Category Archives: mental illness information

In the Dark about Mental Illness? Great Resource

Ben Behind His Voices Events and Updates, how is Ben doing now?, mental illness information, resources and reading

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. Continue reading In the Dark about Mental Illness? Great Resource →

Schizophrenia and Family: Walking the Tightrope of Recovery

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Recovery in mental illness is possible, yes – but is often a tightrope walk for all involved: consumers, family, friends, providers.  To paraphrase Willy Loman in Death of a Salesman, “Respect must be paid.”

This is an excerpt from today’s radio interview with Ray Andrewsen of WQUN AM in Hamden, CT, where he asks me about our family experience as schizophrenia developed in my son Ben.

Next Thursday, June 9, I’m honored to be the keynote speaker for Fellowship Place in New Haven, CT, one of many organizations providing much-needed support and community for those with mental illness. .

Eighth Annual Doctor Albert J. Solnit Memorial Lecture

Advance ticket purchase is required. Tickets are $25.00 each. To purchase tickets, please click on the link on the left or call Melissa Holroyd at 203-401-4227 x111. All proceeds to benefit housing and support services to adults who suffer from chronic mental illness.

more info: Hope to see you there if you can make it!

Fellowship Place to host our 8th Annual Dr. Albert J. Solnit Memorial Lecture: a discussion with  Author Randye Kaye, Thursday June 9, 2011 at 7:00pm, at the Whitney Humanities Center Auditorium of Yale University, 53 Wall Street, New Haven.
Join us for a conversation with Randye Kaye, based on her book “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, to be published by Rowman and Littlefield in September 2011.  Kaye will share with the audience her experiences with her son who suffers from schizophrenia, how mental Illness affects the whole family and how they helped guide him on his recovery journey as he went from 7 hospitalizations to now 4 semesters on the Deans List at his school.
Kaye humanizes the experience of schizophrenia by including Ben’s point of view, through his poetry and other writings, and pays tribute to the courage of anyone who suffers with mental illness
Following the Author’s presentation, Fellowship will host a panel discussion with the audience and a coffee reception. The Panel will include:

  • Daniel M. Koenigsberg, MD, Former Chairman, Dept. of Psychiatry, Hospital of St. Raphael, Associate Clinical Professor, Yale Medical School
  • Selby Jacobs MD, MPH, Former Medical Director, CT Mental Health Center, Professor of Psychiatry, Yale Medical School
  • Allan Atherton: Treasurer, National Alliance on Mental Illness (NAMI) of Elm City, Past President NAMI/CT, Co-Coordinator, NAMI CT Sharing Hope Initiative
  • Randye Kaye, Author: ”Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, NAMI Family-to-Family educator, Radio broadcaster: NPR.

Schizophrenia Recreated in a Computer

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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

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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

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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 Demons
The Day the Voices Stopped
His Bright Light
Crazy
Beautiful Boy

Someday 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

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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

Ben Behind His Voices Events and Updates, mental illness information
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

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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!

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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

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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.