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September 26, 2011

From Fly Creek: A good sturdy mug

I’ve never told you about falling on top of the doctor. That means I’ve also fallen behind in keeping you posted on Parkinson’s progress. OK, an overdue update: The Progress is, well, progressing. Some days my balance is really good, not even calling for use of a cane.

Other days, it’s crazy. I reel as I walk, moving forward like crab, scuttling one way and then the other. And I fall down more than I used to, typically forward while walking, or sometimes toward left or right. To wit:

At a Quaker weekend earlier this month, I was standing in a pleasant crowd, waiting to enter the dining room.

Nothing was under way but good conversation. But I fell down. In mid-sentence, standing absolutely straight, I was suddenly falling to my right without the slightest instinctual reaction to raise an arm to break the fall.

Three Friends grabbed me before I whacked head and shoulders on the bottom of a staircase, and they stood me up. I felt like a fool but was unhurt. That’s the way it can happen.

It was a bit different, though, when I fell on top of the doctor. I still feel bad about that, but not guilty. She asked for it, damn it!

As my splendid Bassett neurologist has helped Anne and me get a closer understanding of my state, we’ve been referred for several specialized motion disorder clinics. We’ve been twice to Johns Hopkins’ Dr. Zoltan Mari, a really big dog in the field, who said that Bassett was on exactly the right track, but that my symptoms would have to “mature” more before there could be an exact diagnosis.

We’ve been several times to Albany Med, and once down to the City to Columbia Med. That’s where I fell on the doc.

I liked her as soon as she came bustling down the hall towards us. Short, no-nonsense, she seemed the very archetype of a NYC medical professional. When she began to talk, it was clear that  she was very sharp and hadalready analyzed closely all the materials sent down from Bassett and Albany Med. Her examination of me was perfunctory, pretty much just a few taps with a rubber mallet and a rotating of wrists and elbows to check for “ratcheting.”

No questions at all about the symptoms that are not physically evident, ones that every member of our support group confirms are part and parcel of their condition.

“Let’s go out in the hallway,”  the doctor said. “I want towatch your walk and then  test your balance.” I dutifullywalked the length of the hall and back, and then she stood me sideways. “I’m going to stand behind you and pull you back by your shoulders. You’re going to resist the pull as best as you can.”

Whoa! I explained that I have no balance control in that direction, that on stairs I have to cling to the banister and lean forward for fear of toppling backward. But she was already behind me.

“Are you ready?” she said, and tugged firmly. And I toppled backward. Now, I’m about six feet tall and just over200. She’s around 5-feet four and probably weighs 130. I slammed her back against the wall.

She did not take it well. Pushing me back to my feet, she growled angrily, “I have a bad back, and now I have to go take a Tylenol!” She stalked off down the hall.

Anne and I looked at one another and then went to sit meekly back in the examining room. When the doc returned, the consult ended abruptly.

“Look,” she said, “I don’t see Parkinson’s Disease here. You don’t have any of the classic physical symptoms except for dry skin over your eyebrows. Maybe you should seek psychiatric help.”

This was breathtaking. I have great respect for psychiatry and, who knows?

Perhaps there is a psychological dimension to my condition — at very least as effect, if not contributing cause. But the doc’s dismissal of several years of careful observation by skilled colleagues struck me as unfair, wrong.

Anne and I thanked her and left. As we walked down the hall, we held hands, both feeling we probably wouldn’t be coming back there. But then I realized and said something very important.

“You know, we’ve been going to these consults, trying to get a specific name for what’s going on in me. Well, we don’t need a name. We’re in great hands at Bassett and maybe should just follow the Hopkins doc’s prediction. As symptoms mature, a diagnosis will follow.” And then I added something that I’ve been living by, ever since.

“I’m not going to carry myself around like a bone china cup on a saucer, scared that I’m going to drop and shatter. No more! I’m going to be a good sturdy mug, stoneware, the kind with room to get three fingers gripped through the handle. That’s the way I’m going to carry myself!”

And so I have, ever since.

And that wonderful change, not in condition but attitude, came because I fell on the doc! So I’m grateful and hope her back’s just fine. And maybe she learned something from our encounter. Not about me, but about herself.

I guess that one reason that I haven’t been keeping you posted on Parkinsonism and me is that I’ve been wrapped up in finishing “Wobbling Home,” a book on the subject. It’s out now, and, to my shock, is already selling in Canada and Great Britain. That’s the way of modern publishing.

One Friday, Sept. 23, (tomorow!) Bassett Healthcare’s Neurology Department is sponsoring a second launch for “Wobbling Home.” It will run from 4:30 to 6 pm in the lobby of the Clinic Building facing River Street.

The launch is meant to highlight the book for Bassett’s own personnel, but the general public is welcome, too.

There’ll be refreshments and music from Katie Boardman’s dulcimer. You’re all invited!

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