Couples learn how Parkinson's affects communication

Dr. Tess Deshefy-Longhi shares the results of her research with a local Parkinson's disease support group. Photo by Katie Scarvey, Salisbury Post.

By Katie Scarvey

kscarvey@salisburypost.com

Parkinson's disease can rob married couples of being able to communicate as effectively as they once did.

Dr. Tess Deshefy-Longhi wants to help couples overcome these communication hurdles.

A doctor of nursing sciences, Deshefy-Longhi spoke recently to a local Parkinson's support group to present the results of a research study done through the Duke University School of Nursing. The study is titled "Assessing non-verbal communication in well elders and elders with Parkinson's disease."

Some local couples, including Bob and Peggy Wilson, participated in her research, agreeing to be observed and videotaped while acting out different scenarios designed to gauge communication effectiveness.

Parkinson's disease is a progressive neurological disorder that occurs when neurons in a portion of the brain become impaired or die. These same neurons in healthy individuals produce the chemical dopamine, which allows smooth functioning of muscles. When a large percentage of these cells is damaged, symptoms of Parkinson's appear.

Although Parkinson's is associated with tremors, close to a third of all Parkinson's sufferers do not exhibit that symptom.

The disease typically affects older Americans, but as Michael J. Fox has shown us, it can afflict younger people as well. Deshefy-Longhi told her listeners that the youngest case she's seen was of a 28-year-old woman.

Her own husband was 40 when he was diagnosed 20 years ago, so Deshefy-Longhi's experience with Parkinson's is more than academic.

She explained how symptoms of Parkinson's can affect communication. Those with Parkinson's often exhibit reduced expressions, or may have a "frozen" expression, and exhibit limited, rigid gesturing that may not be timed with the verbal expression it is meant to accompany. These symptoms can negatively affect communication, as can bent posture, which has the effect or reducing eye contact .

What Deshefy-Longhi has found is that those with Parkinson's disease are often unaware that they are communicating differently than they did before.

They often do not come across as they believe they are coming across, she explained.

She pointed out that the well member of a couple often struggles with missing aspects of communication that Parkinson's takes away — "shared humor, the special nods and winks" that make a relationship unique and treasured.

Deshefy-Longhi says she learned the value of non-verbal communication when she spent time in Kenya teaching nurses. She couldn't speak Swahili, so she found ways outside of language to get her point across.

Some researchers believe 70-90 percent of what we communicate is non-verbal, Deshefy-Longhi said — which includes facial expressions, gestures, vocal tone changes and posturing.

"When you can't communicate nonverbally, you risk social isolation," she said. Without communication, it's difficult to establish and maintain relationships, she added.

Not being able to communicate effectively can even have a negative effect on the quality of medical care one receives, she said.

Deshefy-Longhi studied 83 couples, including non-Parkinson's couples, used as a control group.

She observed and filmed the couples in their homes, presenting them with scenarios or situations that are germane to those dealing with Parkinson's disease.

Participants were asked to react to a situation with three different emotions: positive, neutral and negative.

For example, one scenario presented was a partner going through another's dresser. The person encountering that situation was directed to attach three different emotions to the response: "What are you doing in my drawer?"

In well adults, Deshefy-Longhi said, it was easy for the partner to identify the tone of voice being used.

But those with Parkinson's were less able to convey differences in tone.Partners of those with Parkinson's were much less likely to correctly identify the tone intended. So when a message was intended as positive, the partner would be less likely to recognize it as such.

Deshefy-Longhi said that those with Parkinson's are less able to deal with doing more than one thing at a time. So during dinner, someone with Parkinson's might have to focus on eating and might be less available for conversation.

She realizes that these issues can be frustrating for couples.

"We need to develop ways to communicate nonverbally," Deshefy-Longhi said.

She recommended the use of hand motions for those who have difficult communicating verbally. A hand over the heart can communicate love. The "thumbs up" sign can communicate a positive feeling about something. Conversely, a thumbs down can communicate a negative feeling.

She also recommended that partners sit next to one another rather than across from one another.

"If I sit next to (my husband), I'm not concentrating so much on his face," she said. Since the face may not be expressing the person's true feelings, because of neurological impairment, then taking the face out of the equation can actually help communication, she said.

Couples can also work out signals to use in social situations.

Deshefy-Longhi also pointed out Parkinson's disease may be harder for the caregiving partner to deal with than the person with Parkinson's.

Anger is a common emotion, she said.

"It is what it is," she said, referring to her own marital situation.

"He deals with it, so I need to."

Couples or individuals dealing with Parkinson's disease are invited to attend meetings of the Parkinson's Disease Support Group of Rowan, held at First Presbyterian Church, 308 W. Fisher St., at 1 p.m. the first Tuesday of each month.

Meetings often feature health care professionals and researchers who speak on topics of interest to those dealing with Parkinson's.