Douglas Lowell, Find A Cure Panel
I’m here with Kartar Diamond, a schizophrenia advocate. Thanks for joining Conversations, Kartar.
Kartar Diamond, schizophrenia advocate and author
Thank you.
Douglas Lowell, Find A Cure Panel
I want to start by defining Schizophrenia. Everyone has heard of it but I think a lot of people don’t really know what it means. Or get it confused with multiple personality disorder.
Kartar Diamond, schizophrenia advocate and author
Yes, there has been confusion over the decades. I believe this is because the word schizophrenia implies some “split” or departure from reality (psychosis) and so some people have assumed schizophrenia is synonymous with multiple personality disorder, which is not the case.
Douglas Lowell, Find A Cure Panel
No. It’s not. Back in the day, people thought Sybil (the book and the movie) were schizophrenia. How would you define it?
Kartar Diamond, schizophrenia advocate and author
In psychiatric realms there are some clear markers for schizophrenia, with a division of both positive and negative symptoms. And those symptoms have to be enduring for a number of months before the diagnosis can be made. The positive symptoms do include the person having hallucinations and the other signs of psychosis. The negative symptoms can include lack of feelings, empathy, motivation to do anything, not even what we call the “ADL’s” which stands for Activities of Daily Living. This includes self-care like showering and changing clothes.
Douglas Lowell, Find A Cure Panel
Well articulated. Thank you, Kartar. Schizophrenia tends to be diagnosed young. How old was your son when he was dxd? What symptoms did he manifest? How long/how was he diagnosed?
Kartar Diamond, schizophrenia advocate and author
Yes, and I wanted to add that the initial presentation, such as with my son, can be confusing to loved ones. There can be an overlap between other mental illnesses or disorders which make the diagnosis sometimes challenging. Some of the symptoms of schizophrenia are identical to bipolar disorder or major depression. And with my son, we honestly thought his delusions and erratic behavior had to be from taking street drugs. We did not assume initially that he had an emerging mental illness, certainly not schizophrenia. It all started coming out when he was 15 years old. His initial diagnoses from more than one doctor ranged from “social anxiety” to bipolar disorder with psychotic features,” to “schizo-affective disorder,” which means schizophrenia with a mood disorder.
Douglas Lowell, Find A Cure Panel
How long did it take for him to get dxd? And what doctor(s) were able to give you something conclusive? This is so important b/c people cannot get appropriate treatment without proper diagnosis. This is true for physical and mental conditions.
Kartar Diamond, schizophrenia advocate and author
We had a long, tortuous journey in the discovery phase of what the actual diagnosis was and the only comfort in not knowing is that the medications for bipolar disorder are sometimes the same for schizophrenia. Within months we had the schizophrenia diagnosis, then it went back to bipolar and when we admitted our son to a special out-of-state school for treatment, they didn’t even think he had a mental illness! This is part of my memoir in how we were jerked around (pardon my French). We had to bring my son back to Los Angeles to be seen by a specialist in adolescent schizophrenia in order to be sure what the diagnosis was. But even years later with one memorable hospitalization, the social worker who did the intake exam wondered if my son was mentally ill or if he was just on drugs. Weeks later, a prominent psychiatrist was hired by the hospital to do extensive testing and she re-confirmed the seriousness of my son’s illness and even recommended he be in a locked facility for some time. That recommendation was not acted on for more than a year when homelessness became part of our experiences. So from age 15 to 17 we didn’t have a proper diagnosis. And then at age 24 it was questioned again. And at 25 years of age it was more firmly confirmed and no one has doubted it since. He’s 32 now.
Douglas Lowell, Find A Cure Panel
Clearly an arduous journey of almost 10 years which is very scary. When you son was finally dxd conclusively, what treatments protocol has he been on? What was successful? Not successful? This is so important b/c Schizophrenia is not easy to treat. What works for one person doesn’t work for another. And med compliance is also very challenging.
Kartar Diamond, schizophrenia advocate and author
Almost all of our experiences were in Los Angeles County. We encountered some very caring professionals, but it was also mixed up with some very uncaring, even cruel and incompetent people who should not be working in the mental healthcare industry. Each case is unique. On the one hand, it appears my son really did need to be in a psychiatric hospital (locked, involuntary) for 2 years. But then again, if he had gotten competent care in the beginning, none of that might have been necessary.
I would say in the medication realm that it took 10 years of a dozen different anti-psychotics not working well before we got him to agree to take Clozapine. Clozapine is the best medication, but a small percentage of people cannot tolerate it. Instead of making it the last resort (for insurance purposes), it should be the first resort for many. In the area of genuine therapeutic treatment, I can say for sure that my son got WORSE living in the CA state licensed Board and Care system. He lived at, and was evicted from, 12 different facilities. They are better than homelessness, but not much better. In fact, he was introduced to a lot of drugs and deviant behaviors by living in Board and Cares. There are very few private residential programs, long term, that are affordable to most and very few in existence, period. But private care with true professionals and in a loving environment is what has created stability in my son’s life. I see him frequently and live close by, but our situation was one where he really could not live successfully at home with either parent.
Douglas Lowell, Find A Cure Panel
That is an important segue, Kartar. I know you are a powerful advocate for independent living. Can you expound on what that means for someone with schizophrenia and what programs/facilities you are involved in.
Kartar Diamond, schizophrenia advocate and author
A person with schizophrenia could very easily feel alienated and isolated (and paranoid), so when I think about how we sent our 15 year old to an out-of-state residential school, I am embarrassed beyond belief in retrospect. That said, we were following the recommendations of professional social workers. So, I don’t recommend these programs where the child or teenager is away from their family, except in perhaps some special circumstances. There is also a high relapse rate from being at those programs. Of course, I would want to see anyone with a serious mental illness live independently if they truly can, safely and successfully. But there is also quite a range in the schizophrenia spectrum. Some people can go to college or work and live independently while others absolutely cannot. And many cannot take their medications without assistance. So, aside from getting a proper diagnosis, family members or caretakers need to also assess and periodically re-evaluated the person’s functionality. Even now, as I am my son’s Conservator, the judge who renews his conservatorship yearly will always advocate that the person live in the “least restrictive” environment possible. Additionally, there is a powerful group of high-functioning people with schizophrenia who believe that no one should be held involuntarily, short term or long term. They are actually discriminating against their lower-functioning peers. Sometimes, involuntary treatment is needed to literally save the person’s life. So, after a decade of my son not getting quality therapy, or the right medication, or the appropriate living environment, he is now getting the best of all three and I know that is what has made the biggest difference in his stability.
Douglas Lowell, Find A Cure Panel
Do you want to shout out the name of the independent living group that he has found success with, Kartar?
Kartar Diamond, schizophrenia advocate and author
Sure, the John Henry Foundation in Santa Ana California is one shining example of a truly therapeutic long term residential program. They have about 40 residents and not too many vacancies because people love living there and they also keep people stable with their program. They do field questions and inquiries from people all over the country as many who know about them would like to model their programs and efforts after the John Henry Foundation.
https://www.johnhenry.org/
Douglas Lowell, Find A Cure Panel
Please share your website so people have that. Kartar, I want to conclude by talking about your memoir. How long were you working on it? Can you recap the journey and finally where people can purchase it.
Kartar Diamond, schizophrenia advocate and author
https://www.noahsschizophrenia.com I wanted to write the memoir about my reaction to my son’s mental illness for a long time. Honestly, the COVID lock down in 2020 gave me the impetus and time to finish it. I worked on the book for a few months and since I’m a professional writer, it all came pretty easily for me. Some people have wondered if it was hard to re-live those experiences by writing about it, but it was actually very therapeutic and I knew it would help other families struggling with the same issues. The memoir is available on Amazon.
Douglas Lowell, Find A Cure Panel
Thanks so much and people can purchase it right from the site above?
Douglas Lowell, Find A Cure Panel
Kartar, thanks for talking to Conversations today. Continued prayers to you and your son.
