Letter to an Old Friend With A Husband Newly Diagnosed With Parkinson's Disease

Hi Anni, Very sorry to hear of your husband's diagnosis. Parkinson's is terribly complex, and in spite of years of study, still not well understood. For that reason I don't have faith in one thing as the "silver bullet" to take this problem down. Not coconut milk nor Coq10. PD needs to be addressed holistically, with medicine exercise, therapy, diet, and stress reduction. The good news is that given a few breaks and some discipline, a person with PD can have excellent quality of life for decades.

As far as the idea that one food or supplement is somehow the missing link to good health, I have seen no evidence. As noted above PD is a complex problem that involves the interplay of genetics and environment, and even personal habits. For instance, the rate of Parkinson's Disease goes down where the rate of tobacco consumption goes up. The same is true of coffee. Given the documented health risks of tobacco, I haven't taken up smoking or chewing, but I do drink coffee with pleasure. However it's good to remember that there is not a proven causal link here, merely a shown correlation, Perhaps a side effect of PD is a low tolerance for lattes and cigars, hence the association.

 But as long as we are talking about correlations between Parkinson's and what we put in our bodies, I can identify two factors to consider that seem to have consensus among those who have studied this. The first is that PD has clearly been linked to pesticide exposure. So it makes sense to me to limit further contact with these poisons. (as my cousin the internist says "When you have a bruise you don't continue to hit the same spot over and over.") Hence, try to eat organic as much as possible. Second, the great Dave Heydrick, a neurologist who has PD, looked at all the studies etc. that he could find about nutrition and Parkinson's and found that the best way to eat for PD is to follow the Mediterranean diet. Not much red meat, get protein from fish, and big-time consumption of vegetables. Even if this were not good for PD it's sensible for your underlying health.

 Beyond diet, there is much that you can do to combat the progression of symptoms. Exercise in many forms is an exploding area of progress in the struggle of the individual against this disease. Everything from dance to bicycling to yoga seems to have its scientific adherants. This suggests to me that a variety of exercise makes sense, and I can testify that it certainly makes me feel better. And again even if it had no effect directly on PD, it is the sort of practice that will bolster one's underlying health, thus enabling one to cope more effectively with the disease. Also, exercise is a proven mood elevator. The benefits of that are obvious. 10 years into my diagnosis I still ski cross country, bicycle and hike.

There are exciting developmens in physical therapy happening as well. Two I will mention, the Lee Silverman speech therapy and the related Lee Silverman Big motion therapy have both been shown to make marked improvement in the areas of speech and movement. I can testify first hand to the efficacy of the voice program which can do wonders to restore speaking ability. I have heard good things from a friend who has done the movement training.

Last, stress is known to exacerbate the symptoms of Parkinson's Disease and may speed progression. Many of the already mentioned practices will help with this, but I would also add the practice of attending a support group. In adition to providing an atmosphere where one doesn't feel compelled to minimize or hide symptoms, a support group is a place where one can pick up tricks and current knowledge. There is more hope than ever of finding ways to work around Parkinson's Disease. If you guys can stay on top of the things that matter, the best is yet to come.

Take It In a Little Here, Let It Out a Bit There: Tweaking Tweaking Tweaking

Now begins my struggle with obsessive-compulsive disorder. The manuscript for the graphic novel needs a little sprucing up. I ran into a friend today and she advised me to put a time limit on how long I would torture the thing before I sent it to a publisher or agent. So I'll give myself a week. But where to begin? I know! The beginning. After living with the opening page for awhile, I began to find it lacked drama. Just to refresh your memory, here it is

See what I mean? It seems a bit abrupt and dull at the same time. So I split it in two, like so...

...which I think works much better. More motion, more drama. Now to redo every other page in the book.

Parkinson's Comic Manuscript Completed. Now For the Hard Part

I put on a burst of unparkinson's-like speed yesterday and finished the manuscript of "A Mixed Cursing" That was fun. Now begins the task of finding a way to get it published. There are a number of avenues as the publishing industry writhes and convulses with the changes wrought by that unbottled genie the World Wide Web. "Come into my parlor", said the spider to the fly... I will post news of the progress of the book-to-be as it develops.

In the meantime, this blog will return to its old self, albeit with (I hope) occasional excited notes about the progress of the manuscript to finished form and publication. Below are the three pages of the post-script for your feedback. Critical comments welcome! Bonus points to those who identify the references to Albert Einstein and Douglas Adams (click on images to enlarge.)

Hello friends,
Here is some stuff that you may want to devote your attention to in Feb. First there is a concise and easy-to-read rundown on the highlights of current PD research from Booth Gardener Neurologist Monique Giroux  here

There will be another darned informative telehealth session Monday February 13. This month's topic: "Laughter, depression, cognition and what can help in room 2401 at 1:00 p.m. in the Providence oncology wing on Piper St.  Go to the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your left.

And there will be a regular group meeting at 3:30 on February 18. Topic TBA.

Thanks, and GO TEAM PARKIE!

Peter

Another Panel From the Graphic Memoir: The Trouble With the Truth

Here is a problem I never considered as a reader of memoirs that I think about all the time as an aspiring author of one. What do you do when you come to a part of the story that casts you or anyone dear to you in an unflattering light? My wife is, believe me, a woman of great patience. When she saw this panel she objected that "It makes me look mad." I replied that it was my impression that she was often frustrated and a bit angry about my inability to speak clearly. She admitted this was true. I asked her if I should lie to my readers. She countered with a distinction "I get mad at this disease."

Why not show all the times she patiently listens while I struggle to articulate? Well, because a story is about conflict. As a storyteller, that is naturally what one is drawn to. Besides, although it may not seem like it, I'm really doing her a favor.

In addition to being true, her moment of impatience has the advantage of making her a more sympathetic character. First, it's hard to identify with a saint. Second, a person who perseveres in spite of anger or fear or whatever weakness you name,  is more human and likeable. It makes for a better story because it's true. But nobody, including me, wants to be reminded of times when they behaved in a way they didn't like.

As the teller of the story you cannot include everything. You can and must decide what to leave in and what to take out, what to draw and how to draw it. The temptation to juice things up or gloss over what you do not wish to confront is powerful. How well you avoid that temptation will be a large measure of the success and value of the work to the reader. But when it makes a loved one upset, it can't be blamed on a disease.  

A note, spell check is underlining nearly every word in the draft of this post. It's clearly on the fritz. I apologize for any spelling atrocities that I let slip.