Thursday, January 31, 2013

My "Ultimate" PD Diagnosis

The Victory Summit January 26, 2013
The opportunity to be nominated and selected by my peers to receive this award is truly a humbling experience. As I have known about this for a few weeks, I have had the opportunity to pull some thoughts to share today.  
Five years ago in early 2008, I received that diagnosis of having Parkinson’s disease.  Since then, I have been able to experience many new activities, meet many wonderful people, and get involved in events, support groups, committees, that I never would have thought to be involved with had I not been challenged with PD. I’m not indicating that one should seek for a PD Diagnosis in order to have experiences as I’ve had!
There are so many individuals, groups that I need to honor with the receiving of this award:
First, to the Davis Phinney Foundation and Victory Summit members, I thank you for your great work, enthusiasm, and passion for helping those with Parkinson’s disease and their families deal with the day to day challenges PD brings, and celebrating the daily victories that come to us. Last night, as Leisa and I walked into the hotel lobby, the first person I recognized was Davis himself. I introduced myself and Leisa, and had the opportunity to chat with a very cool man who I admire and respect for what he has done and will do for the PD community
Second I would like to thank the medical professionals, as well as the physical therapists, chiropractors, massage therapists that so passionately work with us and help us move better.  My friends and associates at the Muhammad Ali Center, Medtronics, the Arizona Chapter American Parkinson Disease Association,  the Parkinson Disease Foundation. Each in their own way bring daily victories to all of us effected with PD. Thank you Dr. Shill, Dr.  Mahant, Margaret Anne, Darolyn, Joey, Karlin, John Bargus, Dr. Joe Maher, Thomas and Kathy, John Hill, Tami and all the therapist at Banner Thunderbird.
Next,  I would like to acknowledge hero’s in their own special way, individually and collectively have I great respect and admiration for my POPS Ride Family, led by father Jerry Stutzman. This is the organization that got me going and pulled me in as their own.  Shane,  Shannon, and Kyle , and the whole POPS RIDE Family, I love you  all and thank you this day for their great passion for Pedaling Over Parkinson’s and the genuine good people that they are.
Then there are my wonderful friends, Brian and Kaye Baehr, and their sons Matt, Preston, and Riley. This family is remarkable in what they do every year to create the Baehr Challenge, an obstacle course event raising funds for the Michael J Fox Foundation. They have included me now in the planning of this year’s event. I am very excited to be involved.
I recently met Roy and Lynn Roden, who in November started a Seattle WA to Miami Fl bike ride to bring awareness to PD.  Roy had DBS last July and is doing extremely well.  I had the opportunity to meet them in Gila Bend recently and ride to Tucson with them. It was a remarkable experience with amazing people. Thank you Roy and Lynn for lingering here in Arizona to be with us here today.
To my friends that I have met at LA Fitness or strangers who have approached me to offer assistance when they see me struggling to walk. I have gained a great appreciation for those people who take the time to see if I am okay and I have made friendships with. Jason and Jaime, Jim, AJ and Terry
I have a wonderful employer, Knight Transportation, who I cannot thank enough for all that they have done for my family and I over the years. Kevin, Keith, Gary and Randy, I sincerely thank them and all my friends at Knight who support me and strengthen me. Dustin, Debbie, Kalen, Jim, thank you for being here today.
I have a very supportive church family and I thank them for their love and support. My friends Danny and Kyle, Brad and Cheryl, how much I appreciate you.
I have made particularly strong friendships with others effected by PD,  Wayne Smithson, Dave Voight, Brian Baehr, Pete Shaw, Jerry Stutzman, David Dow, Patti Meese, Lance Martin, Armando Brizuela, and I thank each one for the important role that  you play in my life.
And most importantly I thank my family,  my wife Leisa, and our children, McKelle & Casey, who have our two grandsons,  Jordan, Jacie. Kamrie and Torie.  You often get me when I am hurting, tired, moving slow, while others get me at my best. I thank you for your love and support and hope you know how much I love and cherish you.
Leisa, at this time I have a special presentation to make to you. It is not everyday that I get to give you flowers in front of 1000 people. (Brad Denham presented with a most beautiful bouquet of tulips and gladiolas)
And to all you here today that are challenged with PD, when we fall, get back up, keep positive, keep moving, and keep celebrating our daily accomplishments and victories!
In my ultimate PD diagnosis, it would say, “In 2013 The Victory Summit will be held in Phoenix, Az., and you will be nominated as “Local Hero”.
I have had a hard time with this “’hero” title, but then the thought came to me….in light of the “Ultimate PD Diagnosis”… “accept it graciously Carl, after all Davis Phinney can’t win them all the time!”

Sunday, January 27, 2013

Victory Summit 2013 Phoenix Arizona

I met many new people at the Victory Summit this weekend. It was very inspirational. Some of the new people that I met were:
Davis Phinney: A genuine, humorous, inspirational, compassionate, down to earth, man of strength
John Hall: A man in his 70's who has ran many marathons, and is very active, has not had DBS
John Carlin: climbed Mt. Kilimanjaro with a group of other PD people
Mick: A great new friend from Tucson who  I am anxious to get to know better
Allison-A wonderful young onset women who is very active in Southern California and also a local hero award recipient when the Victory Summit went there

Tuesday, January 15, 2013

Cross-country trip puts focus on Parkinson’s, roy, day, parkinson - News - YumaSun

Cross-country trip puts focus on Parkinson’s, roy, day, parkinson - News - YumaSun

Peorian confronts Parkinson’s - Your West Valley News: Peoria

Peorian confronts Parkinson’s - Your West Valley News: Peoria: Carl Ames was diagnosed with Parkinson’s disease in early 2008.

Positivity brings ‘Local Hero’ award to Peoria resident - Feature Stories

Positivity brings ‘Local Hero’ award to Peoria resident - Feature Stories: Carl Ames opened the door to the hallway that leads to his office. He was having an “off” time, so he gently placed his hand on my arm, and we…

Local residents cycle to help fight Parkinson's Disease - Sports

Local residents cycle to help fight Parkinson's Disease - Sports: Peoria residents Carl and Jordan Ames, a father and son team going by the name of “AMES 2 FINISH,” will be cycling the 60-mile segment of the …

Road Rally with the Roden's

Jan 10-12, I had the most exciting adventure with Roy and Lynn Roden, who are riding their bikes from Seattle WA to Miami Fl (see
I was made aware of the because Roy also is a clinical research advocate for the Parkinsons Disease Foundation. Brian Baehr and I were trained in 2012 to represent the PDF in efforts of awareness, clinical research advocacy, and promoting public interest in getting involved. Because Roy has PD and belongs to this group, the national office had sent out an email sharing with the rest of us what Roy was up to. Knowing that they would be coming through AZ, and my interest in cycling, plus my common connection of PD, I felt the need to get involved and show them our support. I made contact with Roy and Lynn back in September or October and initiated the desire to meet up with them in Arizona.

They drove from Miami to Seattle leaving Nov 1 and arrived Nov 5th and then proceeded to ride. Lynn's brother, David, is there support driver. Oliver and Samantha are their four legged friends traveling with them. They also have Holly, who they met at a KOA in Oregon, and her and David hit it off and now they are a couple:)

On Thursday Nov 10th, my friend Jim Schroder and I met them in Gila Bend Az. I had previously made contact with the city managers assistant, and she was a great source of help. She connected me with the Chamber of Commerce. My whole goal was to make the Roden's feel special while in Arizona.

Well, that morning in Gila Bend, we met at the Space Age Lodge. Roy and Lynn met us there. It was a very nice get to know you breakfast.  The local librarian, the mayor and his wife, and  Chris from the chamber of commerce came out to visit.  We had a great visit, took a few pictures, then went to the RV Park where they had spent the night, met David and Holly, and got ready to go.

We got on the bikes and proceeded to ride east on I8. It was a decent road,with a wide shoulder. The weather, overcast and windy, was bearable. We also had some good sunshine for awile. Eventually closer to Casa Grande, the wind was stronger. Lynn, a strong rider, had proceeded ahead. This was a long ride for both Roy and I. I broke out the tandem, and got ready to go. With Roy on the back, we proceeded to catch up to Lynn. She had stopped under an overpass, and could not see that Roy was on the tandem with me, letalone that I had taken a pill to give me some extra booth.

Roy had given me an Ambien CR pill to help me rest. Leisa had drove down and stopped to see us while on her way to Tucson. She was sitting by me in the Roden's trailer and I must have been just hanging on and it was weird. I remember resting my head on her shoulder, then I remember Roy and Jim helping me to my trailer, where I had created my own "toyhauler" with a tarp tent, furnished by our futon mattress and sleeping bags. I felt in control of the situation. However, the sleeping pill given to me earlier had obviously been working. I don't remember much after they walked me to the trailer. I had got into my sleeping bag. About 11:30 or so, Jim came to check on me because it had started to rain, and rain it dumped! I was getting wet but did not know it. They woke me up and got me to the safety of  Roy and Lynn's trailer. David and Holly were in their own tent. The wind and rain was getting them so they proceeded to high tail it to the Roden's SUV, where the found Jim. They then came to the trailer where they found me. Jim had previously been on the floor in the trailer. He ended up in my Honda Element! What a crazy adventure.

The next morning, Jim was checking things out, and found that my mattress had a puddle that had frozen. I left it there hoping it would dry and get things back to normal algain.  What a fun adventure though.

That Friday morning at the KOA, I made a breakfast, a parfait of granola, sliced bananas, fruit from the little fruit snacks, yogurt, and some punch. It was very delicious and they all seemed to enjoy it. Especially David made kind comments.

The Stutzman Brothers,  Shane and Shannon, met us there at the KOA and we proceeded to get ready to ride. It was a beautiful morning, the sun was out and it felt good. It was great to have Shane and Shannon there.

We left the KOA and headed south on the frontage road for Tucson. It took a mile or so for my meds to kick in so that my right foot would rest comfortably on the pedal and my right leg would give me the proper thrust needed to put a comfortable power into my pedal and feel like I and the bike were one. It soon kicked in and I smiled as I passed Roy and Shane.  I went on ahead feeling good about the ride and enjoying the day.

I wanted to stop at when we got to Picacho Peak to get a picture of the Peak in the background. Shane stopped, Roy stopped, I stopped, however I did not make an announcement to everyone and before we knew it Shannon was crashing into Shane.
Fortunately no bikes or bodies were injured. That was a good one. Thank the Lord for the blessing of that.

We were in need of gas for the Element so we rode on to a store/gas station and got fuel. Meanwhile, Mom, McKelle, Brigden, Kyler and Torie had driven north to meet us, and did so at the Marana Exit. Mckelle was wanting to ride, so I switched bikes, and I got the tandem out, and rode the last 20miles. It was fun and don't do anything crazy.

Well friends, the ride is over physically for me, however it will always live on with the powerful memories.

We ended the ride at Becky Farley's power gym. That evening we went to the Rosa's Mexican Food. Becky had a recommended it and we enjoyed the evening dinner together. Joey Gregan joined us which was great. Unfortunately he did not get to ride with us as previously planned.

 Saturday morning we attended a circuit class the PWR Gym, which was really fun. We then had Roy and Lynn tell their story and more about them. Roy was able to talk about his DBS (Deep Brain Stimulation) surgery and the positive effect it has had on his quality of life. He was able to talk about clinical research and the value of exercise. Lynn shared a great story of meeting a welder in Oregon who did some welding repair work on their travel trailer, and found out the the man had two relatives living basically with a diagnosis that they had PD but were sent home and were living without the resources available to them. Roy was actually able to go visit with one of them that had become fairly reclusive. Roy was able get the ball rolling for them. Questions                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Questions were asked. The Roden's gave a perfect performance. I am so glad we met and hope to see them again. soon.

Monday, January 14, 2013

Christmas 2012 My Wonderful Family

Okay, it's about time I wrote again and kept track of what has been happening. Christmas and New Years was wonderful. The kids were home, Brigden and Kyler were here, it couldn't have been better. What a wonderful family I have. We had fun doing karaoke, Jordan put Kyler in his bucket, I made Casey a waffle cake for his birthday, and Torie dressed up as Santa. What a goof ball she is!