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.
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.
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.
Hey folks, the crystal ball is warming up, the test pattern looks good, and the future is taking shape in front of my eyes! I see... yes!... Another telehealth conference to be held at Providence Hospital. The topic "Tips to improve apathy in Parkinson's". This session will be led by Dr. Monique Giroux, of the Booth Gardner Center in Seattle. Look for this event in room 2401 at 1:00 p.m. in the Providence oncology wing on Monday, June 13th. But that's not all! Our Summer picnic will be held June 18, 3:30 p.m. at the home of the Dunlap-Shohls. This is a potluck, We'll have buffalo burgers, buns, condiments and such, you guys bring the salads, desserts, and other side dishes or beverages. To find our place, head East on Abbott Road from the intersection of Abbott and Lake Otis (uphill toward the majestic Chugach Mountains). You will come to a stoplight that adorns the intersection of Abbott and Elmore Road. Go right (South) on Elmore and look for our house 9601 Elmore, on the left, about a quarter mile down the road, halfway up a small hill.
Also for those of you interested in earning extra credit, There will be a "Webinar" information session that The Davis Phinney foundation plans to hold on the 15th of June. The subject of the Webinar will be the LIVING WELL CHALLENGE, which the foundation calls "A Victory Summit and Panel Discussion Webinar on how to live well with Parkinson’s".
Below is the Foundation's description of what they will offer:
• Presentations and discussions with leading researchers and movement disorder specialists from around the country
• Topics like the latest in research and clinical trials, nutrition, exercise, how to communicate with your doctor and your family.
• And finally, giving you access to worksheets and tools to support you in your
commitment to live well today
Challenge yourself to live well today. Watch with a friend or loved one. Get the tools and information you need to live well today with Parkinson’s disease.
Register today by visiting their website and clicking on The Victory Summit page. Or call 1-877-274-7673."
The time is set for 1:00 pm Eastern Standard time which makes it 9:00 a.m. Alaska time by my not-too-reliable reckoning :) The Davis Phinney foundation is a PD group started up by Olympic cycling champ and PWP Davis Phinney.
While techno-wiz is not one of the things that springs to mind when you think "Pete" I am pretty sure that I can stream this to my large screen TV if anyone would like to come by and watch it at my house. Warning: If you do come over, you may be licked by an extremely cute Dachshund. If you would like to come, please send me an email (dunlapshohl(at)gmail(dot)com) by June 1 so I may make all in readiness.
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "