Time to Take Your Diet Bat-Free

Finally some good news for those searching for ways to avoid Parkinson's Disease that are simple, within our control and do not involve forced exercise. It's time to take your diet bat-free. Viartis Parkinson's News reports that the incidence of Parkinson's Disease in the Chamarro people of the Marianas Islands correlates with the consumption of fruit bats. The islanders enjoy the bats as a delicacy on special occasions the way North Americans might eat turkey. (I know what you're thinking, but have you ever looked at a turkey? They are at least as ugly as a fruit bat.)

According to Viartis "It is thought that the Chamorro people develop the symptoms by eating a species of Flying Fox called the Mariana Fruit Bat. The Mariana Fruit Bats consume large quantities of neurotoxic cycad seeds. As the number of Mariana Fruit Bats has declined so has the illness. Eating these bats is a centuries old tradition amongst the Chamorro people."

Having warned us not to eat the leathery-winged little fly-by-nights, the article helpfully goes on to give tips on how they are prepared. "Served at weddings, fiestas, and birthdays, the etiquette of bat-eating and preparation involves rinsing off the outside of the animal like you would a cucumber and then tossing it into boiling water. The bats are then served whole in coconut milk and are consumed in their entirety."

One can only imagine how bad the situation would be if these creatures were a staple of the American diet. With our propensity for super-sizing and mass merchandising it would only be a matter of time before you could pick up a Bucket-o-Bats from KFB (the Colonel's secret recipe) or maybe some extra-spicy Buffalo Bat Wings to chow down on while watching the big game. Parkinson's Disease would be an epic epidemic and the bats would be even more endangered than they are now.

The bat-free diet. Avoid PD and be green at the same time. What's not to like?

Tracking Doug: In Spite of Parkinson's Disease, Cyclist Bahniuk near to 900 Mile Goal (Map updated 8-6)

Sources: Wikitravel, Doug's Wild Ride Blog. Click to enlarge


For those of you following the adventures of cyclist-with-Parkinson's Disease Doug Bahniuk at a safe distance, Here is a rough location based on a phone conversation. Doug is in Wasilla. We expect him Sunday. You can follow Doug on twitter and on his blog. Go Doug!

Announcing a New Virtual Gathering Place For Isolated Alaskans With Parkinson' s Disease

It bugs me that there are undoubtedly Alaskans out there with Parkinson's Disease who have no support group nor the ability to travel or live where there is one. As far as I know, the only group is in Anchorage. (Is there some group out there I do not know about? I would love to be corrected about this!)

As an experimental attempt to get at this problem I have created a new facebook page. So you're off in a remote corner of Alaska and dealing with Parkinson's Disease? This is the page for you. Post your questions and we'll try to get answers. Let us know where you are so that you can connect with others in your area. 

Come on in, the stove is warm, and so is the welcome.

Alaska Parkinson's events for July

Hello one and all,

here is what's on for July:

Monday July 11 at  1:00 p.m. Parkinson's Telehealth presentation in room 2401 in the Providence oncology wing. This will be a talk with neurologist Susuie Ro  about PD, sleep and fatigue, and what to do about it.

Saturday July 16 Our regular meeting will be a talk based on notes I obtained at a recent PD conference outside.

I hope your Summer is going well.

Onward.


Peter

Scariest Word in the English Language: Yes

"No" is the place of safety. Barricaded from the world by this tiny word one can find respite from shouldering the burden of Parkinson's Disease and stooping under its weight in front of others. "No" will spare you scorn and pity. It will spare you the effort of getting strangers to understand you. It will spare you the anxiety of being caught by a freezing episode in public. It will spare you another performance of "The Bladder Dance" as you attempt to stifle the distress signals that a load of two tablespoons now causes that implacable thug of an internal organ.

The advantages are clear. "No" keeps you out of trouble. With so much to recommend it (it's even short and easy to pronounce) one is tempted to rely on it exclusively. No problem. No worries.  Alas,  in the never-ending balancing act that is living with Parkinson's Disease it's easy to overdo "No". No fair!

Unfortunately once you decide you need an alternative, you quickly end up at "yes", with all the stress and storm that comes with it. "Yes" is commitment, initiative, creativity, yes is work.

With Parkinson's disease, just getting up in the morning is work. Why should we pile more work on top of  the difficulties we experience with tasks of everyday living? Well, because life goes on after we have finally managed to get our shirts buttoned. To rely on "no" is to become one of the living dead, to play right into the hands of Parkinson's Disease. And, as you may have noticed, Parkinson's does not have our best interests at heart. Saying yes is one more way of denying PD a chance to reach into your life with its cold, dead fingers.

Why is all this on my mind? Recently I was invited to become one of the hosts on the local public radio program "Hometown". As one of four rotating hosts the job is to come up with monthly show topics and guests,  to interview guests live on the radio, take calls and read email questions, along with other tasks too tedious and trivial to mention.

I did a quick inventory of my radio skills and assets. Negligible radio experience? Check. Difficulty speaking clearly? Check. Impaired  multitasking skills? Likely.  All the leading indicators pointed emphatically towards "no".

I said yes.

Theoretically, I can finesse the above  problems, or they wouldn't have asked me, right? What is the worst that could happen? I mean, besides having to do the bladder dance in the studio very quietly while quizzing a guest on the finer points of the municipal code?  I guess the worst can be summed up in the word "Failure".  And I'd rather be a radio failure than a successful nay-saying member of the living dead.

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Hometown Alaska airs on the 13th of July at two on KSKA, fm 91.1 We'll be talking about Alaskans and social media. Your calls welcome, the less I talk, the better.

"I Am Crushed" Weeks Before 900 Mile Ride to Raise Parkinson's Awareness, Rider Doug Bahniuk's Bike Stolen

Doug Bahniuk relished the idea of riding his bicycle through 900 miles of remote Alaska. This would be a rugged trip for any healthy bike nut but Doug is a bike nut diagnosed with Parkinsons Disease. He planned to use the trip to raise awareness of what those who suffer from PD are capable of. Then some thief stole the bike he had been training on and customizing for the 900 miles of bad road between Alaska's North Slope and the city of Anchorage.

Doug brings a certain brio, even bravado to his adventures. In a recent interview with Off and On, he scoffed at the tribulations that his proposed ride could have in store " I've learned to shrug it off, not feel sorry for myself, and concentrate on what I have to do. And I remember to feel joy. When all those things happen, I remind myself to feel pride, to enjoy the beauty, to enjoy the rain. I tell myself that I'm a tough SOB and I challenge the Gods to bring it on."

That's vintage Bahniuk, which makes this from his recent post on the theft of his bicycle seem especially poignant "It was gone. Stolen. I am crushed."

What can you do to help? Well, you could do what I did. Go to the donation page of the Davis Phinney Foundation, designated beneficiary of the ride, and drop a dime on Doug. Then fire them off a note explaining what inspired your donation. It doesn't have to be much, my guess is that any show of support now will pay big dividends to Doug's morale. We can't give Doug his bike back, but we can restore some of the faith in humanity the thief stole along with it.

The Re-Animation of James Tim Walker

Parkinson's disease wants to take everything you ever worked at. Everything. It wants skills you mastered so long ago, you can't remember the heart and soul you put into acquiring them. It wants skills so basic that you assume that they will always be a part of you. To walk, to speak, to feed yourself, to stand without toppling are just givens of being human that most of us have down cold by the time we are ready for kindergarten. Parkinson's wants all that.

But before it takes the essentials of what we normally think we all share, Parkinson's Disease wants to hollow out all the things that make you the particular human that you are, that you have shaped yourself into. It wants to take the career you have chosen. It wants the ways you play and the time you volunteer to the causes you honor. This jealous disease demands you see less of your friends, and does its utmost to push family away. It goes to bed with you each night and gets up with you each morning, jealous, and zealous.

How do you tell this disease "no" when it has crept silently into every cell of your body and settled into every sinew? To defy such a thorough occupier you must catch it off guard. To surprise Parkinson's you must surprise yourself. You must re-imagine yourself to hold paradoxically what you can. Which brings us to Tim Walker.

Tim fell in love with cartooning early and passionately. He was good enough and disciplined enough to work at a number of well-known animation studios, from Bakshi to Disney. Over the years Tim worked with classic characters of American animation, including Scrooge McDuck, Tom and Jerry, Sylvester and Tweety, and The Flintstones. He was fortunate enough to live his childhood dream, and to find that dream fulfilling.

When Parkinson's came to call on Tim, it predominated on his right side. His drawing side. The hand most directly connected to his heart, the hand with which he built his career and his identity, seemed to rebel. It refused the simplest request, disobeyed the most urgent commands. Cornered by his disease, there was no way out but through the wall.

So Tim retaught himself to draw and write left-handed. You can verify for yourself how tough this is by trying it. I did and you can see the result above. Imagine the initial frustration he must have felt as neither hand would perform as he knew it should. No imagination is needed to see the joy he felt when he regained mastery, it is evident in the book of drawings he has completed since. (Tim generously sent me a copy.) The drawings are spontaneous and fluid, the last thing they say to their viewers is Parkinson's Disease. But follow them back far enough and you'll find a wall, a wall with a Tim-shaped hole in it.

Questionable Taste: Culinary Adventures With the Parkie Chef

I've never been an adventurous eater. Aside from the usual dirt as a child, unintentional swallowing of bugs while bicycling, and rare instances of exoticism (chocolate covered ants anyone?) I've only eaten off the beaten path when forced to by circumstances beyond my control.

When obliged to improvise or experiment I've come up with some memorable meals. The kind of memories people drink to forget. Desperately short of food once while backpacking through Europe I found an ancient packet of plain, unsalted oatmeal at the bottom of my pack. Cooked up, it was bland in a hideous way that rendered it nearly inedible. Solution: Chef Pierre boldly mixed in an equally ancient packet of freeze-dried French onion soup. When added to the oatmeal it produced a savory, zesty creation even less edible than the plain oatmeal.

Since then I've developed a small but dependable repertoire of successful recipes that are nourishing and tasty. At least I believe they are tasty. Parkinson's can destroy our ability to smell. Taste depends greatly on smell. Without much ability to smell, the sense of taste is significantly dulled.

As far as the things that I've lost to PD go, this one is among the least troubling. It's much tougher to cope with the impact on my ability to draw and to play music and to do a host of other things I'll not bore you with here.

But there is one important symbolic aspect of food I still try to cling to. Cooking for someone is a demonstration of affection that bypasses words. To prepare food in a way that promotes health, gives pleasure, and requires us to take time to do it right sends a primordial message about how much we value those that we cook for.

I still try to practice this unspoken language of caring. But some of the messages I send can be mixed at best. What is your beloved mate to think when she comes home to your specialty "Stew a la Buffalo Top Sirloin That has Defrosted for a Week Too Long?" The fact that you eat it too only confirms that you are an idiot.

Another problem is overcompensating for inability to detect subtle flavors by going wild with the spices. Is there such a thing as too much cayenne and cinnamon in the curry? Theoretically yes, but I've yet to hit my limit. Why do you think Costco sells those enormous containers of spices? Not so you can be stingy with them, Wolfgang! And maybe this points the way to a possible solution. If I nuke enough of her tastebuds, we'll both be able to enjoy my cooking again.

Nailing Down That Parkinson's Diagnosis

Doug's Wild ride, Update

As you may recall, during our last exciting episode in the Summer of 2010 one Doug Bahniuk fought Parkinson's, Alaska drivers, and killer winds to ride his bicycle solo between Anchorage and Fairbanks. This Summer he plans to return with a ride that makes his last one look like an afternoon trip down the Coastal Trail. You can hear from Doug himself about his plan to ride the wilderness road from Alaska's North Slope to Anchorage by tuning in via your computer to The Outspoken Cyclist where the interview will be streamed at 1:30 Anchorage time (5:30 Eastern Standard Time). The show will also be available to download as a podcast.To find out more about Doug, you can look as this website here or read his "Off and On" interview here.