A Positive Approach to Living Daily With Parkinson's Disease!
Ride the Rockies 2015 Denver Post Article
Davis Phinney Foundation cyclist with Parkinson's finds hope in Ride the Rockies
POSTED: 07/01/2015 11:50:30 AM MDTADD A COMMENT|UPDATED: 8 DAYS AGO
HOTCHKISS, CO - JUNE 15: Ride the Rockies kicked off stage two of seven with a 98-mile bike ride from Grand Junction to Hotchkiss on Monday June 15, 2015. (Photo by Callaghan O'Hare/The Denver Post) (Callaghan O'Hare)
Riders with the Davis Phinney Foundation ride during the 97-mile route from Grand Junction to Hotchkiss on Monday, June 15, 2015. (Callaghan O'Hare, The Denver Post)
CRESTED BUTTE — Carl Ames still remembers what his doctor told him in 2008 when he diagnosed him with Parkinson's Disease.
"I remember I was told it wasn't a death sentence -- it was more of a life sentence," said Ames, an operations manger for a trucking company who lives in Phoenix and was diagnosed in 2008. "It was awesome to know that as many chronic illnesses as you can deal with, this is one that you can live with. You don't have it hanging over your head."
His attitude is indicative of those found renewed hope in cycling for the Davis Phinney Foundation, represented here at Ride the Rockies with a 30-member team that includes seven patients with Parkinson's riding the route.
Ames' symptoms are typical of patients Parkinson's, a neurodegenerative disease characterized by the lack of dopamine production in the brain: His movement is stiff. When he walks, his arms don't swing. He struggles to get out of chairs and off the ground. Even just walking a few feet from the tent where we're talking to get a bite to eat can be a challenge. He suffers often with pain and easily gets distracted. Typing and texting are difficult. So what about riding a bike 464 miles over seven days with more than 31,000 feet of elevation gain?
"Cycling is probably one of the best exercises I can do to help me move," Ames said. "When I'm riding, I feel like I don't have Parkinson's.
Phinney, a former American professional cyclist who won multiple Tour de France stages and an Olympia bronze medal in 1984, was diagnosed with Young-onset Parkinson s disease in 2000 at the age of 40 -- a much earlier age than average patients (he had retired from cycling in 1993). The foundation's goal isn't to find a cure for the disease, but to focus on helping those diagnosed with it live better lives.
"We have funded different studies that are proving that forced exercise with cadence -- like tandem riding, for example -- can actually quell some of the symptoms of Parkinson's Disease," said Lauren Kehn, the team's manager. "On top of that, the fluid motion, it helps with muscle memory. One of our riders, Joe Williams, his left side of his body is affected by Parkinson's, and the repetition that cycling has helps his brain remember that's how that muscle keeps connecting."
Parkinson's gets progressively worse over time, and there is no known cure, but there are medications that can help people manage the symptoms.
"My biggest challenge is mobility... I have a tendency to freeze up," Ames said. "When I feet engage with the pedals, there's a connection there -- an ability to go, and move. I don't have to worry about freezing up."
The rest of the foundation's team are support crew, or people who have a connection to Parkinson's through a family member or friend. Some just join to help. All must raise at least $2,500 for the foundation to join the team and ride in Ride the Rockies. And riders with Parkinson's
Ames hasn't ridden the entire route -- some of the Phinney riders need help because of the challenging course, but also because symptoms can be better or worse on certain days. On a particularly brutal Day 2, Ames had to take a support vehicle for some of the climbing segments -- which demand much on the body. He joked that he was taking a lift up to the top so he could take the downhill cycling ride home.
For those with Parkinson's exercise is part of the benefit, but so is gaining a network of peers and friends who have the disease or know someone with it.
"I've done more with Parkinson's than I did without," Ames said. "This is the third invitation I've had (to Ride the Rockies). And this is the only time I've been able to make it happen. I made a commitment to be here. I've looked forward to it and training for it, and it's been an amazing experience. I may not do every mile of it, this is the opportunity to be here with people I love."
Well it's been quite awhile since I posted. I guess it's time to get back at it and stop slacking.
A significant event since my last post was having back surgery in December 2016. I had been having pain in my right leg for quite sometime. It was determined that I was having some disc degeneration at the L4/L5 section of my spine. Dr. Ponce, the same neuro surgeon who did my DBS surgery performed a fusion surgery. I was in the rehab center for Christmas and came home on the 29th of December. The whole experience was quite an ordeal to say the least. Having Parkinsons combined with back surgery was not fun. I could write a long report on the whole experience but I won't at this time. A year has passed since then and I am finally feeling like I am feeling relief from the pain. Thank goodness!