Thursday, October 20, 2016

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."

Tuesday, October 18, 2016

ENDPAIN Interview: The Weirdness of Parkinson's Disease

The formidable Julia O'Malley interviewed me for the Los Angeles based media site Endpain. The interview came out almost too well. Elegant design, superb photos, and penetrating questions from Julia  make my replies seem almost coherent, and thoughtful.  You may judge for yourself here.

Tuesday, October 4, 2016

Anchorage Parkinson's Support Group Member Attends Her Own Celebration of Life

In one of the neatest tricks since Tom Sawyer attended his own burial service, Sherri Hadley, who is a member of our support group, went to her own celebration of life. The celebration took the form of a bittersweet and raucous Old-Time Fiddle jam. It was attended by musicians from across the state.

Sheri has a Parkinson's-like illness. The disease, Progressive Supranuclear Palsy is one of a small number of disorders similar to, but more virulent than "garden-variety" Parkinson's Disease. Among these other illnesses frequently mistaken for Parkinson's are Dementia with Lewy Bodies, and Multiple-System Atrophy. These diseases tend to progress more quickly than PD, and are resistant to the treatments that normally make possible a decent quality of life, at least for awhile, in normal Parkinson's.

Faced with the bleak outlook, Sheri did not retreat into denial. Instead she made a memory for herself and for her large circle of friends that will be a comfort to all who took part. The memory I will take with me is of a woman brave enough to not let imminent death rob her life of joy. Bravo, Sheri!

You can read more in Michelle Theriault-Boots story in The Alaska Dispatch News.