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.

Related articles

• Vanda Pharma: Trading Below Cash With Upcoming Catalysts Expected 2H12 (seekingalpha.com)
• New drugs shore up Novartis in Q2 (kansascity.com)
• Pharmaceutical companies putting health of world’s poor at risk | Simon Reid-Henry and Hans Lofgren (guardian.co.uk)

 

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.

Related articles

• The fight for peer support is not over (hopeworkscommunity.wordpress.com)

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/

Related articles

• Study: anti-psychotics should be avoided in young people (beyondmeds.com)
• psych drugs not the best option for people at risk of psychosis (recoverynetworktoronto.wordpress.com)
• Unshrinking Psychosis – Summary (ahmritanaturalmentalhealth.wordpress.com)

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

Found a new supplement

Health food store (Photo credit: PR®)

Prescription placebos used in research and practice (Photo credit: Wikipedia)

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?

 

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Life Without the Placebos

Followers of this blog will recall reading about my decision about 10 weeks ago to completely abandon the mood stabilizer and the anti depressant I had been taking for several years. The people in my care team, including my psychiatrist, my nurse practitioner and my immediate family were aghast at my decision. They remembered a lot of the problem that had arisen in the past after I abandoned the safety net provided by chemicals. Nonetheless, I stuck to my rights and to  me it has been the best decision I ever made.

Is this something that everyone could do? Probably not. For one thing I have a a lot of coping strategies. I’m highly educated, work experience in several fields, access to resources in person and over the Internet, a pet and a lot of self-understanding. I have people in the programs where I work who complain about their medications and the length of time they have been taking them. However as soon as they remove these medications from their symptoms they begin to deteriorate. To a certain extent their bodies have been trained to look for these medications and their minds keep asking, where’s the stuff?

Even the most ardent mental health advocates usually  recommend a gradual approach to weaning yourself off medications. This process involves finding other strategies, such as one might develop using a wellness recovery action plan. I developed my plan several years ago and I have helped others. These plans cover many different areas such as exercise, coping with environmental triggers, friendship, employment and romance.

When I moved into a clean and safe duplex recently it was a direct result of the success of my wellness plan. My mind responded positively, too, saying, “I like that, give me some more.”  In other words, now that I have a nice place, how about some company? I worked with a woman over the weekend who I have been dying to get to know for more than a year. As it happened, she moved recently and lives about ten blocks away from me. Walking distance, another one of the coping strategies.

I got a dvd player last week and hooked it up to my big screen television. I bought some dvds, watched one of them at home and decided I should bring it to work. My Internet provider ATT forced me into their rebranded service Uverse which sounds like something that the Unitarian Universalists would have created. It’s a little faster than my old service and works better with my blog. And the aforementioned pet, my little cat, has more room to roam around without getting underfoot. That was one of my pet peeves, pun intended, at my old place.

So you can just imagine with all of these things going on, how would ever have time to become depressed? So my advice, for those who want to replace those little placebos, is to get a life. Really, you’ll be glad you did.

Related articles

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• Inside “60 Minutes” placebo story (cbsnews.com)
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I Was Going to Join the Intergalactic Police but the Doctor Changed My Meds

Image via Wikipedia

Image via Wikipedia

I remember reading a novel about a woman who traveled through space and time only to learn at the end of the book that she was a mental patient. I remember thinking, well that sucks, she was a really interesting person. The stories that my peers tell me at work have touches of humor, even though I’m not really an Al-Qaeda  operative the way they think I am. I often respond with a story out of right center field. When they ask whether the story is true, I tell an even more bizarre story. Or if I hear someone rambling on about something rattling around in their brain, I advice their listeners to just play along.

The truth is, that so many of the things that happen to us as we survive the mental health system are so absurd that the best response may be with humor. I once lived with a woman who decided one day to give away the chicken in our refridgerator to the poor. The fact we were flat broke did not occur to her. There had to be some deserving soul going without food somewhere else in Milwaukee and it was her responsibility to help that person. When I came home and she told me what she had done I nearly through my glasses out the window. It was probably one of the most absurd things that had ever happened to me.

But you know what? We didn’t starve and someone in our neighborhood ate well that night. The point is not to fear the softer side of sometimes living in an alternate reality. I would hate to think that if I told my psychiatrist about wanting to join the intergalactic police he would automatically decide that I needed some new medication. Instead, I would like someone to explore the meaning that such a statement held for me. As it happens I watch a lot of science fiction shows including all the versions of Star Trek. I interpret these programs as commentaries on our modern society. And I thought Lt. Ohura was the hottest woman I had ever seen in my youth.

I encourage peer specialists, friends and family of persons exploring our minds to travel with us sometimes, strap on intergalactic travel suits and learn what these thoughts really mean. You may be the best placebo in the world.

Image via Wikipedia

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Why not take something that works?

I have been judging whether or not medications worked solely on the basis of what kind of results I personally achieved. I figure if I am able to work and maintain myself then the drugs must be working. To a certain extent that makes sense. However I have become concerned that some medications don’t actually work. Am I experiencing the dreaded placebo effect? On my previous blog entry I spoke of feeling depressed in spite of faithfully  taking an anti-depressant. So, why keep taking it?

I  was working, feeling good, and received a raise. So it must be doing something. What i began to sense was dissatisfaction with my quality of life. Like  Simon and Garfunkle said, “Im empty and aching and I don’t know why.” I have set some priorities for my life and yet in the daily work toward achieving them I lacked joy. Is that what we seek when we take anti-depressants?

So many millions of us are taking these pills and I’m curious about whether we are actually feeling better. And what do we mean by getting better? Today I laughed out loud several times. I enjoyed talking with people and going about mundane tasks. I felt more deeply present than I had been for some time. I am still looking for relief from a few minor issues in my feet. I used to take aspirin and rub pain relief cream on my feet regularly and now I don’t have to do those things.

I  can feel that something has  shifted because I substituted a couple of supplements for one medication. I am going to pay attention to my body and think about the kind of answers that I am receiving. Soon I expect to resume my exercise routine. Today’s message for my consumer friends is to ask, are you feeling better today than before you began taking whatever medication you are looking at right now? How can you tell that it’s working? Does taking the medication bring you joy?

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