Thank you Mary. I’m encouraged to hear that the program can be effective for long-term chronic situations. This population needs so much attention. And thank you for letting me know about people in Chicago.
Thanks for your excellent article, Mary. My son and I have been following the conversation about Open Dialogue for a while now, and he writes about it on his blog- http://www.walksonthemargins.com. A couple of questions: I know Open Dialogue emphasizes first time psychosis. Is there a place for it in the treatment of those with long term illness and for those who have been on antipsychotics for many years? Do you see options for these folks? Also, is anything happening with Open Dialogue in the Chicago area?
First Duane, We all have such a stake in these discussions, so I understand but thank you for the apology. It means a lot.
I should explain why I haven’t continued to address the NAMI issues. It was a conscious decision. Early on in this conversation, I talked about what I saw happening at NAMI and that I believe things are changing with the new president, bringing Whitaker in etc. I expect that to continue and will work within the organization to push that along and speak out. I think that’s the best thing that those of us who believe in NAMI’s mission can do. I also wrote that NAMI does so much good on the local level. It has helped me tremendously and I’ve seen how it’s helped others. So I figured I’d said what I needed to say and anything more would just add fuel to the flames. Perhaps that was a mistake.
And Duane–Your comments were the impetuous for my request for stories which I’m excited about doing. I mean it when I ask folks to send their stories of trauma to success and accomplishment to me at my website. It might be as simple as waking up clear headed for the first time in years or it might be finishing a degree, or becoming a CEO or volunteering for a good cause. It would make for a wonderful series on my blog. I truly believe that when we tell our stories, people listen, understanding occurs, and judgment falls by the wayside. And then maybe change happens too.
Your right Duane. Wrong place for stories of trauma to triumph. I invite any of you who have stories you’d like to tell to send them to me at my website. I’ll publish some of them on my blog, so proofreading is good đ Please stories only, no issue driven pieces, though certainly talking about your experiences with meds or hospitalizations are fair game. It could make for a very nice series of stories.
I’m confused too Duane. Why is it necessary to focus this discussion need to focus entirely on problems? Why does the rhetoric need to be angry? I think people should be talking about their successes too. My son, who has had plenty of trauma in his life, has written an amazingly honest narrative, that is insightful and poetic, and he touched many people at the signing–which was my point. That’s huge and others who struggle should be able to celebrate that. His success is everyone’s success. We need to hear about those from all of you. What is happening in you’re lives that you’re proud of? I’d like to hear those stories.
Would love to know how you like “Walks on the Margins.” Reliving those years was painful for Max and me and the writing was hard, but in the end rewarding and important for both of us.
I wish I could attend this series and meet Laura. Max and I are completely tied down with book signings. Our discussions with the audience have been quite wonderful. A lot of people are learning from Max.
Yesterday, my son, Max and I had a wonderful book signing for “Walks on the Margins.” Some 60 people were there and yes we did sell a whole bunch of books. But more importantly, those 60 people were moved by our reading and discussion and they wanted to hear from Max. They wanted to understand his journey; they wanted to understand him. They left with a better understanding, having listened to him speak about bipolar disorder with intelligence and wit. They saw the person behind the disorder. They saw how smart, articulate, and creative he is. I couldn’t be happier. It’s why we wanted to write the book–to show the face behind the illness. đ
I’m going to try to answer your questions: I’d have to say that “bipolar” has been a word to use to express my son’s episodes, one that was given to us, yes by the doctor. I don’t know if it’s biological. There’s no proof that brain chemistry is a factor, though that’s what we’ve been told. Do I think he’ll have it forever? I’d love to think he’ll get past it–he’s almost died more than once, in so much danger roaming the streets, missing, homeless, lost to himself, me, his sister.
Do I think his emotional experiences have been different than others? Absolutely different from “mainstream.” I think he’s had experiences that have enriched his life in so many ways–he’s deeply insightful as a result. His experience of the world informs his art and his writing in unique, vivid, and allegorical ways. I have a feeling this is true for you too, Laura.
Aldous Huxley said, âThe man who comes back through the Door in the Wall will never be quite the same as the man who went out. He will be wiser but less sure, happier but less self-satisfied, humbler in acknowledging his ignorance yet better equipped to understand the relationship of words to things, of systematic reasoning to the unfathomable mystery which it tries, forever vainly, to comprehend.â
I understand that and think it applies to my son in some ways.
I’d love to find a way for you and him to connect. Any ideas?
Just to clarify, I’m no longer the president of NAMI-Colorado Springs as my term ended last year, in time for my son and I to finish our book and publish it. That book is a big part of speaking out for my son and others with mental illness and their families. And my son wanted to tell his story so that people can see the face behind mental illness. Once you really SEE someone, it’s a lot harder to judge them. Though we did it in a book, so many are telling their stories in other ways–in posts like these, and by speaking out when they need to. I think we all need to do that in order for change to occur.
I’m speaking to my friends at NAMI about medication. How could I not when I have so many questions? I want them to be asking them too. We’re talking about what I heard at Whitaker’s lecture and I’ve asked to read the blog that I wrote as well as about my op-ed piece here. Like me, they have son’s, daughters, spouses, siblings, and friends who are on antipsychotics and some are on those drugs. They want answers too.
I truly believe we are all in this together. I like the way Laura ends her posts. “With solidarity.”
I can only say that in my community, NAMI has helped hundreds, especially family members who don’t understand what is happening to the person they love and who often blame themselves or their loved one.
I hope we can agree to disagree. When we listen to one another, we learn. Honestly, all I care about at this point in time is my son and I learning enough to make the right decisions.
The marijuana and recreational drug issue is something I’ve asked myself about many times and Max and I both talk about it in the book. He and so many others at his college were certainly smoking pot. Was it a factor? I just don’t know. I do know most who engage in that don’t develop bipolar disorder, but then perhaps it’s a trigger if you’re already genetically disposed or whatever. Too many questions, not enough answers.
Thanks Mad Mom. What an amazingly poignant post. Your commitment to and understanding of you daughter is just beyond words. I’m grateful and learning so much!
I think my reply went thru before I finished. Anyway, most of my understanding about bipolar disorder comes from my experience with my son. Though of course I did a lot of reading after he was diagnosed, books written by doctors, families, those with mental illness, etc. Max was diagnosed with Bipolar I. It came on suddenly when he was 20 and a junior in college. I began to realize something was off when his phone calls home didn’t sound like my son. Of course, mental illness was not something I ever even considered. He was picked up by the police near his dorm, walking down the middle of the street barefoot and taken to the hospital. Nothing I say here is breaching my son’s privacy. He and I write about it all in our memoir, which just came out. He describes that first episode in vivid and in fact, very poetic language.
So that was the beginning, followed by future episodes every year with extreme psychosis and hospitalization. Between the first and second episode he went off the Depacote he was prescribed, I think he stopped pretty early on–next episode a year and a half later. Finally prescribed lithium, a mainstay for him for many years. Antipsychotics while he was psychotics, eventually going off either with the doctor’s okay or sometimes just on his own. His last episode was pretty bad with horrible suicidal depression that lasted a year. I am amazed at his fortitude in getting through it. Finally a new doctor prescribed seroquel, lamictol, and lithium and he slowly came out of his depression. He’s tapered himself off the Seroquel and since hearing Whitaker’s talk, is going to talk with his doctor about getting off the lamictol. He feels he needs the lithium. So that’s the long and short of it, with lots left out in between about all the trauma. I have to say I have a huge amount of respect for my son. He is amazingly strong and I just don’t know how’s he’s managed to get through the rough days. I’m pleased to say he is doing very well now.
Hi Copy Cat, Thanks for the link. Your comments about the parallels between alcohol use and antipsychotic use are extremely interesting. I’m glad that you and your mom are okay. You put it well–” A doctor said her son was sick and needed medicine.” And we’ve been trained to follow his/her advice. I these days we are more likely to ask for second opinions and look for alternatives, but that wasn’t true 10-20 years ago.
I’ve wondered about a better term than “antipsychotic” as well. I’ve thought about psychotropic but that doesn’t seem quite appropriate as it refers to a much wider range of medication in which antipsychotics are one as well as antidepressants, mood stablizers, anti-anxiety, etc. So what other term can be used for antipsychotic? This leads me to a very basic but important question: Just what are we talking about when we talk about antipsychotics? What drugs are included in the category?
I’d like a clear answer from someone who knows. And which have been the subjects of the studies?
Wow Peter, thanks for all the recommended resources. I’ve been hearing a lot about Open Dialogue and want to know more. My reading list just got a lot longer!
Thanks for your wonderful comments and for your support too. I know you’re right to say that those with mental illness know a lot about their illnesses that doctors and others don’t. Certainly about how they feel on medication. I learned a lot about how my son feels about his illness as we wrote our book together, how he valued some of his experiences, how he wouldn’t have given them up, how in some ways the illness has enriched him. But of course, I don’t want him to go through another episode ever again and I tell him he’s had enough experiences for a lifetime! I think he agrees! He will be talking with his doctor about his medication and hopefully will work closely with her on any changes.
I applaud NAMI for asking Whitaker to speak, and I think that it shows willingness to give voice to the issues. I understand the concern about NAMIâs stand on issues, but I know a different NAMI. Iâve been volunteering for ten year at the NAMI in Colorado Springs, which was founded in 1983 by parents who were looking for support and help for their kids. Parents founded the national organization a few years earlier. When I walk into my local NAMI office, I find people just like me and my son. We offer peer and family support groups and classes, a help line, and the support that can be hard if not impossible to find elsewhere. I guess what Iâm trying to say is that I know NAMI up close and personal. I donât think of her as a giant trying to force its will on others.
Iâve met the people on the national board, who are reasonable and responsible people, some parents like me. Last year, Keris Jan Myrick, who has a mental illness herself, was elected by the board as president of the NAMI. She has been successfully living with her illness for many years in her own way and has been a blogger on Mad in America. I believe her election was a turning point for NAMI and shows an understanding that the organization needs to reevaluate its stance on some of the issues and begin to ask the hard questions. I sometimes think that NAMI has been a lot like me, who has believed that medication was critical for my sonâs recovery.
And as Iâve said in my article, Iâm still not sure they arenât. I donât know what the truth is about antipsychotics or what their best use is or if there is any good use. I want to find the answers. I want to have open, honest, and ethical discussions, free of politics, recriminations, or fear. I want NAMI to support further research. I expect this to happen. I admire all of you who have joined the conversation, and all who are looking more closely at the research and outcomes, and yes I admire NAMI for bringing the issue of antipsychotics to its members when they asked Whitaker to speak. I know it will take time. We have so little understanding of the brain or how to best address mental illness. And most of us donât have that time. For now we need to make the best choices we can for ourselves and take charge of our treatment. Thatâs what my son and I are trying to do. And boy itâs hard when thereâs so much contradictory information out there and when the stakes are so high.
I wrote a blog after I attend Robert Whitaker’s lecture at the NAMI Conference last week about the use of antipsychotics. My son, who has bipolar disorder, and I were part of a packed audience. So many of those in the audience with mental illness and those who love them were confused about what we were hearing and so afraid that we had put our trust in the wrong hands. Read about at: http://kathybrandtauthor.com/mental-health/the-case-against-excessive-use-of-antipsychotics
Thank you Mary. I’m encouraged to hear that the program can be effective for long-term chronic situations. This population needs so much attention. And thank you for letting me know about people in Chicago.
Every best wish,
Kathy Brandt
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Thanks for your excellent article, Mary. My son and I have been following the conversation about Open Dialogue for a while now, and he writes about it on his blog- http://www.walksonthemargins.com. A couple of questions: I know Open Dialogue emphasizes first time psychosis. Is there a place for it in the treatment of those with long term illness and for those who have been on antipsychotics for many years? Do you see options for these folks? Also, is anything happening with Open Dialogue in the Chicago area?
Thank you for the work you’re doing!
Kathy Brandt
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First Duane, We all have such a stake in these discussions, so I understand but thank you for the apology. It means a lot.
I should explain why I haven’t continued to address the NAMI issues. It was a conscious decision. Early on in this conversation, I talked about what I saw happening at NAMI and that I believe things are changing with the new president, bringing Whitaker in etc. I expect that to continue and will work within the organization to push that along and speak out. I think that’s the best thing that those of us who believe in NAMI’s mission can do. I also wrote that NAMI does so much good on the local level. It has helped me tremendously and I’ve seen how it’s helped others. So I figured I’d said what I needed to say and anything more would just add fuel to the flames. Perhaps that was a mistake.
And Duane–Your comments were the impetuous for my request for stories which I’m excited about doing. I mean it when I ask folks to send their stories of trauma to success and accomplishment to me at my website. It might be as simple as waking up clear headed for the first time in years or it might be finishing a degree, or becoming a CEO or volunteering for a good cause. It would make for a wonderful series on my blog. I truly believe that when we tell our stories, people listen, understanding occurs, and judgment falls by the wayside. And then maybe change happens too.
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Your right Duane. Wrong place for stories of trauma to triumph. I invite any of you who have stories you’d like to tell to send them to me at my website. I’ll publish some of them on my blog, so proofreading is good đ Please stories only, no issue driven pieces, though certainly talking about your experiences with meds or hospitalizations are fair game. It could make for a very nice series of stories.
http://www.KathyBrandtAuthor.com
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I’m confused too Duane. Why is it necessary to focus this discussion need to focus entirely on problems? Why does the rhetoric need to be angry? I think people should be talking about their successes too. My son, who has had plenty of trauma in his life, has written an amazingly honest narrative, that is insightful and poetic, and he touched many people at the signing–which was my point. That’s huge and others who struggle should be able to celebrate that. His success is everyone’s success. We need to hear about those from all of you. What is happening in you’re lives that you’re proud of? I’d like to hear those stories.
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Would love to know how you like “Walks on the Margins.” Reliving those years was painful for Max and me and the writing was hard, but in the end rewarding and important for both of us.
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I wish I could attend this series and meet Laura. Max and I are completely tied down with book signings. Our discussions with the audience have been quite wonderful. A lot of people are learning from Max.
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Thanks Jennifer. I’ve always felt that my son and I are in this together. It’s not just his disorder–it belongs to the whole family.
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Max is 34 and just got married. He is so happy and smiling more than he ever has đ He was diagnosed when he was 20 and a junior in college.
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Yesterday, my son, Max and I had a wonderful book signing for “Walks on the Margins.” Some 60 people were there and yes we did sell a whole bunch of books. But more importantly, those 60 people were moved by our reading and discussion and they wanted to hear from Max. They wanted to understand his journey; they wanted to understand him. They left with a better understanding, having listened to him speak about bipolar disorder with intelligence and wit. They saw the person behind the disorder. They saw how smart, articulate, and creative he is. I couldn’t be happier. It’s why we wanted to write the book–to show the face behind the illness. đ
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Pete Earley wrote a good blog about the Changing Face of NAMI at http://www.peteearley.com/2013/03/18/the-changing-face-of-nami/
Hope folks will take a look.
Kathy
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Hi Laura,
I’m going to try to answer your questions: I’d have to say that “bipolar” has been a word to use to express my son’s episodes, one that was given to us, yes by the doctor. I don’t know if it’s biological. There’s no proof that brain chemistry is a factor, though that’s what we’ve been told. Do I think he’ll have it forever? I’d love to think he’ll get past it–he’s almost died more than once, in so much danger roaming the streets, missing, homeless, lost to himself, me, his sister.
Do I think his emotional experiences have been different than others? Absolutely different from “mainstream.” I think he’s had experiences that have enriched his life in so many ways–he’s deeply insightful as a result. His experience of the world informs his art and his writing in unique, vivid, and allegorical ways. I have a feeling this is true for you too, Laura.
Aldous Huxley said, âThe man who comes back through the Door in the Wall will never be quite the same as the man who went out. He will be wiser but less sure, happier but less self-satisfied, humbler in acknowledging his ignorance yet better equipped to understand the relationship of words to things, of systematic reasoning to the unfathomable mystery which it tries, forever vainly, to comprehend.â
I understand that and think it applies to my son in some ways.
I’d love to find a way for you and him to connect. Any ideas?
Warm regards,
Kathy
I
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Kathy here (alias Karen?)
Just to clarify, I’m no longer the president of NAMI-Colorado Springs as my term ended last year, in time for my son and I to finish our book and publish it. That book is a big part of speaking out for my son and others with mental illness and their families. And my son wanted to tell his story so that people can see the face behind mental illness. Once you really SEE someone, it’s a lot harder to judge them. Though we did it in a book, so many are telling their stories in other ways–in posts like these, and by speaking out when they need to. I think we all need to do that in order for change to occur.
I’m speaking to my friends at NAMI about medication. How could I not when I have so many questions? I want them to be asking them too. We’re talking about what I heard at Whitaker’s lecture and I’ve asked to read the blog that I wrote as well as about my op-ed piece here. Like me, they have son’s, daughters, spouses, siblings, and friends who are on antipsychotics and some are on those drugs. They want answers too.
I truly believe we are all in this together. I like the way Laura ends her posts. “With solidarity.”
Kathy
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I can only say that in my community, NAMI has helped hundreds, especially family members who don’t understand what is happening to the person they love and who often blame themselves or their loved one.
I hope we can agree to disagree. When we listen to one another, we learn. Honestly, all I care about at this point in time is my son and I learning enough to make the right decisions.
All the best,
Kathy
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Hi Donna,
The marijuana and recreational drug issue is something I’ve asked myself about many times and Max and I both talk about it in the book. He and so many others at his college were certainly smoking pot. Was it a factor? I just don’t know. I do know most who engage in that don’t develop bipolar disorder, but then perhaps it’s a trigger if you’re already genetically disposed or whatever. Too many questions, not enough answers.
Kathy
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Thanks Mad Mom. What an amazingly poignant post. Your commitment to and understanding of you daughter is just beyond words. I’m grateful and learning so much!
Kathy
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Hi Laura,
I think my reply went thru before I finished. Anyway, most of my understanding about bipolar disorder comes from my experience with my son. Though of course I did a lot of reading after he was diagnosed, books written by doctors, families, those with mental illness, etc. Max was diagnosed with Bipolar I. It came on suddenly when he was 20 and a junior in college. I began to realize something was off when his phone calls home didn’t sound like my son. Of course, mental illness was not something I ever even considered. He was picked up by the police near his dorm, walking down the middle of the street barefoot and taken to the hospital. Nothing I say here is breaching my son’s privacy. He and I write about it all in our memoir, which just came out. He describes that first episode in vivid and in fact, very poetic language.
So that was the beginning, followed by future episodes every year with extreme psychosis and hospitalization. Between the first and second episode he went off the Depacote he was prescribed, I think he stopped pretty early on–next episode a year and a half later. Finally prescribed lithium, a mainstay for him for many years. Antipsychotics while he was psychotics, eventually going off either with the doctor’s okay or sometimes just on his own. His last episode was pretty bad with horrible suicidal depression that lasted a year. I am amazed at his fortitude in getting through it. Finally a new doctor prescribed seroquel, lamictol, and lithium and he slowly came out of his depression. He’s tapered himself off the Seroquel and since hearing Whitaker’s talk, is going to talk with his doctor about getting off the lamictol. He feels he needs the lithium. So that’s the long and short of it, with lots left out in between about all the trauma. I have to say I have a huge amount of respect for my son. He is amazingly strong and I just don’t know how’s he’s managed to get through the rough days. I’m pleased to say he is doing very well now.
I’d love to hear more from you Laura.
Warm regards,
Kathy
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Hi Copy Cat, Thanks for the link. Your comments about the parallels between alcohol use and antipsychotic use are extremely interesting. I’m glad that you and your mom are okay. You put it well–” A doctor said her son was sick and needed medicine.” And we’ve been trained to follow his/her advice. I these days we are more likely to ask for second opinions and look for alternatives, but that wasn’t true 10-20 years ago.
Report comment
Hi Morias,
I’ve wondered about a better term than “antipsychotic” as well. I’ve thought about psychotropic but that doesn’t seem quite appropriate as it refers to a much wider range of medication in which antipsychotics are one as well as antidepressants, mood stablizers, anti-anxiety, etc. So what other term can be used for antipsychotic? This leads me to a very basic but important question: Just what are we talking about when we talk about antipsychotics? What drugs are included in the category?
I’d like a clear answer from someone who knows. And which have been the subjects of the studies?
Kathy
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Wow Peter, thanks for all the recommended resources. I’ve been hearing a lot about Open Dialogue and want to know more. My reading list just got a lot longer!
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Thank you, Duane, for your kindness and good thoughts. Kathy
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Thanks for your wonderful comments and for your support too. I know you’re right to say that those with mental illness know a lot about their illnesses that doctors and others don’t. Certainly about how they feel on medication. I learned a lot about how my son feels about his illness as we wrote our book together, how he valued some of his experiences, how he wouldn’t have given them up, how in some ways the illness has enriched him. But of course, I don’t want him to go through another episode ever again and I tell him he’s had enough experiences for a lifetime! I think he agrees! He will be talking with his doctor about his medication and hopefully will work closely with her on any changes.
Report comment
I applaud NAMI for asking Whitaker to speak, and I think that it shows willingness to give voice to the issues. I understand the concern about NAMIâs stand on issues, but I know a different NAMI. Iâve been volunteering for ten year at the NAMI in Colorado Springs, which was founded in 1983 by parents who were looking for support and help for their kids. Parents founded the national organization a few years earlier. When I walk into my local NAMI office, I find people just like me and my son. We offer peer and family support groups and classes, a help line, and the support that can be hard if not impossible to find elsewhere. I guess what Iâm trying to say is that I know NAMI up close and personal. I donât think of her as a giant trying to force its will on others.
Iâve met the people on the national board, who are reasonable and responsible people, some parents like me. Last year, Keris Jan Myrick, who has a mental illness herself, was elected by the board as president of the NAMI. She has been successfully living with her illness for many years in her own way and has been a blogger on Mad in America. I believe her election was a turning point for NAMI and shows an understanding that the organization needs to reevaluate its stance on some of the issues and begin to ask the hard questions. I sometimes think that NAMI has been a lot like me, who has believed that medication was critical for my sonâs recovery.
And as Iâve said in my article, Iâm still not sure they arenât. I donât know what the truth is about antipsychotics or what their best use is or if there is any good use. I want to find the answers. I want to have open, honest, and ethical discussions, free of politics, recriminations, or fear. I want NAMI to support further research. I expect this to happen. I admire all of you who have joined the conversation, and all who are looking more closely at the research and outcomes, and yes I admire NAMI for bringing the issue of antipsychotics to its members when they asked Whitaker to speak. I know it will take time. We have so little understanding of the brain or how to best address mental illness. And most of us donât have that time. For now we need to make the best choices we can for ourselves and take charge of our treatment. Thatâs what my son and I are trying to do. And boy itâs hard when thereâs so much contradictory information out there and when the stakes are so high.
Kathy
Report comment
I wrote a blog after I attend Robert Whitaker’s lecture at the NAMI Conference last week about the use of antipsychotics. My son, who has bipolar disorder, and I were part of a packed audience. So many of those in the audience with mental illness and those who love them were confused about what we were hearing and so afraid that we had put our trust in the wrong hands. Read about at: http://kathybrandtauthor.com/mental-health/the-case-against-excessive-use-of-antipsychotics
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