This is a survey by NAMI about experiences with ER mental health services. I believe the survey is for both people with mental illness and friends/family who have experienced the ER mental health situation. Please take the survey to help improve ER mental health treatment. I hope by taking this survey ERs will listen to how to improve things!
Hey Everybody! I just wanted to let you know that I had a blog story published over at HealthyPlace.com. Here is the link: http://www.healthyplace.com/blogs/yourmentalhealth/2013/10/30/is-not-disclosing-mental-illness-perpetuating-stigma/ . I hope you read the article and can participate in the conversation. I’m really interested to hear what people think! Thanks! :)
I am standing up as a person living with schizophrenia. Will you stand up with me?
Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?
The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.
Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.
Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.
In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.
Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!
I have some great news! I was able to ask Dr. Steven G. Potkin, Professor of Psychiatry in the Department of Psychiatry and Human Behavior at the University of California, Irvine (UCI) Medical Center, some questions regarding the negative symptoms of schizophrenia. He is also the Robert R. Sprague Endowed Chair in Brain Imaging. It was a brief, by email interview, but I’m happy to share what I’ve learned with you all! The following is the Q&A:
Kristin: What are negative symptoms?
Dr. Potkin: “Negative” does not refer to a person’s attitude, but instead to a lack of characteristics that should be present. Symptoms include reduced amount and content of speech, even when encouraged to interact (alogia), lack of emotional and facial expression (affective flattening), diminished ability to begin and sustain activities (avolition), decreased ability to find pleasure in everyday life (anhedonia) and social withdrawal (asociality).  
Negative symptoms can appear a few years before other symptoms appear in young adulthood in the so-called “prodromal” stage of the illness. Unfortunately these symptoms often go undetected because they manifest themselves as issues common among teenagers: social withdrawal, problems with school work, irritability, depression and sleeping problems.
Kristin: Do all people with schizophrenia have negative symptoms?
Dr. Potkin: No, but at any point in time, negative symptoms can affect approximately 50 percent or more of people with schizophrenia. 
Kristin: How do negative symptoms affect a person with schizophrenia? How do they affect their family and friends?
Dr. Potkin: Research suggests that for people living with schizophrenia, negative symptoms are key factors in poor quality of life as well as problems with personal hygiene, school and work performance, maintaining relationships, interacting within the community, and participating in social activities.    
For caregivers of people with schizophrenia, negative symptoms may cause more burden than do other types of symptoms as they see their loved ones life isolated and lacking in meaning or joy. 
Kristin: How are negative symptoms currently treated?
Dr. Potkin: Current treatments for schizophrenia focus on reducing characteristic symptoms and can include both medication and psychosocial interventions. No effective medication treatment has yet been approved for specific treatment of negative symptoms. Despite progress in the medication side of treatment, there are still unmet needs in terms of symptom control. A large study found that despite treatment, approximately 57 percent of people receiving treatment for a schizophrenia spectrum disorder still had at least one negative symptom.
Kristin: What is the research that Genentech is doing regarding negative symptoms?
Dr. Potkin: Researchers at Genentech are pursuing new treatment strategies for schizophrenia, including increasing N-methyl-D-aspartate (NMDA) receptor activity in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.   
Specifically, through a clinical trial program, Genentech is looking at an investigational medication for people with schizophrenia, including people who experience mostly negative symptoms of schizophrenia, despite taking medication. For more information, please visit www.SearchLyteschizophrenia.com
Kristin: How can family and friends of someone with schizophrenia help someone with negative symptoms?
Dr. Potkin: Caregivers can talk to doctors about interventions including medication, psychosocial rehabilitation (work, school, relationships), medical care and wellness, and therapy (e.g. cognitive behavioral therapy and peer support groups), as well as ongoing clinical trials. They can work with physicians to find the medications and non-medicine therapies that are right for their loved one. Different medicines may have different side effects. Caregivers can also consider programs from the National Alliance on Mental Illness (NAMI) including:
• NAMI Hearts and Minds
– Online, interactive wellness initiative
• NAMI Peer-to-Peer
– Free, 9-week educational course on recovery
• NAMI Connection
– Recovery support group for adults
Kristin: Do scientists know the biological mechanisms involved in negative symptoms? If so, what are the areas of the brain and/or mechanisms involved in negative symptoms?
Dr. Potkin: In the 1970s, the “dopamine hypothesis” of schizophrenia emerged, suggesting the biological basis of schizophrenia was an excess of signaling by dopamine, a chemical messenger in the brain. This theory, however, could not explain negative or cognitive symptoms. In the late 1980’s a newer theory suggested positive, negative and cognitive symptoms could all be due to reduced function of NMDA receptors in the brain. This theory is now known as the “NMDA receptor hypofunction hypothesis.”   
Researchers are pursuing new treatment strategies for schizophrenia, including increasing NMDA receptor function in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.    It is thought that NMDA receptor activity is an important pathway in psychiatric disorders, especially schizophrenia.
End of article.
*Note: I would like to thank Dr. Potkin for helping me put together this interview. This research is very exciting and I hope that negative symptoms can be tackled in this decade! I know how debilitating they can be!
4. National Institute of Mental Health. Schizophrenia. 2009; http://www.nimh.nih.gov/health/publications/schizophrenia/complete-index.shtml. Accessed July 7, 2012.
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12. National Institute of Mental Health. Schizophrenia. 2009; http://www.nimh.nih.gov/health/publications/schizophrenia/complete-index.shtml. Accessed July 7, 2012.
13. National Institute of Mental Health. Schizophrenia. 2009; http://www.nimh.nih.gov/health/publications/schizophrenia/complete-index.shtml. Accessed July 7, 2012.