Optimism and entanglement, My Changing view of Parkinson's Disease

Parkinson's Disease is considered rare. But most of us carry a vague mental picture of it, or more precisely, its effects. This picture centers on the brain and usually includes uncontrollable shaking, drooling, gait impairment and weakness. What's more these effects are progressive, disabling and incurable. Aside from this, the other thing people know about Parkinson's is it's a disease of the elderly.

That was roughly the mental picture I had when I was handed my diagnosis in 2002. Bang went the illusion that youth was a bulwark against PD. I was 43, much "too young:" to have Parkinson's. This rude shock was just one of many changes to the picture I have of PD 14 years after diagnosis.

First, yes, Parkinson's is a brain disease, but it is more than a malfunction in the tiny part of your brain where the dopamine that tells muscles how to move is made. We now know it also affects the motor cortex and the prefrontal cortex, where it has effects beyond movement problems. This never-tiring disease also involves the body beyond the brain, afflicting those who have it with constipation, loss of sense of smell, and sleep disturbance a decade before the appearance of motor problems most commonly associated with the disorder.

Which brings up a whole class of symptoms that were, for the most part, downplayed. These are non-motor symptoms. There is a raft of them, but perhaps the most significant are depression and cognitive decline. Can I get an oy vey?

On top of these underappreciated non-motor symptoms is a boatload of motor complications that add to the many miseries of Parkinson's. Miseries of which I was blissfully unaware. Suffice it to say that PD not only fucks you up, it fucks you up in great detail. Like a jagged coastline, the closer you look at it, the more of it there seems to be. Oy. Vey.

In general, my perception has moved from terribly oversimplified to a realization that PD is fiendishly complex. Yet I am now far more optimistic than I was 14 years ago about the prospects for PD patients to live fulfilling, meaningful and dignified lives.

What is my basis for this outlook? Do I have some inside information on a cure around the corner? I do not. Nobody knows when the longed-for cure will finally make its appearance. I doubt it will be in the next few years, As I wrote above, PD is terribly complex. The cure hasn't been found yet because it's hard to cure. The likelihood that a simple fix, let alone a complex one, will be found in time for me, now two years shy of 60 years old, seems small.

But consider: I've lived the last 14 years, not without loss, but with fundamental quality of life largely intact. There are unquestionably things I have given up. I rarely drive anymore. I have found myself looking over at the last minute and avoiding disaster too many times to be confident behind the wheel. I would dearly love to be unchained from the pill routine that I must maintain to approximate normal. And don't ask about my ability to play guitar and sing.

So, despair, right? No. After 14 years, a bit of brain surgery, a devotion to exercise, and a simplification of life following the loss of my wonderful but stressful job, my experience leads me to believe with a bit of luck, some discipline and maybe a bit more luck, a person using the information and interventions we now have available can live a life that is full and rewarding.  I know this is possible, because I live it. Maybe not full in the way you expected. But, to quote John Lennon, "Life is what happens while you are making other plans."

Highlights of The Inland Northwest Hope for Parkinson's Conference (Part Four)

The Keynote address was delivered by former Spokane neurologist Anthony Santiago. Tremendously popular with local patients, he was credited by several people I talked to for the high turnout at the conference. He walked vigorously up and down the stage as he went through his PowerPoint slides. He began by explicitly addressing the complexity of Parkinson's Disease, and by explaining that PD is not a dopamine-centered disorder. In fact, the substantia  nigra, where the brain manufactures dopamine is one of the final stops of this disease, PD is present in the gut and olfactory systems years before it begins its mischief in the motor center of the brain. For this reason, mere dopamine treatment is neither sufficient, nor efficient in treating the entire disease. 

Dr. Santiago offered a number of observations of interest. Among them were:  

-treated Parkinson's Disease is not fatal

 - The idea of postponing any dopamine-related therapy is based on myth, and leads to lesser quality of life

-In fact, the earlier treatment is introduced, the better patients do.


Although his talk was entitled "Dopamine Replacement Therapies" the most interesting part was when he talked about new medications that look beyond dopamine to other chemicals that contribute to Parkinson's miseries. He mentioned Addex, still at the trial stage, which aims at the substance glutamate. Addex acts on a receptor that that causes dyskinesia, allowing more on time with less excess movement.

In some ways Dr. Santiago summed up the conference with his emphasis on the complexity of Parkinson's, and pointed the way forward by talking about looking beyond the narrow focus on dopamine-centered treatments. While acknowledging that complexity, he also embodied the spirit of hope and optimism that were at the core of this event. Certainly the reach and infernally tangled nature of Parkinson's disease has never been clearer. But until a problem is clear, how can you hope to resolve it? By that light, we're much closer to where we need to go than we were ten years ago.

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A note on these posts about the Inland Hope Conference: These reports are based on my notes, and reflect my biases and abilities to make accurate recordings of the event as I experienced it. Corrections, questions or disputes about facts or their interpretation are welcome. Please post with civility in the comments section.