I'm Afraid It's Parkinson's Disease. Psyche!

Once again the enigmatic oracle Viartis has emerged from the mists of the Web with disturbing Parkinson's news, this time about misdiagnosis. Citing a finding that "Initial diagnoses of Parkinson's Disease made by general neurologists were only infrequently changed, yet were incorrect in 24% to 35% of cases". The Viartis item goes on to report that "This means that many people have been treated for Parkinson's Disease for the rest of their lives without ever having had Parkinson's Disease. In people taking Parkinson's Disease drugs, Parkinsonism was confirmed in only 74% of cases and only 53% of them had probable Parkinson's Disease". You can find the article with links to supporting material here.

What else could your disorder be? Benign essential tremor, Wilson's Disease, perhaps a brain tumor. These conditions call for radically different approaches than PD. If a general practice neurologist comes up with the wrong diagnosis up to 35% of the time how do you think people outside the neurology field are doing with their diagnosis accuracy? What's a potential Parkie to do?

This is why it is useful to either get your diagnosis or a second opinion from a movement disorders specialist. Your chances of a correct diagnosis are best with a specialist with extensive training and practical experience in the area, hence the value of the neurological sub-specialty of movement disorders. Unfortunately, even with this training it can be tough to sort the differences in types of Parkinsonism.

So we find yet another question underneath the surface here, which could be phrased this way: "Aughhhhhhh! You always tell me that I need to trust my doctor, then you tell me that I can't trust my doctor? What's the point? I hate you! I hate you!" The point is that you have to be involved in your care. You must seek out the most high-quality information you can find from a variety of trustworthy sources, then listen to your own body to confirm that whatever they tell you squares with what you are experiencing as a patient. In a perfect world we wouldn't have to ask these questions. In our imperfect one we must answer them the best we can.

Washington Post Interviews Obscure Cartoonist from Far, Far Away, and Famous Cartoonist Nearby About Parkinson's Disease

The Public Relations department here at Off and on and Frozen Grin Industries would be remiss if they did not call your attention to this and, more important, this poignant interview with master cartoonist Richard Thompson, whose Parkinson's Disease emerged as he was right at the top of his game. Thanks to Michael Cavna for his perceptive and wide-ranging look at how Parkinson's affects those it afflicts, and how they deal with it.

Have I nagged you to exercise lately?

I have a game I like to play whenever I meet a neurologist. I always ask "What is the one thing you wish you could get patients with PD to do?" So far, they always answer "Exercise".

Sorry. I know you were hoping the answer was "Spend more time sorting socks" or "Work on completing your string collection" or even "Write essays about the sleep habits of the spiny anteater". Anything but exercise. Unfortunately none of these things have been shown to help those of us with Parkinson's Disease when studied under rigorous lab conditions.

Exercise is a different story. You don't believe me? Well check here, here, here, here, here, or here. You're convinced now, right? Good, don't forget to consult a doctor before you start.

But do start. Imagine the power in your grasp here. You can improve your ability to move. You can improve your clarity of thought. It's even strongly possible that you can modify the once inexorable path of PD progression. And most important, if enough of us will take up exercise and faithfully stick to it, doctors will have to come up with a different answer to my question.

Doug's Wilder Ride

On his second Alaska-based effort to raise money to find a cure for Parkinson's Disease, Doug Bahniuk ups the ante by planning to ride from the North Slope to Anchorage

Last summer Doug Bahniuk rode his bicycle from Fairbanks to Anchorage. This would not be a huge deal except for the fact that he was diagnosed with Parkinson's Disease around eight years ago. As it was, it still wasn't a big enough effort for Doug, who will push his PD limit out to a truly noteworthy new distance with his forthcoming attempt to ride 900 wilderness miles from Alaska's North Slope to Anchorage, its largest city.

Doug took time out from training, updating his website, and repacking his bearings to answer a few questions from Off and On.

1.) How much more difficult do you see this ride as compared to last year's sojourn between Anchorage and Fairbanks?

There is a huge difference. First is the distance: 900 miles vs. 400 miles. Then there is the road surface. A significant percentage (about 80%) of the road between Deadhorse and Fairbanks is gravel. Gravel roads are dangerous, because it's easy to slip and slide, and difficult to ride because of potholes. A big concern is the self-reliance issue. I have to carry enough food and water, or find water, to last five days. That's a big order. And while I only had to camp two nights last year, I expect to have to camp at least ten nights this year. And a lot of that will be in bear country. No, I'm not bringing a gun.

2.) What did you learn last year that will most change your approach to this year's ride?

The wind can be relentless. It's just brutal. So I'm trying to get (be) in better shape to deal with it.

3.) Could you give us a brief rundown on the gear you plan to take?

Batteries, soap, blue jeans, camera, camp stove, cell phone, cooking gear, flashlight, imodium, inner tubes x2, knife, light jacket, magnifying eye glasses, multi tool, Parkinson's meds, patch kits, penicillin, rain jacket and pants, riding shorts, shaving gear, spare shirt, sleeping mat and bag, tape, socks, spokes, string, tent, spare tire, tire pump x2, tooth brush and paste, toilet paper, wrenches, water filter/sterilizer, zip bags, candy bars and freeze dried meals. That's not everything, but you get the idea.

4.) What are you doing differently to prepare for the ride than a person without PD would do?

I've been experimenting with how long my meds last, and how I function without them. They seem to wear off in three hours; you could almost set a clock by that. It's very difficult for me to move without them, but I can do it. If I lose them or they get ruined, well, let's just say it's not good.

5.) What are you looking forward to most about the trip?

The scenery, the sense of isolation. Riding.

6.) What are you looking forward to least about the trip?

Rain! Lord, I hope it doesn't rain too much!

7.) Why a bike ride? Why not jog the whole way, or engage in a dance marathon for Parkinson's Disease Research?

Bikes are practical and open the world to you. Jogging would not be practical. A dance marathon is not my style; where's the danger? I don't really get into "team" sports, and to me, dancing, or similar efforts, is a team effort.

8.) Have you always been in love with bicycles?

My father bought me a blue, open frame (aka "girl's"), three speed "English Racer" for my third birthday. I learned how to ride it before I was four. I've been in love with bicycles since then. I can go anywhere on a bike. It takes time, but it gives me such a sense of control over my life to know that I can do that.

9.) So when you're out there on one of these expeditions, maybe a bit bradykinetic, (slowness that comes with PD) a little dystonic, (muscle cramps associated with PD) a long way from medical care and tired on top of all that, do you ever think "What am I doing here?"

Oh, absolutely! And let me add to the scenario: It's raining and I'm camping in bear country! Yes, I wonder what the heck I'm doing here! But 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. I mean what's the worst that can happen? I sleep in a mud puddle? Been there, done it. I die? I've come to terms with my mortality and would rather go down fighting than in a hospice bed.

10.) Once you pull this off, what is next?

I'm not sure. Maybe I'll ride across Oregon again, I love Oregon. Maybe I'll just concentrate on raising funds for PD research. I doubt there will be anymore Alaska trips.

If you would like to contribute to the cause of ending PD through Doug's effort visit his website, where he has a variety of levels and ways to participate. To read an earlier Off and ON Q&A with Doug, check here.

More Parkinson's Info Coming at You! A "Webinar" from the Davis Phinney Foundation

Hello all, below is information from the Davis Phinney foundation about a "Webinar" information session that they plan to hold on the 15th of June. 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. Their focus is in helping people with Parkinson's live well and maintain themselves.

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.

Your humble servant,

Peter


More than 4,500 people living with Parkinson’s have been inspired and challenged to take action as a result of attending the Davis Phinney Foundation Victory Summit™ symposium in cities across the US.

Now, this information and inspiration is coming to you in the first online event of its kind.

Tune in on June 15, 2011 at 1:00 pm EST for the

LIVING WELL CHALLENGE:

A Victory Summit and Panel Discussion Webinar on how to live well with Parkinson’s

• Featuring presentations and discussions with leading researchers and movement disorder specialists from around the country
• Covering 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. Tell your support group and tune in together. 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.

Parkinsons Disease: A Mixed Cursing

Here's a headline from a recent story in the Washington Post "Having Parkinson's disease is nothing to celebrate". Well, no. In the article that follows, writer Phyllis Richman, wrestles with the question "What is the appropriate attitude to one's own debilitating chronic disease?" A good question. A question to which I could not find her answer in the story, only criticism of the answers found by others.

Richman writes "I gnash my teeth when I come across people with Parkinson’s (PWPs, as we call ourselves) who declare that it is the best thing that ever happened to them." She goes on to complain "Articles, blogs and books by PWPs too often aim at the wry and cozy. They conclude that Parkinson’s brought them closer to their loved ones and opened them to a deeper satisfaction. I recognize in these authors a desperation to find value in their 'challenged' lives."

Excuse me? Aside from Michael J. Fox I have yet to hear of one person who says PD is the "best thing that ever happened to them" One can only imagine how abysmal a life must be for one to consider Parkinson's a good deal. One has to imagine this in fact, because no actual person is cited or quoted.

Likewise her assertion about would-be wry and cozy books and blogs names no names and cites no example of these sad and desperate people trying to find value in their challenged lives.

I can't speak for anyone else, but I doubt that I was alone in looking for a way to understand the purpose and value of life long before I ever got my diagnosis. Having Parkinson's Disease poses those questions in boldface, but is this really different for those without this wretched condition? If you're not desperate at some level, you're not paying attention.

How many of us will be granted a long and happy life followed by a graceful and dignified death? Who can say they will rise from their bed tomorrow stronger, wiser and more beautiful? Much of literature, philosophy and religion is a struggle with these difficult truths and their implications.

Nascentes morimur - From the moment we are born, we begin to die. There are two possible responses, denial or engagement. It isn't surprising that those who engage with the question and choose to go on with the agonizing, absurd, and wonderful enterprise of life find meaning in it. Why would they continue if the honest answer is there were none?

Richman does name one person she disagrees with. She says Michael J. Fox went too far in titling his book "Lucky Man." She is free to believe Fox is mistaken, but of the two, who is in a better position to know? Did Fox go too far, or is it Richman who has not yet come far enough?

Having Parkinson's Disease can be a "mixed cursing". No, it isn't a joy to wake unable to walk or to speak clearly. It's no fun managing and paying for the pills that can deliver relief only on the installment plan. It's not jolly and life-affirming to stagger erratically down a hall tripping over a rug. It's demoralizing to find yourself drooling when you swore you would avoid it through conscious diligence. Certainly, as the headline says "Having Parkinson's disease is nothing to celebrate". If it were, why would Michael Fox and so many others be trying to end it?

That headline, like the story misses the point. Parkinson's is nothing to celebrate. But the courage, dignity and ingenuity with which people often respond to it is inspiring. The grace shown by people who have the disease and the compassion of those dedicated to helping them can be examples of humanity at its most attractive. We would be ingrates not to celebrate that.

Parkinson's Forecast for May in Southcentral Alaska

Hello friends, We're festinating forward into May with our usual festivities. May 9th will be the telehealth presentation "How to function safely in our surroundings", at Providence hospital. Look for this event in room 2401 in the new oncology building at 1:00 p.m. This will be followed with our monthly support group meeting May 21, at 3:30 in the Pioneer Home. I plan to present a live reenactment of Dr. Melanie Brandabur's wellness for PD talk at the recent Parkinson's Association of South Dakota Conference, from which I just returned. All the drama! All the laughs! All the Parkinson's you can stand!