Spot the Parkie! The PD Puzzle Game

(Click image to enlarge)

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.

Want to Help make an Inspirational Documentary About A Parkinson's Patient?

The movie trailer above is for an unfinished documentary about a South Dakota man who has advanced Parkinson's Disease. He still rides his bike (a sleek three-wheel recumbent) as he commutes to his bakery. Now he plans a ride 300 miles across South Dakota to inspire others with PD, and without it.

The documentary makers are raising money through Kickstarter. The filmmaker, Andrew Rubin recently wrote me to say "The film is endorsed and working with the National Parkinson Foundation, the Davis Phinney Foundation, LSVT Global, and other organizations. Our Executive Producer Stephen Nemeth has produced a vast range of socially conscious films such as Academy Award nominated War/Dance, Fuel, Flow and more. Finally, we are fiscally sponsored by the International Documentary Association a 501(c)(3) arts organization. "

If all this seems bona fide to you, and you would like to help get the film finished, click here to learn more.

The Sound of the Man Working on the (Bicycle ) Chain Gang

(Above, a picture of me sent by friend Scott McMurren. It was shot from his car when he happened across me aboard my recumbent. In his typical kindly way, he titled this "Riding Nerdy")

Although I am crazy about bicycling, my earliest memory of riding is not a good one. I was maybe six or seven and was just learning on my sister's hand-me-down royal blue Raleigh. Before me, the open road. Behind me, my mom, running as I pedaled, her hand gripping the saddle to steady me. Only... what's this? Applause? That's Mom clapping! That can only mean there is nothing holding me up! Exactly like Wile E. Coyote walking into thin air off a cliff, when I became aware that there was nothing holding me up I went down hard.

I've had numerous spectacular falls since then, including one that left my right cheek impaled by an old rusty aerial from a car radio, and another when I smacked into a woman who was sharing a joint with her boyfriend on the path down from West High hill. And now that I have Parkinson's Disease I expect to fall from my bike frequently.

Yet I don't.

Even more mysterious than the human ability to balance on two skinny tires while hurtling forward is doing this while your movement is compromised by Parkinson's Disease. Recently a small sensation was kicked up by a report that a Dutch man with advanced PD was barely able to walk but rode his bike six miles per day (you can see him tremoring up a storm, then riding his bike here)

This is a case where the patients are way ahead of parts of the medical community. I doubt this news shocked Davis Phinney or Doug Bahniuk, or any of a great number of parkies who pedal.

Like them, I feel freest and most like my old self when on a bike. But what I didn't expect was all that biking could restore.

Lately I have been struggling with my voice, partly because new settings on my deep brain stimulator seem to interfere with my brain's vocal centers. My speech can quickly deteriorate into rushed and indecipherable syllables. And my singing, to use a decipherable syllable: Oy!

So I was surprised when about 45 minutes into a 2 hour ride yesterday when I found myself singing in the saddle with better pitch and strength than I had been able to muster for months. I easily warbled "Pancho and Lefty", "The January Man", and host of other songs from my personal hit parade. When I launched into "Poisoning Pigeons in the Park" I envisioned a full-blown musical. In the show-stopping big production number the kids on a passing school bus joined in with four-part harmony on the chorus while a trio of street-corner inebriates doo-wopped and a bevy of meter maids high-kicked in between writing tickets. All this only slightly marred by gasps for air.

That exercise can at least temporarily improve PD symptoms is confirmed by exciting work done by Dr. Jay Alberts of the Cleveland clinic. But it's one thing to read about the amazing research results that Dr. Alberts is reporting, or even to see video. It's quite another to find yourself flying ahead on two skinny tires, singing your fool head off, and held up against all belief by an invisible hand.