Mental Illness Awareness Week and Patient Advocacy…part of a series

Above…just a real picture of a real human being, shaggy bottle dyed red hair that badly needs cutting….. and all.

We all want to improve our lives and help other people along the way if we think we have something to pass on, a situation we survived. I have several of those. Tardive Dyskinesia. Eating Disorder. Depression, Addiction….Allisonism, if you want to know the truth. But I told you I’d talk to you about how you can get involved, so here’s where I’m coming from.


The opiod epidemic drives me crazy, because there are a bunch of people doing their best to bring it to a swift resolution who have absolutely no idea, from an experiential perspective, what it’s like to have pleasure, pain, euphoric recall, the power of suggestion, peer pressure and any number of other mental and emotional factors driving something that’s just so basic…..pleasure, unequaled bliss, is how I remember it.  As excruciatingly difficult as it is, we can reclaim our lives. If I’ve done it so can anyone else. If I get an opportunity to speak to people in any sort of ‘recovery’ setting, (I hate the word ‘sober,’ and the word ‘recovery’ but that’s just me) I will jump to get there, no matter what. Sometimes the one-size-fits-all box of abstinence only 12 step programs gets in my craw, but I get over it. If it weren’t for the rooms of AA, who knows, I might not have made it.

So….here are a few things I picked up from a nice lady at a PR firm who thoroughly vetted me (job references, an interview conference call with their legal team)…when it turned out that for regulatory and legal reasons, they were NOT going to hire me, after all. It was a great experience. I learned a lot.

People at PR firms, casting directors, ad agencies, whoever is trying to promote a product, they are looking for that flash of inspiration that they need, they don’t know exactly what it is, but they recognize it when they see it. So you have to put yourself out there. Get connected with PATIENT COMMUNITIES, and look for the health condition that might match a medication that is for that condition, whether you are taking it or not. Often times, we are hired for general “Disease Awareness” and asked to tell or blog or do a video about our story, irregardless of what medicines we are taking or intend to take in the future.

If they ask you to upload a picture, make it a ‘real person’ shot, not a glamour shot. They want someone who exudes beauty and humanity from within, it’s in the eyes, the smile, the tone of voice. I’ve got much more for you on this subject later. Let me know how you are doing with this, or if you think I’m full of shit. Sometimes I am.

The Time is at Hand for a Agent/ Publishers search.

Writers…this is not a promo or commercial for my book. It’s writer’s musings while writing first draft.


All I want is for my story and the ballpark but the consistent consensus of my 10-neurologist ‘brain trust’ on answers to things like ‘What are my chances of getting this?’ to get out there.

I didn’t want to put pressure on myself by going after an agent/publisher before the first or second draft of my book  was written w/bibliography and footnotes.

I didn’t graduate from Stanford and sure didn’t major in English Lit which would have helped. I did, however, take a boatload of journalism classes and still have the notes.

From research I learned Tardive Dyskinesia is not only a side effect of antipsychotics but EVEN antidepressants, ADHD meds, Lithium, Depakote too! All these meds are good, solid meds..I’m not demonizing them. That’s been done to death.

Just like the opiate epidemic, it’s not really about the drugs…’s the suppression and lack of knowledge.  Just like the opiate war, it’s not a battle to be won overnight.

This is the first book on this side effect. It is or will become an important general health issue.

Tardive Dyskinesia ‘prevalence’ doubled in the space of three years. 500-700,000. No longer an ‘Orphan’ disease.

I didn’t exactly know the content and flow until I started working on my bibliography., (Which presently is 20 pages long).

What I have now is a halfway done first draft, footnotes and 3/4 done MLA bibliography with another new thing I learned ‘Department of Index’ (DOI) links.

.But the book still feels like ‘All Talk.’ I want it to be ‘for real,’ a deal sealed w/academic or indie press. I truly don’t want to self publish a shoddy book. I’m in over my head. I will if I have to……but gosh….I could just put it on my blog like I’m doing now.

I wish for a paperback to be available so people can hold it in their hands and see they are not alone.

I see the support I need to perfect things like formatting, developmental editing, punctuation and form of my bibliography, (which includes books, websites, dates of retrieval and press releases)… cover design, legal vetting, promotion and distribution….yada yada.

I know I need a partner.  Let other people help me out of their own self interest.  Either a pharmaceutical company pamphlet or a renegade book published by an indie or academic press. Royalties go to a 501C.

There are many people who would like the world to be better educated on the permanent side effect of Tardive Dyskinesia, a  61-year-old syndrome that’s been bullied into the broom closet because it’s scary to think about, affects patient compliance and overall, very bad for the lucrative antipsychotic business.


Words of the Weak


This is supposed to help our mood. I don’t know about you but I woke up soooo depressed today. Once I got to the music and the computer much better.

Sobriquet (can’t remember context)  Nickname

Probity (2016 campaign) Morals

inimitable (Prince)  Cannot be copied.

Dyspeptic  (2016 campaign referring to a candidate) indigestion or irritability.

Mantel (can’t remember context) just what it means. A mantelpiece.

Cash In Hand Egyptian Mercedes Benz customer makes commotion & gets spread in NYT Y is this weird/



Any time I see something about the Middle East I read it. We as a country and especially me, have known so little for so long. I can’t wait to read Anna Secor’s “Children of Paradise” out of Iran. But this one was classic. As you know, Saudi Petrobucks have all but dried up. They used to send Egypt billions but now can’t afford to. To finish Egypt’s ecomony out was the disastrous shooting of the Russian Bound plane from the Red Sea out of the sky. They have lost 1.5 billion or more in tourodollars.

But the poor can’t even afford cooking oil or bread and it gets no play, none of our attention. Then a young, entitled wealthy guy goes into dealership to find his model is not available to drive out that day.

He gets a three page spread in the front Section of The New York Times….now tell me, what stunt do I have to pull to get that kind of fame and attention?mercedes

My friend Dyane, finally on “The Huffington Post” (not 4 lack of trying, either)….a lesson 2 reach higher

I could not be prouder of my friend Dyane

In a lot of ways she reminds me of me. Not easily deterred. Dedicated to the point where people realize she’s not going away and they are going to have to deal with her and her message. So now, after seven tries, she finally is published by these people in a place called “The Blog” Let’s all visit and show our support by commenting, liking, bla bla so that we, the little people, can help one of our own get bigger5.

My 1st Huffington Postpartum Bipolar Article/Call for Support!


Greetings, and Happy Spring!!!

Thanks to those of you who read my last birthday post & for wishing me and Lucy a happy birthday! Your beautiful words made my day extra-special! Lucy was spoiled rotten…although what else is new?

On a separate note, some of you know I’m shameless when it comes to promoting postpartum bipolar disorder awareness.

I’d be SO GRATEFUL if you could take time to visit my debut Huffington Post article (this is the link) and “like” it, comment, & maybe share it with your  Facebook pals, oh my!

As far as comments are concerned, almost anything goes, i.e. – “I didn’t know about this form of bipolar – thanks for opening my eyes!” or whatever you like. I ask for your help because the more feedback I get, the better leverage I have with the editors to publish future posts about bipolar and postpartum-related issues. 

Sadly, you must have a Facebook account in order to comment & like, which is a big bummer, but if you use Facebook, you’d be putting it to noble use in the name of PPBD awareness! 😉 

Here’s the link and a BIG thanks to each & every one of you for your support! 



Obama, choosing South By SouthWest….Me too except I don’t have that choice anymore



I cracked up when I read Obama was being criticized for going to South By Southwest instead of the late Nancy Reagan’s funeral with his wife. But I heard that’s what tradition is. Also, now that this has become so technological and what’s digital is our very lives, it seems, it makes sense that he’s forward thinking and wants to hang out there, with people who want to hear what he has to say. He won’t command a huge audience as an influencer for very much longer. I’m jealous. There was a time where South By Southwest was a big alternative radio convention and brand new and more well known popular bands were playing their newest and finest. We were all expenses paid, I went a few times and also, a big one is CMJ, College Music Journal, I’m not sure they do it anymore. That’s how far I’ve gotten off track.

Something is wrong with my iTunes and all the thousands of songs I’ve bought over the last fifteen years, I can’t access them. It gives me an exclamation point and says the computer does not know where they are. I can’t burn a CD, listen to them, or anything. I have a suspicion someone relocated them while trying to do something else but it’s a huge problem and I really wish we could figure it out.

Sometimes life feels over my paygrade.

Shkreli piece & my response in Science Translational Medicine. If FDA is transparent, then answer this!

In the Senate Oversight committee and gov reform hearing last week, the guy they’re calling my favorite ‘bad boy,’ of big pharma, Martin Shkreli proved he is finally listening to someone other than his ego. He keeps taking the fifth when he is asked if he broke the law or did anything he thinks illegal. He’s listening to council. Then he goes home, goes on Twitter and tweets, and I quote ‘I can’t believe imbeciles like this represent us and run our government” He’s the one who bought exclusive rights to Duraprim, an ancient antiparasitic, got ‘Orphan’ reclassification and jacked the price 50 fold, to 750.00 a pill.


Why didn’t anyone mention the ‘Orphan’ protected status and how it is being used on old generics like the one I’m on for the Parkinson’s like side effect of psych meds called ‘Tardive Dyskinesia,’ considered and orphan disease? My med is 300 a month and all it is is a longer acting benzo like Klonopin that’s not rarely used. Now it’s out of reach and I’m shaking like a leaf from my disorder, trying to figure out for an article I’m writing whether or not pending ‘Orphan’ application are a matter of public record. I’m on more generics. Some of them may become ‘Orphan,’ now that older drugs with R&D well behind them are being afforded this protected status. So, FDA, Tim Conte, (who is the head of FDA’s Orphan Division and is on a viewable video claiming it’s only for NEW Drugs), here’s what I want to know: can consumers find out and have a ‘heads up’ on possible future price hikes on drugs they depend on or not?


Because if we knew in advance about possible future price hikes we could have a backup plan in place. I was caught offguard and it cost me several hundred dollars and in the meantime I’m going without. Allison