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

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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.

 

 

Writing a Book, technically speaking..what does it take?

allicat

 

It just occurred to me that my greatest resource is right here on WP. I had an experience (well, actually I’ve had many) that I need to write about so that it doesn’t happen to other people who are on the medication that causes it. According to NAMI, 30-50% of people on ANY type of antipsychotic, be it first or second generation, if they take it for over a decade, they have a 30-50% chance of getting a permanent neurological disorder that’s called “Tardive Dyskinesia.” Nice. I know. It happened. And I was the ‘hot potato’ that no one wanted to help…or have anywhere near.

 

The whole damned thing is not attractive but I learned a ton of stuff in the three years I searched the world for symptom control.

There’s a hell of a lot more things you can do to lower your odds than to simply not take the medicine. But that’s why I want to write the book. I made a couple videos for IBPF (international bipolar disorder foundation) and they need a wider audience. People who are concerned or worried or who have the problem will find me, believe me. I just need to get the book out there. I’m fine with self publishing. I’m fine with offering a free downloadable product too but don’t know if I can afford to do it that way. I just read today that a badly ‘formatted’ book hurts sales. I don’t even know about what this ‘formattting’ stuff is. Who does? Are there people out there who (unlike Authorhouse and other self publishing firms) can guide you through Amazon “Create Space?” If there are, please, let yourselves be known. Once I get the first one done, I have many more books in me. I finally broke down and told my husband I need him on ‘my team,’ as he’s really technologically intelligent.

Recently I visited the Youtube channel where my videos is and saw it had gotten 300 views. Of the twenty comments, 80% of them had been on the same atypical antipsychotic as I had been. There’s something there, believe me.

Trappings of female liberation found amongst ISIS sex slaves in Iraq

isis

 

Apparently, according to the Quran, a man may not lay with a woman who is already bearing a child. This is, according to the readings, so there is no confusion of paternity of the baby, once it’s born.  This gets complicated with ISIS and their female slaves. All they have to do is capture them to enslave them. Back in the old days, they waited  30 days after buying or capturing or a new slave to see if she has her menstrual period..

But now, No Muss, no fuss. These girls are having abortions, getting hormone injections of Depo provera, taking  birth control pills, the ‘day after’ pill and being hauled in for countless blood and urine tests to make sure they are not with child.

 

We associate contraception with women’s lib. This is anything but. They are making the reproductive decisions for the women themselves.

They are all for modern conveniences when it’s convenient.

These guys are in a hurry. After all, tomorrow they may go to Allah and all of those virgins in Paradise so they gotta move on what’s alive, in front of them and their property. When they tire of one, they give her away and procure another.

Raping a female slave is permitted in the Quran under any circumstance barring her being pregnant.

The story on the concentration of power in the hands of a few and unlimited pricing power is scary

The following is a fax I just wrote to my pharmacist, an indie who is really up on this stuff. He is the one who had my back; covering the inflated cost of my 62-year-old Benzo for Tardive Dyskinesia two months in a row thinking Medicare Part D would reimburse him. He took the loss two months in a row on my behalf. He’s got my back. do I have his????? This is what I ask myself and I urge you all…..skip the chains. Indies are where it’s at for cost and service. They get to know you and catch drug drug interactions and side effects your doctor might be too busy to catch. It’s their business and they are damned good at it.

 

2-22-16

Dear Ade,

Good Morning, The stories about monopolies and prescription drugs just keep getting worse.

I read this transcript of a testimony given for senate oversight committee of government reform re: prescription drugs. The guy’s name was Mark Merritt, claiming to head up the league of pharmacy benefit managers. He claims they leverage lower prices on prescriptions, bla, bla bla.

Then I read a New York Times article by a Yale University Endocrinologist who says that one of the three biggest PBM’s Actually IS CVS! Even tho insulin has been around forever, only three big companies control the market and have managed to keep tweaking their meds to extend patent protection all these decades. Her patient can’t afford the price of insulin once she hits the donut hole and can’t afford her medicine for the rest of the year because it’s too expensive and she doesn’t qualify for RX assistance or Medicaid. This is the situation I find myself in but I have more cash on hand than most.

Isn’t that a Conflict of Interest? She claims once her client hits the donut hole she can’t pay for her medicines and what’s worse, only three people …Lantus, Sanovi and Norvo Nordisc, make injectable insulin, a biologic, which has been extended patent protection for 12 years, not 7, and controls the insulin market until a biosimilar shows up. Every time I think I have the story figured out….it gets worse!!! Now I’m thinking of submitting a story to the Sun Sentinel. What have I got to lose? At least they are not compromised.

 

OK..More importantly,

I’m coming going out your way tomorrow to see the dentist so I have an RX list of stuff that’s close or due. I’m out of donut hole so I’m an aggressive consumer again, saving my extras for the months I can’t afford anything.

Here is the list: Valium, Metformin, Linzess, Lipitor. I’ll drop off the scripts. I see psychiatrist this week so anything we need I will find out from you.

Love,

Allison Strong