Isolation and Parkinson's Disease, The hiding and the hidden

This is a reprint of  a blog post I wrote for the Northwest Parkinson's Disease Foundation. 

One of the biggest drawbacks of Parkinson’s Disease is the terrible potential it has to isolate an individual. Getting out of the house, engaging with the World is one of the things that make us human. Shut yourself away from the ebb and flow of human affairs, and your time here on Earth will likely be shorter, and more miserable than it otherwise would have been. Though it will seem longer, by far.

Studies have found that social interaction lessens depression, a common problem associated with Parkinson’s, and that interactions with family and friends increase mental stimulation. These, are well-recognized factors in their importance in coping with PD.

Unfortunately, in yet another sample of the thorough and twisted logic of Parkinson’s,  the disease and its many symptoms work against our healthy impulses to go out in public.

It’s hard to get out for physical reasons alone. We have difficulty moving, which is just the first barrier we must overcome. Then we have our inability to speak loudly and clearly. This can isolate a person effectively even if they do go out. It is demoralizing to attempt to contribute to a conversation, only to be ignored because you can’t muster the volume to get the attention of others. Further, we may be  embarrassed by a tremor, or by drooling. And the mental image of parading your shuffling gait in front of an audience, or gyrating wildly as you careen around a restaurant like a drunk, attempting to maintain your balance, is a serious deterrent to going out.

And then there is all the extra paraphernalia to wrangle, like canes or walkers, and God forbid you forget the pills that now must accompany you wherever you go.

But the biggest thing we have to carry out there is our vulnerability. The fact that we are sick and cannot hide it makes us uncomfortable, partly because it makes the rest of humanity uncomfortable. How? The fact is that if we are vulnerable, so is anyone, and everyone. Why else did Rush Limbaugh famously mock Michael J. Fox? Because Limbaugh is afraid. To belittle Fox is to minimize him as a threat, to put him in a different category, to deny his vulnerability is a shared vulnerability.

The uncomfortable truth is, we all do share that vulnerability. To defer to it by hiding ourselves away not only cuts us off from the rest of humanity, it cuts the rest of humanity off from us, and from the brutal reality that we represent. We are an important reminder to the rest of the race that all are subject to the whims of fortune. Until we can cure this disease, it can and will continue to mysteriously cut individuals out for suffering that carries no explanation or justification.

Humanity is in a position to do something about that. A cure can be found. It is just a matter of time and priorities. As long as the stricken lay low, we make it easier for the rest of the World to ignore our plight. By enabling others to ignore the disease, we come dangerously close to collaborating with it. Because as long as it is ignored, it will continue to claim more sufferers, slowly wring the joy from their lives, and extinguish them.

Your disease has been making you uncomfortable (to say the least!) long enough. Time to let it make someone else uncomfortable. Don’t go out for your benefit, much as it will benefit you. Do it for the rest of humanity. Do it for Rush.

Whoa, Nelly! Meeting this Saturday, Sept 16

There is a meeting orf (just for fun, I'm gpoing tp leave in all my typo's in this note.) the Anchorage Parkinson's Disease Support Group tomorrow, the 16th of Sept.For you stivcklers, the offictal start time is 3:30. Our topic will be an important new study just released on PD and diet. (Hnt: eat your fruits and vegetables!) got it" ? Good! See you tomorrow,

Peter

Parkinson's Palate, What Diet Should a PD Patient Pursue?

The Holy Grail of Parkinson's research is reversing and healing the damage the disease does. Short of that, and more immediately within our reach, is slowing it down. Ironically, the fact Parkinson's is slow-moving to begin with makes it difficult to tell whether your attempts to retard it are effective. So a just-released study, "Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression," that appeared in the journal Oxidative Medicine and Cellular Longevity, was met with excitement by the PD community. While there isn't any radical departure in direction, the study puts substantial additional weight behind the old recommendation: follow the Mediterranean Diet.

The study, led by Laurie K. Mischley of Bastyr University features a table that lists foods effective in slowing the disease, and foods that seem to speed it up. The authors point out the Mediterranean diet, known for its association with a lower risk of developing Parkinson's can now be looked on as a way not only to reduce the risk but too slow the disease progression, too.

What is the Mediterranean diet? Here is a simplified version adapted from Healthline that fits well with the advice from the study:

• Eat: Vegetables, fruits, nuts, seeds, legumes, potatoes, whole grains, herbs, turmeric, ginger, fish, seafood and extra virgin olive oil.
• Eat in moderation: Poultry, eggs,
• Eat only rarely: Red meat
• Don't eat: Sugar-sweetened beverages, added sugars, processed meat, refined grains, refined oils and other highly processed foods.

Also in the don't eat category: dairy. The study found "Ice cream, cheese, and yogurt intakes were associated with higher rates of PD progression (Table 2). Dairy has been repeatedly associated with PD incidence." You say "No yogurt? I thought that was as good way to keep the cultures in my gut healthy!" Granted, but you can replace that with other fermented foods, like pickles, kim chee, saurkraut, stink heads, kombucha or miso. There is a mammoth list of fermented foods here.

The authors had some unkind words about canned fruits and vegetables "Consumption of canned fruits and vegetables was a strong predictor of PD progression. Initially thought to be associated with socioeconomic status, the association remained after adjusting for income. Bisphenol A (BPA) is used extensively worldwide in the inner coating of food cans, and there is evidence that BPA contaminates foods stored in the cans. BPA is a well-established endocrine conductor associated with obesity, and more recent evidence suggests that it is an energy balance disruptor." Frozen fruits and vegetables were also found to be bad for people with PD, although the report offers no information on why this might be.

They also point to fried foods, soda, and beef as hastening PD progression. "Beef and pork, the most frequently consumed mammals in the Western diet, have several things in common, including a high-fat content and slow intestinal transit time. That intake of pork which was not statistically significantly associated with worse prognosis suggests that future research should be directed toward variables unique to beef, such as the higher iron content.

The authors had nothing to say on the health effects specific to PD of eating insects, the food of the future, so we'll just have to wait for that to be studied, But there is plenty of good advice  for what to eat in the present if you want to have a future. Bon appétit!

"Distractable Me" From the NWPF Community Blog

Here is a post I did for the Northwest Parkinson's Disease Foundation's  Community Blog, reposted with their permission. This was a piece I was a bit nervous about posting because the "meta" nature of the message seemed like it might elude some. But it seemed to go over just fine. Whew! For your reading pleasure, Off and On presents "Distractible Me"

Remember the good old days when Parkinson’s Disease was thought to be a problem centered in the substantia nigra, a tiny structure in the deep brain? Good times! We thought if we could just discipline this wayward little piece of our mind, we could solve the problem of Parkinson’s. Now we are sadder but wiser, aware of changes elsewhere in the brain, and beyond, that tell us the problem is more widespread than we assumed.

For example, the pre-frontal cortex, home of our “executive function” (ability to plan, organize, initiate, and regulate goal directed behavior) is degraded by Park… oh, excuse me, that’s my pill timer… I use the timer on my phone, it’s convenient and… hey! New message from Paul… haven’t heard from him in a dog’s age. Why did they have to make messenger a separate app? It’s… oh look! 17 new notifications! And this is a totally different Paul than the one I was thinking of. Who ARE these people anyway? As long as I’ve got the phone out, I should check my email, and WHOA!… There’s a woodpecker in the back yard! I should take a picture, they have such handsome plumage. That bold red, black and white combination is so classic… Damn! They always fly off before I can get the camera app booted up, and… LOOK at the TIME! 12:30! Lunch hour! But hang on a second, why is my pill case out? Oh, right. Timer went off, I was supposed to take a pill. Did I take it, or not? Better do a pill count and see if I can figure it out… OK… so there are five pills left and I normally have four by this time, so I forgot one. I guess we can assume it was the last one. Well, let’s see… I’m about a half hour late… take it now, and delay lunch to avoid any protein interaction? Or eat now and just tough out any freezing until the next scheduled dose? Better eat now. (wanders into kitchen, makes lunch, freezes up, festinates back to computer) Where was I? Oh yeah, not sure “teleological” is exactly the right word for what I want to say here, better look it up. Hmm. Having looked it up now I’m even less sure what it means. Well, as George Orwell put it, never use a fancy obscure word where a plain one will do. Although he used “George Orwell” instead of his real name, “Eric Blair” when “Eric Blair” would have done fine. But I guess Walt Whitman was right when he pointed out “A foolish consistency is the hobgoblin of a small mind.” What is a hobgoblin anyway? Is it any different from a regular goblin? If so, how? If not, why have a separate word for it? Better look that up as well. No! Must concentrate on the task at hand!… Which is…. What?… Oh yes,  writing about the debilitating nature of distractibility when one is dealing with PD. Although, given their distractible natures, I have to wonder if any of my fellow parkies will  actually read this far. Hmm, do I want to use the term “parkie”? Some people with Parkinson’s find it offensive, although why they should be offended by that when there is so much out there that is more offensive, you just wonder where they find the hours in a day to devote to... OMG!.. squirrel! SQUIRREL!!!!!!!!!… (Sound of breaking glass, thud of body hitting ground, running feet, angry scolding from indignant squirrel.)

Quiet, too quiet...

I was rarely labeled "Too quiet" before I was diagnosed with Parkinson's Disease. Since my diagnosis, it's been much easier for others to hear themselves think, to slip in a word edgewise, too make themselves heard over the dull roar. But a blogger is supposed to spout regularly, and often.

As a blogger, I've let you down. I wouldn't blame you if you've begun seeing other bloggers behind my back. Rendezvousing in No Tell Motels for a fix of obscure PD info, or a saucy-yet-thoughtful  opinion. Tawdry, yes. But still, understandable.

What is behind my increasingly sporadic posts to this page? Have I been deteriorating to the point where I can barely type? Have I run out of things to say? Has PD finally gotten the upper hand?

Quite the opposite. I've become such a notorious loudmouth that I am now blogging at the invitation of two other sites. Health Union, on their Parkinson's pages, and the Northwest Parkinson's Disease Foundation, on their Community Blog. But that doesn't mean I should neglect Off and On. So my apologies. I'll do better.