Finally...A New Word About Antipsychotics and Weight Gain

If you were asked to take a medication (for an illness you don’t believe you have) and warned that the side effects might include:

• fatigue

• drooling

• sexual disfunction and

• weight gain,

would you take it?

Silly question. 

And, to paraphrase the famous movie line, “You had me (saying hell, no!) at weight gain.”

Seriously.

Still so much to learn

This has been one of the reasons my son hates to take his meds, and refuses or pretends to swallow them whenever possible.  For years, we have worked around this, but yes. I get why.

Finally, though, there is some explanation about the weight gain, which may lead to more research and better medications.

According to new research,  the problem is  in " blocking certain dopamine receptors, known as D2-like receptors.” This is how most antipsychotics work.

But – and I never knew this before (not a neuroscientist, but I sure feel like one sometimes) - “the body actually has more dopamine receptors outside the brain than within it”.

Whoa! This is according to Dr. Zachary Freyberg, the senior researcher on the new study.

And where are these receptors? Many are in the pancreas, too, and “when the researchers used antipsychotic medications to block the pancreatic cells' D2-like receptors, that ramped up the production of both glucagon and insulin. In the body, unchecked release of those hormones could quickly lead to a loss in insulin sensitivity and chronically high blood sugar levels.”

So – the weight gain my son experiences when on these meds is not his fault.

So what now?

Researchers are looking to find new meds that don’t block dopamine, and find other ways.

Wouldn’t that be nice? Please, yes, more research, new treatments. Save our loved ones.

In the meanwhile, I will add that three things have helped my son keep his weight gain to minimum: physical exercise (he lost at least ten pounds when he began to work as a restaurant server), keeping the carb intake down (not so easy for a vegetarian, but the more he used vegetables and fruits the healthier he got), and keeping an eye on boredom eating.  the busier he is, the better his eating.

This isn’t earthshattering news for any of us watching our weight – but it has been nice to see that even on psych meds these methods can help.  

Still – when he lost his job due to Covid crash (economic, not medical), his activity went down and boredom went up.

So – please – keep that research coming.

And thanks for some good news.

What Exactly is Schizophrenia, Anyway?

I often get this question, even years after our family's openness about Ben's mental illness.

Recently I came across this guide from Juno Medical, and it explains it all really well!   

Here is an excerpt:

What is schizophrenia?

The word “schizophrenia” derives from the Greek “skhizein” (to split) and “phrēn” (mind) and indicates a long-term mental disorder that involves cognitive, behavioural, and emotional dysfunctions.

...

What are the symptoms?

Symptoms of schizophrenia usually start between ages 16 and 30 and can be divided into positive, negative, and cognitive ones.

Positive symptoms

Positive symptoms refer to an excess or distortion of normal functions.

Hallucinations: hallucinations can involve all 5 senses (hearing, sight, taste, smell, and touch). Hearing voices is the most common type of hallucination in schizophrenia. People with the disorder hear voices that talk to them about their behaviour, give them commands or threaten them or others.

Delusions: delusions involve having a distorted image of what is happening in the reality. Delusions can be persecutory, where people believe that others are trying to harm them or plotting against them, and delusions of reference, where people think that the environment is directly related to them, e.g. they believe they receive special messages through the TV or the radio.

Disorganized speech and behaviour: the person shows incoherent speech that impairs effective communication as well as difficulties in completing basic day-to-day activities. It also includes bizarre or inappropriate behaviour.

Negative symptoms

Negative symptoms refer to a decrease in socialization, motivation, emotional responsiveness, and movement.

Apathy: the person shows lower interest in activities that used to be part of his or her everyday life, such as work, studies, or sport. Personal hygiene and appearance may also suffer noticeably.

Lack of emotion: patients show diminished affective responsiveness or display inappropriate reaction - or no reaction at all - to either good or bad news. People with schizophrenia may also show anhedonia, which defines an inability to experience pleasure.

Poor social functioning: the person avoids contacts with other people and prefers to spend time alone and isolated.

Cognitive symptoms

Cognitive symptoms involve difficulties with memory and concentration.

Disorganized thoughts: schizophrenia sufferers may demonstrate disorganized thinking and difficulties in expressing thoughts or integrating feelings and behaviour.

Difficulty concentrating: the person displays attention deficit and the inability to gather and process information and make decision out of it.

Poor memory: the person will have trouble keeping recently learned information and use it to carry out a task.

• Hebephrenic schizophrenia: also known as disorganized schizophrenia, this subtype involves incoherent, illogical thoughts and behaviours, and emotional blunting.

want to know more? check it out!

Here is the link to the full guide from Juno Medical.

Many thanks! EDUCATION IS POWER! 

On Glee, Odd Behavior, and - Schizophrenia?

Today's post comes courtesy of Ben Behind His Voices reader - and fellow Mom and blogger - Kari Larson. She wrote to me about a recent episode of Glee that I had also watched....and noticed Sue Sylvester's line of dialogue that compares character Blaine's new interest (talking with puppets) to that of someone "with schizophrenia and off meds"

I had noticed it, but it didn't really hit me as insulting because...well, hey, this is Glee, where they exaggerate pretty much everything and nothing is really off limits. Everyone acts erratically on Glee, and eventually they usually redeem themselves with some lesson following the farce.

But my son Ben doesn't watch Glee, so he had no reaction to the episode. Kari, however, wrote about a different experience. 

Hi Randye,

My daughter is 17 and has schizophrenia. She and I have watched Glee since the very beginning and overall it's been a show that embraces all types of people.

The most recent episodes have really upset us, and I'm wondering if some of the dialogue has come to your attention.

In one episode, the character of Marley is complaining about her ex-boyfriend's erratic behavior, that he's nice one minute and horrible the next, and says it's so "schizo."

This not only upset me because it was said in a negative way, but because it's not even correct, further perpetuating the myth that schizophrenia entails a split personality disorder. Untrue.

Another episode -- quite possibly the very next one -- has Sue Sylvester complaining that she didn't want school board members coming to the school and seeing "schizophrenia" students talking to imaginary puppets (one character had a hand puppet).

My daughter is heartbroken. I've sent Twitter comments to Ryan Murphy (Glee creator), Glee on Fox (official Glee Twitter account) and one of the executive producers. I don't expect to hear anything back, but I was wondering if any of this has come across your radar.

Thank you,
Kari Larson

In her blog(http://ninepillsaday.com/) , Kari adds: "I’m annoyed by two things. One: Schizophrenia DOES NOT MEAN split personalities. Two: Please, unless you, the writers of Glee, are headed toward a fantastic teaching moment, STOP USING THAT WORD. Stop using any form of that word. It’s insulting and, more often than not, used incorrectly."

What do you think? Glee "just joking" in the way it does for many issues, or stigma to to be protested? Does Sue Sylvester owe us an apology in a future episode? 

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork....and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.Basic eligibility for either program requires:

• you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

• your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia

After meeting the basic eligibility criteria for SSD benefits, your application with the SSA will be reviewed to see if it meets the listing for Schizophrenia in the SSA’s manual of condition that qualify known as the Blue Book. This listing, which appears in section 12.03 of the Blue Book, requires you suffer from one of more the following issues on a consistent or intermittent basis:

• isolationistic behaviors that make you socially and emotionally withdraw

• illogical thinking

• incoherent speech

• inappropriate moods

• hallucinations

• delusions

• catatonia

• overly disorganized behavior

In addition to your application and accompanying medical documentation proving the previously mentioned signs and symptoms, your medical records and other supporting documentation must also show you experience serve limitations, including at least two of the following:

• the ability to participate or complete normal daily activities of living

• the ability to focus on and complete tasks, including normal job duties and tasks in your personal life

• the ability to maintain relationships or otherwise function in social situations

• to persist in life without experiencing lengthy and recurrent “episodes of decompensation”, which are periods during which your symptoms get substantially more prominent and pervasive

 For more information on applying with Schizophrenia, visit: http://www.disability-benefits-help.org/disabling-conditions/schizophrenia-and-social-security-disability

Getting Benefits without Meeting the Listing

Even if you are unable to qualify under either of the listings detailed above, you may still be able to receive disability benefits with Schizophrenia. To do so, you must show through your medical records and other documentation that you qualify for a medical vocational allowance, which simply means that while you do not meet a listed condition, your symptoms of Schizophrenia are still so severe that they prevent you from working.Residual Functional Capacity (RFC) report forms completed by you and by your doctor are the backbone of a medical vocational allowance. RFC reports on mental functioning and physical functioning may be required, dependent upon the symptoms and limitations you experience.

Applying for Benefits and What to Expect

Disability benefit applications can be completed online with the SSA’s website (http://www.ssa.gov/applyfordisability/) or in person at your local SSA office. Either way, it is important that you collect as many of your medical records and other documentation as possible before beginning your application. All of this documentation should be submitted at the same time, or just after, you turn in your completed application forms.

After submitting your application, you should expect to wait at least three months before receiving a decision. Don’t be discouraged if your application is denied. Almost 60% of applications are initially denied, There is an extensive appeals process during which you may still be approved for benefits.

Article by Ram Meyyappan, http://www.disability-benefits-help.org/blog

Social Security Disability Help 

"Hearing Voices" Movement...Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben's symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only "understood" their origin?

Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  "hearing voices" movement - or, in the US, something called Mad In America. I'm glad it has worked for some - but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist "voice hearers," as some wish to be called. Unfortunately, most of these groups don't want to recognize the very different needs of people with severe mental illnesses.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.

Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.

My comment to her post follows. A slightly shorter version appeared in HuffPost.

What do you think?

We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.

Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.

My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.

Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.

The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.

Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.

We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.

Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope

Conversation Crossroad Interview

Here is the latest radio conversation about mental health, family support, the tragic (and possibly preventable) Newtown shootings, and more. So many issues.

Listen to internet radio with conxroad on Blog Talk Radio

Schizophrenia, James Holmes, and Hindsight

I think the psychiatry career of  Dr. Lynne Fenton may be over.

Worse than that, she must be questioning whether she could have done anything to prevent the "Batman shootings" in Aurora that killed 12, and wounded many others.

James Holmes: Schizophrenia?

So it leaks out that shooter James Holmes has been in "treatment" for schizophrenia. Big Duh. It was only a matter of time before that was revealed, sadly.

The question, though, is this: what kind of "treatment" was he getting?

Holmes in court

According to this PBS Report, and interview with CAROL LEONNIG,  of The Washington Post

"(New information) shows that James Holmes, the lead and only suspect in this shooting rampage in Aurora, Colo., was seeing a psychotherapist or psychiatrist in his university where he was a graduate student. She was a very senior psychotherapy director, basically the medical director for the outpatient clinic for mental health treatment for students.

And she was seeing him for some time before this tragic event...Lynne Fenton is the doctor in the case. Her specialty and what she has been mostly researching is schizophrenia."

What has yet to be revealed is whether or not Holmes was taking medication for his schizophrenia, and whether he should have been committed to a hospital stay - whether he "wanted to" or not - if there were any signs of this possibility of violence.

Could Treatment Have Prevented the Tragedy?

This leads us to the issue of "Assisted Outpatient Treatment" well-covered by the Treatment Advocacy Center - so I will say no more about that in this post.

But there is also the issue of James Holmes' family life.

Grief in Aurora

There are those who will point to his parents as the "cause" of his actions - yes, still. But I know all too well how the best parents can feel powerless in the face of schizophrenia - especially in the absence of support and education.

The Grief of Countless Families

Check out this Open letter  "To the parents of James Holmes: Our son has schizophrenia; we know how hard it can be" . In it, the family expresses first-hand empathy for the confusion and chaos that schizophrenia can bring to a family.

and this was my response (among many other comments)

Dear Margaret - and family - Thank you for this empathetic, beautifully written open letter. There will be those who do not believe your point of view; perhaps, before my own son Ben developed schizophrenia, I might have been one of them.

But no longer.

Ben is 30, and we have been through the same confusion, shock, grief, and anger as you. Eight hospitalizations later, a few of them as relapse during the recovery period that began when Ben's meds began to restore his brain at last (not completely, of course, but enough to allow a slow thaw from his "frozen in time" state), we are grateful for every small step Ben takes to find a new normal for his life.

He has a job, goes to school and does well, and can - at last - take family trips with us with little fear that his behaviors will scare flight attendants.

It has been a long road, and we still monitor Ben's medications - because in two days without them he will wind up back in relapse. I wish he didn't need them - and perhaps, as he ages, this may change if he is carefully monitored - but right now he absolutely needs this treatment - medication, support, structure, community, purpose and love.

Perhaps if James Holmes had had treatment that works - involuntary, if necessary - this could have been prevented.

My heart goes out to you, and all affected by this senseless tragedy - including the Holmes family, and even James himself.

We are lucky, perhaps, to have Ben back in our lives in such a positive way - but I know that we were helped immeasurably by education (especially the Family-to-Family program at NAMI, and even the website communities like HealthyPlace that provide info and perspective) and by the stories of others - which is why we wrote our memoir, Ben Behind His Voices (which included some resources that saved our family) -Thank you for sharing your story and perspective. Perhaps it, too, will make a difference.

best,
Randye

Practical Advice: Treatment Advocacy Center

This post is for you if you need some clear, practical advice on how to be prepared for a mental illness emergency. The possibility always lurks in the corner, while we try to keep on eye on gratitude for the good days.  The Treatment Advocacy Center has an excellent page on this topic, with step-by-step instructions for keeping the monsters at bay by knowing we are ready for them.

I will send you there through this blog post by their Communications Director, Doris Fuller, who says:

We who love someone with a severe mental illness probably all have our own personal coping mechanisms for getting through the worry and fear and frustration of living with the impact of treatable but chronic brain disease. The demons retreat, but they never retire. For me, being ready for them is the first defense.

I suggest you read her short, poignant-yet-realistic post first, but if you're impatient here's the link to the Be Prepared for an Emergency page.

Like all preparation, this takes time - but will save you a lot more in the future. Trust me.

Thanks, by the way, to all of you who wrote to express concern about Ben and his "adventure" in a questionable neighborhood. Like Doris in the above blog post, I had my eye out for a stress-triggered return of symptoms, but luckily his reactions to the stress all seem quite conventional. The only "demons" were the ones I could see as well: fear of returning to that neighborhood, reminding us to set our home alarm and change the locks, some reluctance to be alone. I would feel the same way.

Mental Illness Recovery: Four Cornerstones

Ben's recent setback (and, fingers crossed, re-recovery) has cemented, in my mind, the "Four Cornerstones of Recovery"  in Mental Health.  Here I share them in in a short video for HealthyPlace.com's YouTube Channel.

Attention must be paid to the human being, while making sure the physical balance is maintained by supervising medications.

And for the family? This reminder: education helps. Here, a link to an article about Family-to-Family, and its documented effectiveness:

Support Program Can Help Caregivers Cope with Relative’s Mental Illness

In the Dark about Mental Illness? Great Resource

We have, at last, the official publication date for Ben Behind His Voices: September 15, 2011. It's on Amazon right now for a peek, and my thanks to those of you who've told me you're eagerly awaiting the chance to read more. My hope is that the book will help others by sharing our story, both the trials we experienced as and the hope we eventually found. Meanwhile, I hope this blog can continue the work of sharing useful information and resources while providing updates. So - in that spirit:

Just learned of a great entry on Psychology Degree.com -25 Q&A Sites on Mental Illness

It's chock full of amazing links. Thanks to Patricia Duggan for sharing it with me.

Also, healthyplace.com (where I also blog about Mental Illness in the Family) is a terrific resource for many health issues, with a fine section on mental health.

There's plenty of guessing where mental illness is concerned, I know. All I have to do is look at Ben's current relapse to know that even some providers, unfortunately, do their share of guessing.  In some cases, it's because research results are so contradictory, or budget cuts and legal issues create confusion.  In other case, as you know from this blog, much info is available just by taking the time to listen to the family and/or prior caseworkers.

Joyce Burland Ph D

When Dr. Joyce Burland created NAMI's Family-to-Family course, she knew that families craved good information, and that by becoming educated they could be better partners in their loved ones' recovery, and  more able to take care of themselves as well.

One of the elements of recovery for people like my son Ben is a family educated in the facts of mental illness.  Believe me, it can make all the difference. Not a cure (sorry, I wish I had the magic), but by staying informed we can all partner better for the best possible income.  So I'm happy to share the above resources with you.  I hope it helps, even a little.

Thanks to all of you for your comments, insights and support re Ben's current relapse.  Now that we''ve absorbed the change a bit, and done everything constructive we can possible to with our anger at the mistakes that could have been avoided, we are taking this new chapter one step at a time.  Ben is safe for now, his hospital team is far superior to the case management team who screwed up (sorry but it's true), and we are back to channeling hope and faith as much as possible while staying alert to anything, any action, that might help bring Ben back to the life he's worked so hard to recreate. Right now it's all about the meds, and his "right" to refuse the only one that really works.  Grrr. Will keep you posted. Thanks again.

Schizophrenia Recreated in a Computer

How does schizophrenia develop in the brain?  What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.

Hear the interview here.

"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."

Why? To learn.  If we'd never gone into space we'd never have the global networks we enjoy now.  To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.

Research is vital to understanding - and to eventually finding a cure.  We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.

Schizophrenia Awareness Day: May 24, 2011

Schizophrenia Awareness Association

The Schizophrenia Awareness Assocation (SAA) in India has declared this day Schizophrenia Awareness Day. Schizophrenia affects one percent of the world's population. Not just in the United States; this is an international statistic. The Times of India has a wonderful article today, talking about recovery and the need for family and social support. Oh yes. Indeed. One quote: 

"Integration of schizophrenics into the mainstream society and spreading awareness on the mental condition is important for normalcy to return. Isolation should be avoided at all costs."

Community Matters

Oh, how true this is - and how tested it has become here in our family this week.  Ben has, in the space of one month, continued at his new job (his first job in eight years), finished his six credits in college (final papers and projects), and moved into his own apartment.  That's a lot of change, and a lot of stress.  So far, so good - almost.

Families who remain involved in their loved ones' recovery know this: let go as much as you can, and keep your eyes open for signs of relapse.  This is, always, the delicate balance. So - when Ben moved from a group home (with eight housemates and 24-hour staff support) to a supported studio apartment (with med supervision a four-block walk away, and no community handy) this month, I had my concerns.  Oh, yes.  I do want him to take (and enjoy) responsibility, but as always medication compliance is the foundation upon which this success rests - and, of course, the emotional and social parts of his treatment plan.

Families know the signs of potential relapse, believe me.  In Ben's case, one day cheeking the meds shows up in his personality: he gets too energetic, tries too hard to engage. His voice goes up in pitch.  I saw this happen this week, so I went in to action: called his new caseworker, visited the weekend staff at the office, and reminded them all: Watch him. He doesn't want to need you, but he does.  Make sure he takes the meds, and that they stay in his system.  Oh, the tricks he can play.

Today he is back to normal.  Mission accomplished - for now. That was a reminder I'd hoped to never see again: that Ben needs the medication to continue to on this amazing path in recovery.  And, he needs his community: family, friend, providers.  He may never agree that this is so, but for now I will be the watchdog.  Thank goodness he has caseworkers who will take me seriously.

This is a team effort.
More from the article in Times of India:

On bringing the patient back into mainstream society 

* Proper medication, family support, therapy and rehabilitation is important

* Psychotherapy, cognitive behaviour therapy, group therapy and family therapy are required

* Rehabilitation through workshops at support group meetings and at rehabilitation centres is necessary

No matter where you live - this is true. Together we can help each other.

What's it Like?: 20 Greatest Memoirs in Mental Illness

Another great resource, especially if you're looking to contribute your experience professionally, and want to get your Masters' Degree online : Masters in Health Care . This latest blog post also lists the 20 Greatest Memoirs in Mental Illness. Whether you have been diagnosed yourself, are providing services professionally, or as a family member (lots of work, no salary!), getting the insiders' view is invaluable.If this were my list, I'd add the following memoirs:Henry's DemonsThe Day the Voices Stopped His Bright LightCrazyBeautiful BoySomeday I hope Ben Behind His Voices will make this list. When it does, I'll know that its message of hope and its dose of reality will have reached more readers - and that the message will spread.  Guess it's a bit much to expect to be on here, since the publication date is still a few months away! Want a peek? Amazon has it for you.

Supported Housing: One Giant Leap for Ben

I'd always been under the impression that when Ben was ready to leave his group home, he'd be gradually weaned off the 24-hour staffing to, perhaps, 16 or 12 hours of supervision. But no. Ben's recent accomplishments, notably lasting six whole weeks at his new job, have forced the issue of getting him "graduated" from supervised housing to the next step. Evidently, there is no middle ground in our state. The next step is living alone. Yes, he qualifies for a med nurse to show up twice a day and carry out doctor's orders for supervision of meds.  Yes, there is help "if he needs it" in the office a few blocks away.  But still. While I share and applaud Ben's accomplishments to qualify for this next step, I am also as concerned about this change as I am happy for him.

Tomorrow, he moves. First and last month's rent? He only has part of it.  Most of his benefits were withdrawn almost as soon as he received that first paycheck.  So guess who has to make up the difference? What do people do who don't have parents to help them?

Furniture? He needs a bed, a table and chairs, the basics of life.  So much need, so soon, with nothing in the bank to pay for it now. What if he had no family? What do others do? I think we'll be making daily visits to Goodwill for awhile. Our family has unlimited love to give, but definitely not unlimited funds. Far from it.

Ah, the thrill of the challenge. But finding furniture, and stocking Ben's fridge, will be the easier part. How do I stay away from the fear: What if it's too much for him? What if, after seven careful years of building his life back up, this is too much independence, too soon?

What if Ben crashes? I try not to think this way, but it sneaks into my head when I'm not looking.

After seven years with the safety of all-day staffing, Ben will be on his own in so many ways. He is thrilled beyond belief. I am happy for him.  I am, also, scared. I want to believe that his recent accomplishments - doing so well in part-time college classes, landing and keeping this new job, racking up years now of sobriety - are proof that he is really growing up at last, chipping away at the years he lost when his illness was in the forefront.  I will behave as if I have complete faith in his ability to thrive in this new phase.  And maybe - just maybe - it will all work out wonderfully.

Ben has certainly earned this chance to prove himself. There is little I can do now except be happy for him, support his independence, and - between you and me - keep my eyes wide open for signs of relapse, and my arms and heart wide open to love and congratulate him.

Thoughts?

"Hope, Respect and Dignity" : One CT Doctor Writes about Mental Illness

Bridge House, CT

In a recent article in the Stamford Times, Dr. Michael Basso writes about the need for those non-medical elements in treatment for mental illness. Things like Hope. Respect. Dignity. And, yes, even Humor.

He spoke at a mental health day center, where many in the group were homeless. He found that the above elements created an interactive, respectful, fun session. Here's what he had to say about humor:

"I cracked as many jokes as I could before and during the talk and got the patients engaged in having fun. They were also encouraged to make relevant jokes -- perhaps the most important innovation of all. The laughter put them further at ease and the jokes engaged them in ways that helped return control back to them -- called having an internal locus of control"

Lionel Ketchian, Happiness Club

This reminds me of the Happiness Club, which began in Connecticut but now has spread internationally. Lionel Ketchian, its founder, runs a meeting at Bridge House ("a Clubhouse which is modeled on the Fountain House model of psychiatric rehabilitation. The men and women who attend assist with the running of the program, which helps to restore their sense of purpose, dignity and self worth. Members also work at part time jobs, with staff providing intensive supports") 

Lionel says he always gets much more than he gives.

I've had the privilege of participating in one of the Bridge House Happiness Club meetings. Truly amazing.

Hope. Respect. Dignity. Humor. Yes, please

Glee and the missing mental illness: schizophrenia

Dear Glee writers:  I truly applaud your script this week, where Ms. Pillsbury finally comes to terms with her OCD. Dr. Stephanie Smith blogs beautifully about this here.

I loved the way Glee handled OCD in this episode- the stigma, the symptoms and the road to treatment.  My only bone to pick: the psychiatrist played by Kathleen Quinlan - I'm assuming her vocation, as she was able to prescribe the SSRIs for Emma - spoke beautifully about acceptance in mental illness, mentioning every diagnosis except for schizophrenia.  That, too, deserves an open forum.  Come on, at least give it a mention!

Still, it's a start.  Thanks, Glee. Someday maybe my Ben will may be proudly open about his illness. Maybe. But in the meantime, I'll remain thrilled that he is agreeing to treatment.  So far, so good.

May is Mental  Health Month! Here's a great resource for info at Mental Health America.

Schizophrenia and a "Great Personality" - possible? Yes!

This marks one month of employment for my son Ben.  One full month! He loves his job.  He has an answer when people ask him "What do you do?" The increase in his energy and pride is thrilling. Really. Thrilling.

Do I worry, still? Hmmm. Well, let's just say I'm keeping my eyes open for signs of stress. And simultaneously trying to stay grateful in each moment. I don't call Ben to see if he has gotten up in time to go to work - but the thought occurs, several times a day. NAMI has taught me that letting go is part of what parents must do - all parents, actually, but it's a more intense process when you've seen your child led into the mental hospital more than once. Letting go, slowly.  Learning to trust his abilities, slowly.  He has earned it.

Ben said yesterday that his manager told him he was hired because of his "great personality":  friendly, "good with people." Wow. What a long road to this place. I know who my son was before the illness (brilliant, charming, loving, funny); I also know how he was when in crisis (mostly unreachable).  To see Ben's personality re-emerge - tentatively at first but more strongly now - is indescribable.

Schizophrenia and other mental illness symptoms come in two categories: Positive (added to personality) and Negative (taken away from the personality).  The latter is as heartbreaking as the former. Ben's current state of recovery is, I hope, inspiring; still, I know it would change in two days if treatment should stop.  So much more research is needed.So much more. For so many, like Ben, are waiting to come out from behind their voices.

Negative symptoms can be helped by certain medications. They can also sometimes respond to the other vital areas of treatment: community, love, purpose, patience, and the proper balance between challenge and reality. According to schizophrenia.com, a short summary of a list of negative symptoms are:

1. lack of emotion – the inability to enjoy regular activities (visiting with friends, etc.) as much as before

2. Low energy – the person tends to sit around and sleep much more than normal

3. lack of interest in life, low motivation

4. Affective flattening – a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.

5. Alogia (difficulty or inability to speak)

6. Inappropriate social skills or lack of interest or ability to socialize with other people

7. Inability to make friends or keep friends, or not caring to have friends

8. Social isolation – person spends most of the day alone or only with close family

Catherine Zeta-Jones, Charlie Sheen and kicking the shame out of mental illness

According to CNN, "Catherine Zeta-Jones, has checked herself into a mental health facility.
The actress, who has been by Douglas’ side since he was diagnosed with throat cancer last fall, is seeking treatment for bipolar II disorder, her rep confirms to CNN."

There is an excellent link to an article on bipolar disorder here - and brava for Ms. Zeta-Jones for not only getting help, but for choosing not to keep it a secret.  This takes courage, class - and, I believe, a desire to help others by example.

 As for Charlie Sheen - well, no one can diagnose from afar, but I sure would bet a cup of coffee on the fact that he, too, has bipolar disorder.  Just saying.  And, with acceptance and continued treatment, he could be back on Two and a Half  Men by the fall.  However - the road to acceptance is no short journey. 
Some never make it.  Just read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help, to hear more about why.  He talks about schizophrenia, which is a thought disorder; bipolar is a mood disorder, and that makes for many differences.  With my son Ben's schizophrenia, there is no moment when his eyes shine with his full personality the way they used to before his illness developed; With bipolar disorder, there is often a precarious period during which the highs seemed tempered by the lows. As I sometimes say to the members of a NAMI Family-to-Family class when I teach about the different illnesses, "at least with bipolar you get to be charming part of the time."  It gets a laugh - a painful laugh. But still.  Hence, Charlie Sheen's wonderful timing in comic performances - and his outlandish hubris on his live tour.

However, there are similarities as well in thought vs. mood disorders. Psychosis is psychosis, and it's hard to diagnose a speeding train.

Britney Spears - remember the shaved head? Recall how her father finally took control and became legal co-conservator? See how well she seems to be doing now? That is so wonderful to see; still, in interviews promoting her latest CD, I see no reference to what really seems like a bout with bipolar disorder.  Is it her family's right to keep this all private? Absolutely. But I can't help but imagine how many young people would be helped if Britney were to talk openly about her struggles, and if she was helped by treatment: medication, family involvement, therapy. So many college students suffer from depression and - more importantly - do not seek help because of shame.

Let's get shame in mental illness out of the closet and kick its butt. Being open about treatment is a great step towards that acceptance.  Wishing Catherine Zeta-Jones and her family lots of love, and the same empathy and applause her husband Michael Douglas got when he publicly dealt with cancer.

NAMI Family-To-Family: Happy 20th Anniversary

My son Ben is two weeks into a job. An actual job, with paychecks and everything. And by “everything”, I mean a reduction in benefits which almost wipes out the money he’s earning…but that’s another story. The main thing is that Ben is earning this money, and that feels completely different to him. The change in his self-esteem is astonishing. He has something to say when people ask him, “So what do you do?”

As the publication date of Ben Behind His Voices approaches,  I find myself thrilled that its launch will coincide with the 20^th Anniversary of NAMI’s Family-to-Family Program, because that is the course that saved my family by teaching me what I needed to know to cope with my son’s mental illness. NAMI helped me, and then I had the tools and the support to help my family – including, eventually, my son.

In January of 2002, I walked into my first F2F meeting – and I walked out completely changed. Although NAMI support groups had thrown me my first lifeline out of the hellish confusion of my son’s symptoms, I needed more. F2F was different from the support meetings in that it was a structured, once-a-week, course that was more educational in nature. In twelve weeks, I could learn about mental illness and its effect on the entire family, including the person who suffered from the illness.  This was taught by other family members who were trained by NAMI to implement the course. And – it was free.  All that was required was the commitment to attend all twelve classes, one evening a week, for 2 ½ hours each class.

What did I get?

Clarity.

Clarity can bring many other things along with it: Understanding. Mourning. Hope. Anger. Grief. Bonding.

This, I think, was a clearing of my future path to acceptance and action.  It was a start, and a glimpse.  Without this knowledge, I might very well still be fumbling blindfolded through the woods. Sometimes I still am – but since F2F, I always have an idea how to find the path once again.

The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered.  And now, the program has grown and keeps growing. 
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy.  In fact, it was never easy.  Most of that clarity came at a cost. Understanding teamed up with guilt.  Information came along with fear.  Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.

Family-to-Family’s greatest gift was this: I stopped hating my son.  I learned new ways to cope, new ways to communicate with Ben. The course took us from painful realization to empathy for our relative’s experience and the hope that our families could someday absorb these new truths and progress to acceptance and advocacy.  But the only way to the final stages of emotional response was through the pain.  No shortcuts to the stage of acceptance.

There was so much I had learned. And still so much I didn’t know.

But now, armed with all this new and overwhelming information, I felt I could at least talk to the professionals on a respectable level. It empowered me. The class members  empowered each other.

In the past, I had been trying not to react.  Now, at least, I had some tools as to how to react, and some empathy for what life might be like for Ben.

I was going to need it all.  Many crises lay ahead in the next few years. Without NAMI, I don’t know how we would have survived it. Even with NAMI, I don’t know how we did it.

Happy birthday, Family-to-Family.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at a local tourist attraction. Twenty people were hired, and one of them is my son Ben.  Why is this such a big deal? Because Ben hasn't been hired for a job in over eight years, since before his first hospitalization for schizophrenia. I am so overwhelmed with surprise and pride at this news that I realize I hadn't even dared to dream that this could happen yet for Ben.  In recent years, he'd begun to succeed in college part-time (the fact that he is starting to know what he can realistically handle is a huge step in itself.)

So much of Ben's growth in recovery has happened in these small steps that this huge leap into the work world scares me a little - yet I know (and keep reminding myself) that this is Ben's journey.  My questions - will this be too much stress for him? will he be able to wake himself up every morning when he has to get to work by 8:30? will his schoolwork suffer? - are ones I must keep to myself, and trust my son and his team of caseworkers to handle the answers without me.

But - over-riding all this is the wonderful pride I see in my son's eyes.  The value of having an actual job, of feeling useful, of being wanted for what you can offer: yes, indeed, priceless.  Ben, who while in the throes of the onset of his symptoms wrote that work was a "government plot designed to enslave us," has now changed his mind.  This week he wrote this:

If I were to give one piece of advice to the reader of this 'message', I would say that in order to get to where you want to be in life, what you have to do is walk the path.  Now, I understand that this probably sounds easier said than done, and - I won’t lie- it is. I now have goals for my life, and I must be willing to actually perform the steps that the goals require. One way to make this easier is to learn from one’s past, and embrace the lessons which will make walking the path easier. - Ben, 2011

A huge question, though, is one that no one on his team seems to be able to answer correctly - what, exactly, will be the effect of this minimum-wage job on Ben's benefits?His job coach says he is an "employment specialist", not a "benefits specialist," so he doesn't know. Ben's group home staff members ask his agency caseworkers, who ask their supervisors.  Wrong answers abound.Finally, I find some answers. Tips to help you, if you are in similar circumstances:

• There is a "benefits specialist" somewhere in the system.  Hunt and find.

• Social Security has a "Ticket to Work" program designed to help those receiving disability benefits as they take steps to self-sufficiency. Go to www.socialsecurity.gov/work for details

• There are different rules for SSDI, SSI, and any additional benefits you might get on a state level.

Ben is walking his path. Today. And someone has finally noticed - enough to hire him. I, as always, have my fingers crossed and my gratitude high. Having a job to go to is so the most amazing boost for Ben's dignity. Is it that way for you, or your relative with mental illness?