Conquer PD!

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 m...

https://docs.google.com/file/d/0B3li4_P6iYUWZWdpTndSVXFKM3M/edit

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.

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 grati...

Father-and-son team win 'The Amazing Race Canada'

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

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 ...

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 wit...

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

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.

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

                    Create Maps or search from 80 million at MapMyRide                

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!

THE PICKLED BUTTER BALLAD by 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! Share this:

Tom Casey, Kevin Cartin, Carl Ames, Rick Baker

Ride raises awareness about Parkinson’s Disease Posted: Wednesday, Aug 7th, 2013 By John McEvoy 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, Col...

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

Shaken Not Stirred with Dr. Bob K...Interview with Carl Ames 08/07 by Brain Injury Radio | Health Podcasts

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 scoutsewewfifwww cames62@gmailcoo

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 pr...

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 Parki...

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.

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!

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!

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 f...

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.

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.

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.

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 husb...

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 ...