Communication is key: Understanding Parkinson's disease in a group setting

An internet writer named Bev Ribaudo has characterized her experience with Parkinson's as a communications problem, in which the brain is saying one thing but the body is doing something else. In one piece posted on the Parkinson's Disease Foundation website (www.pdf.org), Ribaudo compares Parkinson's to the squirrel that once sabotaged her friend's car.

"This car seemed to have a mind of its own," she writes. "One day, you would turn on the radio and the headlights would come on. The next day, you would turn on the wipers and the horn would blow or the turn signals would come on." The friend eventually discovered seeds on the floor of his car, leading to the realization that a squirrel had been nesting behind the dashboard.

Just like the bewildered motorist with the squirrel in his car, people with Parkinson's are often unsure what to expect on a daily basis: will they be able to make the walk to the convenience store? When they get there, will they be able to articulate what they are looking for?

People with Parkinson's disease seek out group support for good reason: they confront chronic symptoms that become increasingly difficult as the disease progresses. The physical symptoms are often accompanied by feelings of frustration, depression or exhaustion. Support groups provide a setting where people can manage these feelings, and can be a resource for education, information and communication with others who know what it's like to have Parkinson's.

Since last year, Youville House Assisted Living has hosted the only Parkinson's support group in the Cambridge area. Ildiko Szabo, Director of Community Life at Youville, played a leading role in establishing the group after a number of residents at Youville expressed interest.

"The Parkinson's support group could not have happened sooner," she says. "We have noticed that a growing number of people seem to be struggling with the effects of Parkinson's, both within the Youville community and in the larger Cambridge area."

According to Szabo, most who attend the Youville support group agree that Parkinson's feels like a communication breakdown on multiple levels. The breakdown occurs not just between the mind and body, but also between the individual with Parkinson's and those who don't understand how the disease affects them.

A member of the support group once remarked, "Just because I was able to do something yesterday doesn't mean I'll be able to do it today." This was most important thing he wanted his caregivers to understand about his condition, and a frequent source of frustration.

According to Szabo, "This comment resonated with everyone in the room. The members of the group had all felt that, at one time or other, a caregiver or loved one had expected them to be in control of symptoms over which they had no control."

Parkinson's is a progressive neurological disease affecting the nerve cells in the brain that produce dopamine. Without adequate levels of dopamine, the brain loses its ability to control muscles and regulate movement. Symptoms vary and can be difficult to recognize. In the early stages they can be too mild to notice, and even after they progress they can be confused with other conditions. Symptoms can be treated and alleviated through medication, group support, specialized physical therapy and a variety of exercises.

Common Symptoms Associated with Parkinson's

Tremor: This is often the earliest sign of Parkinson's. Approximately 70 percent of people first experience slight shaking in a hand or finger on one side of the body. The tremor may spread to both sides of the body in later stages of the disease.

Slowed movement: Movements that were once automatic, such as taking a step forward or getting dressed, become more difficult and require deliberate effort. Even facial expressions like smiling may require a great deal of effort.

Festination: This is an accelerated gait, characterized by short, shuffling steps.

Rigidity: Muscles can stiffen and become difficult to move. Stiffened leg muscles can impede taking steps forward. A person with Parkinson's may not be able to swing their arms while walking.

Postural instability: Loss of control over muscle movement leads to a lack of balance and an increased risk for falls. People with Parkinson's are especially at risk for falling backward. Physical exercises that strengthen muscles and improve balance are recommended to increase personal safety.

Speech Problems: Speech alterations affect almost 90 percent of people with Parkinson's. Neurological changes in the brain make it difficult to speak loudly, to intonate, and to articulate words clearly. Speech therapy can help Parkinson's patients improve speech and regain confidence in their communication abilities.

While there is not yet a cure for Parkinson's, millions of dollars are invested each year in learning more about effective treatments. Specialized voice treatment has been developed for those experiencing speech problems. Physical therapy and the regular practice of Tai Chi and dance have been found to improve postural stability and reduce falls.

The Parkinson's support group at Youville House welcomes individuals coping with Parkinson's disease or its impact. This includes those affected directly as well as friends and family members of those with the disease. The support group meets every third Tuesday of the month at 3:00 p.m. For more information, visit the Youville community events calendar at www.youvilleassistedliving.org.

Adam Johnson writes for Youville Assisted Living Residences, member of Covenant Health Systems, a Catholic, multi-institutional health and elder care organization serving New England.

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