cutting away at the very core of my being, and the medication I began taking in late May 2008 finished off what was left of me.  All of what I was is gone, survived by the shell that houses my physical being.

How, then, to celebrate the occasion of the 50th anniversary of my birth?

In my therapist’s office this morning, we arrived at a solution- of sorts. Rather than look at the situation as the anniversary of my birth, I will acknowledge the anniversary in the form of a funeral.  It will, at least for this year, represent my death 16  months ago rather than the anniversary of my birth.  The funeral will be a ceremony in which my grieving can be publicly acknowledged for what it is: the loss of life. The grief is for the birthday that I cannot have.

I returned from counseling and told my husband that in lieu of a big party,  I wanted to have a funeral for my 50th. Not the usual joke-type party where everyone dresses in black and brings old-people gifts. The real kind of funeral. The kind that recognizes the enormity of my loss. I explained that because I died last year (see my blog entry “I Am No More”) celebrating my birthday would be a lie. I told him I’d like just 4 of us, including my sister and brother-in-law and him and I, to go to a nice restaurant, all dressed in black. I said I want a funeral flower arrangement- the kind with the 3 gladiolas. (Did you ever notice that funeral arrangements usually contain those three gladiolas?) One sticking straight up and the other two at 90 degree angles? I told him I wanted one of those. And I want to write my obituary and post it on my blog.

At first, he was in shock (understandably). Then he said that from his perspective, I don’t appear to have changed much. Or at least I have recovered from my psychosis and from those horrible, horrible side effects of the medication I was taking. I no longer believe, sadly, that I am a Mermaid. I no longer have the Parkinson’s, no longer have trouble peeling a banana. I can once again read and write. Getting all of these abilities back after losing them gives the impression that, at least physically, I am back to my old self, whole again.From his perspective, I’m back to normal- more or less.

But it’s really not about how I appear physically to him. It’s about how I am emotionally. And I know that I will never be the way I was. For better or worse, the person that I used to be died. Quickly. Last year. And so for that reason, I cannot in good faith celebrate the 50th anniversary of my birth.  My therapist gave me permission to have the funeral. And after discussion with my husband, he agreed that if that’s what I want, then he’s willing to go along with it also. My sister, I must confess, doesn’t yet know anything about my wishes. But I’m sure that she will honor my request.

We will wear black at dinner. I will purchase a funeral arrangement. I will write my own obituary, to be posted on my blog. The final sentence will say: “In lieu of flowers, donations may be made in her memory to her favorite charity, NAMI”.  Just like the real obituary will say when my shell also dies.

And so we’ll have a funeral. A private funeral, but still a funeral. Because that’s what it really is.