Handbook for recovering cretins

You may think that it would be difficult to find a way to make a simple diagnosis of Parkinson's Disease more devastating. But as we learned in the Handy Doctor's Guide of Dumb Things to Avoid Saying, a surprising number of doctors will take on that challenge.

The earlier post linked to above was fine as far as it went. But it didn't go as far as it should have. In an attempt to be more constructive, here are some thoughts about what can help both doctor and patient when it comes to the rough job of passing on a diagnosis of Parkinson's Disease.

Let me put on my PD Pollyana hat and propose that even the cretinous behavior exhibited in remarks like 'You have Parkinson's, but at your age, something else will kill you first' merely means that these people have nowhere to go but up. And we know that they're trainable. The ability to learn is what gets them through medical school. That and massive student loans.

So what are they supposed to say?.Put yourself in their place and you say... what? Hard as I try, I cannot come up with a way to tell someone that they have Parkinson's Disease that is going to make their day brighter and more minty-fresh.

Allow me to demonstrate. How about this? "Congratulations! You've got Parkinson's! WOO-HOOOOO!!!" I don't think so.

Let's try another tack. Misery loves company, so what about this? "Exciting news! You have something in common with Michel J. Fox, and Janet Reno!"

Right.

See? It's not so easy.

But let's also remember that for the diagnosed, it's likely some of the worst news they'll ever get. So here are some suggestions from Monsieur Pierre's Finishing School for Recovering Cretins. This is not an exhaustive list, if you have a point that I overlooked, please post a comment.


1. Offer credible hope

How do you do that? Let's step into the examining room and look at some examples:

WRONG: "Son, you're FUBAR."
RIGHT: "I'm afraid I must tell you you have Parkinson's Disease. Only a short time ago, this would have meant a drastically shorter life span and rapidly diminishing quality of life. But over the past decades new medicines and surgical techniques have emerged that can manage this disease with excellent results for quite some time. And there is more coming, both in new meds and even physical therapy techniques. With new imaging technology, we're learning more about the brain all the time. And the noble cause of stopping PD has never had a higher profile."


2. Emphasize that they are not helpless, and that behavior can affect the course of their symptoms

Let's take another peek in the examining room...

As our doctor pauses to catch breath after delivering the speech above, the stricken patient interjects "How long before I'm... I'm... a pitiful shell of my once vital self?"
WRONG: shrugs shoulders, stands mute with quizzical look.
RIGHT: It's impossible to say. Everyone's case of PD is different. Much depends on you. If you exercise, eat right and work to manage your disease you can go for a good long time."


3: Have additional information on hand
Most people have little state-of-the art knowledge about PD. Ignorance begets fear, fear begets helplessness. All the major PD organizations have pamphlets, booklets and videos on every aspect of PD they will send for free. It's a good idea to have this stuff on hand, or a least to give people a clue about where to find it. There are a number of informative Web Sites, like the American Parkinson's Disease Association or the
Parkinson's Disease Foundation. The Northwest Parkinson's Disease Foundation has a nice weekly update that anyone with a computer and an internet connection can subscribe to here.

4. Support your local support group

Support groups are full of people who are Parkinson's experts in a way you can only be if you wake up with the disease yourself every day of your life. Good groups share expertise and build morale like nothing else. It can be daunting to walk into a room full of people that are living your frightening future. But it can be even more powerful and inspiring to see people who have been afflicted for years or decades who cope with courage and grace.


5. One last no-no

A friend told me her doctor realized she had Parkinson's but withheld the diagnosis, reasoning that it was early in its course,and there was nothing she could do about it at that point. Surely there is no need for me to spell out what is wrong with this!

So that's the program. Not that hard, wouldn't you agree? It certainly isn't asking too much. Many people want their doctors to be gods. As much as we wish it, that's impossible. However, even as a mere human, you do have a choice. You can be a healer, or just a heel. Much of the difference hangs on small and uncomplicated acts.

I Only Pass Out in the Best Places

I am under strict orders from my son never to do this again. We were dining with family, and I was enjoying a beer and a well-prepared meal in a sunlit restaurant in exotic Kirkland. As conversation wafted around I became distracted by an odd sensation in my stomach, a feeling akin to what you might experience if you swallowed a live and angry badger.

My initial Badger Pacification Strategy (BPS) was denial. Skip this tack should this happen to you. It's useless. As the situation rapidly deteriorated, I adopted BPS #2: Lowering my head to the table in an attempt to control the mounting nausea. You might want to skip BPS #2 as well. No help.

It became clear that I was down to two choices. Release the "badger" in our cozy booth, (BPS #3) or make for the restroom and return the little guy to the wild via the porcelain porthole (BPS #4). Clearly there is no scenario under which #3 could be defined as successful, which left only a desperate attempt at #4.

Thinking quickly I enlisted Pam as my handler, the better to spread the inevitable blame when the doomed mission went grandly awry. I rose decisively to my feet, and then (I'm told) crumpled decisively to the floor (BPS #5)

Miraculously, BPS #5 worked great. At least on the badger. But one doesn't crumple to the floor in the middle of a restaurant discreetly. A hullabaloo followed. People were summoning help via their cell phones before I hit the carpet. When I came to, I looked up into a circle of unfamiliar and concerned faces. They assured me that the paramedics would arrive soon, and hovered close until they arrived.

I was still gathering my wits when the team showed. They lost no time in festooning me with wires connected to machines that read vital signs. I was feeling much better and after explaining about the hazards of rising too quickly when on Parkinson's medications, which can lower blood pressure and cause fainting, I managed to talk them out of taking me to the hospital.

This moment of helplessness paradoxically granted a measure of hope. We are bound to one another by our frailty. Confronted by my small catastrophe, strangers responded with swift compassion.

I wobbled out of the restaurant under my own power but with my family arrayed in close formation around me. As we wound our way to the door, I carried a new intimacy with the anonymous throng returning to their dinners.

The barriers had been breached, and as we left, it was possible to sense a common thought that clearly ran through the minds of many: "Damn, I hope I didn't order whatever HE had!"

"HOWYADOIN"?

I realize this is over the top, but even before my diagnosis, the question "How's it going?" used to plunge me into a swirling metaphysical struggle where the imperative to tell the truth collided with the imperative to be polite. Like most people, I went with politeness.

(We'll have a brief pause here while those of you with smart mouths hoot your disbelief. Are we through now? Good.)

This deference to courtesy came at a stiff personal cost. I had to bite back choice lines like "Oh, the usual quiet desperation, you?" Or another favorite, "Filled with fear and loathing." And let's not forget the cheery, optimistic "Clinging to sanity in a world gone mad."

The discovery that I have PD simultaneously validated those unspoken replies, and rendered them obsolete. A whole new army of unvarnished truths have to be beaten back. A few of my current favorites "Suffering an irreversible slow-motion brain injury, what's up with you?" Or, "Working hard, hardly working." Then there is the clinical "Oh, a little dystonic, bradykinetic, and depressed." Or when the meds are working "Adequately medicated, thanks!" Which lead me to what I have settled on as a reply that seems to satisfy both truth and courtesy: "Adequate, thanks."

For some reason, this usually elicits a laugh, but I have decided it's probably best not to ask why.

I know I am not alone in this. Anyone who has come up with an answer that solves this small but persistent problem in a tidy and honest stroke of inspiration is invited to post a reply.

Adequately,

Pete