Weighing the Risks and Benefits - Will My Life Be Better?

"You have to weigh the risks and benefits."  That is what the doctor says.  It's your body, your decision, your responsibility.

But how do you weigh them?  There is that list of side effects.  They sound pretty scary, but the doctor assures you they are usually manageable.  Then there is the potential benefit of feeling better.  Well, that would be the gold ring, now wouldn't it?  Being able to get back to your family, your job, your life?

It's not a hard sell.  Reach out your hand and the pharmaceutical company will place in it that most precious of all commodities, hope.

Perverse little smarty pants that I am, after my hopes had been dashed six times, I started to read.  For four years I read journal articles about clinical studies.  The basic format begins with a measurement of depressive symptoms, usually the Hamilton Rating Scale for Depression, HAMD, depressed mood, suicidal ideation, sleeplessness, loss of appetite, etc.  You get points for severity.  Unlike your junior high math exam, the higher the score, the worse off you are.  In fact, if you ace this test, they will administer electric shocks to your brain (yes, I know, you will be unconscious at the time and won't feel a thing) until you forget how bad you feel and get a lower score.

So there are two groups, as alike as possible, Group A averages a HAMD score of 21.6, Group B's average is 22.1.  That's the mid range for moderately depressed, and the typical test subject score.  They don't include you in medical trials if you keep getting a high score, because now it's the medication that is being tested, and they want an audience that is easier to please.  Group A gets the medication being tried, Group B gets the placebo.  After 8 weeks, Group A's HAMD score is 8.2, Group B's score is 10.9, both in the mildly depressed range, but the difference is "statistically significant."  [That would depend on how big the sample is, and I am not doing the math.]  More people in Group A than Group B reached remission, a HAMD score of 6 or less.  A certain number dropped out because of side effects, so they don't count.  And there we have it.  The medication improves depressive symptoms by a statistically significant amount and is well tolerated, and you should get yours today.

But you know what?  That study with all its statistics did not answer your question.  Will you feel better?  Will you get your life back?  It told you what the odds are that your depressive symptoms would be reduced.  But that is not the same thing.  Not at all.

For example,the truck driver who is sad, not sleeping well, has no appetite, worries a lot and feels guilty is given Zoloft by his family practitioner.  Now he's eating better and is learning to put past sins behind him.  But he is too dizzy to drive, gets in fights with his friends and can no longer satisfy his wife, or even himself in bed.  So he decides to quit his meds.  The doctor is focused on his HAMD score and is very concerned, convinces him to try another med, then another.  But each time he gets the same side effects, and meanwhile has lost his job.

The truck driver has weighed the risks and benefits, asking is my life better? No, it isn't.  Let's hope his doctor knows that Cognitive Behavioral Therapy is often as effective as antidepressants for mild and moderately depressed people.  Ditto aerobic exercise, which could help his lose those extra pounds, improve how he feels about himself, and change the nature of what happens when they turn out the lights.

It turns out there are lots of psychological tests.  Many try to do what the HAMD does, and their inventors think that their tests do it better -- measure depressive symptoms.  But there is also a test that asks the real question: Are the lives of the people who take this medication better?  The Sheehan Disability Scale is a three question test, answered by the patient.  On a scale of 1-10, how much have the symptoms disrupted your work/school, your social life, your family/home responsibilities this past week?  It's simple.  It's easy.  It's what the people who are taking the meds want to know, will my life be better.  The people doing the research are focused on symptoms, not on the patient's life.  So that is how I read journal articles for four years and had never heard of the Sheehan Disability Scale (SDS).

For some reason, the clinical trials for Abilify decided to ask the patient's question, using the SDS.  Actually, they used seven different tests.  When the journal articles came out, they reported only one, the Montgomery-Asberg Depression Rating Scale (MADRS), a substitute for HAMD.  My September 4 post, OMG!! That's What They Said! Significant, reported its not particularly impressive, but FDA passable,  "statistically significant reduction in depressive symptoms."  The other test results disappeared.

But somebody noticed, and called them on it.  That is when I learned that the SDS even existed.  Why would they go to all the trouble of doing seven different tests, and then publish the results of only one?  Turns out that while Abilify.com says that "Clinical studies of adults with depression showed that adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms compared to adults treated with an antidepressant alone," as far as the people who actually swallowed the stuff were concerned, it was a wash.  When you weigh symptoms and side effects, they reported that there was no improvement in their work/school life, a little improvement in family life.  But overall, it was a wash.

What was the author's response?  "Robert Berman from Bristol-Myers Squibb wrote... "this may be due to the lower sensitivity" of the measure."  I got that from "Abilify, Depression and the Memory Hole" at clinpsyc.blogspot.com.  Robert Berman, chief author of the research report, is not only an employee of Bristol-Myers Squibb, his compensation also includes stock options -- a little side note on how medical research is conducted in a for-profit health care system.

Okay, so the Sheehan Disability Scale is not sensitive enough to pick up what were pretty small decreases in depressive symptoms anyway.  That isn't its purpose.  What it will do is weigh your risks and benefits. Will Abilify improve my life, at work, at home, at play?  Nope.  Not if you are taking it for depression.  It won't.

What Prozac Monologues wants to know is what the Sheehan Disability Scale would tell me about Lamictal, the medication I have just added to my antidepressant instead of Abilify.  But as far as I know, nobody asked.

photo by Hans Anderson, This file is licensed under the Creative Commons Attribution ShareAlike 3.0

Taking a Break

Into the life of every over-medicated lab rat, a little downtime must fall.  Prozac Monologues is taking a bit of a break, with apologies to regular readers.  I hope to tinker with the sidebars to add some resources, while not being able to maintain my own writing standards.

Meanwhile, let me once more recommend Knowledge is Necessity for information about the Pharma/Medico/Therapeutic Industrial Complex, and occasional good clean fun. 

Photo credit: Copyleft Attitude http://artlibre.org/licence/lal/en/

To our Families

To that end, I am going to live with this disease the way Don lived with his. Openly -- I have a mental illness. Actively -- I will answer ignorance with education. Politically-- I will meet discrimination with change. And in community -- I will support and be supported by others who share this illness with me, so that we can survive it together.

I did get to say those words on Sunday night.  

This morning I made a list of all the things you would be reading about at prozacmonologues if only I were able to read more than three paragraphs at a time.  I am tempted to feel badly, especially for all my older readers, who come here expecting to find out about the relationship between nonsense and the anterior cingulate cortex, or Wyeth's research techniques in its effort to get Abilify approved for augmentation in the treatment of major depressive disorder, or "Akathisia: Stop it or Die," or my discourse on the concept of a failed suicide attempt. 

But down, damn ant! [automatic negative thought] You, dear reader, are not reading about all those things because sedation and supervision in lieu of hospitalization is working just fine.  ["Plan?  What's a plan?  Do I have to stand up?"] So I was able to speak my piece on Sunday night, the candlelight vigil that began Mental Illness Awareness Week.

Everybody thinks I am a wonderful speaker, and they told me so and the local paper quoted me, and that was very nice.  But somebody also needs to say that it was possible, not only because God was willing, but because my spouse has turned her life upside down to take care of me right now.  She is negotiating with her workplace, she is working from home, she is attending Family to Family meetings, she represents my interests, she fights my battles, she keeps my meds, she does the dishes, she walks the dog.  She is exhausted.  And she comes home from Family to Family meetings and tells me that there are other families, too.

Mental illness is a family disease.  And when I say that we survive it together, well, family is a very big word.  Some of us become family, because we choose to be.  I am so grateful for four friends who attended that sexuality talk that didn't turn out to be quite what we thought it would be, but instead has become the germ for the Loony Review, by the Not Ready for Discharge Players!  [A potential addition to next year's program?]  We are family because we choose to be, because to not choose to be wouldn't be insane, it would simply be stupid.

But some of us are family because that's how we started out, when we didn't know what it would cost.  The members who do not have the diagnosis, boy, do they still get to have the disease!  And pay the cost.

Some of us who have the diagnosis don't have the capacity or the wit to say it.  I do.  So today I will say what they would if they could.  Thank you.  We owe you our lives. We wish it didn't have to cost you so much.  Sometimes we lie to you, or are mean to you, or even desert you.  And you aren't always right.  And sometimes you DO make it worse.  But mostly we know that we owe you our lives.  Not all of us survive.  But those of us who do, we survive it together.  Thank you.

Thank you, Helen. 

photos in public domain 

Hello, my name is Willa, and I have a mental illness

I try to post more often.  The last week has been spent in a story so stereotypical that those readers who have or have tried to get disability benefits will find it banal.  And until it has an ending, I can't tell it in Prozac Monologue mode: reflections and research on the mind, the brain, depression and society. I am not reflecting yet.
So I tempt fate with the following.  Si Dios quiere, God willing -- I will say the following at the opening of Mental Illness Awareness Week Sunday, October 4, 6:30 PM, at the Anne Cleary Walkway, University of Iowa Campus, Iowa City, Iowa, a candlelight vigil to remember those who have died from mental illness and to support those who hope to survive it.

Hello, my name is Willa and I have a mental illness.

Hello, I am the Reverend Willa Marie Goodfellow, an ordained minister, an Episcopal priest who has served congregations, campus ministries, and diocesan staff in Iowa for 27 years. And I have a mental illness.

Loss

John McManamy has been on a theological kick.  So I thought I'd take a turn, it being my profession anyway.

The relationship between GoD and DoG is one of those enduring theological themes.  Here is one contribution to the discussion:



This dog reminds me a bit of my own, named Mazie -- Amazing Grace.  Except there are too many stars in the lower right corner of the constellation, a leg that she lost a long time ago.  Move those stars up to form her crown chakra.  For twelve of her thirteen years, people have watched her run and said, "That's Amazing!" -- the inspiration for her name.

Mazie is a therapy dog.  Not officially, she never received the training.  Now she has renal failure and it's too late.  But everywhere she goes, she finds the person who needs her.  When I took her to visit the shelter for victims of the Iowa floods in '08, she stopped to visit with each one.  After an hour, I was depressed and weary -- the start of my latest relapse.  I thought it was time to go.  But no, she pulled on the leash and told me she hadn't talked with that man who was isolating, sitting by himself under that tree.  And she had to hang around until the Red Cross worker got off shift, to give her some of her grace, too.

People have to ponder a three-legged dog.  After a few years, I stopped making smart remarks to the same question I heard over and over.  I came to realize that through her, people consider their own experiences of loss, and the consequences of loss, and the life she leads without even noticing her loss.

How did she come to be a therapy dog?  We don't know the before story.  We only know the after, the kindness of a farmer who went out of his way for an injured stray, a no-kill shelter that is very picky and does home studies of the people who want to adopt, a vet and staff who treat her as a queen, the strangers who flock to her and, I believe, bring their own need for gentleness to the gentleness with which they approach her.  And she responds in kind.

Will she get her leg back in heaven?  I don't think so.  On earth, the only handicap it causes is that she can't pivot to the right at a full run without falling down.  I think her only wish is that in heaven she will lose the leash, so she can do what she loves to do, to run like the wind in three quarter time.

I knew somebody who was born with a foreshortened arm.  It ended at the elbow, with a stump of a hand.  She always objected when some religious person reassured her that she would be whole in heaven.  She said she was already whole.  And she was.

What does it mean for those of us with mental illness to be whole in heaven?  All of the life experience that makes us who we are includes the experience of mental illness.  Will we lose that?  Who then will we be?

All of the loss in this world -- a friend is reading a midrash of Exodus.  [In Midrash, the rabbis explore the meaning of Scripture through story-telling, expanding and deepening the levels of the text.]  One interpretation of Moses at the burning bush is that he initially refused the call to go free the Israelite slaves in Egypt, because -- what about the ones who were already dead and buried in the walls of the pyramids that they died while building?  Who would let them go?

Will God have an answer to your question?  I don't know that I want an answer.  I want it all, us all to be gathered up, none of it and none of us to be lost.

A psychiatrist tried to reassure me once about Electro-Convulsive Therapy, ECT, saying that usually the only memory loss was of the events immediately preceding the treatment.  And usually people are so unhappy before treatment that they are glad to lose those memories.

It was not a convincing argument.  I don't want to forget.  I don't want to lose any of it.  It is part of me, even the pain.  I guess I want for it to mean something.  I want to be able to ask God to answer for it -- like the Holocaust survivor who insisted that he be buried in his Auschwitz uniform instead of the traditional Jewish winding sheet.  He wanted to stand before the throne of judgment wearing the evidence that would itself say, who is judging whom?

Maybe what I really want, for Mazie, for those lost in the walls of the pyramids, and in the ashes, and for those who are in such pain that they want to lose their minds, for all of us, is to be found.

Alive!

Cut the top ten and go straight to the number one reason why Willa Goodfellow should never get herself committed to the psych ward:

I suck at arts and crafts.

I didn't used to.  I used to produce Christmas cookies and gingerbread houses that made adults and children alike respond, "Oh! My! God!" -- though not the way this cake does.  I used to make big gingerbread houses.  No kits. and no showing off with royal icing and special decorating tips (which might have improved this cake, if I had been able to find them).  I used Golden Grahams for shingles, individually placed sprinkles on the door wreaths, graham bears ice skating in the yard, pretzels for fences.  I made Dr. Seuss-like trees out of marshmallows and gummy savers, M&M's for roofing material, or maybe candy-canes for the Swiss chalet touch -- those were a bitch to hold in place until the frosting glue dried.  Once I used peanuts to construct a fire chimney.  All color coordinated.  I must have made thirty of those suckers, and each an original masterpiece.

Then I took Prozac.  And Celexa, and Cymbalta, and Effexor.  And part of my brain has never come back.  I think the part that departed included the "good taste" part.  Also the "give a damn what you think" part.

This cake and the guerilla party I held in the hospital lobby to celebrate the 45,000,000 people at risk for suicide who will survive it, the same hospital whose psych ward I hope never to call home, definitely come out of the "Prozac Monologues" spirit.  So does the grammar of that last sentence.

This one, I am submitting to cakewrecks.com.  So, Elaine, (a friend who happened by the party and was speechless) you can go ahead and say it.  Yes, I know.

Some people actually do get it.  One of the guests was a psychiatrist who laughed along when I bemoaned having thrown away all the meds I have stopped using over the course of the Chemistry Experiment, so that I was reduced to Smarties and Mike and Ike for decorating material.

So...

"I have a dream. Okay, technically it's a fantasy." [Elmont, Doonesbury]  That when people who survive self-injury are transferred from ICU to the psych ward, they will be greeted with a cake.  That when they get home, there will be a party, just like the party that will greet my friend who just made it through colon surgery.  A quiet party, befitting the energy level of the guest of honor.  But a party with a guest of honor, for having survived this latest round with a disease that has a 15% mortality rate.  I have a fantasy that people who survive self-injury, or manage to avoid it altogether, will be treated like people who survive breast cancer.

I have a fantasy that next year the Psych Department itself will host the party for Suicide Prevention Week, with both Emergency Room workers and the patients, out on a pass, sharing the honor.  For sure, the hospital-catered cake will look better. 

To Survive

To all of us who are surviving treatment resistant depression.



I’m coming up only to hold you under
I’m coming up only to show you wrong
And to know you is hard and we wonder
To know you all wrong we were
Ooo Ooo

Really too late to call so we wait for
Morning to wake you is all we got
To know me as hardly golden
Is to know me all wrong they were

At every occasion I'll be ready for the funeral
At every occasion once more is called the funeral
Every occasion I am ready for the funeral
At every occasion one brilliant day funeral

I'm coming up only to show you down for it
I'm coming up only to show you wrong
To the outside, the dead leaves, they are alive
For'e (before) they died had trees to hang their hope
Ooo Ooo

At every occasion I'll be ready for the funeral
At every occasion once more is called the funeral
At every occasion I am ready for the funeral
At every occasion one brilliant day funeral

by Band of Horses