Climbing to the remote Peruvian citadel of Machu Picchu would be a challenge for most hiking groups, but when a third of them have Parkinson's disease, it's an even more impressive feat.
In mid-October, 30 people from the US - nine with Parkinson's - will spend five days trekking to the ruins of the 15th century Incan city in the Andes Mountains. The San Diego-based group is climbing to raise money and awareness for promising stem cell research that might one day dramatically reduce the symptoms of the progressive neurological disease.
Among the climbers are Poway resident Elena Andrews, 58, and Scripps Ranch residents Ron Phillips, 57, and Doug Burcomb, 63. All three have been diagnosed with Parkinson's in the past five years. They say training for the climb with weekly group hikes has reduced their symptoms and they're excited to help with the cutting-edge stem cell research under way at Scripps Research Institute in La Jolla.
"It's inspiring," said Burcomb, who will be climbing in October with his wife of 30 years, Margie. "As I'm preparing for this it seems like I'm getting younger, not older."
The Machu Picchu ascent is the third mountain climb since 2011 organised by Sherrie Gould, volunteer executive director of the nonprofit Summit for Stem Cell. A nurse practitioner at Scripps Clinic's Movement Disorder Center, Gould works closely with Parkinson's patients. Back in 2010, she was asked by Scripps neurologist Dr. Melissa Houser to come up with a creative way to get patients more involved in stem cell research.
Gould went and talked to Scripps Research Institute director Dr. Jeanne Loring, who said that Parkinson's is one of the diseases most likely to respond to stem cell treatment. If Gould could come up with six Parkinson's patients and $US300,000 ($400,868) for research, Loring said the Institute could jump-start its work on the disease.
"I went for a run at Torrey Pines and tried to figure out how to do this. The weirdest thing is it never crossed my mind that I couldn't raise the money. It just seemed like the right thing to do," Gould said.
But first she needed a signature event. She chose her own bucket-list dream of climbing Tanzania's 19,341-foot Mount Kilimanjaro. On Sept. 17, 2011, she and 15 other people (3 with Parkinson's) topped Africa's tallest peak, and in the process they raised $US350,000 in donations.
"The analogy we used was 'if we can summit the highest ceiling point in all of Africa, then we can raise the money and make this research happen,'" Gould said.
The money from the climb was used to hire Dr. Andres Bratt-Leal as the new program director for Parkinson's research at Scripps Research's Centre for Regenerative Medicine. It was also used to find and biopsy the needed patients for the study.
In 2006, Japanese doctor Shinya Yamanaka made a scientific breakthrough by converting ordinary human skin cells into "pluripotent" stem cells (cells that can be converted into any type of human cell). The manufactured skin cells were not ethically compromised (like fetal stem cells) and were DNA-matched to the patient. Dr. Bratt-Leal hopes to use this technology to turn patients' skin cells into dopamine neurons that can be transplanted in their own brains to replace those neurons lost to Parkinson's.
Patient Doug Burcomb said he's eager to be on the ground floor of the stem cell research. He was forced to retire from his job as a corporate lawyer three years ago because of the progression of the disease. At the time he was struggling with anxiety, hand tremors, problems with typing on a keyboard and cognitive processing issues.
"I'd lose whole packets of words and I couldn't find them when I needed to," he said.
The Kilimanjaro quest funded only the first phase of the project, so in 2012 Gould went looking for another mountain to climb. For inspiration, she asked Carolynne Arens of Vista. Carolynne and her husband, Brad, were among the first to sign up for Kilimanjaro and she couldn't wait for another adventure.
Brad Arens, 62, was diagnosed with Parkinson's 14 years ago. An avid outdoorsman, hiker and traveller, he was working as a chiropractor when he began suffering symptoms of the disease. Carolynne said the diagnosis came "as quite a shock."
Before the Kilimanjaro climb, which he did with Carolynne and their daughter Heidi, Brad could only walk backward without stiffness and mobility problems. But after a few months of hiking training, he was walking forward again, and ended up as the strongest hiker on the Kilimanjaro team.
At Carolynne's suggestion, Gould organised the next Summit for Stem Cell climb to the Khumbu Valley base camp of Mount Everest in Nepal, at 17,300 feet. The arduous, two-week trek was longer, harder and more expensive to organize, but nine people (three with Parkinson's) finished the climb in 2013.
As word of the foundation grew, donations began to pour in from around the country. To date, Summit for Stem Cell has raised nearly $US5 million, including a $US2 million state grant. Gould said that with FDA approval, Dr. Bratt-Leal hopes to transplant 10 patients with the pluripotent stem cells in early 2018.
Patient Ron Phillips said the attraction of Machu Picchu was a big draw for him to sign up to climb this fall (each hiker must raise a minimum of $US2000), but he is also eager to fund the research. Phillips, who was an avid biker and climber before he became ill, said he struggled for months with troubling symptoms, like a right hand tremor, before he was finally diagnosed four years ago.
"It was good to finally know what it was, but on the other hand, it's something nobody wants to have," he said.
To prepare for this fall's climb, Phillips gets up at 5 am three days a week for hikes with his training buddies Elena Andrews and Carolynne Arens, who's climbing this year not with her husband or daughter, but with her 28-year-old son, Chris. All three say they've formed a lifelong friendship from the experience.
Andrews, who works in the floral department at the Rancho Bernardo Inn, was diagnosed with Parkinson's five years ago after suffering a year-long bout with depression and noticing she was tripping when she walked and had weakness on her left side. To arrest the progression of the symptoms, she began fitness training and boxing. And when she heard last spring about the Machu Picchu climb, she was one of the first to sign up. She will be climbing with her 22-year-old daughter, Tess.
"The training, the hiking, the boxing, they've all been really helpful keeping me active so Parkinson's doesn't get the best of me," Andrews said.
The majority of the climbers next month are from San Diego, though some are travelling from as far as Georgia to participate. Jim and MaryAnne Slegers of Nampa, Idaho, have joined the climb and have been trained with the group on some weekend hikes around Southern California.
The five-day Machu Picchu climb, on the Salkantay portion of the Inca Trail, is less strenuous than the last two Summit climbs. The 28-mile hike includes crossing over a 15,000-foot peak on the second day of the journey.
Gould said reaching the famed city of Machu Picchu will be an achievement, but it's the training - which began with weekly group hikes in April - that's the real healer. Hikes that took the patients six hours last spring are now being finished in four, and symptoms are waning.
"As a clinician, it's almost miraculous to watch people with Parkinson's disease get better," Gould said. "It's hugely inspiring to see them growing stronger every day. I think it's crazy great."