The painful truth is that it took more than just being in the possession of the truth to motivate me to speak up and ask, "Why didn't you TELL me Parkinson's could affect my brain with depression and attention deficits? I lost a year of my life and my job because of your self-serving policy to inform me AFTER the fact!"

ANGER.  I ended my first blog entry below with, "Thus my activism began in anger at a system that I felt had betrayed me.  It has become just as much of a story of personal transformation as one that is transforming systems."

Anger is a terrific motivator, but one that is hugely damaging - to yourself and everyone around you.  I wrote this on Mother's Day, 2002:

Yikes!  I was working with a terrific psychologist schooled in PD; I was not ready to abandon the anger.  One day he said to me, "Carey, I'm not sure I can be of more help to you.  I would like you to read this book - keep it as long as you like - but do read it."   

He handed me The Art of Happiness by the Dalai Lama.  What the??!!

I had an encounter with a different doctor, a psychiatrist who said, "Yep - no doubt about it - you're angry!  Kind of like a postal worker - but instead of injuring others, you're killing yourself.  My best advice is rent a Margaret Cho video - you need a good laugh!"

I had the good sense to return the humor - wondering if she had ever heard the Indigo Girls' Don't Give that Girl a Gun.   But I was furious.  The medical world was abandoning me - there was to be no easy answer, no magic pill.  It was up to me - get happy, Girlfriend!  I had never felt so alone.

Fast forward to October 2005 - I returned the book to the psychologist, who I now recognized as an enlightened, compassionate, intelligent, courageous soul who had given me exactly what I had needed.  It had taken almost four years for me to come to that conclusion.

The Dalai Lama's most difficult lesson was that achieving a state of happiness is up to you.  It is not dependent upon external circumstances - it is a product of choice and a decision to seek a positive mind set and reject the negative.  You must work at being happy.

This did not seem fair.  My happiness had been stripped of me so suddenly by outside forces - why was it now up to me to struggle to find new happiness amid the destruction?

Looking back over the past four years, I can find no lightning bolt or turning point of self transformation.  It was, and still is, a journey of trial and error; of slowly realizing that the anger that had originally motivated was slowly destroying me from within, crippling my ability to even advocate for myself, and forcing me to choose another way.

While The Art of Happiness frames this story, another inspirational soul, John O'Donohue, also writes words that have caught my attention and influenced my life.  In language the Dalai Lama would find familar, John writes, 

"As with all great arrivals in the soul, (healing) comes from a direction that we often could neither predict nor anticipate ... Real suffering calls us home in the end to where our hearts will be happy, our energy clear, and our minds open and alive." ~ Eternal Echoes

Last October I spent a week on the Oregon Coast in retreat with John O'Donohue and 25 soulful "modern mystics."  This piece is the result of that experience, the culmination of tumultuous years of coming to terms with myself, and the role of activism in my life.

It's not over yet.

How can an Individual Activist begin to change the world?  Sometimes all it takes is stating the obvious for walls to begin to fall.  Kind of like telling the emperor he has no clothes.

An example of this phenomena is the basis for the movie "Good Night, and Good Luck."  Senator Joseph McCarthy could terrorize with increasingly outrageous charges of communist conspiracy as long as no one challenged him.  But once Edward R Murrow courageously called his bluff on network TV by simply saying what everyone knew was true, McCarthy's power was immediately undermined, leaving him vulnerable to further political pummeling and his eventual demise.  The film's director, George Clooney, said "this incident and time has been a passion of mine because it is one of the few times you could point to where broadcast journalism actually changed the world and people's minds."

Pushing the paradigm started in one moment for me when I bothered to say something out loud that was common, but silently kept, knowledge: Depression is a debilitating part of Parkinson's disease. The reason I was able to persistently press my case for mental health awareness is because I knew I was right; the facts were on my side - as well as anecdotal evidence.  Once spoken out loud, it seemed obvious - a resounding "duh!" echoed forth - and the world became a better place as people began to deal openly with previously hidden issues of mental health and PD.

So, I am a true believer in speaking up and out for the truth - because it works. This can be a terrifically hard thing to do or to learn to do - but this is why Zaadz exists - to provide a community of comfort and challenge; a place to exercise and practice the essential skills for changing the world!

Three years into my Parkinson's diagnosis I collapsed.  Not physically - not because of the tremor that marked my disease.  I collapsed emotionally and mentally, from depression, anxiety, and an inability to handle the concentration and multi-tasking my job demanded.  When I was finally able to drag myself into the doctor, she told me it was the PD - that it was more than physical; that my thinking could be affected; that depression could debilitate; that stress would make everything worse.

Nobody had bothered to tell me that three years ago.  Moreover, this information was deliberately withheld because medical professionals do not want to worry patients - they think telling us we might be depressed will depress us!

Up until now, denial was my greatest coping skill.  But I could deny no longer.  I began to talk to others with Parkinson's for the first time.  I discovered that my story was familiar to every single PWP (person with parkinson's) with whom I spoke.

I began to talk to health professionals.  They confirmed the details of my story.  Not one single professional denied the psychological, behavioral, and emotional symptoms of Parkinson's - or that they tried to hide these at diagnosis.

Obsessed by the desire to educate, I taught myself web design and flash video production.  The result, http://www.clognition.org/ - dedicated to the mental health aspects of PD, and several music videos including my "opus" - a short subject that is immediately understood by PWP's, scares their family members. and makes everybody laugh (even if uneasily).  I was determined no one should suffer as I had.

I picked up the phone and called the national American Parkinson's Disease Association young-onset center in Chicago and spoke to Director Susan Reese.  She asked me to send my story in writing.  In the meantime, she was trying to find a psychologist who would corroborate my experience and be willing to write about it.  Her search ended with Dr. Laura Marsh, psychiatrist and researcher at Johns Hopkins School of Medicine. 

The result was the Fall 2003 issue of the APDA young onset newsletter featuring for the first time information on mind and emotion, including articles written by me and Dr. Marsh.  In her editorial introduction, Susan said it was my persistance that got her attention; later, she said that no other newsletter had sparked as much positive feedback. 

Thus my activism began in anger at a system that I felt had betrayed me.  It has become just as much of a story of personal transformation as one that is transforming systems.

Hmmm.  First time.  The morning has been an explosion of news; a blinding rush of developments in the usually glacial world of Parkinson's politics that encompass health care policy, big pharma shenanigans, and medical research.

For years PD patients have been lobbying for a larger voice, a place at the table, an entrance to the arenas of decision making.  We seem to have reached critical mass. The first-ever Parkinson's World Congress (WPC), held last month in Washington DC provided the platform.  Welcoming the world, uber-PD Patient Michael J Fox gave an impassioned speech about the lack of research progress, the need for more scientific collaboration and a stronger emphasis on translational medicine in order to accelerate new therapies and cures for ALL diseases.  He reminded the stellar scientific audience about the reason for their work, saying, "In the end, this has to be about the patients. After all, isn’t that why we’re here? ...  Translating what we know about disease into cures is all about making connections — working together to lay tracks, and never losing sight of the destination. If we do this — and I am fully confident that we can — we can cure Parkinson’s disease within our lifetime. So I hope you have a good week — connect, learn, share and, if you get a chance, talk to a patient."

Believe me, we took advantage of the opportunity.  The WPC happened at a crucial time in our struggle to be heard.  In 2004, biotech goliath AMGEN pulled the plug on a new PD treatment in Phase II clinical trials.  Citing safety reasons, AMGEN was also worried about the bottom line.  Nevermind that patients improved and the research protocol was flawed.  Intrepid patients have dogged the GDNF story for months, through court battles, 60 Minutes, and relentless research that has proved to change many minds - but not the one that counts the most - AMGEN's.

So this morning we learn that several PD orgs are setting up meetings with patient advocates, giving us our first chance to voice our comments and concerns in conversations with those who hold our lives in their hands.  The hope is that these initial meetings will lead to the establishment of formal patient advisory boards that will institutionalize the process and provide a secure channel for ongoing conversation and opportunity for influence.

The impetus for the national PD orgs to meet with us is an outgrowth of the GDNF-AMGEN battle - one waged by patients who finally could not be ignored because we are in the possession of the critical ingredient - the truth.

Adding fuel to our fire was the appearance today of a second entry by Huffington Post blogger Kathleen Reardon.  Blogging last week on the WPC and the need for patient action to speed new research, Kathleen was blown away by the response and is keeping the story alive - and now his happily helping us take on Big Pharma.

I feel like this is the beginning of a new story - you don't know how hard it was and how long it took for the first one to be written.