Cat- Astrophe Solved!

She was missing. She is mute. We couldn’t find her. We used DBT to think, “Ok, what’s the worst case scenario?” Mike thought she had gotten out. She’s cute enough (a delicate calico kitten) someone might want to keep her for their own. I was pretty sure she was either hiding or trapped in the house. Mike was SURE she was NOT in the house. In the end, we opened one of his sock drawers and she jumped out. God were we ever relieved!!!!

 

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.

 

An example of ‘Dialectical’ (in DBT) 1st Hollywood SuperAgent Sue Mengers

This was the late Sue Menger’s favorite picture of herself, smoking up a storm at her desk. She smoked other stuff, too. 

With all the hype around DBT, alot of people wonder….what is dialectical? It’s hard to explain. It sorta means two opposite things can both be true, and to learn to walk the middle path while accepting the opposites or dichotomy.

A recent Vanity Fair Hollywood Edition there were quite a few examples of ‘Dialectical’ Types…but let’s start with Sue. It’s said she was the first person who could have all the talent packaged in a film and work a deal to give the actors a part of the back in…the box office receipts in percentage points.

Sue Mengers was all women. Like the boys in the boys club, she was from the East Coast, came up from the William Morris Mail Room but later went out on her own. She was tough like a Man.

She had to deal with male directors of the old school, however.  She knew just how to work them.

This was during the 70’s. When Otto Preminger, who directed “Gone with the Wind” objected to an actor on the basis that he ‘was a fairy,’ she looked the old man straight in the eye and said, “No he isn’t. I slept with him myself.”

Mengers had fabulous parties. Everyone who was anyone was there. She launched the career of Richard Gere. Candice Bergen. Gene Hackman and tons of other examples.  She saw something in talent others didn’t see and fought tooth and nail to get them work.

That’s what an agent is for. I’ve begun my agent search for my books. I have at least two I want to write. I gather names, find out all about them and then send out a stealth attack …hoping what I offer is what they’re looking for. But sometimes, agents don’t know what they’re looking for until they’ve been hit over the head with a two by four.

Anyone else looking for a literary agent?

Punk Rock ‘Three Chords and The Truth?’

I heard about an artist, Colleen Green, who says her work is ‘Ramonesque’…i.e., The Ramones. I find stuff like this in the New York Times on the stairmaster at the Y.

Last week, on Sirius’ ‘Guns and Roses Channel,’ I heard all kinds of good stuff that I want to purchase and record. Also heard really good stuff on Jonathan L’s “The Lopsided World of L” Mersey Radio, Liverpool, England.

Jonathan is a former employer of mine at Radio station KFMA and ‘The Q’ both Phoenix, Arizona. You gotta know when someone hires you twice, you have worth in their eyes. This has nothing to do with Bipolar Disorder or Tardive Dyskinesia….it’s what I do to get out of depressive phases, like the one I’m in right now.

Actually doing the work (writing)

anglemegyn

I’m working on a book that’s before its’ time. Tardive Dyskinesia, (soon to be ACRONYZED as TD) It’s centrist and slightly comic as the subject matter is really heavy stuff.

I want it to be an ebook that can be updated when new resources (charities) or new meds or clinical trials become available.

My first 6 chapters are done but there’s a lot of repetition because of memory issues. The truth is I want to get this over with so I can write my ‘main’ story. Or maybe this should be folded into my main story? I just don’t know what I’ve got until I do the work.

Can you just put something like this on your blog? So people can find it when they need to?

Apple’s ITunes Stole 3009 of my songs and I can’t get ’em back!

applworm2

 

Case #100049365971

Ongoing for 8 mos.

Number of times called customer service: 9

Times I had computer nerds come to the house to help (and payed them): 5

Time spent on hold or talking to inept people who can’t fix it: 40

Tears shed over not being able to purchase new music either: 9

Anger over big, faceless corporations taking over matters close to the heart such as health care and music, for starters…big time.

This is theft of 3000 dollars.

Who else sells music?

What recourse do I have, call the FTC?

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.

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.