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/

my 3 year search for symptom relief re Tardive Dyskinesia

allicat aquanotext

  • Everyone who had tardive dyskinesia or has been diagnosed with dystonia, akasthesia or restless leg syndrome basically anyone who takes atypical antipsychotics like Abilify, Geodon, Invega, Saphris, Haldol, Mellaril etc should read this because it has valuable info on prevention and finding treatment, which is not easy.

Move Over Movement Disorder

Allison Strong

Have you ever felt that you were the patient treatment wouldn’t help? After three years of searching for relief from Tardive Dyskinesia I was defeated. Out cold. Counted to ten. My saving grace was my husband because he would not let me give up. We were both up every morning at 5am, googling ‘Movement Disorder Specialists,’ ‘Tardive Dyskinesia,’ ‘Neurology’ and other keywords that weren’t specific enough to get me the help I needed to stop the uncontrollable shaking.

Tardive Dyskinesia, also called Tardive Dystonia, Akasthesia, or Extrapyramidal Symptoms, is a type of movement disorder.

Tardive Dyskinesia is a side effect that some people develop when taking antipsychotics, which are commonly used for bipolar disorder. It’s nonstop, purposeless and involuntary muscle movements. Their locations can vary. Most people have it in their jaw, and look like they are chewing gum or thrusting their tongue. Tardive Dystonia refers more to muscle stiffness and a ‘lock’ of sort in an unnatural position. It can be truly disturbing and disabling.

Children seem to have different symptoms. Information on that is described in IBPF’s free downloadable book, Healthy Living With Bipolar Disorder (page 31 under Extrapyramidal Side Effects).

According to NAMI, the incidence of Tardive Dyskinesia is 5% for each year the antipsychotics are being taken. NAMI says that over a decade of antipsychotic use, 30-50% of patients will get Tardive Dyskinesia. The number is slightly lower according to the Center for Tardive Dyskinesia. This is important because most people with bipolar disorder who take antipsychotics benefit greatly, needing them long-term.

Tardive Dyskinesia is chronic. There is no cure, only symptom management.

Eventually, I couldn’t sign my own name. Friends, relatives and acquaintances regarded me warily, with fear and pity in their eyes.

I put myself on the waiting list at the National Parkinson’s Foundation in Miami, a leading resource for movement disorders. While I waited, I saw a few horrible movement disorder specialists, one of whom said I had restless leg syndrome. Another said it was psychosomatic.

After nine months on the waiting list, I went to my appointment at the National Parkinson’s Foundation and was put on a dopamine agonist used for Huntington’s chorea (another movement disorder). I am grateful that I am able to have this expensive medication covered by a foundation that provides support for people with chronic illness called the Caring Voices Coalition.

With this medication I was better but still struggling. I went to fifteen doctor’s appointments and had three hospital visits. The ER docs just wrung their hands, shook their heads and sent me up to psych.

The crucial thing I needed was a movement disorder neurologist specializing in Tardive Dyskinesia, or a psychopharmacologist! A physician accustomed to treating people with bipolar disorder might not have dealt me the stigma, sexism, judgement, and callous ignorance I got at every turn. Ironically, neurologists blamed psychiatry’s medicines, while psychiatrists assigned damage control to the neurologists. I was falling between the cracks.

Finally, I narrowed my search enough to get a new result for a movement disorder clinic researching Tardive Dyskinesia! It was far away but my husband insisted on driving me. I met the doctor and got a new prescription. With this combination the shakes disappeared. That was in 2011. Treatment has improved so much.

In the end, I required a combination of medications, like many other people. It took a while to get it just right. My triumph over this challenge reinforced my faith in myself. Next time I fly into the headwinds of a storm, I’ll be ready. I hadn’t been left out in the cold, after all.

Watch my videos on Tardive Dyskinesia for more information and ideas on getting treatment for this side effect. Part 1 covers the basics, and Part 2 focuses on finding treatment.

More Resources on Tardive Dyskinesia:

Read the rest of Allison’s posts for IBPF here. Allison has also written for NAMI Not Alone and has personal blogs on WordPress and Tumblr.You can find her on Facebook where she has a closed group to share coping strategies for living with bipolar disorder. 

Topic:

Bipolar Disorder

Consumer

Medication

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Allison Strong

Tardive Dyskinesia

side effects

Movement Disorders