Monday, May 26, 2008

The best advice you'll ever ignore

If you could ask a smart, well-trained Parkinson's Disease specialist one question, What would it be? I was in a position to do that recently thanks to my friend Dr. Mary DeMers, who arranged for Pam and me to attend a talk from Dr. Stewart Isaacson, Director of a movement disorders clinic in Boca Raton. Dr. Isaacson was in town to educate the local medical community about developments in Parkinson's care.

As the designated Parkie, I wondered how to get the most bang for my question buck. I wanted something simple and powerful that I could take back to my support group. So I asked something along the lines of: "What is the one thing that your patients could do to cope better with PD that they don't do?"

Without hesitation, the doctor shot back an answer. I expected a reply that might have something to do with managing our pills, or informing ourselves about our disease. Nope. His reply was one word.

What he said was...

(Are you ready?)

What he said was....

(Got a pencil? you may want to write this down!)

What he said was...

(and I quote)

What he said was...

(WARNING: You're not going to like this.)

What he said was....

(OK, here it is.)

What he said was: "Exercise."

Wednesday, May 21, 2008

Encounter with the supreme identity thief

Remember the "Me Decade"? That's what writer Tom Wolfe christened the 1970's . It was fashionable at that time to attempt to "find yourself". This was a common pursuit of the day, and a weird one. It conjures the idea of some tragic mix-up in the maternity ward in which your true self went home with the wrong family and then moved across the country without leaving a forwarding address.

Eventually it would fall to the strong and the brave to go out and track their fugitive self down, like an escaped con. As with any great quest, this one was fraught with difficulties. It's a given that your real self would be found somewhere more exciting and exotic than wherever you were at the time, but where? And how would you know when you found your true self? What if you found somebody else's true self and mistook it for your own? You might live the rest of your life as someone else, and never know. Which for some might not be a bad idea.

Most people gave up or got over it by the mid eighties. And it was never much of a problem for me. I always defined myself as an Alaskan, and a cartoonist, and later expanded into husband and father. For the most part, what I did was who I was.

Then came Parkinson's Disease, the identity thief supreme. I was a guitar player who didn't play the guitar, a cartoonist who was struggling to draw, a father who was too tired to cook or to even stay up and share a movie, a husband who was cranky and listless. (See my pal, the ogre here)

"Finding yourself" seems like a foolish game. Losing yourself is terrifying.

Eventually diagnosis and medication restored much of my original drive and personality. But Parkinson's is a moving target, and medication only approximates what my friend Dr. David Heydrick calls "The exquisite precision" of the dopamine controls of the human brain. And as we know too well, the medication eventually becomes as problematic as the disease.

But, for now, the person I think of as the real me, does glint out occasionally and briefly, from between the manic, nattering chatterbox I am at the crest of my dose and the semi-paralyzed zombie I become at the ebb. Like a canny performer, he always disappears before wearing out his welcome, leaving Chatterbox and Zombie Man in a state of anticipation about the next appearance .

The question isn't "Who am I?" or "Where am I?" It's "When am I?"

Wednesday, May 14, 2008

Meeting the 17th

Hey everybody, this week's meeting snuck up on me, but, yes, we will meet at the Senior Center this Saturday, the 17th of May at 1:00 p.m. Program undetermined at this moment, but give me a little time and I'll gin something up.

See you then,


Tuesday, May 6, 2008

Would you like a shot of adrenalin with that?

When I was a teen, I thought my Dad was an idiot to bicycle to work. For one thing BIKE is to ANCHORAGE DRIVER exactly what RED CAPE is to BULL. Ask my son. More to the point Dad owned a sleek emerald Datsun 240 z sports car that not only looked fast standing still, but also could fit my sister, her 'cello, my sister's friend Leslie, and Leslie's viola, with room left over for Dad to drive.

Dad would forsake all this for the hard seat of his 12-speed, pedaling off to the hospital at all hours in the long subarctic twilight of summer.

Sadly his idiocy seems to have been passed down to me, in an even more virulent form. As I ride to work in the morning, the soundtrack is the rhythmic rattle of my medication. So in addition to cyclist=red cape, we have a sporadically spastic moron with compromised balance aboard a two wheeled contraption that shouldn't even work for a healthy person.

My neurologist has told me twice that the physics of cycling are not understood, and in fact, that it shouldn't be possible. That's incentive enough for me right there. For some reason, I experience a better sense of balance aboard my bike than afoot. I am more likely to lose my balance putting on my socks than pedaling my way to work. I feel trapped in a car this time of year. On a bike, I'm free.

There are times though, when I think twice about the wisdom of this habit. Let's replay the phone call I made to my wife shortly after leaving the house yesterday.

Pam: (groggily) Hello?

Peter: Hi, I'm at turn-off for the Science center, There's a BIG (Expletive deleted) BLACK BEAR down the road bank and across the pond.

Pam: (Alert) Should I come get you?

Peter: No, I'm leaving RIGHT NOW.

There were plenty of cars and people around, I wasn't that worried. The real moment of terror for the day was about twenty five minutes later, two blocks from work. An enraged Yorkshire Terrier/wolverine cross chased me at top speed (for both of us) a good 500 feet. Less dangerous than a black bear, you say? Maybe, But much more inclined to bite!

Sunday, May 4, 2008

Coming Event: Dr. Susie Ro to give patient seminar

Hey Folks mark your calendars for THURSDAY JUNE 19th, when Dr. Susie Ro will present an educational program on non-motor symptoms of Parkinson's Disease. Dr. Ro practices at Swedish Hospital in Seattle. To make reservations, email, or call 425-443-8269

Registration begins at 11:00 a.m., Lunch will be provided.

This event made possible by The American Parkinson's Disease Association and Teva Neuroscience