Patient Activists Re Schizophrenia and Tardive Dyskinesia

It’s not the “Allison Strong Show:”

One of the things I’m learning about this work is that I need to be more of a leader. Other people want to ‘talk shop’ and compare notes, which can lead to gossip and comparisons. I hate it when I compare myself to others, I always come up short.

 

That being said, there is this incredible lady who is running a foundation for Schizophrenia research, treatment and recovery. Lots of the content on the site is holistic, or functional, nutritional psychological….it’s not ALL about medicine.

If you are interested in any of this you can find Bethany Yeiser at Curesz Foundation. She also wrote an incredible book, called “Mind Estranged” about her recovery from Schizophrenia.

 

This particular video is about a drug that I take, it does not aggravate my neurology the way the newer drugs did, I had less weight gain than I did on Seroquel, and in my humble opinion, this drug is woefully underused. Why? It’s not a new drug, not on patent, and therefore, no money going into marketing. Second reason: Monthly blood work to guard against a very rare, but fatal side effect.

 

But also, Clozaril almost never causes Tardive Dyskinesia. I wish I’d been on it from the  beginning. So worth it. My life is better today because of it.

Tardive Dyskinesia Videos

I did these videos three years ago, underneath crappy indoor overhead lighting and with no makeup on to cover my considerable sun spots from all the tennis and volleyball and running in South Florida. Still, their message resonates. No matter how hard they try to squelch us and our ungainly side effects, Tardive Dyskinesia happens (our population has grown three-fold in the last ten years) there are ways to prevent or delay its’ onset, and there is finally FDA-Approved first ever ‘first line’ TREATMENT!!!  Ladies, Tardive hits women 2-4x more than men, so you might want to see if you’re on one of the medications that cause it. The problematic medicines are in the ‘Dopamine Receptor Blocker’ category and they include products in wonderfully conceived, expansive mindstyle ads promising happy days ahead. The drugs are great, but they have regrettable fallout. Sometimes they are used for anxiety, sleep disorders, dementia-related agitation, cancer anorexia and aids (to stimulate appetite) and gastrointestinel disorders.

These are located on IBPF’s Youtube channel.

or you can Google Tardive Dyskinesia or Allison Strong if the link doesn’t get you there. from what I understand, these videos might be taken down shortly, so watch them while you still can.

 

Why I’ve been Dark…..

 

The topic I wrestle (or wrestle) with the most is Tardive Dyskinesia, a side effect of antipsychotics. It’s gaining traction on Television with “The Good Wife’s” Michael J Fox’s character, Louis Canning, who has TV, or the ‘patient/perp’ storylines on “Law and Order.” TD comes up there in a clarion call crying out that for the mentally ill in the criminal justice system, justice can never be served. Well, it can get dicey out here on the outside of penal institutions as well.  It’s just that no one wants to hear about it just yet.

 

Mentally healthy people get prescriptions for Antipsychotics. In 2015, 60 million RX’s for antipsychotics were written, (according to QuintilesIMS, a global tech and data solutions provider for the healthcare industry.

These drugs are helping, it seems, everything under the sun, from anorexia to insomnia, OCD and anxiety. Who doesn’t want to feel better, right? I take one myself.

 

They are sooo glowingly ‘madvertised’ on TV with enervating names that suggest Results (Rexulti) The World is Your Oyster (Geodon) Able again, (Abilify)….and that’s fine. These are good drugs and certainly an improvement over the mood stabilizers that ruined people’s kidneys. The thing is…they work so fast and so fully we forget to check the flip side. And there always is one.

 

If you are having uncontrollable movements and think you might be on one of these drugs….there’s finally an FDA-approved treatment for our 55 plus year old, long neglected syndrome, Tardive Dyskinesia. Another one, a second, (when it rains it pours) is supposed to be FDA-approved (or not) on August 30th.

I’m going to try one.

If YOU think you need a TD specialist, as opposed to a TD ‘Denier’ to check you out (and there are TD ‘Deniers’ out there, sad to say), here is a state-by-state link.

 

Hopefully, it will help you out. And yeah, I’m still bipolar…pulled out of my last ditch in March. I think DBT skills really helped. More on that later.  It’s good to be back.

http://www.lifescript.com/doctor-directory/condition/n-neuroleptic-induced-tardive-dyskinesia.aspx

 

 

Are you at risk of Tardive Dyskinesia? Find out now.

You know that rapidly rattled off disclaimer “Call your doctor if you experience involuntary repetitive movements as these are serious and may become permanent.”

No shit, Sherlock. This International Bipolar Disorder Story has some of the stuff the doctors won’t tell us. The TD causing meds developed for schizophrenia are now being used for mainstream, run of the mill, non mental ill concerns such as anxiety, adhd, insomnia, cancer and anorexia (stimulate appetite) depression, and bipolar disorder, so you might be on one of the drugs that’s whitewashed as something else and be at risk. The drug companies don’t exactly advertise they’re selling reformulated Thorazine. Antipsychotics.

Be safe. Be sure.

http://ibpf.org/blog/tardive-dyskinesia-decade-later

Allison

Antipsychotics…..all different, I found out by experimentation

tiarawithoutsilver 001 I’m not bashing atypical antipsychotics..compared to the alternative mood stabilizers they are cleaner  …..antipsychotics are great.

Don’t get me wrong. I wouldn’t give up my Clozaril for a minute. Even though it requires monthly bloodwork.

But there are ways to take your medicine judiciously and reduce your odds.

This picture was taken back in the day when I was on Geodon, not the right drug for me. It made me more manic. Then, Abilify, which is said to be ‘helpful for depression,’ made me depressed!  I told my doctor and he shhshsed me. Did you know that psychosis is a side effect of discontinuing antipsychotics?

When I finally got off of Abilify, I was hearing voices again.  Mercifully, it was during a hurricane, so it was normal for the shutters to be closed and the house dark. I was psychotic the first three days. That’s a side effect of trying to get off antipsychotics, I found out.

Antipsychotics block D2 (dopamine receptor) and after a while, the D2 receptor, wanting what it’s been deprived of, become increasingly sensitive to even the least little bit. That’s when movement disorder occurs. If I’d just stayed on Seroquel, I think I would have been ok.

The reason I say this is when my shakes showed up, I was on Geodon. I had no idea I’d even been on antipsychotics. In clinic, We went back to Seroquel and my symptoms disappeared….for a year.

Then we put me back on a ‘weight neutral,’ Invega.

The shakes came right back. We went back to Seroquel and they lessened.

You probably aren’t interested in this stuff, but believe me, with tens of millions of Americans don’t even know they are taking relatives of Thorazine. Their likelihood of getting TD, (according to NAMI and MHA)is 30-50% after long term exposure (and these drugs are meant to be taken for life). They are not bad meds, but lower doses and nutrition are just two of the ways people can reduce their risk. But if they don’t even know, like I didn’t, how can they think preventatively?

Third leading cause of adult death physician error

or

 

A topic gets sensationalized, everyone jumps on it and we forget all else. Like my wisecrack about the airlines being like the drug companies. Right now, a hot topic is demonizing the use of opiates. Yet the third leading cause of death is doctor error …sometimes writing the wrong medication.

They are changing the name of my antidepressant, Brintellix to Trintellix because docs and pharmacists were getting Brintellix confused with something else….

Gosh, I had just gotten my pharmacist and my doctor accustomed to the original spelling. As if life wasn’t confusing enough. Instead of further restricting people’s access to pain medicine they should make those doctors slow down and take remedial medical courses after an incident of physician error, as I’ve suffered a few of those and walked away from a lucrative lawsuit. (See: Tardive Dyskinesia, Failed Foot Surgery)Photo of a photo

Part2 Consumer Drop Ins…History and Funding (with Links by State)

rebels (2)This is me at my drop In working on my WRAP Plan at Rebel’s in Hollywood Florida….(one of my WRAP Goals was to make more friends, virtual and real)…

 

Drop-In Peer Centers Part Two: History and Funding

Allison Strong

Last month, I wrote about my drop in center, Rebel’s Drop In, which offers peer mentoring, art classes, outings, and other activities.  What would it take to start one?

What is peer mentoring?

A peer is someone who has personal experience living with mental illness.  Seventy eight comparative research studies that I read prove that peer mentoring is astoundingly effective in a number of ways.  I got this information from two articles. The first is an April 2014 article from the National Coalition for Mental Health Recovery. It’s titled, “Peer Support: Why It Works.” The second group of studies cited come from Mark S. Salzer’s 2010 paper: “Certified Peer Specialists in the United States Behavioral Health System: An Emerging Workforce.” I’m sure there are even more.  One of studies in particular is about the cost effectiveness of this approach, reducing the amount of crises requiring inpatient confinement. So if you were going to approach a local public hospital that treats the uninsured and the indigent, this study would be of interest to them.  Bluntly put, this and other evidence-based comparative studies proves that by supporting a center, maybe by providing space or funds, that over time, they will save lots of money and be able to count it.  Drop-ins have been proven to improve quality of life and even save lives, something of interest to a possible private donor.

How is it funded?

Here’s how the movement legitimized itself, opening the door for funding.  In 2001, Georgia became the first state to specifically identify peer mentoring and support as a Medicaid reimbursable service. Other states, but not all, have followed suit.

In 2007,  Dennis B Smith, the director of the Centers for Medicare and Medicaid explained it as an “evidence-based” mental health model of care that consists of a qualified peer support provider who assists individuals with their recovery from mental illness and substance abuse disorders. In my opinion, it’s a win-win endeavor.

Federal funds are available through Samsa. If you Google Samsa, the prompt for ‘grants and funding’ is on the first page. When you click that, the easy instructions on ‘how to’ fill out an application for grants displays with the bright, easy-to-understand application itself. There is grant-based funding at the city, county, or state level depending on where you live.

How did my center get started?

I sat down with Kay, my center’s project director. She is a peer mentor and manages the other peer mentors. She oversees the volunteer program and other curriculum. A little known but important fact about Kay: She started and nurtured the area’s only Schizophrenics Anonymous self-help group. This has taken conviction and time. Kay’s very interesting, and was kind enough to sit down with me and give me background on our center. She has a stout skill set and many personal achievements. For her, it’s been a journey.

“I was on disability for six years, but always wanted to go back to work.” She worked part-time in the kitchen at the Buddhist Conference center, finding the beliefs enriching and helpful.

“The Buddhist practice definitely had a transformational effect on my life,” she said. “It was very positive.” The next stop was two years of part-time work at MHA, while volunteering at another local drop in center. In 2003, she was hired full-time to work at Rebel’s Drop-In, in Hollywood, Florida. While working full-time at Rebel’s she went back to school, earning a Master’s degree in counseling and is now a licensed LMHC. She mentioned that the hospital helped her to do that.

“The beauty of a hospital affiliation is that we can offer a continuum of care to someone who might need a higher level of care,” she said. “Our psychiatrists and therapists are here on site to evaluate and facilitate that.” The volunteer program offers many opportunities for consumers to do something positive with their lives, in addition to socialization. Isolation, which can be a symptom of some mental health problems, can perpetuate the problem itself.

Rebel’s opened in 2001 with the help of a consumer advocate and a contribution from a private donor. The space was provided by a local hospital. Grants helped provide the additional funding needed to operate the center in its early years.

“Our Grants have only gone up over time. I’ve hired more mentors and offer more programs,” Kay said. “Doesn’t this seem unique in these eras of budget cuts?”

“It’s exceptional, in any political environment.  Part of it is that I am a meticulous record keeper. That’s the key in any grant-funded environment.”  At that moment the doorbell rang. She relaxed and leaned back, shooting a glance all the way through the door to the group room, around the reception desk to the front door. Her smile reached up to her eyes.

“This is the best chair in the room to sit. At any time I can always see who is trying to get in and go open the door for them.” She got up from her seat and did just that.

Below Are the State-By-State Directories…they may be slightly out of date but try them to see if there is a drop in offering free WRAP services near or in your town.