What I found very impressive was that consumers weren't the people in the background at this conference. NAMI was originally an organization of families, but it is also, and importantly, an organization of consumers ourselves. I appreciated that there was a welcome center set up where consumers could hang out, use the internet, and get free lunch tickets.
Also, I bought about five books, one of which is signed by the author who talked to me about the benefits of self publishing, something that I will definitely be looking into further!
Here is my report on the conference
On Thursday June 27th, I flew into San Antonio with several NAMI Pinellas members, and we met a couple more NAMI Pinellas members at our lovely, downtown hotel, which was right on the Riverfront. We took pictures as we walked to a restaurant for dinner, where a real, live mariachi band serenaded us (but only knew La Bamba and La Cucaracha). On Friday, we got up early for the plenary which included a celebration of NAMI's diversity, as it was titled "The Many Faces of NAMI". I was impressed that NBA star Royce White, of the Houston Rockets, spoke openly about living with a mental illness and making people in major league sports understand his illness. The rest of the day was filled with workshops. There were so many excellent topics to choose from, that I wished I could clone myself to go to them all. One I attended was on "Strengthening NAMI: Consumer Councils Make a Difference", where I learned about other states, such as Kansas, where there are successful consumer councils. One of the speakers at the workshop was my friend, Dana Foglesong of Lee County. At the end of the workshop, I introduced myself to national advocate, Dr. Fred Frise, and got someone to take my picture with him, since I have admired him for years. He stars in "Minds on the Edge", which you should Google if you've never seen it.
We visited the Alamo, which was so fascinating that Terry and I quickly decided we were more interested in going for ice cream at the local Hagaan Daaz (hey, it was 103 degrees outside!).
That night, after dinner, Dana and I tried on cowgirl hats. I had stopped counting the number of cowboy hats in Texas after I saw ten of them! I would have bought the pink one I tried on, but couldn't really see that style setting a trend in Florida.
On Saturday, I went to my favorite workshop of the conference, which was titled "Models of Care for People Living with Schiophrenia and Other Mental Illnesses". Dr. Dawn Velligan, Director of Division of Schizophrenia and Related Disorders at the University of Texas, spoke about an innovative form of treatment called cognitive adaptation therapy. In this therapy, a counselor helps a person organize her home so that tasks of every day living are easy to accomplish. I asked Dr. Velligan if any practitioners were trained on this therapy in Florida. The panelists said that they did not know of anyone in Florida using this therapy, but Dr. Velligan kindly emailed me a packet of information so that I could share it with my case manager at Boley Centers. This workshop also covered Cognitive Behavioral Therapy, and Social Cognition, which, like CAT, can help people with Schizophrenia deal with the negative symptoms of psychosis, as many antipsychotics are not able to do adequately.
On Saturday afternoon, I went to a workshop called "The Case for the Selective Use of Antipsychotics" where author of the book,. Anatomy of Epidemic, Robert Whitaker was speaking. I went to this workshop with the intention of being open-minded, as I do not agree with some of what I have read by Whitaker and his follower who sometimes advocate that people do not take antipsychotic medications, or claim that the medications rather than the illness itself are to blame for symptoms. I was surprised Whitaker was even speaking at a NAMI convention, but it was a very inclusive approach for NAMI to allow him to do so. In order to also get the other side of the story, I attended a workshop by the Treatment Advocacy Center after Whitaker's workshop.
Saturday night we had dinner at a good Mexican restaurant; we had a group of about 12 people.
On Sunday, the morning plenary was called, "Improving Treatment and Care at all Stages of Life". Dr. Dilip Jeste, past president of the American Psychiatric Association, spoke about the shortened life spans of people with Schizophrenia, giving some sobering statistics, such as that we have a mortality rate 2.5 times as high as that of neurotypical people, and we tend to die 20 years early. It was not clear to me what the exact reason for this was, though several possibilities were mentioned. I came away with the thought that much more research needs to be done on Metabolic Syndrome and the weight gain associated with many of the medications we take.
One better statistic mentioned during Dr. Jeste's talk was that 10% of people with Schizophrenia studied went into remission from their illness. Like the workshop the day before, some therapeutic approaches I had not heard much about before were mentioned in this plenary, including Functional Adaptation Skills Training and Cognitive Behavioral Social Skills Training.
Another speaker in the Sunday morning plenary was Dr. Carol Tamminga. of the University of Texas Southwestern School of Medicine, who talked about the "Prodrome" phase of Schizophrenia which often occurs in teenagers, where mild positive symptoms, such as some delusions and hallucinations are first present. I realized that in my own teenage years, I likely experienced this period, as I had delusional thoughts at that time that were not as profound as my later, clearly psychotic, thoughts. According to Dr. Tamminga, 20-25% of people who experience the Prodrome period will go on to develop full-fledged Schizophrenia.
After this plenary, was the business meeting, where the five new officers to the national NAMII Board of Directors were introduced. I was thrilled to see my friend Dana Foglesong, former chair of the NAMI FL Consumer Council, on the stage, because I think she will represent Florida well and do good work on the board.
Later, several of us from Pinellas attended the Education, Training, and Career Support Institute, where the NAMI signature, national programs were discussed, such as Family to Family, which is an evidence-based practice. After that, Terry and I attended the CIT workshop, where Sam Cochran stressed that CIT is not just a law enforcement program, but is a community program. We learned about how CIT is being used in some other states such as North Carolina. I spoke with one of the presenters afterwards about how she was invited to help rewrite the mental illness section of a basic law enforcement training manual in her state. We learned that CIT is sometimes done within the prison system. We also learned that some states have CIT conferences with hundreds of attendees.
Sunday night was the most fun of the conference: the fiesta! We all got dressed up and headed to the huge convention center where there were buffets of delicious food and there was a live band. Some of us, like wild woman, Stacy, got on the dance floor and even joined a long congo line. We had a great time and many of the pictures may be used for blackmail purposes if people are not careful (just kidding!).
On Monday, we had breakfast and then headed off for the airport, where we had a meeting with Gay right there in the terminal.
Overall, it was an informative, action-packed, inspirational weekend, and I thoroughly enjoyed my first national NAMI Convention. I am so grateful to NAMI Pinellas for sending me, and the other ten people who went, on this amazing trip!