UPDATE: HAPPENING NOW - HIPAA IS KILLING OUR LOVED ONES by Linda Olivia

As you know, my daughter, Heather, was a missing person out of New York State. She'd stolen my car and my purse and was found in Ohio. Now she's at Strong Hospital (Northcoast Behavioral Healthcare).

I've been in Ohio and it's been nothing but a nightmare. The doctors haven't spoken to me so I can give informatIon to help in my daughter's care. I know about the HIPAA law (Health Insurance Portability and Accountability Act) and I'm not asking them to tell me anything. I've been put off and put off in trying to talk to anyone.

On Thursday, the hospital promised me a call and a meeting at one o'clock. Nobody called. I went there again yesterday and still no one would speak to me face to face.  When I told them I was going to call the judicial committee, they came down to talk to me. They accused me of threatening them and were very hostile. Finally, they've  agreed to meet with me today at 2:00 p.m. 

I'm praying things go all right but I'm afraid that they won't from the way I've been treated. I've called New York State to try to get Heather back into the AOT (Assisted OutPatient Treatment) program and they've not returned my call. I'm praying that someone can help me. I've talked to advocates in Ohio but nothing there either.

Please.  I am desperate.

Photo Credit: Onandaga County Sheriff's Office
Heather Olivia

HAPPENING NOW: HIPAA IS KILLING OUR LOVED ONES by Linda Olivia

After taking my car, my missing daughter was found in Ohio at a gas station. According to the authorities, she was in the middle of the road, disoriented, and extremely hostile.

Heather was taken to Trumbull Memorial Hospital where she was held from 11:00 pm on 11/08/2016 until yesterday, 11/10/16, at 10:00 pm. Then she was transferred to Strong Hospital (Northcoast Behavioral Healthcare) because she is an out-of-state resident and this is required by law. I was instructed that I wouldn't be able to talk to anyone regarding my daughter's care or even visit her due to HIPAA (Health Insurance Portability and Accountability Act).

I called the hospital to find out when Heather would be seen by a psychologist. I was told I couldn't get information about her medical care until my daughter signs a release. I was also told I couldn't relate anything about her previous mental health history. Is there anyone out there who knows Ohio's mental health laws and how I would be able to bring my daughter back to New York State (near me) where I can try to get her the help she so truly deserves.

This HIPAA law across our nation is killing our loved ones and our families.  We're the only hope in getting the seriously mentally ill the help they've deserved for so long.

Please help me in my efforts on this serious matter of our broken mental health system.

Photo Credit: Onandaga County Sheriff's Office
Heather Olivia

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Good Morning! So nice to see you!

Hope you have a good weekend everybody!

MY BRAIN IS ON FIRE by Lynne Warberg

Since my son's birth, I lovingly photographed him every day to create family memories.  Looking back, these images have become an extensive archive representing a mother and son's unique view of over 15 years of heartbreak, hope, sadness and terror and reveal how a family deals with their child's rapid cycling mood episodes. By sharing my story I hope parents who may be experiencing similar incidents, can detect the symptoms and get help, so that an early diagnosis can be achieved. 

"My Brain is on Fire" is a fifteen year personal project about my son, who was diagnosed with Pediatric Bipolar Disorder or Juvenile Onset Bipolar Disorder, a form of bipolar disorder that occurs in children. Although, he exhibited symptoms at a very young age, he was not properly diagnosed until the age of eleven. My son showed symptoms of extreme behavior and mood changes for many years prior to being diagnosed. As a parent I sought every possible cause; parenting, nutrition, seizures, vision problems? Consistently I was told by almost every mental health practitioner, "We know very little about the brain," and no one was willing or able to diagnose him sooner because childhood mental illness is a very controversial issue.

The controversy lies in the "official" diagnosis and how a child psychiatrist interprets the child's symptoms and behaviors. Even though, my son developed rages lasting over an hour within any given day, and at the young age of 5 told us that he wanted to die, he was diagnosed with ADHD, Oppositional Defiant Disorder and agitated depression. These are the disorders listed for children in the DSM and doctors prescribe adult psychiatric medication according to the diagnosis. My son's first psychiatric medication was an antidepressant. His mania worsened. Next amphetamines were prescribed. I refused. His brain was on fire. Six years was spent in this vicious circle of try another drug with severe side effects never tested on children to see if it works. When he was finally diagnosed with Pediatric Bipolar Disorder by a psychiatrist we trusted he followed a treatment plan; medication and therapy, and was mainstreamed back into classes with "normal" kids. His life opened up for him, school was easier, he made friends, we had hope.

My son lost his childhood to mental illness. Now Sam is 25 and two years ago was also diagnosed with schizophrenia. He lives at home with me. My heart aches for all of us dealing with severe brain disease and especially for those who have lost their child. 

To read more of Lynne's and Sam's story and to see her photos.
Go to http://visura.co/user/vitabrevisphoto/view/she-needs-to-beat-that-child

Photo Credit: Lynne Warberg

FIND ANY REASON by Deborah Fabos

Sometimes it can be difficult to remember that our loved ones suffer with a chronic illness. The symptoms can ebb and flow of their own accord often bringing irritability and what seems to be a harshness toward those who love them.

Living with a chronic illness myself, I can attest to the great difficulty of the most simple of tasks that normally pose no challenge at all.

The stress of the symptoms - economic hardships, isolation, and strained personal relationships -exacerbate the suffering for everyone. Staying mindful of our loved ones suffering along with attempting to maintain a healthy balance for all can be exhausting.

Try to be kind. Try to encourage. Find any reason to let them know that they are loved.

Help them find a reason to maintain the struggle.

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Photo Credit: Marisa Farnsworth

Hope you have a good weekend everybody!

HOPE IS CRITICAL - by Craig Willers

My name is Craig and I'm 53 years old. I was diagnosed with paranoid schizophrenia at 18 and later other illnesses. So, 35 years down the road, and miraculously, I'm still here.

My journey's unique and starts in my early years. I worked from the age of 17 and haven't stopped yet. I rarely call in sick for my mental illnesses except for my hospitalization at 23 (a month and a half). My hospitalization was a critical turning point in my life as I discovered (slowly) that I did feel a difference on my meds and counseling was breaking through my psychotic shell. I learned the voices aren't real and that the medications can bring my psychosis way down. I'm still sick but hope to go into remission someday.

I'm married and we'll celebrate our 25th year next August. My wife's been crucial in my support system and just happens to be a nurse (Hospice). I plan to retire from my grocery store job in early 2018 (32 years) and go into Peer Counseling if possible. I want to reach back and show others there is hope out there.

Meds and counseling definitely help but my spiritual path (Christianity) has also been a huge motivator in my life. I believe hope is critical as my life has lead me through some truly dark places and I'm still here. If you're reading this, there is hope! I don't believe I'm a special case, just unorthodox in my approach to living with mental illness.

Wishing you all the best and Aloha.

Photo Credit: Craig Willers
Craig as DJ at his most recent gig.

NO RESPITE by Gloria Hill

My son's been struggling with schizophrenia since he was a junior in high school and he will be 43 in November. We've suffered along with him and so has his older brother. In my experience, neither the public nor the professionals are aware of the family's suffering and struggling. It's unbelievably horrible for all of us, and there is no respite from it no matter where you go or what you do. It's always on your mind.

Most days, my son's aware he has delusions or at least checks in with me about what he perceives as delusions. The medication combination and dose are the best possible for him and he willingly takes them because he understands what might happen if he stopped them as he has experimented with stopping and checking them.

I credit a very good psychiatrist who practices in Sacramento, California with getting him on the correct meds. The best one for him, which has enabled him to go to college, is clozapine. It's probably the only miracle for many people who don't respond to other meds but it has no injectable form and works more effectively over a period of years not days or weeks. (Always check with your mental health care professional about appropriate medications.)

My son attends a mostly peer support group which I sometimes facilitate, and he has very good ideas for others in the group.

Finding a good residential treatment program is almost impossible and not affordable for many families. That's something families need assistance with when they have a disabled adult relative. No one mentions this and it's a primary reason many people with serious mental illness don't do well in the community because of lack of good supervision and support.

Photo Credit: Gloria Hill
Bret loves to fish.

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Photo Credit: Marisa Farnsworth

Scary House!
Hope you have a good weekend and safe Halloween everybody!

LOSING FARRON by Mary Barksdale

My son was diagnosed with paranoid schizophrenia at the age of 24. Over the next few years, he went on and off his meds and in and out of treatment. On January 2, 2004, he called 911 and asked for the FBI. The dispatcher told him she could not send the FBI but she would send police officers. He called back and requested that police should not come because he would not know the real ones from the fakes. When two officers pulled into my driveway, he killed them with an assault rifle through my front window.

My son spent the next 14 months in the drunk tank of a jail built in early 1960's in semi-solitary. When a new jail was built in 2005, he was placed in a cell block with other inmates. He had been on meds and the new jail gave him a safe place. He was taken on two day trips to our state hospital for examination by a psychiatrist. His family was also interviewed by this doctor and his diagnosis was paranoid schizophrenia. Same diagnosis as at least three other phychiatrists and multiple other mental health professionals.

He was sent back to this hospital for three months to determine if he was competent to stand trial. The original doctor from this hospital that was assigned to his case was taken off and a new one was assigned. He was sent back to jail with a diagnosis of Psychotic Not Otherwise Specified and was taken off his meds. Back in jail and off his meds, he went downhill. The DA offered him a plea bargain for life without possibility of parole (LWOP) and he accepted. 

Days after my son arrived at prison, I heard on the local news that he was in ICU because he had been beaten by guards. When I got to Montgomery to see him, he was comotose, on life support, footcuffed to the bed and was being watched by two prison guards. He'd been beaten, but that was not the reason he was on life support. Prison staff recognized his serious mental illness (SMI) and gave him psychotropic drugs with heat warnings. Then they put him in a cell with no air circulation when temps outside were 108 degrees. He died from neuroleptic malignant syndrome .

Neuroleptic malignant syndrome (NMS) is a life threatening neurological disorder caused by an adverse reaction to neuroleptic or antipsychotic drugs. When these drugs are given and the person is in heat conditions, the chances of NMS increase.

We won an open records law suit that forced the Department of Corrections (DOC) to release their records on my son's death and made Alabama government more accountable. We also won a wrongful death lawsuit against the DOC.

Photo Credit: Mary Barksdale
Will, Farron and Phillip Barksdale