Friday, January 30, 2009

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!"


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.

No comments: