Sunday, December 8, 2013

Humor in Parkinson

I recently asked some of my PD friends to share with me some humor associated with PD, so here are some contributions:

Not being much of a story teller, I still find this humorous.  About 20 years ago, while I was still working, there was a man who worked with us whom we called "Stinky Stan".  He had the worst BO you could ever imagine.  When I asked why he didn't do something about it, I was told that he wasn't aware of it because he had lost he sense of smell and taste.  To that, I replied, if that ever happened to me, I would surely not stink up the place anld because he could not taste either I thought if that were to happen to me, I would eat nothing but health food.  Well, guess what?  I lost my smell and taste and my wife will occasionally sniff me and order me to go change shirts.  And as for the weight, I'm continuously eating junk food and have two pairs of slacks that fit.  The old saying "what goes around, comes around" seems to be my story. --contributed by Armando


Don't know if this counts as humorous but I dated a guy w-pd for a short time! When I broke it off with him, he told me that 'I would never be able to find someone normal'.  Seriously??  
It may not be funny but the laughs on him!  And, what the heck is normal, anyway??--contributed by Patti Meese

When 2 people with Parkinsons have lunch together how do they decide who gets the check ?
Answer : They shake for it !  Contributed by Taun Olsen

Running late doesn’t count as exercise….contributed by Brian Baehr who sent this in to me the morning of the day I needed it!



Monday, November 25, 2013

El Pour de Tucson!

Well, I have to report that we chose not to ride due to the tremendous amount of rain that we received on Thursday. Has we rode we would have been exposed to the wet roads, puddles, cold,etc. I was  able to be at the finish line when my friends came in, the cycling team from the Critical Path Institute,   .as we were able to get a group picture at the finish line. I appreciate Diane Stephenson for her never ending kindness to me.

Monday, November 11, 2013

2013 El Tour de Tucson!

On November 23, 2013, AMES2FINISH, aka Carl and Jordan Ames, the father/son cycling team from Peoria, AZ, will take on the 111 mile segment of the El Tour de Tucson, a charity cycling event held yearly to raise funds for several health foundations in the Tucson region. This will be our 3rd year but first at the 111 mile ride. We are excited for the challenge! This, being a charity event, we are challenged to fundraise. We would like to invite our friends and family to consider making a donation to our team by simply clicking on this link:

Carl's:

https://apdaparkinson.donordrive.com/index.cfm?fuseaction=donate.start&destination=P&eventID=687&participantID=12261

Jordan's:
  https://apdaparkinson.donordrive.com/index.cfm?fuseaction=donate.start&destination=P&eventID=687&participantID=12262

This will take you right to our donations pages where you can follow the prompts and make an online donation.

We certainly want to express sincere gratitude for the strength and support you are to us and to these charity events that we participate in. We thank you and we will ride strong for the cause!

Thursday, October 3, 2013

Tinkerbell Birthday Cake

A fun birthday cake I made for a very cute little girl!


Monday, September 30, 2013

2013 Race Around Lake Tahoe

On Saturday, September 28th, I joined my friends, Rick, Mitch, and George, and we competed in the 2013 Race Around Lake Tahoe! What an exciting time. We arrived in Truckee, CA on Thursday night, and we were able to stay at the home of Kevin and Sydney Knight. What a beautiful home it is and we were so grateful for there generosity. The home, surrounded by the beauty of the area was spectacular. The weather was crisp and clear, very cold in the mornings. On Friday, we did a short practice ride and discovered how cold we could get on our bikes. We made sure that we had gloves, and thank goodness I had brought warm riding gear.

On Saturday, we met at Zephyr Cove where the race began and ended. At 7 sharp the pelaton took off. It soon left us in the dust. Rick and Mitch, who were going for under 4 hours, left George and I in the dust. George, bless his heart, turned around and then rode the whole ride with me. George is a good man!

We had a great time. It was a challenging ride with some good hills. It was beautiful scenery. What an awesome day!

Rick and Mitch finished just over 4 hours and George and I finished under 6. I rode well and felt great! I am very pleased with how I did and very grateful to have been there. Thank you Rick for inviting me, and thank you George, Mitch, and Rick for making sure that I was taken care of. It is great to have such good friends!

Friday, September 20, 2013

The Davis Phinney Foundation Exercise Video! Check it out and order one!

http://vimeo.com/73142626


What is it?
An 80-minute Davis Phinney Foundation instructional DVD entitled, “Parkinson’s Exercise Essentials: Getting Started, Staying Motivated, Seeing Results.”
For whom is it intended?
Most anyone living with Parkinson’s disease can benefit from this instructional DVD.
Workouts take varying degrees of disease progression, fitness and age into account and are adaptable for a range of mobility and ability. Whether a first-timer, a lapsed exerciser, or an athlete, this DVD contains highly relevant information.
Why is the DVD important?
This is the first time a video has been produced that shows people with Parkinson’s how to exercise and how to customize their approach for their own needs and personalities so that they stick with it for the long haul.
There are two complete at-home workouts with variations to account for different abilities. Dr. Matthew Ford provides detailed information about how to get started with exercise, then progress it over time – a key to getting maximum benefit from one’s efforts. He explains how to take any activity and turn it into exercise that is suited for the person with Parkinson’s. This is not a workout video to use for a while, then move on; this is both a workout and a road map for making activity and exercise part of a long-term approach to living well with Parkinson’s disease. 
Importantly, all the people who demonstrate the exercises and speak about their experiences are people who have Parkinson’s disease. Each of them – different ages, backgrounds, abilities and symptoms – has a story that illustrates how much of a positive impact exercise can have on quality of life for people with this disease. Their message of encouragement is that if they can do it [exercise to live well today], viewers can, too.
Why should people register their DVD with the Davis Phinney Foundation?*  (By ordering a DVD, they are registered..  This is rally just for folks that get one a different way)
Registration at http://DPF.kintera.org/ExerciseEssentials gives people notification of updates, including video clips, printable workout exercise journaling templates, and content yet to be developed. We expect the resource web page to grow over time and want everyone who has the DVD to access the new content to stay informed and motivated.


Saturday, September 7, 2013

Family Picture!

I have a great family: L-R Kamrie,Carl,Leisa,Torie,Casey, Kyler, Mckelle,Brigden, Jordan,Jacie

Conquered Camelback Mountain!




Hiked Camelback Mountain this morning with friends Collin and Takashi!
It was challenging for me but I did well and it felt great to do it.



Friday, August 30, 2013

Tour de Friends meet point

Ride meet / finish point:
Cave Creek Market Place- just south of Loop 101 off Cave Creek Exit/East side of road
20235 N Cave Creek Rd, Phoenix, Arizona 
Meet in front of the Subway/The Coffee Bean & Tea Leaf

Monday, August 26, 2013

Tour de Friends Arizona's Rally For Friends For Phinney August 31, 2013



                    Create Maps or search from 80 million at MapMyRide
               

Tuesday, August 20, 2013

Summer Highlights 2013!

As this summer rapidly seems to becoming to an end, school has began, and September is just around the corner, I thought I should add a post for the Summer Highlights 2013!

1. Post DBS that was done in April, I am going through the process of programming. Initially saw quite dramatic results but only subtle changes. They say be patient, takes about 6-8 months to really see anything of significance. So... I  be patient!
2. Stake Pioneer Trek!
3. Family Reunions in Deer Valley UT. With Charltons first and then Ames. Great times with both! I love my family!
4. Friends For Phinney and The Copper Triangle!








Wednesday, August 14, 2013

"The Pickled Butter Ballad" dedicated to my Friends For Phinney!


THE PICKLED BUTTER BALLADby Carl Ames
Moooooove on, Moooooove on down the highway,
The sun is up – and we’ve got miles to go!
Butter up and stock the pickles fresh and plenty,
Because without our B&P’s we would be so slow!
The Friends  For Phinney  are  cruisin across this country,
Over half way there, they still have many miles to go!
Keep the butter and the pickles  fresh and plenty,
Because without our B&P’s we would be so slow!
We’ve got to make Red Oak by this evening,
Then Osceola and Ottumwa are next to go,
Keep the butter and the pickles fresh and plenty,
Because without our B&Ps, we would be so slow!
We will end this ride in Good ole New York City,
Times Square will be the place we want to go.
Keep the butter and the pickles fresh and plenty,
Because without our B&P’s we would be so slow!

Have you seen my friends for Phinney?

Tom Casey, Kevin Cartin, Carl Ames, Rick Baker

Article about Friends For Phinney and my ride with them!

Ride raises awareness about Parkinson’s Disease

Posted: Wednesday, Aug 7th, 2013




DEL NORTE – Many may be familiar with movie and television star Michael J. Fox and his battle with Parkinson’s disease. Fox’s celebrity status has done much to elevate awareness about this debilitating disease. There are many others that work toward the same goal.

Davis Phinney is an Olympic medal winning cyclist diagnosed with Parkinson’s in 2000 at the age of 40. He formed the Davis Phinney Foundation in 2004 with the goal of raising money to benefit patients and families afflicted with Parkinson’s. Since then, they have raised $3.8 million to improve the lives of those living with the disease.

The nonprofit foundation is: “committed to supporting programs and research that deliver inspiration, information and tools that will enable people living with Parkinson’s to take more control in managing their disease.”

Three friends of Phinney’s, who all went to school together in Boulder, Colo., got together recently to help raise money for the cause by committing to a cross-country bicycle ride.

Starting in Oceanside, Calif., Tom Casey, Rick Baker, Kevin Cartin and Cartin’s wife, Kathleen Donohue, will ride 3,273 miles to New York City, in 42 days.

On day 12 of their journey, July 31, the riders were joined by Carl Ames.

Ames drove with his family from Phoenix, Ariz., to meet the group in Durango, Colo., so he could ride the longest and hardest stage of the cross-country ride with them. It was over 10,856’ Wolf Creek Pass and more than 100 miles to the next stop in Del Norte.

Ames has Parkinson’s.

“I love to cycle, so I get involved with a lot of cycling events,” said Ames. “It helps me move better and feel better.”

Ames had never ridden 100 miles before.

“Carl’s nickname is “Bolt” because he just takes off down the road, and true to form, he took off and was soon about a half mile ahead of the rest of us,” said Kevin Cartin. “Carl was kicking my butt going up that pass, but he was having troubles with his legs, and had to stop several times.”

Cartin said he cried many times on the ride over Wolf Creek, but not because he was in pain. He said he cried, because Ames was working so hard to get to the top.

“The Davis Phinney Foundation’s mantra is to help and teach people to ‘Live Well Today’ with Parkinson’s, said Cartin. “Carl is a living example, and I’m very proud to have ridden with him.”

“Having Carl today was magnificent,” said Tom Casey. “What an inspiration! It is really cool that he could go that far.”

Casey said they are very thankful for everything that has happened so far and that the ride has gone so smoothly.

Michael Casey, Tom’s brother, said he drove the “Sag Wagon” along the route.

“Carl Ames is a class act in every sense of the word,” said Casey. “He is not embarrassed by his Parkinson’s disease in any way.”

Casey said Ames was very open about his symptoms of stuttering, his speech patterns and his shuffling walk.

“Carl was always in the lead and there was only one time when he fell behind, but he reeled it in and caught up,” said Casey. “I have never been more honored to be around a man of such integrity, character and spirit.”

“I didn’t know I would be so touched by the people I’ve met when I embarked on this journey,” said Cartin. “These people are ripping my chest open and grabbing my heart. They are so strong. They live with this disease 24/7, 365 days a year, and each day they get up and live well.”

The group of riders left on July 20 and plan on arriving in New York on Aug.30.

If you would like more information, or to donate to the foundation, go to:

http://friendsforphinney.org

Friends for Phinney c/o Davis Phinney Foundation, 1722 14th St., Suite 150 Boulder, CO 80302


Monday, August 12, 2013

Friends For Phinney

It is truly an honor to be associated with The Davis Phinney Foundation, and
www.friendsforphinney.org

Tuesday, August 6, 2013

Carl's Scoop



The Scoop...taught to me by one of the coolest guys I have ever met, is an opportunity to express gratitude for many things, combined with yoga style movement, and ending with an up to heaven shoot the arrow  action that seems to validate that this in addition to their eagle scoutsewewfifwwwcames62@gmailcoo

Monday, August 5, 2013

My experience with Friends For Phinney from Kevin's perspective.

Thank you Kevin for this writing and most importantly for  your friendship.
You all are awesome, so strong, so committed. I consider it one of the greatest blessings to have met you and to have had this experience with you.
Your friend,
Bolt
Wednesday, July 31
Carl Ames is now one of my heroes.
I met Carl yesterday in Durango.  Carl traveled from Phoenix with his family to meet us in Durango so that he could ride the longest and hardest stage of our cross-country ride.  Carl is a crazy guy who likes to have fun.  He met us this morning at 5:30am at Santa Rita park in Durango and once we had the car and trailer sorted out (rest days are actually hard on organization) the four of us hit the open road.
Carl’s nickname is “Bolt” because he just takes off down the road, and true to form, he took off and was soon about a half mile ahead of the rest of us.  We eventually found a good cadence and the four of us took turns taking pulls.  As the day progressed we bonded as cyclists do (nothing like a good butter session to break down the walls) and Carl was soon mooing at cows along the route and singing John Denver songs as he rode along.
Fast-forward to Wolf Creek Pass, and Carl is kicking my butt going up that pass, but he’s having troubles with his legs, and has to stop several times.  Tom and I check to make sure he’s OK, and eventually he continues upward.  After about 2 hours we finally get to the summit, and Carl’s family is there to greet him as he struggles to get off his bike.  He takes very short choppy steps as we line up for a picture.
And I’m crying my eyes out.  I cried many times on my bike today.  And not because it was a very hard day on the bike.  I cried because Carl was working so hard to get to the top.  I’m crying now.
Carl Ames has Parkinson’s.
He’s another wonderful, generous, funny, inspirational person, and I’m lucky enough to now know him.  The Davis Phinney Foundation’s mantra is to help and teach people to “Live Well Today” with Parkinson’s.  Carl is a living example.  And I’m very proud to have ridden with him.
I didn’t know I would be so touched by the people I’m meeting when I embarked on this journey. If you know me, I can be pretty cynical.  But these people are ripping my chest open and grabbing my heart.  They are SO STRONG.  They live with this disease 24 x 7 x 365, and each day they get up and Live Well.
Phew.  What a day.
Queen stageThe stage of a multi-day road race which includes the highest point reach of the whole race. Also usually, but not always, the hardest stage of the race.
So yes, the Queen Stage today.  Our longest and hardest stage.  Mike Casey and Liam took over the sag and by 3 or 4 stops in they were veterans.  They had water, food and other items ready for us each time we stopped.  They’re quite a team, and we really appreciate them volunteering for this trip.
Today kept pushing uphill, uphill, uphill, with some nice little downhills to keep us happy.  We made good time on Highway 160 out of Durango, and had good traffic once again.  Stopped in Pagosa Springs for lunch and went to the park by the river and watched lots of folks inner-tubing and having a great time.  It’s a nice town.  Great lunch of sandwiches, grapes, pickles, etc.  The route was just beautiful and it sure is good to be back in Colorado!
And lurking out there at 75 miles was Wolf Creek.
It got really hot during lunch so the ride to get to the base of Wolf Creek was tough.  Many stops to re-fill on water.  But once we got to the base we each found our own rhythm and headed 9.5 miles upward.  Rick was (of course) feeling strong so he rode away from us, and would eventually wait 55 minutes at the top for the rest of us.  Tom, Carl and I played a leapfrog game up much of the pass as Carl would surge ahead with his strong body and then have to stop from the effort.  We proceeded up the mountain and ultimately joined Rick at the top.  I tired to ignore the filthy Grackles who were croaking at us from the trees in their vulgar language as we struggled upward.  Not even they could stop us.
As mentioned, Carl’s family joined us at the top for a photo op.  There was a Canadian family from Montreal at the summit, and when they found out what we were doing and who Carl was, they donated on the spot!  It was a great moment and showed what getting the word out can do.
But wait, it wasn’t over yet.  Carl had never ridden 100 miles before, and this was his chance to bag a century.  So we headed down the hill.  Carl was feeling the effects of the ride and we proceeded at a slow, stately pace to ensure his safety first and foremost.  When we got to 99.5 miles Carl “bolted” away from us and pounded out that last half mile.  When he finally stopped he was at 101.4 miles and had his first century.  There were hugs all around and more tears.  It was a powerful moment.  At that point, again for safety, we loaded his bike into the trailer, got him comfortable in a seat in the car and then Mike and Liam took him onward to Del Norte to join his family.
That left Tom and Rick and I with 17 miles of work, and we attacked those last miles.  We got a paceline going and flogged those 17 miles in a hurry.
When we got to the Windsor Hotel in Del Norte there was a reception waiting for us with press and interviews and a gathering in the Hotel courtyard.  There was an article about us in the Alamosa paper today as well.  It gave us our chance to one again promote the Davis Phinney Foundation, and we received several donation checks.  Del Norte turned out a great crowd and we answered many good questions and had a good chance to talk with lots of great people.
Key thanks go out to Laurie Robertson (one of our BHS classmates who now lives in Del Norte) for organizing things and providing a room for Tom, Mike and Liam.  She did a stellar job.
When I started this ride I had never ridden 10 days in a row.  I had never attempted to tackle three 100+ mile rides in the course of 7 days.  I didn’t know how I would react to this challenge or if I could even do it.  I always say I learn more about myself on the bike than in any other venue.  I’ve learned a lot about what I can do if I put my mind to it.
However, more than that I’ve learned what Parkinson’s people live with every day and what THEY can do when they put their mind to it.
Carl Ames lived well today with Parkinson’s.
I learned something else about myself through Carl today.  I want to live well too, like Carl.

My Exciting Week with My Friends For Phinney and The Copper Triangle


To my Friends For Phinney, Family, and Friends,
Well, I am now home in Arizona after a truly amazing week of great fun, adventure, challenges, and most importantly…..wonderful new friends that I have met and will forever hold close in my heart as ones who truly have made an impact on my life. Tom & Amy, Kevin & Kathleen, Rick, Michael, Liam, Isaac, Davis, Connie, Kelsey, Lauren, Polly, Joe Williams, Cheryl, Maria, Jerry, Shane, Shannon, Joey, Kyle & Sarah and kids, Mona, Jordan, Leisa, Kamrie, Torie, Maren, Charles(my truck driving road warrior who got me to Durango) and to anyone else I should acknowledge by name but may have missed, thank you for a wonderful experience this past week.
As I shared with you the quote that came to me as a result of getting together a number of people for my 50th birthday last year, a group of us were on the 50 mile bike ride we had and as we were riding, a thought came into my mind that eventually evolved into this:
“I don’t wish Parkinson’s on anyone, but I wish everyone could have the opportunity to experience the things that I have experienced with Parkinson’s, and more importantly, experience the love, compassion and generosity coming from wonderful family, friends and strangers that I am able to experience these things with!”
I want you all to know how much the experiences of this past week support the words of this quote. As I met up with you on Tuesday in Durango, never had met you before but had been talking to Tom by phone, I was immediately brought into your lives and it felt wonderful to be accepted. You are an amazing group of friends that are blessed with genuine, compassionate hearts. Thank you!
Wednesday, my ride day with the Friends For Phinney, what can I say? As we headed out of Durango, heading towards Pagosa Springs, I felt so on top of the world to be out there with you. As I learned your riding speed and how well you worked together and were so united, it felt so great to be there. It was such a beautiful day for a ride, and as you made me feel so comfortable, I knew that I could moo at the cows and sing some songs and not feel embarrassed. And I hope that in the coming days that you when you see a cow, take the time to let out a loud MOOOOOOO! and see how good it feels.
I wasn’t planning on doing 100 miles that day, thinking that if I could make it to Pagosa Springs that having gone that distance would be sufficient for me. But as I rode on and feeling good as I was, I thought that there is no way that I could end my segment early and not experience this whole day with you. So on we rode. We made it to Pagosa Springs, ate lunch, rested our legs, and continued on. We were now within the reach of Wolf Creek Pass. What a beautiful ride it was getting to the base. The ranches with the surrounding mountains were majestic. I was so grateful for the opportunity to be there, and it was because of you extending an invitation for riders to ride with you that I was there. Thank you for that invitation.
As we took on Wolf Creek, I could soon see that it was definitely going to be one of those climbs that would go down in my history book as one of the top challenges of my cycling experience. I didn’t feel my bike was functioning at its greatest, and fortunately Tom was within shouting distance and we stopped and he helped me check out my bike, finding some minor details. Thank you Tom for being there.
As we continued up the mountain I tried to absorb in the beauty of what was around me as well as keep my mind and body in harmony to accomplish what needed to be done. As we forged ahead, making the stops as we did, I was grateful to have Rick ahead of us, quite aways in fact, as a carrot, or should I say “pickle” to encourage us to keep on going! And to Kevin and Tom who were most always within sight of me, who I knew would always be there for some type of motivation, I am very grateful to you all. And how could I not mention our great SAG team of Michael Casey and Liam, Michael and Tom’s nephew from Texas? They were so encouraging to me. Michael, thank you for getting me up that mountain!
I kept wondering where my family was. They had left Durango and I thought for sure that they would be there anytime. I so needed to see them and them to see me tackling the monster mountain. I kept looking down the road for them but they were not coming. But lo and behold they finally did when we were close to the summit, and it gave me the needed boost to forge ahead, and we were soon at the summit and it was such a relief. To have them there was awesome, and to be there with my Friends For Phinney was the greatest. Thank you my friends and family for giving me this experience of taking on the challenge of Wolf Creek Pass, so that I could have the experience of singing as I rode down that mountain…”Wolf Creek Pass, way up on the great divide, coming on down the other side!”. And come down we did! What a breath taking descent we made with the beautiful scenery around us. It was spectacular!
We were on our way to Del Norte and this is when the 100 mile mark for me was truly within range, and my friends were going to make sure that I accomplished it. We forged ahead and kept a good pace. Rick was leading us and I said to him that I would like to take the lead, and about that time I heard him say that we were at 99.5 miles and I bolted ahead ( I had to live up to my nickname given to me by my friends from POPS RIde, and that being “Bolt”) and I took off with a bolt of energy and drive to reach that 100 mile mark, ending at I think was 101.2 miles. As we came upon that SAG vehicle, it was such a great feeling to have accomplished both the pass and my first century ride in the same day, and most importantly the men that I accomplished with. Thank you Mike, Kevin, Rick, Michael and Liam. I also need to acknowledge the fact that I couldn’t have ever even attempted to accomplish what I did that day without the many prior rides and encouragement from my POPS Ride family, Jerry (POPS) and his sons Shane and Shannon, and friend Kyle Worley, who in 2011 pedaled from Florida to San Diego to bring awareness and fundraising for PD foundations, and to Joey Gregan, my friend who I ride often with and had earlier attempted to ride a 100 miles with, but due to an equipment challenge on my bike on the day we attempted , I was not able to finish. Thank you POPS Ride and Joey for being great friends, and to my wife, Leisa, and to my children….I love you all and thank you!!!! Kamrie, one of my daughters, wrote me a special note that I found in my bike gear pack that said simply, Hi Dad, hope you have a good ride, Love, Kam Jade. Kamrie, that note was so special to me. Thank you!
It was great to go ahead of you to Del Norte, and be there to welcome you to town and be apart of the reception social planned for you by Lori, a high school classmate. It was great and the setting of that courtyard was so nice.
With my family there, we proceeded on to Copper Mountain and left you behind, knowing that we would be reuniting at Copper for the Copper Triangle. So with two days of relaxation at Copper Mountain, it was preparing me for the ride on Saturday, which I was greatly looking forward to.
On Friday, I was anxious to go out to Leadville, surprise you, and ride in the SAG vehicle. My son Jordan and his girl friend, Marin, took me out there, and it was great to see you even after that short time of not riding with you. The opportunity to make the signs and rally for you from a different perspective was so much fun. Has anyone seen my Friends For Phinney?
Tom, thank you for sharing with me how “the scoop” came about and for the opportunity to share it with the group at the dinner on Friday night. I am so grateful for the group that was there and how willingly they participated. And thank you Amy for the never ending encouragement that you gave and the very positive attitude you have. You and Tom are such a great couple.
The Copper Triangle on Saturday was an awesome experience. To do it with my son Jordan is a great time for a father and son to share some great time together. Jordan, my only son, is a wonderful young man with a bright future ahead of him. I love Jordan and his enthusiasm for life and his love of cycling. He even shaved his most hairy legs for the ride this year! If he didn’t I am afraid he could have been a fire hazard as he raced down those hills! Thank you Jordan for being there and having this experience with me.
I also came across Davis coming up Vail Pass, and got to ride with him for a little bit. What an honor it was to ride by a great man, a great mentor and friend to me. Thank you Davis! You are an awesome person that I truly am inspired by.
As we arrived at the finish line, I heard Davis Phinney asking if Carl Ames was in the crowd. He wanted me up on stage to teach the crowd how to do ” the Scoop”. I heard him say that Tom would teach it, and about that was the time that I was able to acknowledge that I was there, jump off my bike, and work through the crowd to the stage. I leaned my bike up against the stage, climbed up on the stage, where Tom Casey, Davis, Kelsey and Connie Phinney were, where they had been addressing the crowd. Davis handed me the microphone and proceeded to let me teach the crowd how to scoop! What a thrilling experience this what. I am so very grateful to all for this week. As I ponder it all now that I am home, I want to thank my family, the Friends For Phinney, The Davis Phinney Family and the Victory Crew, and to all the people that donated funds and offered encouragement and support to make it possible for me to have this experience. To my employer, Knight Transportation, for their never ending support. There are many who donated to either directly to the DPF by making an on line payment or people who donated cash to help us with the costs associated with a trip like this, and I thank you for that.
It was indeed a great week! A great experience! And something I will forever cherish and look forward to that in the future. My heart is full, I think I will be having Friends For Phinney withdrawal for awhile now, but I will get over it. I will put on my bike gear, butter up, maybe eat a pickle, and take off for a few mile ride. And then when I get back, I will do a scoop and express gratitude for the people and experiences that bless my life, and to my Heavenly Father and the Lord Jesus Christ for their love and goodness in my life!
Whoooooooo! How about doing the Scoop? Don’t be shy, stand up, think of three things you are grateful for, bend your knees, get down in a bended knee staunch, raise your arms in the air, reach down low and scoop it all in, stand up, arms in the air, breath, repeat two more times, each time making a bigger scoop, then on the third one as you reach for the sky, position arms as if you were shooting an arrow up to the sky, make a swoooooosh sound as you release it. Feels great!
Love you all!
Carl

Thursday, July 4, 2013

A Trip to Prescott Valley

Tuesday afternoon I took off and made the short journey up to Prescott Valley to spend time with my good friend Mick. I met Mick in January at the Victory Summit, and we hit it off as friends.  We take the opportunity to talk regularly and I am greatly impressed by his never ending positivity, wisdom, and common sense. Mick teaches me alot---such as-"there are no ordinary moments", or, "stop, listen, feel what is around you".  Mick, diagnosed with PD 11 years or so ago, is an amazing friend and I am grateful to have met him and to be able to learn from him.

Riding The Sonoran Parkway

Today friends and I got to go on a fun bike ride, that led us to the new Sonoran Parkway, a new highway that connects Cave Creek Road to the Carefree Hwy area. It was a beautiful road, with smooth and wide bike lanes. It felt great to be out there, a light sprinkle came here and there, and I felt great. I finished strong. It was great to be there with Chris, Brigham, Rachel, Nate, and Joey.
A great way to start of the 4th of July!

Tuesday, June 11, 2013

Pioneer with PD!

Recently our church did what is called a "Pioneer Trek" where we take the teen age youth of our church to the mountains of northern Arizona, and recreate how the Mormon pioneers crossed the plains with handcarts. It is a wonderful experience for all who participate. We spent Tues-Sat living in this manner. This was the fifth time I have participated in one of these. I did alot of hiking and all in all did very well. I did not let PD get me down!



Friday, May 31, 2013

People Who Inspire Me!


Why Do I Succeed?
I succeed because I am willing to do the things you are not.
I will fight against the odds. I will sacrifice.
I am not shackled by fear, insecurity, or doubt.
I feel these emotions, drink them in and swallow them away to the place where my light overshadows them.
I am motivated by accomplishment, not pride.
Pride consumes the weak; it kills there heart from within.
If I fall, I will get up.
If I am beaten, I will return.
I will never stop getting better. I will never give up...ever.

That is why I succeed.
Mick Beaman

My good friend, Mick Beaman, is a very inspiring man. Diagnosed in his 30's with Parkinson's Disease, and now 44, there is not a day go by that I talk to him that he doesn't lift me up. He is a very talented musician, photographer. He is dedicated to his family, and he is a great advocate for Parkinson's Disease.
I am grateful to have him for my friend and hope that many get to meet him as well. Thanks Mick for the influence you are in my life!

Wednesday, May 8, 2013

DBS Programming-Video #3

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This third example demonstrates my ability to move with the help of the stimulator. And I am still without meds.
After this she had me take my meds, which I did. I laid down on the bed to rest, and eventually started to see the right side of my body do some things that were not good, my right big toe was twitching, my speech was being challenged, and it has really hard to be comfortable in that condition.
This was a good sign. The meds and stimulation was  having a conflict. Both could not operate that strong together. So Dr. Mahant lowered the stimulation and then identified a plan to start reducing the meds so that eventually they could start turning up the stimulator, giving my body the greater opportunity to function without meds. This was a great sign.
Now in the next few months, we will  have the ability to work with less meds and more stimulation.


DBS Programming May 6, 2013

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Well, as you can see the stimulator is working! I was able to walk so much better than previously and I am still  off meds.

DBS Programming May 6, 2013

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Leisa and I went to Dr. Mahant's office on May 6,  2013. I had not taken my meds since around 08:00 and this was around 13:00. Dr. Mahant wanted me to come in this "no med" condition so that we could see the results it might give me once programmed. As you can see I am struggling to walk.

Tuesday, April 23, 2013

Deciding to do the DBS

The DBS (Deep Brain Stimulation) treatment is an elective option that is available to those with Parkinson's Disease contingent upon meeting qualifications based upon the outcome of their longevity with PD as well as to testing associated that will help the doctors determine the patients cognitive abilities and response to medicine on and off.

Having been challenged with PD for 5+ years, I was beginning to see my off cycles more prolonged and harder to work through. In the past 6 months I have been considering if DBS is the next step for me, putting it off at times merely for the fact that I would be allowing my head and my brain to be drilled in to.

Last August 2012, I was invited to participate in a golf tournament that knowing what I know now, would be a life changing experience.

Meet Chase Robertson:

Chase is my cousin on Leisa's side of the family. His great grandmother, Ruth Bowen, and Leisa's grandmother, Twila Knight, are sisters. Twila and Ruth's husband, Bob, have passed away.  Bob was challenged with Parkinson's disease.


Bob and Ruth Bowen

After having married Leisa, and getting to know the family better, I got to know the Bowen family fairly well, and always felt good around them. Bob and Ruth, their children, Bobby, Karen and Sharon, Scott, were often at family events. I also did some yard work at Bob's home. They were always so good to me.

Two of Bob and Ruth's granddaughters are Debra and Jacque.
Both are beautiful women who are blessed with great musical talent, have been contestants in the Miss Utah and Miss America beauty pageants, performed in Nashville, USO Tours, etc. In other words, very talented and beautiful individuals who I knew, but can't say that I knew very well.

Let's cut to "the Chase". Debra's son Chase has chosen for his Eagle Scout project, to do a charity golf tournament in honor and memory of his great grandfather, Bob Bowen. This would be known as: The Bob Bowen 4 Parkinson's Charity Golf Tournament.

See www.bobbowen4parkinsons.blogspot.com

I became aware of the event and was invited to participate. I was fortunate to have my employer, Knight Transportation, whose owners are related to Aunt Ruth, to donate funds to allow us to have three foursome's participate. I was also invited to give a short speech at the awards dinner after the golfing was over.

Also there to participate and speak would be Brent Peterson, who is a former Nashville Predators hockey player/coach, and is challenged with PD. He has had the DBS surgery and was going to speak about it that day. His wife, Tami, was with him, and soon recognized my conditions and felt prompted to encourage me to look further into the DBS process. She said it helped Brent so much and was sure that it would help me.

I listened to her and felt positive about what she was telling me but put it off thinking that then was not the time for me to do it. Within the next few months, as I noticed my Parkinson's progression, and my off cycles became more prolonged, I looked further into it. I talked to many people who had had it and always got good reports about it. I talked to Dr. Mahant about it and she seemed okay with it, but ultimately it was my decision.

I also got to know Joey Gregan, who works for Medtronics, the makers of the DBS device and as I got to know him better, I was able to ask questions and get a better feeling about the process. I proceeded with the testing and was soon scheduled for it on April 18.

When I called Debra Robertson, Chase's mother, to tell her of my scheduled surgery, she was very pleased. Debra has always been one of my greatest encouragers and support. She told me that Tami and Brent would be very pleased and I talked to Tami that afternoon and indeed she was very excited. In my conversation with Debra, she told me that as Chase went before the board of review for his eagle project, when asked what he learned most from his project, he told the people there that his greatest desire was to have his cousin, Carl, in Arizona undergo the DBS surgery. Up to this point, even though I had felt good about my decision, I was still seeking a strong confirmation that it was the right thing to do. Knowing Chase had a strong desire for me to receive it, and hearing those words from Debra caused me to feel that was the answer I needed to confirm my decision. I am grateful for Chase for his maturity and strength, his understanding and a big heart, and his desire to do something good for Parkinson's Disease. I am grateful to have had this opportunity to participate in that golf tournament to get to know the Robertson family better, to meet Brent and Tami Peterson, and to have this be a major part of my decision to go through this process.

On the blog that was created for Chase's project, www.bobbowen4parkinsons.blogspot.com, this was information about Brent Peterson. As you read it, note the maturity of Chase. He is a special young man who will go far in many ways throughout his life. I love you Chase and am so very grateful for getting to meet you last summer. May we have many more golf outings!


Honorary Guest


We had the opportunity of becoming friends with a wonderful family known as The Peterson's. Mr. Peterson just retired as an assistant coach for the NHL team The Nashville Predators. Brent is also a former NHL player for 11 years and well respected athlete. At age 45 he was diagnosed with Parkinson's. It was devastating news for all who know him especially his family. Brent chose not to let this disease get the best of him. He has become an active spokesman and advocate for the disease. His celebrity golf tournament, Peterson for Parkinson's, has raised thousands of dollars for the Peterson for Parkinson's organization . Last year in December Brent had the DBS ( deep brain stimulus) implanted in his brain. What an amazing thing it is to see the video and how this device has changed his quality of life. I felt such a personal connection with Brent because our families are good friends and I too am an athlete and can't imagine what it would be like to be in the height of your coaching career, still have that competitive spirit he has and have someone tell you that you have Parkinson's.

Because he has been an inspiration to me, I felt it would be appropriate to invite Brent Peterson to fly out to the Bob Bowen 4 Parkinson's tournament I am organizing. He willingly accepted my request so he will be our honorary guest at the tournament. He will also be a guest speaker at the luncheon directly following the tournament. I believe he will be showing a video clip of the actual DBS device being implanted into his brain. In hopes of educating all who are there about this disease. I have chosen to put the money raised at the tournament toward Brent's Peterson for Parkinson's organization. The money will help people who have this disease but cannot afford to get the DBS device.
I may be young but I have seen and felt in my own experiences the happiness you feel when you serve others. My Great Grandpa was a perfect example of this. His life was dedicated to serving people. This happiness acquired through giving is what I hope to attain from this project as well as educating others about the effects and treatment options for this disease. I hope you will all come and help me raise awareness and money for this great cause.




Sunday, April 21, 2013

Recent Cakes I have decorated!



An Inspirational Biking Story


This is a very inspiring story about a very inspiring young man, Taylor Phinney, son of a very inspiring man, Davis Phinney. I am grateful for stories like this that show that there are some very great examples of true athleticism out there. Thank you Taylor Phinney!
___________

This is a story about a guy who finished last. Which is technically true. You can look up the results of the race, and you'll see his name, right there, lonely at the bottom. Taylor Phinney. USA. Finishing time of six hours, twenty-two minutes, fifty-four seconds. One hundred-and-ninth place. Last.
But this story is better than that.
First, about Taylor Phinney. Remember that name. You might already know it. Bike racer from Boulder, Colo., 22 years old. The son of two cycling legends, Davis Phinney and Connie Carpenter. A big dude on the bike, at 6 feet 5 inches, 180 pounds, Taylor Phinney is one of the most promising young cyclists in the world. He's already been to the Olympics twice. Won a stage of the prestigious Giro d'Italia last year. He is expected to have many great days in the sport.
Monday didn't begin like one of those days. Phinney was competing in Italy's Tirreno-Adriatico stage race, and this penultimate stage was a doozy. Up and down, down and up, 209 kilometers of punishment, including a 27% climb so comically steep that some riders got off their bikes and pushed them uphill. Many riders quit. Later the race organizer would admit that the stage was too difficult, even for elite pros.
Phinney didn't expect to win this stage. He just wanted to hang around, because the next day brought a time trial against the clock, and Phinney had a chance for a good result in that event. But the day soon unraveled. His legs weren't feeling great, and then his bike busted its chain. He had to get a replacement and chase his way back to the pack.
"I just was dangling," Phinney said on the phone, from his home in Tuscany. "We kept going over these really difficult climbs. I'd get back to the group and I would get dropped. I'd get back again, then get dropped."
Bike racing is a sport that fetishizes suffering. Anyone who's done it talks almost mystically about painful days on the bike, about the serenity achieved by pedaling through the agony. But even the best can only take so much. Soon Phinney found himself in a small group of 30 or so riders who had fallen off the main field, with about 130 kilometers, or 80 miles, left. The riders in the group began talking. Phinney said it became clear that nobody wanted to finish. Drop out now, get out of the cold. This is no shame. It happens all the time. Fight another day.
But Phinney wanted to fight now. He had to complete the race under the time limit to do the time trial Tuesday. "If I wanted to finish the race, I was going to have to do it by myself," he said.
So that's what he did. As the rest of the group abandoned the race, Phinney put his head down and pedaled. He was suddenly alone. The weather was miserable. It began to rain. And Phinney kept thinking of one thing.
"I would just think of my dad," he said.
Davis Phinney has lived with Parkinson's disease for more than half of Taylor Phinney's life. One of the great American racers of all time, a Tour de France stage winner and Olympian, Davis's day is often met by frustrating physical challenges. Tasks that were once simple take so much longer. Ordinary life requires patience.
That's what kept his son pedaling in the cold Italian rain.
"I knew that if my dad could be in my shoes for one day—if all he had to do was struggle on a bike for six hours, but be healthy and fully functional—he would be me on that day in a heartbeat," Taylor Phinney said. "Every time I wanted to quit, every time I wanted to cry, I just thought about that."
He had so many miles to ride. "It's kind of embarrassing," he said. "The race has gone by, and people aren't really expecting one rider slogging along by himself." Fans on the side of the road offered to push him up hills. But Phinney remembered a story his Dad had told him about one of his old Tour de France teams, making a pact to decline pushes.
Taylor would do the same. No pushes.
"He never lost his motivation," said Fabio Baldato, an assistant director for Phinney's team, BMC Racing, who was driving a car behind Phinney the entire route. "It was unbelievable."
"He wanted so badly to finish the race," said Phinney's teammate, Thor Hushovd, a former world champion.
Hours later, Phinney crossed the line, exhausted. He finished almost 15 minutes after the second-to-last rider, thirty-seven minutes behind the winner. He didn't make the time cut for the day, which meant he couldn't compete in Tuesday's time trial. It was a bummer, but Phinney was too zonked to be devastated. During his post-race massage, he cried like crazy. On Twitter, Phinney wrote about riding for his Dad and called it "probably the most trying day I've had on a bike." When Phinney's saga was reported on the website VeloNews, cycling fans went crazy. These have been bleak times for the sport, ripped apart by doping scandals. Phinney's solo effort—and his emotions post-race—had stirred something soulful. "Emotion is powerful and undeniably human," Phinney's mother, Connie Carpenter, said in an email from Italy.
Back home in Colorado, Davis Phinney was marveling at the whole story. You can still find Davis on his bike, usually on the fancy carbon-fiber city commuter he got from his son. Cycling remains a sanctuary—"easier than walking, in a sense," he said. But the daily routine remains full of hassles. Davis Phinney keeps a sense of humor about it, jokingly referring to himself as "Turtleboy." He began a foundation to give people living with Parkinson's tools for living well—for achieving little victories.
Davis Phinney said he didn't learn about Taylor's ride until after it was over. Friends told him how inspired they were by his son. When he heard that Taylor had been thinking about him the whole time, he was floored.
"I have almost no words for how amazing it makes me feel," Davis Phinney said. He wrote in an email to his son:
You make me so happy and beyond proud—and that is better than any medicine and can defeat any disease.
The results are wrong. This is not a story about a guy who finished last. Taylor Phinney won that race.
Write to Jason Gay at Jason.Gay@wsj.com