Thursday, May 30, 2013

The Correct Diagnosis Can Make a World of Difference

The Correct Diagnosis Can Make a World of Difference
By Anita
Hi. I have just been diagnosed with schizophrenia at the age of thirty-nine, which is a long time to be ill and not know it. 
It all began at the age of fifteen. I was in foster care with my grandma and grandad after living with a horrid stepfather who, looking back, probably had mental health issues. I thought there were cameras everywhere and my every move was being watched. I struggled through college and was unable to work because of my paranoia. I eventually had a baby, which seemed to really set things off. 
I decided to go to law school but only completed the first year, as life had become quite difficult. I thought the house was bugged, the television was speaking to me and sending me messages, and I was being followed by the government. I also thought that I was psychic and had special powers. 
The head teacher at my child’s school was very kind and would pick my son up to take him to school because I could not leave the house. Even though, being in a house that was bugged with cameras everywhere was not very pleasant either.
There seemed to be no escape. I was continually diagnosed with depression and went for cognitive behavioral therapy (CBT) but it was not helpful at all, having been misdiagnosed. My mum kept ringing the doctors telling them I was ill, but to no avail. Eventually, she spoke to a really nice doctor who had the experience of working with a psychiatrist and knew all the right questions to ask.
The next thing you know she turned up at my house with two doctors in tow. They diagnosed me with schizophrenia and gave me details about the medications they could prescribe and their side effects. I again went for CBT, only this time it was tailored around my paranoia. Now I have the support of my friends and family and they are able to provide a friendly ear for when I have my paranoid moments. Thank you for listening. I hope my story will help others.

People With Serious Mental Illness Can Lose Weight Too

People With Serious Mental Illness Can Lose Weight Too
By Janice Wood, Associate News Editor, PsychCentral, March 23, 2013
People with serious mental illnesses—such as schizophrenia, bipolar disorder and depression—can lose weight and keep it off through a modified lifestyle intervention program, according to a new study.
Over 80 percent of people with serious mental illnesses are overweight or obese, which contributes to them dying at three times the rate of the overall population, according to researchers. The leading causes of death are the same as for the rest of the population: Cardiovascular disease, diabetes and cancer.
Although antipsychotic medications can increase appetite and cause weight gain in these patients, it is not the only culprit.
Like the general population, sedentary lifestyle and poor diet also play a part. Lifestyle modifications such as diet and exercise should work for these patients, yet they are often left out of weight loss studies.
People with serious mental illnesses are commonly excluded from studies to help them help themselves about their weight,” said Gail L. Daumit, M.D., of Johns Hopkins University, and the study’s lead author.
We sought to dispel the perception that lifestyle programs don’t work in this population. There’s this really important need to find ways to help this population be healthier and lose weight. We brought a weight-loss program to them, tailored to the needs of people with serious mental illness. And we were successful.”
The researcher noted that many people with serious mental illnesses can’t afford or can’t get to physical activity programs like health clubs. Some also suffer from social phobia or have poor social interactions, and are simply afraid to work out in a public area, she said.
Daumit’s group attempted to solve these issues by bringing the gyms and nutritionists to places most of these patients frequent — psychiatric rehabilitation outpatient programs.
Under the trial name ACHIEVE (Achieving Healthy Lifestyles in Psychiatric Rehabilitation), the researchers recruited 291 overweight or obese patients with serious mental illness. About half, 144, were randomly placed in an intervention group, while 147 made up the control group. The intervention took place at 10 Baltimore area outpatient psychiatric rehabilitation day facilities that already offer vocational and skills training, case management and other services for people with mental illness not well enough to work full time.
While the control group received the usual care, which included nutrition and physical activity information, the intervention group got six months of intensive intervention consisting of exercise classes three times a week, along with individual or group weight loss classes once a week.
Both groups were followed for an additional year, during which the weight loss classes of the intervention group tapered down but the exercise classes remained constant.
At the 18-month point, the intervention group lost, on average, seven more pounds than the control group.
Nearly 38 percent of the intervention group lost 5 percent or more of their initial weight, as compared with 23 percent of the control group.
More than 18 percent of those in the intervention group lost more than 10 percent of their body weight after 18 months, compared with 7 percent in the control group.
Participants also lost more weight as the intervention went on. This suggests it took a while to make behavioral changes, but once these modifications took hold, the changes yielded positive results, Daumit said.
Of the people in the study, 50 percent had schizophrenia, 22 percent had bipolar disorder, and 12 percent major depression.
On average, each participant was on three psychotropic medications, with half on lithium or mood stabilizers, all known to cause weight gain. But no matter what they were on, they lost the weight, she said.
We’re showing behavioral interventions work regardless of what they’re taking,” Daumit said.
Daumit thinks the weight-loss program could be adopted by other psychiatric rehabilitation facilities.
This population is often stigmatized,” she said. “This study’s findings should help people think differently about people with serious mental illness. Our results provide clear evidence that this population can make healthy lifestyle changes and achieve weight loss.”
The study was published in the New England Journal of Medicine.


Pullout: “Our [study] results provide clear evidence that this population (mental health consumers) can make healthy lifestyle changes and achieve weight loss.”

Book Ends: The Center Cannot Hold by Elyn R. Saks

Book Ends: The Center Cannot Hold by Elyn R. Saks
Reviewed by Columnist Kurt Sass
A “broken brain” that accomplished a great deal
In the very last chapter of Professor Elyn Saks’ book The Center Cannot Hold: My Journey Through Madness, she states that the reason she writes and speaks out is: “to bring hope to those who suffer from schizophrenia, and understanding to those to those who do not.” I just have one message for her: Mission accomplished! After reading about all the trials and tribulations that Ms. Saks has endured and survived, I believe anyone who is fighting the daily battles with schizophrenia, or any other psychiatric disability, will come out of the experience with a renewed spirit. Also, I believe anyone who has never experienced schizophrenia will find reading this book an extremely educational, eye-opening experience.
One very strong point about Ms. Saks’ writing is her honesty and candidness, especially when it comes to her struggles with remaining on her medication. Ms. Saks points to many instances when she is doing fairly well, but then decides to lower or stop taking her medication altogether and then almost immediately relapses into psychosis. Many writers would not write anything at all that might shine a negative light on themselves, but Ms. Saks explains the reasons why she (and many others) make these decisions about stopping medications.
It took Ms. Saks many years to come to terms with the fact that the medication does help keep the psychotic thoughts away and that she must continue to take it, even when feeling well. She discovered the reason she would stop taking medication was that she would feel that each time she put a pill in her mouth it was a reminder that her brain was profoundly broken and defective, and that by taking pills she wasn’t being her authentic self.
In addition, Ms. Saks said she had to come to terms and accept that she had a mental illness. She tells the story of an analogy a friend told her about a riptide, that your first instinct is to fight it, and you use all your energy fighting it. Ms. Saks was using all her energy fighting her diagnosis of mental illness by stopping her medication. Once she accepted the diagnosis and allowed the medication to do its job, things continued to get better.
Ms. Saks also goes into great detail about the importance of talk therapy as well as medication in her recovery. There were many examples in the book when she was completely off medication and feeling psychotic and either reached out to others (friends, therapists, etc) or they reached out to her.
Perhaps the most powerful part of the book is the amazing disparity of treatment she received while going through her various psychotic episodes. Many times it simply came down to a matter of who noticed the behavior or which hospital she was admitted to. The most blatant example of this was when she was admitted to one hospital (she was talking incoherently, but not behaving violently at all) and put in four-point restraints for days. Just a short time later, exhibiting the same exact behavior, a different hospital nearby felt that no restraints were necessary at all. And it turns out they weren’t needed.
Professor Saks is a Graduate of Oxford University and is a Professor at the University of Southern California Gould School of Law. She was able to achieve all this while having numerous psychotic episodes throughout the years.
The Center Cannot Hold: My Journey Through Madness has won numerous book awards and was on the Time magazine top ten best-sellers list for Non-Fiction books.


Pullout: “...each time she put a pill in her mouth it was a reminder that her brain was profoundly broken and defective, and that by taking pills she wasn’t being her authentic self.”

Plans Underway to Get Mental Health Consumers Out of Adult Homes

Plans Underway to Get Mental Health Consumers Out of Adult Homes
By Jota Borgmann, Senior Staff Attorney, MFY Legal Services, Inc.
And into other, hopefully better, housing options
Many New York City adult home residents with mental illness are unsure what opportunities they have to move to community housing. In 2009, a federal court held that New York’s practice of segregating thousands of people with mental illness in large adult homes is discrimination in violation of the Americans with Disabilities Act. In April 2012, that decision was vacated on appeal on a technical ground, but the trial court’s finding of discrimination was not questioned.
Two important things have happened in the last year. First, in August 2012, the State Office of Mental Health issued a request for proposals for supported housing providers to create 1,050 housing units for adult home residents in Brooklyn and Queens. The supporting housing providers who were awarded contracts include: Jewish Board of Family and Children's Services, FEGS Health and Human Services, Institute for Community Living, Transitional Services for New York, Comunilife, and Federation of Organizations. Those providers, along with Health Homes and Managed Long Term Care Plans, should be reaching out to residents in Brooklyn and Queens adult homes soon and some have already begun.
January 16, 2013, the State Department of Health (DOH) issued new rules about certain adult homes, which it calls “transitional adult homes.” Transitional adult homes are adult homes with 80 beds or more where at least 25% of the residents have a serious mental illness. The new regulations say that these adult homes cannot admit new residents who have a serious mental illness. They also require the homes to create compliance plans. An adult home’s plan must set forth how the home will reduce the number of residents with a serious mental illness by placing them in housing in the community. The plan must also identify how the home will meet the needs of its residents while implementing the plan, including how it will help residents develop independent living skills and ensure they have access to mental health services.
The selected (see sidebar) adult homes must come up with compliance plans by May 16, 2013. If a transitional adult home fails to submit a compliance plan, the DOH will make a compliance plan for it. The DOH has to review the plans and decide whether to approve them by August 14, 2013. Once approved, adult homes must implement the plans over a reasonable period of time.
If you live in a transitional adult home and you are a person with a serious mental illness, the adult home’s compliance plan should provide you with other housing options. This process could take several years. Note that the regulation does not require the adult home to move all residents with serious mental illness, but merely to reduce the percentage of residents with mental illness below 25%.
Residents at some adult homes have reported receiving misinformation from adult home staff about the regulations; for example, they report that they have been told that homes will soon close or that they will have to be transferred to a nursing home. No adult homes have closed as a result of the regulations and the regulations do not require that residents be moved to a nursing home as part of any compliance plan.
Note: Adult home residents in New York City who have questions about supported housing or the transitional adult home regulations can call MFY toll-free at (877) 417-2427.

Pullout: “If you live in a transitional adult home and you are a person with a serious mental illness, the adult home’s compliance plan should provide you with other housing options.”


Ward Stories - Summer 2013

Ward Stories
A column organized by Dan Frey, Interim Poetry Editor
It is my pleasure to present the poems of Sarah and Gil. Sarah has been very eager to get published by City Voices and sent us many an encouraging email. She has written many fine poems but alas we only have room for one. Gil's poem highlights his experiences in a psych hospital where they sent him for treatment of his drug addiction.

Autobiography

By Sarah
I’ve lived my life on an island
A round one, green and plush
Where my white feet shift all the white sand
And the salt makes my pale face flush

I sing with the island fairies
And make walls of tiny stones
And pretend that the clouds make me merry
And pretend that I'm not alone

Every now and then someone will float past
On their way to some far-off place
And I wave as the current sweeps by fast
While I memorize each smiling face

But my stone walls have started to totter
And the clouds are falling down
Still I dare not go out in the water
For then surely I will drown

Bughouse Birthday
By Gil
Days before I turned 24,
I told my family doctor
I had a heroin habit
and blinking like a mosquito landed
in his eye, he sent me to Fairfield Hills
State Hospital.

There was no group therapy,
no individual sessions,
no psycho-education,
no 12-step programs.
The attendants communicated
with grunts and hand gestures
behind shatter-proof glass.
When I complained of withdrawal symptoms,
the nurse said junkies
have a low threshold for pain.

A patient who memorized
Edgar Allen Poe
kept me up nights ranting:
Ghastly grin and ancient raven
wandering from the Nightly shore…”
Another, called me paesan’
and said a Mafia hit team
was out gunning for him,
smashing the TV against a wall,
inches above my head.

My roomies boasted
how they played the skull doctors
by faking psychiatric problems
to avoid jail time
fantasizing out loud how much
dope they were going to shoot
the minute they hit the streets.

When I was discharged,
they gave me the phone numbers
to their connections.

Sobered by my hospital stay,
I stuck to wine coolers and reefer

for three months.

It's Not Only in My Head: Physical Health Implications of Mental Illness


It's Not Only in My Head: Physical Health Implications of Mental Illness
By Carl Blumenthal
Where I have been and where I am today
In mid-2006, I fell off a manic cliff into a deep depression—the worst of my life. Through 2010, I couldn't work, socialize (including barely talking to my wife and other family members), pursue any hobbies, any creative or spiritual practice, and my activities of daily living (ADL's) became minimal. My physical health declined too.
Plus, two psychiatric hospitalizations left me over-medicated. I was no longer suicidal. I could sleep. But, my hands shook so badly, I couldn't write nor feed myself without using a big soup spoon. My concentration and memory were poor.
The list of other physical conditions/symptoms included anorexia (105 lbs. for a 5' 7" frame); psoriasis, acne, rashes, skin cancer (2nd stage); tooth decay and broken teeth; elevated cholesterol and blood pressure, chest pains (including what seemed like two mini-heart attacks); hemorrhoids, constipation, diarrhea, bloody stools, gastritis; urinary retention (from an enlarged prostate); deteriorating vision and "floaters" (spots); a disabling ankle/foot injury, arthritis of the knees, and lower back pain.
Granted, I was in my late 50's at the time. But I had always been physically fit, eaten well, taken all my meds (including dietary supplements) and seen my doctors regularly. During the depression, I stayed indoors (even when the weather was nice), took only psych meds, and avoided treatment for my physical ills. I struggled to eat; comfort food was all I could tolerate.
Between 2011 and 2012, my physical health improved as did my mental health, and vice versa. In other words, I'm here to testify: "The mind and the body are connected!"
Unfortunately, this is a lesson the psychiatric and medical professions are still learning. When psychiatrists notice that major, especially chronic depression often "presents with somatic (bodily) features," it doesn't mean the sufferer is just a hypochondriac. I became over-dependent on an air brace for my injured ankle/foot. Otherwise, I "denied" the existence of my other physical symptoms because knowing my body was "falling apart" deepened my depression. Such neglect creates a vicious cycle which most medical doctors don't understand either.
There's a lot of talk about "mental and physical wellness" these days. The new Medicaid Health Homes program is predicated on integrated case management. Peers are even being trained, and in some cases, hired as "wellness coaches" to "encourage" holistic healthy behavior in others with mental illness. But, until clinicians "get the connection" in medical school, consumers face an uphill battle. That's why the personal case for mind-body interactions is so political. We must advocate for changes in medical education while taking responsibility for our own wellness.
So how am I doing with my case?
I've gained 30 pounds because my appetite returned and I now enjoy cooking healthy food for myself (and my wife). My skin has cleared up. I shower more regularly and had a dermatologist remove the cancer. A dentist fixed my teeth with root canals and crowns; I floss and brush more often. I'm back on meds which have reduced the cholesterol and blood pressure to safe levels. Diagnostic tests by my cardiologist showed my heart is still in good condition. And I walk vigorously for half an hour most days.
An endoscopy and two colonoscopies have removed potentially cancerous polyps from my stomach and colon, respectively. The endoscopy also identified the cause of my gastritis as a common bacterium, successfully treated with antibiotics. I now take meds which have improved urination and a sonogram of my kidneys revealed cysts that need monitoring. I got new prescription glasses, reducing eye strain, and the floaters proved to be benign (no retinal detachment). As for the aches in my bones, exercise and better sleeping posture have minimized them.
I take fewer and smaller doses of psych medicine--a combination of two mood stabilizers, an anti-depressant, and synthetic thyroxin for an under-active thyroid, a contributor to depression. Ironically, 25 years of taking lithium caused this hypo-thyroid condition, damaged my kidney function, and gave me a permanent case of the shakes. (Thanks to a vigilant psychiatrist, I stopped using lithium 10 years ago, before it could do further harm.) Even with reduced medication, my hands still tremble, but I only need a teaspoon to eat. My concentration is tip-top. However, when you get to be 61, memory could always be better.
This physical re-birth was possible because my wife's private health insurance covered me. Even so, for a long time I failed to take advantage of it because I didn't think life was worth living (well). If the problem didn't hurt or bleed too much, I ignored it. However, the better I felt emotionally, the more initiative I took looking after my physical health. At first, I would schedule doctors' appointments and cancel them at the last moment, or not follow through on recommended treatments. Next, I showed up regularly and did what the docs told me to do. Finally, lately, I do my own research, make suggestions about what I need, and reach a consensus with the professionals about what to do.
As for my mental health care, I was in day treatment in 2007 and 2008. Since then I've been a weekly outpatient. It took three years to find the right social worker and psychiatrist, and even longer for me to be willing to work with them. A lot of resistance had to wash beneath the dam of denial before that happened. Fortunately, a breakthrough came, at the beginning of 2011, when my social worker (therapist) challenged me to write about a film I admired. "An Angel at My Table" is the autobiography of Janet Frame, who survived eight years in mental hospitals during the 1950's, including 200 electro-convulsive shock treatments, to become one of the best New Zealand writers of the 20th century. I entitled my article "Saved by the Imagination."
During the last year and a half, I've gone back to writing about the arts for a local newspaper. I'm also working as a peer advocate again. I volunteer for a political group and worship regularly. I stay in touch with my family and old friends. I take care of our cats and car. (The computer is my wife's responsibility. We split the other household chores.) These activities are what psychologist/peer Patricia Deegan terms "personal medicine." Mary Ellen Copeland, another consumer turned professional, includes them in her "wellness toolkit." Whatever you call them, they keep me alive and lively. Damned if I'm going to die 25 years prematurely—the average for folks living with mental illness.

Monday, April 1, 2013

Mental Health Film Festival May 5 2013


Sunday May 5, 2013
11:30 am to 5:00 pm
St Francis College, 182 Remsen, Brooklyn, NY

This film festival defeats stigma by bringing together mental health recipients and film buffs from around the New York City region. This year we will showcase films that introduce us to mental health recipients who have excelled in their lives and careers. We will include a film on young adults who have turned their lives around. We will also show a film narrated by Ted “The Golden Voice” Williams. Community Access is in negotiations to have Ted attend the film fest in person.

Tickets for entire day are $7 dollars in advance; $10 at the door and that includes lunch.
Call Carla at 212-780-1400 x7726 or email crabinowitz@communityaccess.org
or