Is the system crazy?

I recently began reading a book by Pete Earley called Crazy A father’s search though America’s mental health madness. The catalyst for the book was the mental breakdown of his son Mike.  Mike, who had been a college student in Brooklyn nearing graduation, began acting very strangely, a fact which made one of his friends contact Pete. The message was: your son needs help. But his efforts to assist Mike were complicated by a number of factors: as an adult, Mike had the legal right to reject treatment. He was diagnosed with bi-polar disorder but resisted taking medication, calling it poison. Even when Pete drove his son to the hospital, doctors often refused to admit him, repeating a mantra about Mike not posing a risk to himself or to others.

Shortly after one failed attempt to get treatment, Mike ran away, broke into a neighbor’s house and caused a significant amount of damage to the house while taking a bubble bath. He was arrested and released without bail. When the neighbors discovered what had happened, they were furious and demanded that Mike be charged with two felonies. If convicted, he would have been lost many rights, including being barred from  entering the profession he had been preparing to enter before his break from reality. Pete dug in his heals and refused allow his son to be labeled by something over which he had no control: his brain disease.

Eventually, Mike was allowed to plead guilty to a misdemeanor and began cooperating with treatment. He even recovered well enough to begin returning to work. Unfortunately he now faced 2 different types of stigma: as a person convicted of a crime and as a person receiving mental health treatment.

This experience made Pete want to research the mental health system, especially the criminalization of mental health. The laws prevented him from forcing his son to get help but then were ready to lock him up if he committed a crime, even if he could not understand the consequences of his actions.

Pete learned about the process of declaring that a mentally delusional person was ready and able to stand trial. The method involved testing and retesting people on a series of 10 questions about the legal process: do you know what the judge does, what is the prosecutor’s role and what does the juror do. None of these questions have any relevance in determining sanity.The most disheartening thing that Earley found was the way  that reports and exposes of the barbaric treatment in jails failed to result in changes in the treatment of mentally ill prisoners.

All of this troubles me because I am wondering whether Milwaukee will provide sufficient safeguards in the downsizing of the Milwaukee Mental Health Complex. It is very likely that the Milwaukee County jail is the largest treatment provider for persons with mental illness. And we are still having problems finding housing for some of the people in the housing . Will the jail become their next residence? If so, that would be crazy.

 

Act naturally or what is your vision of recovery

 

I spoke with two people today about both halves of the title of this blog. So let’s take them in the order they were delivered. Act naturally was the title of a country and western tune by Ringo Starr, who is most noted as the Beatles’ drummer. The person I was talking with was complaining about the fact that a legal hold on her is up for renewal and she felt she did not deserve to be under that hold any longer. I told her that she had made several strides in the few months that I had known her. She will soon be nearby many natural supports including mental health advocacy groups, a library and the downtown clubhouse. Moreover, she could also be pro- active and talk with her doctor about seeking medications that don’t have the disturbing side effects that she complains about. In other words, act naturally.

She will now have the freedom to live on her own which means she will be responsible for keeping her surroundings clean. As people visit you, they can observe how you are handling your responsibilities. Similarly, if you get out and circulate with other people, you can find friends who have had experiences similar to yours. So while the first impulse may be to get angry and declare that you’re simply going to resist, a more reasoned approach may be to act as if you have recovered. And to build a strong foundation for that recovery.

And that provides a nice segue into talking about the second discussion in which I asked a person what was their vision of recovery. The most interesting thing I can tell you is how ordinary her vision was. It was what any of us would want, the ability to make their own decisions and feel in control. A person like that probably does not need a social worker and ultimately would graduate from supportive living into independent living. An apartment of one’s own in the community without peers coming to visit. That does not mean a life without other supports but the ability to pick and choose which ones might be most appropriate.

I also talked with this person about “aha” moments and “hah hah” moments. I explained that the aha’s  represented moments of clarity in which one gained insight into one’s behavior and began consciously making a change. The hah hah moments are the times when you feel you have reached your recovery goal or goals. And you thank yourself for having the courage.  This is what I do.

 

Eating on the drug company’s dime

 

This evening I went to a presentation at a fancy hotel and this presentation was sponsored by Novartis which makes an antipsychotic medication called Fanapt. We were literally wined and dined. Most of the participants were probably nurses, psychiatrists and social workers/case managers. If I had to guess I would say I was the only peer support specialist. I was there to learn from deep inside the belly of the beast.

A number of things raised my eyebrows in the presentation. Most of the data presented resulted from very brief  studies although the doctor also had some information from people who have been using it for about 2 years. He told us that the patients using the medication should notice a reduction in symptoms in just four days. Although the presentation about about using the medication in patients presenting with schizophrenia, the doctor has also used it with patients with bipolar disorder. When I searched reviews of the medication from consumers, I also found that some of them were taking it for “off-label” problems, such as bipolar.

Use of the medication has not resulted in significant weight gain, according to the doctor. So, this is a new medication that has only been available for a couple of years and is significantly better than older anti-psychotics? That depends.

However, when I did some research I found that this medication has a somewhat checkered past. This information is from Wikipedia

Regulatory approval

Hoechst Marion Roussel Inc. made initial inquiries into the drug; however, in May 1996, they discontinued research, and in June 1997 gave research rights to Titan Pharmaceuticals. Titan then handed over worldwide development, manufacturing and marketing rights to Novartis in August 1998. On June 9, 2004, Titan Pharmaceuticals announced that the Phase III development rights have been acquired by Vanda Pharmaceuticals. The original launch date was scheduled for 2002. On November 27, 2007, Vanda Pharmaceuticals announced that the U.S. Food and Drug Administration (FDA) had accepted their New Drug Application for iloperidone, confirming the application is ready for FDA review and approval.[6] On July 28, 2008, the FDA issued a “Not Approvable” letter to Vanda Pharmaceuticals concerning the drug, stating that further trials are required before a decision can be made concerning marketed usage of iloperidone.[7]

Iloperidone won FDA approval for use treating schizophrenia in the United States on May 6, 2009.[8]

An article in The Street points to disappointing sales of fanapt. http://www.thestreet.com/story/10997122/1/vandas-fanapt-falls-flat.html Which could be a reason why we were given the sales pitch tonight.

I also have a chart  comparing side effects of fanapt with another anti-psychotic. http://www.ehealthme.com/compare_drug_interactions_side_effects/risperidone-3249043

Some of the information about fanapt on medical websites reads like it was taken straight from the drug company. What I did not find in the presentation or on the web was the impact that rallying a consumer’s natural supports would have on the prognosis. There was a woman at the presentation who wondered whether one of her patients with many severe issues unrelated to his mental health diagnosis could benefit from fanapt. In other words, could he stop being a mean alcoholic? In my experience, the only relief for mean alcoholic men is an early grave.

Are the wonder drugs? Who will rally a person back to have a meaningful role in society? Is this a recovery oriented system?

I believe it is essential that more peer specialists go to these types of events. Since I had no experience with anti-psychotics, I could ask some questions that others might have raised. A large part of what case management involves is making sure that people are getting and taking their meds but peer support can inform this process by introducing and reinforcing choice, the need for multiple supports and the idea of treating people not as a mass of symptoms to be managed but as whole individuals with desires and needs. So I hope peer specialists won’t shy away after reading this cautionary tale but dig in and learn about what these companies are trying to feed us.

 

What better time to tell your co-workers about your inter-galactic dreams?

As many of my devoted fans know I recently started working in a certified peer specialist position in Milwaukee. There appears to be a push in various parts of Wisconsin to hire certified peer specialists. Many of these positions are part time but mine is full time. Now entering my second week I am shadowing the case managers and learning about the consumers we have been assisting.

One person who I met made me think back about y reflections about wanting to join the inter-galactic police. People actively operate based upon their delusions an the question is, why do these stories have such meaning for them? At what point do people stop acting upon their delusions? If I knew, I’d probably be Governor. I chose without hesitation to send one of my new co-workers the story because it is a subversive one. I don’t believe the medication is responsible for loosening the grip that the delusions have.

Moreover, not all delusions are harmful. They can be funny, puzzling or deadly serious. Our job is to see beyond and through the delusions to find the people hiding behind. I don’t thing we’ll find Judy Garland singing Somewhere Over the Rainbow but something more meaningful. So what I hope my story will do is spark a discussion on how to harness creativity.

Tonight’s speech to policy-makers

I am Kenyatta Yamel a certified peer specialist in Milwaukee. I have 8 years of experience as a peer specialist working in supported apartment programs developed to fill the gap of safe affordable housing for people living with mental illnesses. I was also a peer specialist at the Crisis Resource Center that was created as an alternative to hospitalization.

I am a Vietnam era veteran which was a key factor in my recovery from mental Dis-Ease. After experiencing a series of losses, including jobs, my marriage and my housing, I turned to the Veterans Administration for help 10 years ago. While I was living in veterans housing I learned about peer support. I joined a committee that was meeting to develop peer support in Milwaukee and Waukesha County. The fact we have come this far is a testament to survival.

Because of the low wages I earned, I was unable to secure safe affordable housing, even being evicted from a slum dwelling. The roaches followed me to my next residence, which was incredibly humiliating. My teeth deteriorated and started to bleed due to the lack of dental insurance. And I had to rely upon food stamps and financial aid from college to pay my bills. I was often miserable and depressed. And I was truly a candidate for anti-depressants.

I don’t want any more peer specialists to endure these kinds of horrors. We need livable wages so that we can afford our medication or wholistic health services. We need position that offer professional respect and collaboration with clinicians and most importantly our peers. And finally we need to be able to see peer support as a chosen profession not one into which we were thrust by accident. We embrace certification the way we help our peers embrace recovery.

I tell consumers to look upon diagnosis as a snapshot. So it is with tonight. I want everyone to think of this gathering as a picture. Remember this picture when you look back 5 years from now on how far we have come. With your help, we will go there together. Thank you.

What is the evidence on anti-psychotics

Earlier this week I wrote about an article I found in Mad In America about the use of anti-psychotics. Today I read summaries of important studies that looked at the outcomes of people using these medications compared to those who do not. The studies showed that outcomes of people who became long term users declined compared to those who never used them or weaned themselves off the medications. All of this continues to poke holes in the theory that people who have had experience of mental illness suffer from a kind of chemical imbalance in their brains that must be corrected.

If anything, the opposite of what is currently believed may be true. That is, powerful psychiatric medications may be creating chemical imbalances in brains that worsen over time. Falling in love, developing close friendships, living in a supportive environment and getting regular exercise are far healthier and enjoyable.

So, check out these studies and let me know what you think. http://www.madinamerica.com/2010/04/schizophrenia/

Wikipedia: N is the fourteenth letter in the ISO basic Latin alphabet.

Found a new supplement

Health food store
Health food store (Photo credit: PR®)
Prescription placebos used in research and pra...
Prescription placebos used in research and practice (Photo credit: Wikipedia)
Prescription placebos used in research and pra...
Prescription placebos used in research and practice (Photo credit: Wikipedia)

Readers of this blog will remember that I started taking SAMe late last year with excellent results. However I have found the supplement a little expensive. It was better than the placebos from the drug industry I had been taking but wow a 2 week supply could set me back a few dollars. With that in mind I called a local health food store and asked about their recommendations.

The fact that health food store was so nearby was remarkable, too. It is conveniently located next to a liquor store. The person I spoke to at the store recommended deproloft-hf  which has a lot of B vitamins  and other interesting ingredients. The list of ingredients includes something called GABA that I intend to investigate a little further. I am hoping that readers will have had more experience than me with supplements in general and this particular compound.

I want to be able to have the excitement and fun that was available before I began slowing down my thoughts. I don’t want to race until 3 AM but I also don’t want to feel numb. There ought to be a happy middle ground available that says, it’s okay to kiss your girl friend. Stay out and have a good time for the weekend? No problem. Gotta work on Monday. We got your back, bro.

With that in mind, let the comments fly. Who likes supplements and who prefers not taking supplements or medications?