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.

Monday, January 26, 2009

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.

Friday, January 16, 2009

Meeting the 17th

Sorry for the late post, I was out of town having my head examined. We will meet Saturday according to the ancient and immutable practices of our order, the Most High Anchorage Parkinson's Disease Support Group. 1:00 The Anchorage Senior Center. 1300 E. 19th St.

See you then,


Grand Elk of the Order of the Sequined Scepter, Knight of the Substantia Nigra, Servant of the Sub-Thalmic Nucleus, jr.

Tuesday, January 13, 2009

He knew whereof he spoke

A vignette. Flashback six years. After avoiding going to a support group for months after my initial diagnosis, I have been lured to a meeting to see a speaker. I walk in and find a seat next to the very thing that has been keeping me away: A scary old guy with an advanced case of PD. The SOGWAPD, on learning that I too had Parkinson's, slowly leaned my way and said


To which I could only reply "what?"

He patiently leaned my way again and repeated


To which I had to repeat "what?'"

At this his wife intervened and translated

"He said 'Don't wait to get speech therapy' "

I didn't

Wednesday, January 7, 2009

New Study on Deep Brain Stimulation finds big improvement and some risk

Here is the essence of a new study on DBS just released:

ScienceDaily (Jan. 6, 2009) — Patients with advanced Parkinson disease (PD) who received deep brain stimulation treatment had more improvement in movement skills and quality of life after six months than patients who received other medical therapy, but also had a higher risk of a serious adverse events, according to a new study. (To read the entire story, look here)

This was brought to my attention by Roberta Greenberg, who is part of a DBS team in Southern California. I want to share a comment from her about the results:

"What a stunning statistic….71% improvement in motor symptoms and QOL for DBS patients vs. 32% for medical therapy patients. Those of us on the DBS side have been trying to tell the medical community this for the past decade, but have had no verifiable, quantifiable data to back up these claims….just our anecdotal observations of our own patient populations. But now….the data has arrived. WooHoo!!

The risk profile in the study is much higher than what I’ve seen. I think that’s probably because the study started in 2002 and surgical techniques were much more crude then. In my experience, the incidence of infection, bleeds, etc has been less than 2%. I think that’s the norm now. We’re so much better at it now than we were back in 2002/2003. The dark ages of DBS. I wish they had chronologically compared complications in the study…but like I said, I’m grateful that they finally got the darn thing published!"

One unmentioned benefit: After the procedure, friends will call you "Cyber Boy".

Sunday, January 4, 2009

Build your Parkinson' Word Power, Second in a series

Parkinson's Disease has a fiendish knack for coming up with ironic ways to torment those of us it afflicts. For instance, the disease brings with it an exciting array of new and intriguing words. But at the same time it deprives patients of their ability to speak. What's the point of learning a two-dollar word like "dyskinesia" if you don't get to drop it into a conversation? Unfair! Especially when we're so adept at dropping other things.

(Aside: A month or so ago, while bagging frozen dog-doo in the back yard I almost dropped droppings, which would have made them "redroppings" but that's another story.)

There's no time to lose! We need to use these words early and often. Words like "bradykinesia", which is the term for the slowness which characterizes the movement of everyday persons with PD. It is derived from the Greek word kinÄ“tikos, "one who puts in motion” combined with "brady", which means slow. And that's the way we all became the Bradykinesia Bunch.

How about the aforementioned "dyskinesia"? This is the term that applies to the snake-like dance movements that we perform involuntarily when we overreact to Sinemit. On a good Sinemit buzz I often look like a deputy from Monty Python's Ministry of Silly Walks. Which if it were named by the same people who come up with terms to describe PD-related matters would be the "Ministry of Jocular Gait-Disturbance."

"Sinemit?" What's that? It is the trade name for the most effective medication for PD, levedopa combined with carbidopa. Levedopa is transformed to dopamine by the brain, which helps compensate for the inability of PD patients to make adequate amounts of the critical neurotransmitter themselves.

Unfortunately, the body cannot take in straight levedopa in the quantity that is needed to help control symptoms. Ingesting the required amount straight makes people sick, and they end up sending it back from their stomachs the way it came in.

The solution is to combine the levedopa with carbidopa which keeps the body from reacting so violently, so we don't emit our pills. The word was coined by abbreviating the Latin "sine" which means "without" to "sin" and adding the word "emit" which in this context means to vomit. So when you you ask your pharmacist for Sinemit, you're requesting a batch of "No Vomit". A small price to pay to avoid a sin of emission.

We'll dissect more Parkinson's words on our next edition of Build your Parkinson's word power. Stay tuned and talk loudly.

Note: the first in this series can be found here.