WAIMEA — April is Parkinson’s disease Awareness Month.
Most people have heard of Parkinson’s and most likely know someone who has it. But what many people don’t know is that Parkinson’s disease is now the world’s fastest growing neurological disorder.
Currently there are between 1 and 1.5 million Americans and 10 million people worldwide living with the disease. With an aging population, experts predict that number will double by 2040. An article published last year in the Journal of the American Medical Association labeled the impending increase as “The Parkinson Pandemic.”
Parkinson’s occurs when the nerve cells in the brain that produce dopamine become impaired and don’t produce enough. If this happens, a delicate balance between millions of nerve and muscle cells can get disrupted and affect a person’s movement.
Symptoms of Parkinson’s disease generally develop slowly over the years and their progression is different from one person to the next. Symptoms can include tremors in the hands, arms and legs; limb stiffness; loss of balance; and slowness of movement.
Joel Cohen of Waimea has a firsthand perspective on Parkinson’s having lived with the disease for 14 years. Like a lot of people, he said he realizes now that he had symptoms of the disease well before his diagnosis, perhaps as much as 10 years earlier.
“For me, being diagnosed was a blessing,” he said. “At least it set me on a course of action that could relieve some of the personal physical and emotional pain that I experienced. I’ve learned that time and patience with one’s self are key ingredients to becoming healthier and able to better enjoy life as I once did before.”
Cohen didn’t take the primary medicine prescribed for Parkinson’s for several years after his diagnosis. But his “brain fog” and confusion worsened until he started taking carbidopa-levodopa.
“I literally locked himself out of my car with the engine running a couple of times,” he remembered. “It was bad.”
Cohen says the physical difficulties suffered by people with Parkinson’s — a tremor or difficulty walking for example – weren’t as difficult to deal with for him as are some of the non-motor symptoms.
“I had issues with heavy sweating and of course anxiety. And while I don’t know exactly what the definition of clinical depression is, I know I felt pretty depressed at times,” he said.
Fortunately what he and more and more Parkinson’s patients are discovering is there are things they can do to help alleviate their symptoms with positive results. Regular exercise such as dancing, boxing, walking and biking can make a patient feel better and increase mobility.
“Exercise is medicine,” Cohen said. “The key to feeling good is having as healthy a body as possible through movement and regular exercise.”
Cohen serves on the board of the Hawaii Parkinson’s Association, representing the Waimea Parkinson’s Wellness Support Group which he co-facilitates with his wife, Phyllis Tarail. The group meets from 1 to 3 p.m. the second Wednesday of the month at Tutu’s House in Waimea. Participants share what’s on their minds, join in open conversation, occasionally learn from a guest speaker and participate in a social gathering that’s fun and rejuvenating.
“We started out just talking a few minutes amongst ourselves after exercise and it has expanded to where we now have talk story for more than an hour,” Cohen said.
One of the major topics for discussion is finding resources for Parkinson’s patients in an underserved area such as the Big Island. For example, it’s important for a Parkinson’s patient to have access to a Movement Disorder Specialist (MDS) who has training in Parkinson’s disease and related neurological issues. But there currently aren’t any on the Big Island and only two general neurologists islandwide.
While Cohen’s personal neurologist happens to be a MDS who comes to the Big Island a few days a month, some people have to fly to Oahu for treatment. North Hawaii Parkinson’s patients are grateful though for one unique resource available: Madeline Sofranac, who has lived in North Hawaii for five years, and has a doctorate degree in physical therapy and specializes in help for Parkinson’s patients.
She played a major role in starting their support group and currently leads a Tai Chi-Chi Kung class at Tutu’s House the first non-holiday Monday of the month. Sofranac also teaches a class with a variety of fun and specially designed movement on the other Mondays at the Cross Fit Gym next door to Tutu’s House. Both classes are from 1:30 to 2:30 p.m.
She finds working with Parkinson’s patients rewarding.
“There’s a bright light inside them that has yet to be uncovered,” Sofranac said. “I see it like a hidden spark. People with Parkinson’s get really lit up from a place where they were previously dark, since depression is one of the symptoms. For me to be a part of that is huge because it’s not something that you can do by yourself.”
That’s why the support group is such a major deal, she continued, as they support and encourage each other not only through physical encouragement but with emotional support as well. Because it’s a progressive, degenerative neurological disorder, Sofranac said people with Parkinson’s are conditioned to think they’re meant to get worse and meant to degenerate over time.
“But, by utilizing specific exercise interventions and just getting together, it’s incredible what you can do to minimize disease progression,” she said. “You can actually slow down the disease, help it from getting worse and regain things that are lost. They’re an incredible group to work with because they’re committed, devoted and able to overcome all kinds of obstacles. It encourages and inspires me as well.”
Members of the Waimea and Hilo Parkinson’s support groups are planning to attend the organization’s annual statewide symposium on Oahu this Saturday. For those who can’t afford the airfare, the groups are hoping to sponsor a live video presentation with details to be announced soon in their newsletter and through social media.
“My message to people with Parkinson’s and supportive family members is to seek positive solutions to challenges and keep both mind and body moving to the best of your ability,” Cohen concluded. “There is a Parkinson’s community out there for support. Take advantage of it.”