Why I do what I do

Why I do what I do:

 

Each summer Pat and I set off on are annual bike riding adventures. Yes, we love doing this and look forward to these trips every year.  Over the past 4 years we have raised almost $10,000 for the Davis Phinney Foundation and approximately $1,500 for Pedaling for Parkinsons. Many of you have helped us raise these monies. Thank you!

I wanted to share a little bit more detail about why we do this.  I’ll try to apply the “goldilocks” approach and give enough detail as to get my message across but not too much to bore everyone.

 

People frequently ask me how I’m doing and comment that I look like I’m doing good. I appreciate the interest in my well being.  I have been very fortunate to have received good medical care and have continually studied to learn the best ways to take care of myself.  With the combination of medication, exercise, nutrition, stress reduction, and appropriate rest, I do pretty well most of the time. A question I get asked often is how it is that I can exercise at the intensity that I do while having Parkinsons. Parkinsons is very complicated and explaining the physiology behind it would certainly break my “goldilocks”  approach.  But in a nutshell, exercise is the ONLY thing that has shown to help slow the progression of Parkinsons. Medications treat either the symptoms or the side effects of the medications. I am very grateful for the medical advances that help me manage my Parkinsons symptoms, but unfortunately all medications come with a price, i.e. side effects.  Exercise on the other hand is like medication without side effects; unless of course you want to call increased energy, better fitness, weight management, etc., etc., etc. side effects.  Unfortunately it has only been in the last 10 years that exercise has become recognized as a treatment for Parkinsons; before that PWP (people with Parkinsons) were told not to exercise in order to supposedly keep them from falling and getting hurt, I was told to stop waterskiing; I didn’t listen. Even more unfortunate is that many doctors have not jumped onto the “exercise” band wagon.  Many, if not most, PWP experience the same thing when receiving a Parkinsons diagnosis.  The doctor tells them they have Parkinsons, prescribes medication, and tells the patient to come back in 3 to 6 months. This is not to say that there are not great doctors out there, there are, but the scenario I just described happens more often than not. So, what can be done about it.  Now we’re getting to the “why I do what I do” part.

 

In October of last year I was asked to be an Ambassador for the Davis Phinney Foundation.  This has been a great honor which I take very seriously. When I was introduced to the Davis Phinney Foundation almost 5 years ago,  I knew I had found a home.  As an ambassador I have access to information and resources that can help bridge this gap.  Currently, I am meeting with local neurologists and other Parkinsons organizations to get these resources into the hands of PWP.  The Phinney Foundation has put together a small packet “goldilocks” again, just the right size, that has information that can be handed out to newly diagnosed, or anyone else for that matter. Included in this packet is a link to order the Victory Counts manual, or what I and my Parkie friends call the “Parkinsons Bible”.  If I could do one thing, it would be to get that manual into the hands of every PWP; “No Parkie Left Behind”.  I have had mostly positive responses from local neurologists and local Parkinsons organizations and am thrilled that right now on my kitchen table I have a pile of packets that are getting ready to deliver.  Very soon they will be in the hands of a person that very likely may be scared and has lost hope.  THIS IS WHY I DO WHAT I DO!

In order for me to continue to do what I do, fundraising efforts are essential as the Davis Phinney Foundation is a non-profit organization.  When you make a donation to Pat’s Ride the Rockies page, it’s not about the bike ride; the bike ride is simply an avenue to get the message out.  The real purpose is to help the organization continue to serve the Parkinsons community and get them the resources they need to live well. 

Right now, today, an anonymous donor is matching donations dollar for dollar. If you can, please go to the link below and donate.  Every amount helps and today, it helps double!!

 

Lastly, if you ever come across someone who needs help or information about Parkinsons, please send them my way.  I love  being able to share what I know with other PWP and to help them in any way I can, just as so many people helped me when I began my own Parkinsons journey.

 

https://my.davisphinneyfoundation.org/fundraise?fcid=614741

Silver Linings

Well this is year three of riding Ragbrai with Pedaling for Parkinson's. I wasn't sure I wanted to continue the blog because I've had trouble the last two years being able to update the blog while on the ride. But I went back and read some prior posts and decided that, if for nobody else but me, I would continue the blog, it's kind of like keeping a journal. So here goes. Ragbrai, season 2, ended on a challenging note. On day six of the ride I had an accident and broke my arm. The road to recovery from this event was a far greater challenge than I ever would have anticipated. The injury was a challenge, but a post surgery drug reaction was brutal. I spent a good part of the year recovering and then rebuilding. It's been almost a year now, and I'm able to look back to reflect and realize that every challenge, great or small, has silver linings. Life is never meant to be easy; without the challenges we face, we can't grow. So I thought I would start my blog this year emphasizing some of the silver lining's that I was able to experience because of this challenge. 

1.  Found out that people are awesome. I would love to write the name of every person that helped or influenced me over the last year, but inevitably I'm sure I would forget someone. Most of you know who you are, family, friends and even strangers. I can't thank everybody enough. 

2.  Learned that the most important muscle in my body is my brain (stole that from Kerry Treichel).  By the time I was able to get back to the gym, I felt a little bit like a beat up ragdoll. If zero was the starting point 2 years ago when I began cycling, I was now starting at about a negative 200. I had never been in such poor physical condition my entire life. Building back up from that was a challenge to say the least. But having a vision in my mind of where I wanted to be kept me going. It was hard, and often times discouraging, but eventually I became stronger and stronger. I still have a ways to go to be where I want to be, but I do feel ready to go to Iowa and tackle Ragbrai again.

3.   I made a new friend. Luke Altman was the paramedic who took care of me at the hospital in Iowa. He was calm and collected and took great care of me while I was a mess. He also was interested in Pedaling for Parkinson's having had a family member who had Parkinsons. We've had the chance to keep in touch over the year and he will be riding with us at Ragbrai this year. 

4.  I learned to ALWAYS announce myself when riding and Pat learned the importance of holding his line!!!!

5.  You have to face your fears in order to move forward in life. A lot of people have asked me if I'm scared that I might break my arm again. Well, I don't want to break my arm again. I don't want to crash or hurt myself in any way whatsoever, nobody does. But what I really don't want is to give up something I love. And cycling is fun, just ask anyone who does it.  In the words of Dr. Seuss, “If you never did you should. These things are fun and fun is good”

6. Lastly I thought a lot this year about other people close to me that are battling their own challenges right now. No one is exempt from them, they happen to us all. It's part of the human experience. I've come to really appreciate how important it is for everyone to join together and help each other.  We really can't do this alone. We all need others to bouy us up doing challenging times and in return, we need to buoy others up when they are struggling.  I love this silly picture from The Emperors New Groove.  What I see in this picture are two people completely dependent on each other.  If they work together, they can succeed, if either of them gives up, they both will fail. 

 So here we go again.  I'm hoping for cooler weather this year but I'm not going to say it couldn't possibly be hotter than last year (we said that after Ragbrai 2011 and it WAS hotter in 2012). Whatever the weather I know I'll have fun riding, eating (lots of pie), taking pictures, maybe going down a slip and slide or two, but mostly being with the Pedaling for Parkinson's family and spreading the word about this great organization and how it enhances the lives of people living with Parkinson's Disease. 

12 days and counting!!!! 

The Best of Times!!

Charles Dickens said it was the best times and the worst of times. But even in the challenges we face during the worst times, there is always a light that although hiding, peaks through and eventually fills the sky with brightness.

    The first three days of Ragbrai were fun yet hot. One of the things that I've learned to do this last year is to listen to my body. Because I have some problems with hypotension,  I decided to stay out of the heat for Wednesday and Thursday. I had a great time with the PFP support group. It was nice to get to know Jason, Romi, Allie, Suzi. and Keyton better. Without the support group, PFP at Ragbrai wouldn't happen and even more importantly, would never run so smoothly. They are the cog in the PFP at Ragbrai wheel. Two nights in a row Jason was able to negotiate and find us inside air-conditioned space. Tuesday night we stayed at a church right next to the blistering hot field we had reserved. Wednesday night we were able to stay in a American Legion building. That night there was an incredible thunderstorm that blew in shortly after we got to the American Legion. The storm was amazingly beautiful but would not have been so much fun in a tent in the middle of the soccer field.  Suzi eased our sore muscles while Allie and Romi shuttled us around like a soccer mom and Keyton was his dad's right hand man.

PFP support team: Keyton, Jason, Romi, Suzi, and Allie

 The heat finally broke on Friday. The route was a short, only 42 miles. It had a lot of hills and there was a bit of a headwind but WOW, what a difference 20° makes. We went out of Cedar Rapids through the Czech district of town and then headed out towards Mount Vernon. Without question this was the best day I ever had at Ragbrai. The weather was perfect, the hills were a small challenge but there was always some downhill  to give you a break. The landscape of Eastern Iowa was breathtaking. This was the best of times! As Pat and I were riding and having the most incredible day I turned him and said "Today we're going to have fun. Today we're going to stop and do everything that Ragbrai offers". And we did. We took pictures  and ate food and talked to fun people. As we got close to town,  I told Pat there was one more thing I needed to do today and that was to stop and go down the slip and slide. So we stopped and down I went. I havent laughed so hard in a long time and I thought to myself, two years ago I was diagnosed with Parkinson's disease, in three months I'll be turning 50, but today I'm going to go down the slip and slide. You're never too old or sick to keep living. 

 About 2 miles outside of Anamosa, the end town for the day,  there was a collision and I went down. I knew immediately that something was very wrong with my wrist. It felt like my hand was going to fall off. Fortunately the person who owns the home across from where I fell had a van without seats in the back (we found out later he was a funeral director for the county), so rather than wait for the ambulance, we drove to the Jones County Regional Medical Center in a funeral van. There's got to be some humor in that. The Cliff Notes version of this is that I broke both bones that  go into my wrist along with some pretty impressive road rash and bruises.  One of the bones that broke had compacted when I landed and was now overlapping itself. The pain was intense, 10 out of a 10 - perfect score. Fortunately for me Luke was helping me out. Luke is a  paramedic from Jones County,  Iowa and he took care of me when I was at my worst. He helped me stay calm and made sure I was okay.  After a while,  I was finally able to settle down. Pat was by my side the entire time. I don't know what I would have done without him.  Karen Jaffe, Jay and Jenelle Alberts came to the hospital and helped keep my spirits up. Fortunately for Karen and Pat, they even had pie at the hospital :) They patched me up very well and I was able to go spend the last night with my PFP comrades. I sat on a lawnchair covered with blankets while the remainder of the group relaxed outside in the nice weather or played football.  Saturday was the final day. The riders rode from Anamosa to Clinton and the rest of us drove into town. We met at the local high school and said our goodbyes until next year.

   When I arrived back in Las Vegas I went immediately to the doctor. I had surgery the following Thursday and since then have been home recuperating. This is been a tough one. I don't know how long the process will take for me to get back to where I was, but I do know it will happen eventually. The human body is a magnificent thing but it is vulnerable.  Although my body is weak and broken right now one thing that is not broken is my spirit.

So when I think of July 27, 2012, I will be thinking about how that was the best day on the road ever. I'll be thinking about how I felt riding through the rolling hills of Iowa, and about taking silly pictures, eating Munchkins PB any J sandwiches, and Beekmans Ice Cream and going down the slip and slide. And I'll be thinking about people I met; the two gentlemen from Durango, Colorado who are coming home after Ragbrai to ride in the Copper Triangle for the Davis Phinney Foundation with their friend Joe Williams who has Parkinson's disease, and a hand cyclist with muscular dystrophy who kept trudging along while everybody else was walking their bikes. and the soldier riding in his full Army garb to show his love for his country.   But mostly I’ll think about the 65 people who came to Ragbrai with Pedaling For Parkinsons all in support of the five of us with PD as well as thousands of others who also live with Parkinsons Disease.  Each of them contributed to the mission of PFP in their own way.  We raised over $60,000 which will be used to expand the PFP program throughout the country benefitting many more people with PD.  And I’ll be looking forward to seeing everyone again at Ragbrai 2013.

Pedaling for Parkinsons 2012

 Life at Ragbrai

The heartland 

Nutrition breaks

Live music

PIE!

Crowds

Superheroes

Firefighters on bikes

Fire Trucks Everywhere!

More fire trucks

Potty time

Long lines at Beekmans Ice Cream

Drive through cooling station

Bike racks

Chewbacca

Bands

Water station

A bit of Vegas

Ragbrai bus

Home, home on the bus

Porta potty showers

These are the people, the Ragbrai people

Pat

patriotic riders

Superhero rider

formal riders

recumbent rider

walking the bike rider

Davis Phinney rider

Tall riders

Short riders

Fuzzy pink riders

bone head riders

Utah Ute rider

Grandma and baby rider

stowaway rider

Day 5: Marshalltown to Cedar Rapids (Winds beneath our Wings)

It's been tough to keep up on this blog because of intermittent internet service.  But today I'm sitting in the library of a beautiful assisted living facilitiy in Cedar Rapids in a nice soft chair, AC, and great WiFi.  So in keeping with  my promise to highlight some people in my life who do not have PD but have made a great contribution to my life, here are a few of those  people.  This is not a complete list by any means and I will be highlighting some more in future posts.  AND if you're reading this, then you are someone that I know, maybe very well, maybe not, but know that every interaction I have with  you influences and enriches my life. Thank you just for taking the time to read this

Kathy Nagle - Kathy was the one that got me into this  mess in the first place:)  But a good mess it is.  Kathy has helped me so much in  understanding PD and  how to live better with PD but more importantly has been a great friend.  Kathy was with me last year on my inagural trip to Ragbrai and we had a blast.  I miss her presence this year.




Carol Vails - What started  out as  a simple trip to the bike shop to  buy a new bike has grown into an amazing friendship.  Carol has been  my champion, mentor, and best of all friend.  Last month Carol rode over 450 miles over the Colorado Rockies with the Davis Phinney Foundation.  She raised over $2500 for the DPF which will help pay for a Victory Summit in Denver this year.  She rode some of the most challenging routes of her life that week but never gave  up.  Thanks Carol for all you've done, can't wait to go riding when I get back.

The staff at Derfelt Elementary School. Telling my colleagues at work that I had  Parkinsons Disease was not  easy.  Nobody wants to be the sick person.  But everyone has been nothing but supportive and helpful without making me feel like I was different. Work is a place where I can go where I  know people care.  Some days are hard but I know there are 40+ people that will be there if I need  them.  

Day 4: Webster City to Marshalltown (stuff you see at Ragbrai)

Bowed out of the 4H Club today.  Decided that it would be better not to end up in the hospital again.  There were a lot more names on the SAG list  this morning.  The 4H’s are taking a toll on everyone.  Initially we were scheduled to sleep in a soccer field behind a nursing home but Jason (the negotiator) drove around and found a American Legion building that allowed us to sleep in their air conditioned basement.  We got to the American Legion just in time to escape a ferocious lighting storm.  It was an incredibly sight BECAUSE we were inside.  It wouldn’t have been  such a great sight from inside a tent (so sorry for regular Ragbraiers). 

Ragbrai is more than just a bike ride, it’s an adventure. So here’s a little picture montage of some of the sights of Ragbrai and Iowa.

Pat on his way

Rargbrai bus  

Strawberry rhubarb pie

There is a Nevada, Iowa but not an Iowa, Nevada

Ragbrai shower

Add caption

More Ragbrai buses

Riding into town 

Americana

Cooling off without getting off the bike

Firetrucks are everywhere

Boo

Turkey legs and smoothies at every town

Loved this sign