Facing an illness presents many challenges. Yet in today’s world of social media, finding resources and support online has helped many to connect with others who are facing similar challenges.

 

A 71-year-old grandmother has recently become the first face of the newly debuted Facebook page called Parkinson’s More than Motion. Her name is Jo-Ann Golec. Via cinéma vérité online, video clips can be seen navigating her daily life — from scenes with her family to a luncheon date with female friends.

The page invites visitors to interact, learn details about the extent of Parkinson’s disease (PD) symptoms, and understand how to take control of their medical care. The name of the platform, More than Motion, was chosen because there is a full range of non-motor symptoms that affect the Parkinson’s population. In fact, it is estimated that 60 percent of people with Parkinson’s disease have two or more non-motor symptoms; 25 percent have four or more non-motor symptoms.

For those who don’t fall under the umbrella of presenting with the more “recognizable” motor symptoms such as tremors, stiffness, postural instability, and slow movements — quality of life concerns are often overlooked and therefore undertreated. These include:

•    Sleep disorders
•    Skin disorders
•    Gastrointestinal or urinary disorders
•    Depression, anxiety, decreased motivation, irritability
•    Cognitive changes including memory problems or difficulty sustaining attention

Currently, one million Americans are living with Parkinson’s disease. There are between 50,000 and 60,000 new cases diagnosed in the nation annually, with the majority of patients averaging in their sixties. It is the second most common neurological disorder affecting the country’s older citizens.

Golec spoke with me by telephone about her passage from denial to advocacy. She explained that she had made a doctor’s appointment because, “I hurt everywhere. My gait was off. I didn’t sleep and I felt miserable.”

Although her father had Parkinson’s disease, she didn’t make a connection. “There were no tremors,” she told me. “It made it hard to diagnosis.” When Golec was informed of the cause of her problems, she “wasn’t expecting the diagnosis.”

Golec admitted, “I took the information, went home, cried, and told my family and friends that I didn’t want to discuss it.” In fact, as she described it, “I tried to will it away for a year.”

However when the transformation came, it was a full 180 degrees from denial to pro-action. Golec sought out a neurologist who was a “movement specialist” (The American Parkinson Disease Association has a referral center) and developed a plan.

Golec noted that Michael J. Fox had linked a public face to Parkinson’s by “putting it out in the open.” However, it is the relatable aspects of Golec’s journey that are connecting with so many in a visceral way. For several years Golec has spearheaded a program that recently drew 400 people in attendance — including medical professionals. “I’m an advocate,” she said proudly.

In discussing her individualized approach to managing her health Golec shared, “I’m a strong supporter of physical exercise.” It’s fifty percent of her program. The other half is medication. She goes to the gym five days a week for a 90-minute workout. Golec has added yoga, massage, and acupuncture to her regimen — the latter gives her a “temporary sense of symptom relief.” For anxiety, she practices meditative deep breathing to calm down her body. Golec enjoys setting an example and believes that More than Motion is “so important because it shows you that you can still be active.”

“You don’t die from Parkinson’s,” Golec said. “You die with it.” She emphasized, “Everyone has different symptoms.” One of the consequences of the illness for Golec was that she “lost her sense of smell,” which she said was common.

“It’s a complicated disease,” she stressed. “People need to know that there is help — from medicines to resources.” Pointing to the fact that there are constantly new treatments coming out, as well as better detection, Golec believes in the importance of a positive attitude.

Golec is energized about getting the message out. One of her last comments to me was, “You have to have hope.”

Edited by Jody Smith