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.

Nightmare turned into Daytime Depression is it real?

Me and my beloved ‘Mummykat,’ who we lost over Christmas this year. She was fifteen and her system just gave out on her. She went first. Then we lost ‘babykitty,’ who just gave up, even though we adopted a new kat.

80 percent of people who get Tardive Dyskinesia have uncontrollable movements, large or small, of their jaw, mouth, tongue and teeth. Over time, I’ve lost over ten teeth, which doesn’t seem fair.

Anyway, I had this terrible dream about losing the rest of my teeth a few days ago, and I’ve been depressed ever since. Did my antidepressant stop working (this has happened countless times…so we change up) or is this deal with the teeth a real downwards drag on me? I’m not sure. But if this keeps up, there’s going to be some antidepressant changes, that’s for sure. Going to ride it out for two weeks. Am in week one. This started on Tuesday.

1st Literary Agent Rejection Letter-Is it A Form letter? You tell me what U think!

This has to do with my first book, a book about ‘Prozac Poopout’ and Tardive Dyskinesia, a movement disorder caused by antipsychotics, usually from long-term use. National Alliance of Mental Illness, (NAMI) says if you take Abilify or Seroquel, Latuda, Geodon, Risperdal, Melleril, Thorazine, Haldol, Zyprexa (or whatever), for over a decade, you stand a 30-50% chance of getting TD…but try bringing up that issue at one of their “Connection” support group meetings……So Anyway……

 

I recently did a public speaking event on my topic (Tardive Dyskinesia awareness, prevention, treatment and my experience with it) at the American Psychiatric Association (APA)’s annual shindig in New York City. My book isn’t finished, but since many agents and publishers are based in New York, I figured I’d send my colorful flyer with color picture and a sample of my work, 3 short chapters. I reached out to 12 agents and five publishers. I got one agent auto-reply from a lady at a mid-level agency, heard nothing from the publishers and got this one today, from a literary rep at Folio, one of the top ten agencies, (from what I can see)

(BTW, Both of these literary reps expressed an interest in medicine/health/current affairs and psychology.  My work falls squarely into all three, plus women’s health and women’s issues). Anyway, here’s my very first letter of rejection ……………..

Dear Allison,
I want to thank you personally for giving me the opportunity to read your work. I understand the querying process can be difficult at times, and want you to know how seriously we consider each project we receive at Folio. I am sorry to say, though, that unfortunately I do not have a place on my current list to take this on.
Please keep in mind that every agent has different tastes and sensibilities and more or less bandwidth to take on new projects at any given time.  And this is a crazily subjective business. What does not work for one agent may work perfectly for another, and I encourage you to continue your search for someone to champion your work, and trust you will find the agent (or publisher) your work absolutely clicks with.
Please know I wish you all the best,

Jeff

 

Why I’ve been Dark…..

Yeah, I’m writing a book on my favorite topic, a cause so crying out for coverage I can’t stand it. It’s inflammatory, political. Side effect not sickness. Something (a product) causes it. Or supposedly does. (I’m open to other theories. You know how quickly medicine changes).

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.

 

 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

 

 

Muhammad Ali, “The Greatest,” Movement Disorder and All

aliinactionali

I was wowed to see the special, separate “Ali” section in the New York Times. There are so many parallels between him and I. The most obvious being I have Parkinsonianism from Tardive Dyskinesia.

NOT TO BE ALARMIST BUT…if you take psych meds you should be aware that…

Tardive Dyskinesia is a “movement disorder” a side effect of some GI drugs and antipsychotics. Even atypicals.

It would seem the older ones, the Haldols, Thorazines and such, were more causal, percentage wise, being that millions more antipsychotics are prescribed now with the advent of euphemized “Atypicals,” or “Second Generations” but still the risk is there. I think it’s much less although I do see new cases on the internet and even though there are fewer of them, the amount of misery is unmeasurable. Human suffering isn’t digital or binary. Sorry, Charlie.

Ali had Parkinson’s Disease, very similar to Tardive.

When I developed this problem, one of my parents declared it ‘my fault.’ (It’s also my fault I have bipolar disorder and according to him my bipolar depressions are a matter of choice too). Mein Kamph. This is just to let you know what I deal with privately. Out in the world it’s way worse. Places, mental health organizations I used to volunteer for with high security clearance, bringing support groups into the psych ward, dealing with people who had thought disorders like schizoaffective…now that I’ve recovered? They only remember the trembling, anger and tears. NAMI, Rebel’s Drop in…they solicit help with things like newsletters or leading meetings, both of which I’m good at, but after applying, I never hear back. I’ve made the  mistake of verbalizing that I’m evidence of a sad statistic they’d rather not think about.

Newsflash: I’m not going to vanish simply because my side effect shakes you up!!!

No one was ashamed of him shuffling along, shaking hands with world leaders, pushing for peace and understanding. The funeral with representatives from a wide palette of faiths is further proof that all along, with every move he made, he made the world and better place.

I’m trying to do the same. I’m trying to raise awareness of my side effect, not in an alarmist way but to educate and share coping skills as well as ideas on delaying, deferring, preventing Tardive Dyskinesia. This does NOT mean you can’t take your mood stabilizing meds. You should. You might work with your doctor closely to see if you can find the ‘lowest therapeutic dose’ because the likelihood of getting the syndrome is directly tied to dose and how many years of exposure. After a decade the odds go up. Food for thought.

I’m not a big pharma hater, either. Their innovations have both helped and hurt me. But they’ve never hurt me on purpose and they are the only ones truly invested in our health, in my view.  Because of how gruesome and disfiguring the symptoms can be (and I dealt with that for three years before finding treatment), for obvious reasons, this side effect is shrouded in secrecy; the afflicted shunned and cloistered away, not for their protection but the ease and comfort (and profitability?) of others. Just asking.

That’s it for me.

Muhammad Ali, “The Greatest,” Movement Disorder and All

aliinactionali

I was wowed to see the special, separate “Ali” section in the New York Times. There are so many parallels between him and I. The most obvious being I have Parkinsonianism from Tardive Dyskinesia.

NOT TO BE ALARMIST BUT…if you take psych meds you should be aware that…

Tardive Dyskinesia is a “movement disorder” a side effect of some GI drugs and antipsychotics. Even atypicals.

It would seem the older ones, the Haldols, Thorazines and such, were more causal, percentage wise, being that millions more antipsychotics are prescribed now with the advent of euphemized “Atypicals,” or “Second Generations” but still the risk is there. I think it’s much less although I do see new cases on the internet and even though there are fewer of them, the amount of misery is unmeasurable. Human suffering isn’t digital or binary. Sorry, Charlie.

Ali had Parkinson’s Disease, very similar to Tardive.

When I developed this problem, one of my parents declared it ‘my fault.’ (It’s also my fault I have bipolar disorder and according to him my bipolar depressions are a matter of choice too). Mein Kamph. This is just to let you know what I deal with privately. Out in the world it’s way worse. Places, mental health organizations I used to volunteer for with high security clearance, bringing support groups into the psych ward, dealing with people who had thought disorders like schizoaffective…now that I’ve recovered? They only remember the trembling, anger and tears. NAMI, Rebel’s Drop in…they solicit help with things like newsletters or leading meetings, both of which I’m good at, but after applying, I never hear back. I’ve made the  mistake of verbalizing that I’m evidence of a sad statistic they’d rather not think about.

Newsflash: I’m not going to vanish simply because my side effect shakes you up!!!

No one was ashamed of him shuffling along, shaking hands with world leaders, pushing for peace and understanding. The funeral with representatives from a wide palette of faiths is further proof that all along, with every move he made, he made the world and better place.

I’m trying to do the same. I’m trying to raise awareness of my side effect, not in an alarmist way but to educate and share coping skills as well as ideas on delaying, deferring, preventing Tardive Dyskinesia. This does NOT mean you can’t take your mood stabilizing meds. You should. You might work with your doctor closely to see if you can find the ‘lowest therapeutic dose’ because the likelihood of getting the syndrome is directly tied to dose and how many years of exposure. After a decade the odds go up. Food for thought.

I’m not a big pharma hater, either. Their innovations have both helped and hurt me. But they’ve never hurt me on purpose and they are the only ones truly invested in our health, in my view.  Because of how gruesome and disfiguring the symptoms can be (and I dealt with that for three years before finding treatment), for obvious reasons, this side effect is shrouded in secrecy; the afflicted shunned and cloistered away, not for their protection but the ease and comfort (and profitability?) of others. Just asking.

That’s it for me.

New Youtube Channel and uploaded Tardive Dyskinesia Video

 

I have a learning issue. It’s meds, racing thoughts,al in german dress and new earrings adhd and middle age so I have a social media person come over once a week. Some things happened at my magazine, like changing the name of my article and not telling me, which made me feel really sad. I’m just sad today. Anyway, to cheer me up and take back control of my activism and journalism, We created a YouTube Channel and uploaded my tardive dyskinesia videos on there. If you know anyone who has that problem, I learned a lot during my three year

https://www.youtube.com/channel/UCFrrhgSBHa6_4FIw1ydlG7Qarch for treatment.

Don’s Book, “Blood Orange” just arrived!!!!

blood orange

I finally bought a book off of Opinionated Man’s “A Good Book Is Hard to Find” and have my eye on another by the same author. It just came in the mail. Yeahhhh

I’m intimidated by the technical process of self publishing. Formatting. How much that costs. That kind of stuff.

I didn’t realize this but Don Massenzio also wrote a book on self publishing!  That’s the one I’m going to buy next.

The book is in my head like it happened yesterday. Magazines and organizations who get money from big pharma, not that I’m against the drug companies, they are uncomfortable with topic of side effect of tardive dyskinesia, also called ‘movement disorder.’  I don’t blame them. It’s a hideous topic and keeps many from seeking necessary treatment.

I know I have to stand on my own with this one. There’s only one bipolar disorder foundation who might be willing to promote a book like this. It doesn’t matter. I have to write it. The people will find me.