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

 

 

Mentally Ill Dying in Prison Transport Vans

When I was driving home from my tardive dyskinesia neurologist appointment in Gainesville I read an article that made me shudder. It could be me. Prisoners being driving from one facility to another are at the mercy of untrained people who drive the vans and have more of a trucker mentality. It’s about how many people you can get quickly from one place to another. So they jam the vans, deprive the prisoners of bathroom breaks, etc. When a mentally ill person doesn’t get their meds for three or four days they can decompensate and start babbling loudly or drooling, one person died of Xanax withdrawal.

 

I thought…’It could have been me.’ I’ve been privileged to have good care and avoid the hospital for seventeen years but when my former bff called the cops on me and told them I was suicidal, I was in a holding area very similar to a county jail. A long time ago, the eighties, I had legal problems re my drug habit and went to jail five times, so I know what I’m talking about.

 

The problem is the privatization of public prison and jail systems. These people know how to penny pinch but it’s at the expense of those they transport and their human rights.

Mentally Ill Dying in Prison Transport Vans

This is What Riker’s Island Looks from The Sky

 

rikers island

When I was driving home from my tardive dyskinesia neurologist appointment in Gainesville I read an article that made me shudder. It could be me. Prisoners being driving from one facility to another are at the mercy of untrained people who drive the vans and have more of a trucker mentality. It’s about how many people you can get quickly from one place to another. So they jam the vans, deprive the prisoners of bathroom breaks, etc. When a mentally ill person doesn’t get their meds for three or four days they can decompensate and start babbling loudly or drooling, one person died of Xanax withdrawal.

 

I thought…’It could have been me.’ I’ve been privileged to have good care and avoid the hospital for seventeen years but when my former bff called the cops on me and told them I was suicidal, I was in a holding area very similar to a county jail. A long time ago, the eighties, I had legal problems re my drug habit and went to jail five times, so I know what I’m talking about.

 

The problem is the privatization of public prison and jail systems. These people know how to penny pinch but it’s at the expense of those they transport and their human rights.

Mentally Ill Dying in Prison Transport Vans

When I was driving home from my tardive dyskinesia neurologist appointment in Gainesville I read an article that made me shudder. It could be me. Prisoners being driving from one facility to another are at the mercy of untrained people who drive the vans and have more of a trucker mentality. It’s about how many people you can get quickly from one place to another. So they jam the vans, deprive the prisoners of bathroom breaks, etc. When a mentally ill person doesn’t get their meds for three or four days they can decompensate and start babbling loudly or drooling, one person died of Xanax withdrawal.

 

I thought…’It could have been me.’ I’ve been privileged to have good care and avoid the hospital for seventeen years but when my former bff called the cops on me and told them I was suicidal, I was in a holding area very similar to a county jail. A long time ago, the eighties, I had legal problems re my drug habit and went to jail five times, so I know what I’m talking about.

 

The problem is the privatization of public prison and jail systems. These people know how to penny pinch but it’s at the expense of those they transport and their human rights.

Looking for other tardive patients for a movement disorder project…a free online pamphlet filled with facts.

gainesvilletwoWe went to Gainesville to see my neurologist, the one who finally fixed the tardive dyskinesia, a side effect of antipsychotics.

 

I’m going after a huge undertaking, writing a book of my journey with tardive, the docs I saw (you would not believe some of the stories) the ER visits, the 8 mo disastrous titration off Seroquel that only made my symptoms explode (withdrawal emergent syndrome) and the whole lot of it.

How many people have this anyway? Who would know? I am lining up my sources and looking for input. What questions are answerable? Should I ask for a quote?  I’m just trying to do the right thing and prevent others from living the same three year marathon nightmare that I did. If you know anyone who is twitching, grimacing or thrashing, send ’em my way. bipolarbrainiacSFL@Hotmail.com

 

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Picture from Gainesville with fill light from the Lake behind me! Looking for other tardive patients

gainesvilletwoWe went to Gainesville to see my neurologist, the one who finally fixed the tardive dyskinesia, a side effect of antipsychotics.

 

I got it from Geodon. I’m trying to find out if there are any other people in my situation. If you know any, can you send them my way? I’m working on a project where I tell people what their chances are, tips on prevention, treatment and current medical thought. Having had it since 2007 and searching for symptom relief (I couldn’t drive or sign a check or fall asleep for three year…a total nightmare) It’s a lot like people who get bipolar disorder and have a three year period during which they tried everything. This is a good photo because there was a lake across the way, right below me and the light came from below, filling in my roadmap of a face!!!  In Hollywood I think that’s called a “Kleig Light” or something like that. We shot pictures forever. It was so fun.

90’s Film “Swimming With Sharks” w/Kevin Spacey

spaceyswimsharkskevinsharks

It’s “Shark Week.” And I’m back out in the water, crawling my 1 1/2 miles with a back brace on to prevent me from aggravating my spine twisting my torso too far when I turn right and left for a breath of air.

Little by little, we lose things we love and adjust, accept and move on. I’m the worst, constantly trying to ‘have iot all,’ as my health deteriorates. lololol! I need to go back to AA and practice “Acceptance” and  “Life on Life’s Terms.” Did those faces trigger or seem punitively grim to anyone else? Or am I the only one?

 

Anyway, movies like these, (and I’ll bet you never heard of “Swimming With Sharks),” helps me with chronic pain. Maybe cuz it’s my favorite topic: Hollywood Studios and the machinations taking place behind the walls.

It was an indie film and did not get wide distribution. I lived in LA when it came out and also when the film “Affliction” was released, featuring Nick Nolte, Willem Dafoe, Sissy Spacek and the late James Coburn.  Family alcoholism and mental illness passed on and one in a small town in Maine. The bitterly cold climate was a perfect counterpoint to the simmering rage between brothers over ‘who fucked up the worst’ similar to Bloodline. These are Indie films with A-listers.

What does that tell you about Hollywood, Money And Power?

 

I taking on the ‘powers that be’ trying to address a side effect of antipsychotics that’s mostly covered up.

It’s a movement disorder. I have it.  If I say what, I’m afraid you’ll split. But it’s important. It may be rarer than we thought but it’s real. People at risk or showing early signs need to know.

Deal? Help me? Click and/or comment on this little story if you think we can help each other…. and I’ll find out who you are and we can talk about whatever. On WP, we do that, or at least that’s my experience.

http://www.bphope.com/blog/bipolar-mood-cycles-stop-fighting-and-win/