Wednesday, April 17, 2013
For many people afflicted with Parkinson’s disease, everyday activities can be difficult. Especially the little things.
This progressive disease, which affects millions of people and has no known cure, is characterized by declining motor skills and uncontrolled hand and finger movements that can rob a person of his sense of a normal life. Shaving and brushing teeth take longer than they used to, fastening shirt buttons are an effort in frustration, and tying shoelaces or closing a watchband clasp become exhausting.
Worse, Parkinson’s patients are often forced to stop driving, to retire from work, and to cease doing the things that they have done routinely for decades.
But for all that the disease has taken away, John Evans has been able to maintain, and in some ways strengthen, his passion for a hobby that is based on tiny details: model railroading. For the past two and half years, Evans, who was diagnosed with early Parkinson’s disease in 2005, has been building an elaborate train garden at his home.
And not just any model train garden but one in an HO scale, which requires painstaking detail and precision -- work that can be challenging for anyone, especially someone with Parkinson’s. Each piece, some as small as Evans’ fingertips, must be hand-painted and assembled with care, with each building in the model town taking weeks to complete.
But Evans says that, rather than serving as a source of frustration, focusing on the details in the model trains has helped him cope with his disease. And he hopes his story will inspire others with Parkinson’s disease to take a similar course of action.
Evans’ first encounter with Parkinson’s, which showed up long before he received a diagnosis, also appeared in the details.
“About 10 years ago, as I sat at my desk at work, I realized that something unusual was starting to happen. I started to notice a slight twitching in my left pinky finger. I didn’t think much of it at the time, so I ignored it, since it seemed so minor,” Evans says.
In less than two years, however, that small movement slowly increased to a tremor in his left hand that became noticeable to others, including his daughter, Stacey Mann.
“Stacey was the one who first noticed,” he says. “I was carrying something, a cup or something, and she noticed the tremor. At first she thought I was over-caffeinated, just jittery, but I knew it was more than that. She encouraged me to go see a doctor.”
Following a complete physical with his family physician in December 2005, Evans heard the word “Parkinson's” spoken for the first time. Evans was referred to a neurologist, who confirmed that he was in the early stages of the disease, at the age of 54.
“My initial reaction to the diagnosis was a sense of fear for how Parkinson's would affect my future,” says Evans, who had just launched a home-inspection business at the time.
The neurologist immediately put him on a regimen of drugs to control the disease that was initially successful. However, after a year or two, treatment seemed to lose its effect and Evans began a quest for a more productive solution to his ever-increasing movement issues.
“I was initially told by the neurologist that I have a ‘garden variety’ type of Parkinson’s and was put on a medicine to treat it,” Evans says. “I found out later that it was probably not the best approach. So we decided to find the best treatment possible. We felt that we could get better treatment at a larger institution, and we also wanted to feel like we were more than just a number.”
And so, in 2008, after doing some research on the Internet, Evans found the late Dr. William J. Weiner and the Maryland Parkinson’s Disease and Movement Disorders Center at the University of Maryland School of Medicine.
“I liked their background with Parkinson’s and decided it was the place to go,” Evans says. “I made an appointment [with Dr. Weiner] and really liked what he presented to us and felt very comfortable with him.”
Evans eventually became a patient of Dr. Weiner’s and a regular visitor to the Movement Disorders Center, where he has received treatment and participated in genetic testing and educational seminars. The Maryland Parkinson’s Disease and Movement Disorders Center offers comprehensive and expert diagnostic, medical, surgical and rehabilitative services for patients with Parkinson's disease and parkinsonism.
(Dr. Weiner, a professor and chairman of the department of neurology at the University of Maryland School of Medicine who was nationally known for his work with Parkinson's disease and other movement disorders, died in late December 2012 of multiple myeloma.)
“We feel so fortunate to have found the University of Maryland and Dr. Weiner,” Evans says. “We have always been treated well at the Center. They are all fantastic and really seem to care about the patients.”
Promises for Parkinson’s
As a way to express gratitude to the Center, and to help support fellow Parkinson’s patients, Evans’ daughter Stacey Mann created Promises for Parkinson’s (PFP), a 501(c)(3) charity, in 2009. Founded as a way to help build awareness about Parkinson's disease, the organization supports a number of programs, including an annual fund-raiser called “Hike the Park for Parkinson’s,” at Oregon Ridge Park. All proceeds from the event benefit research at the Maryland Parkinson’s Disease and Movement Disorders Center.
The inspiration for the unique event, Evans says, was more than just the mutual love for hiking and the outdoors shared by father and daughter.
“Stacey and I both enjoy hiking. We took a trip to the Grand Canyon once and have done other hikes together, in Arizona and Utah, before I was diagnosed,” he says. “And we thought that Oregon Ridge, since it is a huge hill, could serve as a symbol of the difficulty that Parkinson’s patients face, trying to overcome challenges.”
To date, “Hike the Park” has contributed over $35,000 to assist in the funding of a genetics study of Parkinson’s disease, researching the genetic patterns of Parkinson's in hopes of determining a cause and eventually a cure.
(The fourth annual “Hike the Park for Parkinson’s” is scheduled to take place on Saturday, September 7, 2013, from 8 a.m.-12 p.m. at Oregon Ridge Park, 13401 Beaver Dam Road, Cockeysville, MD 21030. To register for the event, please visit the Promises for Parkinson’s website, www.promisesforparkinsons.org.)
Evans adds that he hopes that the annual “Hike the Park” event won’t be his only “legacy” donation.
“I want to donate my body for research,” he says. “I want to leave something, a gift, to Maryland, to help them continue with the work they’re doing and hopefully help other patients like myself to find a cure or help slow progression.
“It’s really important to me to try to help future patients. They may not find a cure in my lifetime soon enough to help me, but if we can help people in the future, I think it’s a tremendous thing. If I can help in any way, I want to do that, to give back.”
The idea of giving back was also the inspiration for the model train garden, too, says Evans, who began the project as a way to interact with his family members.
“It’s something that I always wanted to accomplish, to build a layout start to finish and leave in place for a period of time,” he says. “I wanted to do it for my grandsons and hopefully have them participate in some of the construction, which they have done a little bit of, along with some friends.”
But he quickly discovered that focusing on the construction of the tiny train garden pieces may be helping him battle the disease.
“It’s therapeutic,” Evans says. “When I’m focusing on these buildings, I don’t have any tremor. A lot of the work was done early in the morning, before I took any medications. For an hour or two, in the morning I have been able to work on those buildings with no medication and virtually no tremors.”
Evans believes that his experience of working with his hands, and especially doing the detailed work that he enjoys, has been highly beneficial and is something that should be looked at by researchers.
“Having patients who are able to focus on some project, or something they like to do, any type of craft work, could really help them battle the disease,” he says.
“I really think that if I’d never started the garden maybe the disease would have progressed a little more, or depression might have set in. This has kept me going and made me feel like I can still do a lot of things. Maybe what I am is the ‘train garden variety’ of Parkinson’s patient.”
The Maryland Parkinson's Disease and Movement Disorders Center, a division of the Department of Neurology, University of Maryland School of Medicine, is a full service Diagnostic Center for Parkinson's disease.
For more information, contact the University of Maryland School of Medicine Office of Development at 410-706-8503.
For more information about Promises for Parkinson’s, including how to register for “Hike the Park for Parkinson’s” or to make a donation, visit promisesforparkinsons.org.