OCEAN PINES — The phrase “mind over matter” usually suggests making a choice not to be bothered by an event. For people suffering from Parkinson’s Disease, it has a literal meaning — keeping your mind in the right shape to allow your body to manipulate objects in the outside world.
Attitude, focus and practice are the keys to living with Parkinson’s Disease and attitude is, without question, the most important. Especially in Joan Calabro’s case.
Although she uses a walker or a cane to get around most of the time, Calabro is perfectly able and comfortable driving a car. Research into the various effects Parkinson’s Disease has on people improves constantly but how and why the disease affects certain people certain ways is still a little gray. One of the discoveries, though, is that muscle memory can be a key factor.
Walking, for instance, is mostly reflexive for many people but driving a car is a skill that has to be learned and cultivated throughout an adult’s lifetime. To that end, it isn’t completely shocking that Calabro can drive with more agility than she can walk even though she’s been doing the latter longer.
Not long after she was diagnosed with the disease, she sought out support groups. There had been a group in Ocean Pines but it was flagging. Eventually, Calabro found out about and joined the Salisbury-based Parkinson’s support group, the Delmarva Parkinson’s Alliance. Participating with the group as well as working closely with her doctors has kept her surprisingly mobile nearly a decade after her initial diagnosis.
The support Calabro sought and has received from the Delmarva Parkinson’s Alliance is of the most critical kind. The kind that helps Parkinson’s sufferers maintain the correct attitude about their struggle and, by extension, helps them in their fight.
Founded by Art Cooley, who was diagnosed with Parkinson’s Disease about five years ago, the Delmarva Parkinson’s Alliance works to educate and support both caregivers and those who have the disease. The group has been growing steadily but, according to Cooley a recent study by Peninsula Regional Medical Center indicated that more than 7,000 people in their service area have Parkinson’s.
When Cooley was diagnosed the Salisbury resident discovered that his local support group no longer met. A little further research revealed that the need hadn’t subsided but that the organizational structure had come apart so he helped inaugurate a more regional reorganization that resulted in the DPA.
For the first few years the group was committed primarily to support and education, bringing in top experts from all over to speak to both those who had Parkinson’s Disease and to their families. Participants were generally as up to date on the research as many of the leading physicians and caregivers had special access to the latest techniques for finding the sweet spot between being supportive and overly protective.
More recently, the group has been able to add access to new therapies, which is something they wish to continue and why they have recently begun an additional push for funding.
“He is just an exceptional man,” said Calabro’s husband Dominick.
Dominick is an integral part of Calabro’s therapy.
Although the Parkinson’s doesn’t keep her from driving, the drug regimen she is on can make her sleepy on long trips, so if she’s heading farther away that to the grocery store or to get her nails done, he’s in the driver’s seat.
He’s also responsible for making sure Calabro does her exercises regularly — the recumbent bike is her workout of choice during the cold weather — as well as keeping an eye on other aspects of her training, making sure she hits the marks or is at least working toward them for all of her activities. He even keeps an eye on the way she uses her walker.
Calabro’s walker is nearly as hi-tech as you’re likely to see. The most novel of the bells and whistles is an LED light that sets a red line down between the bars. It acts as a reminder against shuffling. Calabro is supposed to make sure that as she walks she steps over the line. This requires not only the kind of effort that helps maintain range of motion but also works to support the muscle memory aspect of walking. It makes a person concentrate on each step.
Meeting with others to discuss the challenges each face, Calabro said, helps make her feel less alone in her trials.
But while being able to meet with other people with the same condition and talk is an important part of the DPA, this is one support group where talking isn’t the major component. Since continuing to be mobile, and learning new ways to deal with any reduced mobility, many of the DPA events center around exercise.
Calabro said she’d recently attended an event wherein a Tai-Chi instructor worked with the group, demonstrating different moves and poses. Although both she and Dominick got a tremendous kick out of the event, the one that really struck home was the dance class.
The PDA hired an instructor who specialized in teaching dance to people with Parkinson’s Disease. The instructor, according to Calabro, worked with each of the attendees according to their ability. For example, those who were no longer able to walk had moves designed to take that fact into account.
Neither of the Calabro’s could heap enough praise on both the program and the attitude that it promoted.
Dancing is often the symbol of joy and renewing their access to this life-affirming experience was an attitude boost for everyone involved. It was so successful, in fact, that the DPA hopes to begin offering a regular dance class free of charge.
To that end, they will be holding a fundraiser during April, Parkinson’s Disease Awareness Month, with the aim of raising $10,000 to support the free classes as well as Parkinson’s Disease research.
Mental and physical successes are the key for helping people to fight the affects of Parkinson’s Disease and Calabro has gotten both in significant quantities by her participation in the DPA.
“I think they just set you up better,” she said of the physical and attitudinal boost she enjoys. “Instead of saying, ‘I can’t, I can’t, I can’t,’ you say, ‘I’ll try, I’ll try, I’ll try.’”
For more information about the Delmarva Parkinson’s Alliance or any of the regional groups contact Art Cooley at firstname.lastname@example.org