Ride for PKD: May 2010

About the Ride

Adventure of a Lifetime!

I set out on this adventure to ride the Pacific Coast Highway to have fun and see what I was made of. My goal was to do the entire route from Seattle to San Diego in 26 days. I ended up riding 21 of the 24 days I was scheduled to ride-a total of 1331 miles. I climbed up many headlands along the way-one of them being a 7% grade for 3 miles-950 ft. It was a very difficult journey, but fun as well. I accomplished a lot and even though I chose not to ride a section of the route, I learned that I can be happy with what I did accomplish and learn about myself in the process. So I ask you, to what end do we accomplish our goals? It's not enough to get to the end of the road without enjoying the ride and learning along the way. It is a process. To what end do we set out on the adventure of life? To say we did it, or to tell others about the experience of it? It is in the telling of it that it becomes meaningful-to share with others to that they may be inspired to dream about their own adventures-to have their own experiences to share. Some of the high points on the road for me were: cresting a hill after a big climb and high-fiving my friend at the top, racing down a hairy decent on the other side, going 24 mph with the wind at my back pedaling effortlessly, the thrill of roller-coaster hills, and a nice hot shower and a cold beer at the end of a hard ride. Some of the challenges were: crosswinds that threaten to knock you off your bike and push you into traffic, crossing scary bridges, having to change clothes several times a day due to weather fluctuations, and navigating. I learned about fear and courage and the kindness of strangers. With PKD, we deal with fear of the unknown. We don't know what lies ahead on the road to the future, yet we must press on. We must have courage to face the unknowns and the wisdom to ask for help. We must accept help with a gracious attitude and know that the kindness of strangers is out there in abundance-we just have to ask. I learned about perspective. When you set out to accomplish a goal and are disappointed by setbacks, you must remember to keep your perspective. The road can be arduous and setbacks are inevitable. Honor the road that you are on and learn from your setbacks. Respect your limits and work to stretch yourself a little more next time. Remember your struggles and honor the struggles of others. Respect your experiences and the experiences of others. The road of life is long and each person's experience of it is different. I learned about failure. Failure is not an option with PKD. If we fail, we no longer are participating in life. To fail does not mean falling short on your accomplishments. Failure is simply to give up striving for excellence in ourselves. When we fail to participate in life, we fail ourselves. When we face a fork in the road, we must choose our way. We must take time to regroup in order to press on toward success. These are some of te lessons I learned on the road that I want to pass on to you all: Challenges are best experienced with a friend, don't leave your partner behind, don't bite off more than you can chew, take rest when you need it, reach out for help, when all else fails cry and pray, when you miscalculate the distance revert to plan B, plan for the worst and hope for the best, and when a bird poops on you wash your clothes and move on!

About PKD

About PKD

Polycystic Kidney Disease (PKD) is one of the most common, life-threatening genetic diseases, affecting more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia - combined. More than 600,000 Americans and 12.5 million people worldwide battle Polycystic Kidney Disease (PKD) every day.

PKD equally affects men, women and children - regardless of age, race, geography or ethnic origin. It does not skip a generation. There is no treatment or cure for PKD. Until one is found, PKD will threaten the lives of every generation of every family living with the disease.

Those who inherit PKD develop fluid-filled cysts in both kidneys. Over time, these cysts grow and multiply, causing the kidney to increase sometimes dramatically in size. Although a normal kidney is roughly the size of a human fist, PKD kidneys can grow to be the size of a football or larger and weigh as much as 38 pounds each. More than 60 percent of people with PKD will develop kidney failure and be forced to depend on dialysis or a transplant to live.

About the PKD Foundation

About the PKD Foundation

The PKD Foundation does its work on the grassroots level primarily through the dedication of volunteers at the various Chapter locations throughout the country.

The Vision of the PKD Foundation is that "No one suffers the full effects of Polycystic Kidney Disease."

The Mission of the PKD Foundation is to "Promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for Polycystic Kidney Disease and improve the lives of all it affects."

Charity Navigator, America's largest evaluator of non-profit organizations recently gave the PKD Foundation its 4-Star (highest) rating for efficiency. They wrote, "Only 12% of the charities we rate have received at least 3 consecutive 4-Star evaluations, indicating that the PKD Foundation executes its mission in a fiscally-responsible way, and outperforms most other charities in America. This "exceptional" designation from Charity Navigator differentiates the PKD Foundation from its peers and demonstrates to the public it is worth their trust."

In FY 2008/09, 80% of PKD Foundation fundraising dollars went toward expenses invested in mission-related programs-52% to research grants and programs, 28% to patient education and awareness, 11% to fundraising efforts, and 9% to administration.

Keep the mission going forward and donate to Ride For PKD on my fundraising website at http://www.pkdcure.org/rideforpkd

For more information on PKD and the PKD Foundation visit their website at pkdcure.org/

Saturday, May 22, 2010

This Week's Training

Just finished another 100-mile week. Did a 35 mile ride on Thursday, rode into town to do some errands yesterday, and rode into work today. I enjoyed some peaceful riding on the Larry Scott Trail into town as well, listening to the birds singing. Saw 2 blue herons and some bunnies and heard the song of the red-winged blackbird. Love it! Sure feels good to be putting in some miles and feeling a sense of freedom and adventure.

Friday, May 21, 2010

Ride For PKD Seattle Rally Planning Meeting

Monday, June 14th 7-8:30pm at Haviland Kidney Center, Capitol Hill, Seattle

Help me plan the Ride For PKD Seattle Rally! We need volunteers for many tasks including set-up/tear-down, registration/raffle, music/emcee, media contact, promotion, contacting local bicycle clubs, etc. Come to the meeting and help make a great event happen! Ride For PKD!!
　

Rally at Magnuson Park

Join the Seattle PKD Chapter for a rally to send me off in style. Meet me as I talk about my ride. There will be music, information, a kid’s fun ride, and jersey raffle. Join friends new and old and support me in raising funds and awareness for PKD. Ride with me on the first leg of my trip along the beautiful Burke-Gilman Trail and Lake Washington Blvd. to Seward Park. Come join the fun at Magnuson Park on Sunday, July 11th at 9:00am.

Saturday, May 15, 2010

Magnuson Park Rally Booked!

Magnuson Park is booked for the start of my ride on July 11th. Among plans are fundraising, "Ride For PKD" jersey raffle, and a kid's fun ride on the race track!!

I start my route from 65th Ave. at the Park, picking up the Burke-Gilman Trail, across the bridge at the Montlake Cut and on to Lake Washington Blvd. to Seward Park and beyond.

Everyone come to the party and ride with me on the route to Seward Park and send me off in style!!

100 Mile Week!

Today I completed 100 miles for this training week! A 20 mile ride on Monday, 3o miles on Thursday-with a few good hills, 30 miles of rolling hills on Friday-with an RPM class in between, and a 20 mile flat recovery ride this evening. Feels good to be covering some miles again.

Next week-another 100 miles-starting tomorrow with an easy 20-miler. But first-a BodyFlow class for a much needed stretch of the legs and hips.

Sunday, May 9, 2010

Training Plans

I did a 20-mile ride today in 1.5 hours. My goal is to ride five days this week-working up to 30 miles then tapering back to 20 by the end of the week for a total of 120 miles at the end of this week! 20 down-100 to go!

Lodging Confirmed!

Planning for the trip is going smoothly. All my lodging from Seattle to San Diego has been confirmed. I even have a few days to rest. Two days in the lazy beach town of Cayucos, two days in Santa Barbara and one extra day in San Diego at one of my favorite places-Point Loma!

Friday, May 7, 2010

Jersey Design Complete!

Ride For PKD jersey design is now complete and jerseys will be printed soon!

Endura has been really great to work with and they work fast!!

Nice job, Fred & Josh!! Thanks, guys!!

Thursday, May 6, 2010

Back in the Saddle

I'm back to riding today after being off the bike for almost 1 month due to illness. Feels like I've lost some strength after being sick for so long. But I'm back in the saddle and rode with the Broken Spoke group this evening. I rode 30 miles including the ride into town and back.

My cycle computer died, so I had to replace the battery.

Starting to put together my gear for the big ride. Next step is to figure out which rack and bag to buy to haul the amount of gear I'm carrying. Need to make a research trip to REI for bags and lightweight clothing and shoes.

Almost all of my lodging has been booked and confirmed-only five more bookings to do. Ride for PKD jerseys have been designed and almost ready to go to print! It's starting to get exciting!!

My PKD Story

I am a patient, a volunteer, and an advocate. I was diagnosed with PKD on April 12, 2006, the day before my 36th birthday. I live with PKD and deal with the physical and psychological effects of chronic disease every day. Physical symptoms for me have included high blood pressure; swollen ankles; occasional fatigue and twinges of pain; and dwindling blood cell counts. Psychological issues include depression and anxiety that comes with worrying about my health and future complications; worrying about financial and insurance issues; and facing my own mortality-not knowing when the ball is going to drop for me and how severely. Fear of the unknown becomes a huge energy drain!

When life throws you a curveball, you have to figure out how to deal. So I deal with it by being active, staying positive, and advocating for myself and others. I exercise, eat well, and completed a triathlon last year. For the last three years, I have been involved in advocacy by traveling to Washington D.C. to visit my representatives in Congress, lobbying for important issues facing PKD patients. The efforts of advocates like me have resulted in several issues being passed in Congress. There is much more of a feeling of power in doing than in worrying.

In some ways chronic disease is a blessing. It has a way of waking you up to life-how precious and wonderous it is! And I want to get all out of life while I still can. I have had to think about many aspects of my life and how I choose to spend my time-shifting my priorities many times along the way. No one ever said on their death bed, "I wish I would have worked more!" So, I am choosing now to work less, play more, and appreciate more of the world and the people in it. I'm choosing NOT to put off the things that I love to do or have not done that I've always wanted to do. Now I am doing them. It has always been a dream of mine to bike down the coast-and this year I'm doing it!!

Remember how precious life is and grab it by the horns! You only have one life-treat it like the blessing that it is and live it like there's no tomorrow!!

Ride on!

Ride for PKD

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