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.

Shivering Penguins! This blog is a year old!

"Troubles Overcome are Good to Tell" -
Italian Proverb, from the writing of Primo Levi

Yikes, this blog is now just over a year old! The first post went up January 19, 2008. In the following time we've looked at everything from the Greatest Parkinson's Love Story Ever Told, to some of the dumbest things doctors say, when delivering a diagnosis of Parkinson's Disease.

Since I installed a hit counter about two weeks into the project, "Off and On" had a total of 2,695 visits (only half of which were me checking for comments) from 66 countries and territories all around the World. There have been visits from every continent but Antarctica, where the penguins are all in denial "Tremor? Nah, I'm just shivering, you idiot."

Here is a sample of visits from unexpected locales tallied for the year by my hit counter: Israel (8 visits), Malaysia (7 visits), Singapore (7 visits), Turkey (6 visits), China (4 visits), and let's not forget Iran, Bangladesh, Belarus and Jamaica, with one visit each.

Wow. Parkinson's Disease: Bringing the world together.

I hope, dear reader, that this has been valuable to you. It has certainly helped me to cope. Writing is a sort of deliberate thinking. It is a focused exploration which simultaneously creates ideas and reveals them. When I try to explain my thoughts and feelings to you, I come to understand them better myself. Or at least, it feels that way.

Just as important, your comments and even your silent visits, (which are currently running between 5-15 a day) tell me that there is solidarity and understanding out there that reaches around the Globe. That is heartening. I'm sorry that you who read this were dragged into the struggle, but it is good to know we do not struggle alone

What does the future hold? Dangerous question, but I can go at least this far: More trouble and more telling. Because not only are troubles overcome good to tell, telling is part of the overcoming.

Handy Doctor's Guide of Stupid Things to Avoid Saying

Don't get me wrong, I trust and like my doctor. Otherwise I would find somebody else. But there is an appalling number of stupid and cruel remarks related to me over the past few years that fellow patients have heard from their doctors. These patients and their loved ones are often bitter about these thoughtless wounds, and as you read some of the remarks below, you will understand. (Note, these are paraphrased from the original sources.)

The reassuring physician, answering a patient's question about whether he would adjust to a new medication: 'You will be dead before your body gets used to it.'


The reassuring physician II: 'You have Parkinson's, but at your age something else will pick you off before it becomes a major problem.'


The careful observer: 'Come back next month, you are no worse than the last time I saw you.' In actuality the person in question was so much worse he was nearly immobile.


The blithe optimist: 'Let's give this new medication a try, there will be no side effects.' The patient suffered more from the new meds than from his Parkinson's Disease.

The cheery prophet, on being informed about a patient's positive mood and symptomatic improvement following exercise: 'That'll disappear in a few years.'

The gimlet-eyed skeptic: 'That's not a real tremor, you are making your leg do that.'

Others have told me of being given their diagnosis through a burst of laughter, of being given the shove test by several doctors without a word of explanation, and of being locked up by a crew at an emergency room, accused of taking drugs, and told that they were going to remain locked up until they were ready to tell what they had taken.

I am grateful for the hard work of smart, dedicated people who have mastered the techniques and knowledge that keep me functioning at the level that I maintain. I appreciate the difficulty of a general neurologist who must treat everything from migraines to MS. And I can imagine the chronic frustration that must come from being forced to manage the decline of people you wish you could cure. Throw in the many failings of the health care system as we know it here in the U.S. and I can see why both of my parents, one a surgeon and the other an anesthesiologist, discouraged their children from a career in medicine.

I grant all that. But it will take someone smarter than me to understand why people who are enduring what can't be changed should be subjected to additional pain that can be easily avoided.