American Parkinson Disease Association, Washington Chapter

By Lynn Chapman, M.S., Information and Referral Coordinator - APDA

It has often been said that effective communication is the cornerstone of any good marriage or partnership. Without it how do you work through life's difficulties? If effective communication is important for a marriage where there is no Parkinson Disease (PD), it is critical between a person with PD and their care partner.

Wayne and Carolyn Hansen, then, are clearly rather fortunate. Wayne was diagnosed with PD in 1999 and in that same year he had a stroke, developed diabetes, and was told he had spinal stenosis. Yet instead of responding to these health catastrophes with a "poor us" attitude, the Hansens were relieved to discover that the PD was not a brain tumor. Because of their strong faith and realistic life perspective, they were confident they could handle whatever came their way. They believed they could talk through the struggles. Also, instead of thinking of this as Wayne's disease, they looked at it as a journey they would be taking together.

Martha Glisky, PhD, a neuropsychologist with the Booth Gardner Parkinson's Care Center provides confirmation of the Hansens' conscientious effort to communicate well by emphasizing the importance of having an open style of communication. She explains that open communication means expressing your ideas and needs to your partner and then being open and receptive to hearing what your partner says in response. It also means being non-judgemental in how you communicate. This can be accomplished by being careful in your choice of words and using a neutral tone of voice.

The Hansens may have been blessed with naturally good communication skills, but they've also worked to improve their communication by taking classes and learning to use active listening skills. Active listening skills include giving your partner your full attention, encouraging one another to speak by using open ended questions, confirming what your partner said by paraphrasing what was heard, and using appropriate voice, tone, and pace.

Giving the Speaker Your Full Attention
Carolyn Hansen always makes sure that Wayne has her full attention before she speaks to him because she knows that because of the PD he processes things more slowly than earlier in their relationship. She explains that " It's also difficult for Wayne to multitask, so I wait before I bring up a new subject and that allows him to change gears, engage in conversation, and communicate with me."

Dr. Glisky emphasizes the importance of reducing distractions such as turning off the TV or decreasing other environment noise. This is important because in addition to the cognitive difficulties that often accompany PD, a condition known as hypophonia, or soft voice, can often make people with PD difficult to hear or understand. Also, if the care partner is hard of hearing this can be a double whammy. Dr. Glisky says it's also important to avoid what she calls "fly-by communication," which means saying something to the person with PD as you run out the door. In these fly-by scenarios, it's very likely that whatever was communicated will not be heard or understood.

Encouraging Communication and Confirming What the Person Said: There are specific techniques that a person with PD and their care partner can use to improve communication. One technique to encourage communication is the use of open-ended questions. In contrast to questions that just elicit a brief "yes" or "no" and provide very little supplementary information, open-ended questions encourage people to express what they really feel and need.

Another technique called "paraphrasing" can help determine whether we have properly understood the intent of the other person. For example, we can respond, "Let me understand; did you mean X?" or "Let me make sure I understand what you are saying. When you said X did you mean X or something else?"

The Hansens decided to be proactive in determining how to communicate when Wayne struggles with a task. They sat down and talked about how he would like her to respond when she sees this happening. They discussed three possible responses: (1) Carolyn asking Wayne if he wants help, (2) Carolyn waiting until he asks for help, and (3) Carolyn stepping in to help him with the task without first discussing it. The Hansens agreed that Wayne would ask if Carolyn if he needed help. According to Dr. Glisky, "Allowing a person to speak for themselves can help maintain a person's independence. Even though speaking for a person may be easier, it is not always helpful for this reason."

PD has made it more difficult for Wayne to express himself the way he used to. He has trouble using descriptive words and or putting words to his feelings. The Hansens aren't sure whether this is due to Wayne's PD, his stroke, or some combination of the two, however, word-finding difficulties are a well-known problem for people with PD who have cognitive issues. Wayne often feels frustrated when he can't come up with the right word, so when this occurs, Carolyn often uses her paraphrasing skills, confirming Wayne's intended thoughts by asking, "Did you mean . . . ?"

Using Appropriate Voice, Tone, and Pace: Memory problems can also be a major issue with PD. Although it may be frustrating to converse with someone who struggles to remember things, Dr. Glisky says that it's not helpful to tell the person with PD, "I told you already, don't you remember?" Instead, she recommends taking a deep breath, realizing that it's not the person with PD's fault, and then in a very neutral tone, repeating the information again. Another tip for conversing with someone with memory difficulties is to limit the amount information given at one time; otherwise it will likely get lost. Overloading a person with PD with information or rushing the person to a decision will only add to their stress. For example, people with PD need to be given ample time to order in a restaurant or do other activities of daily living.

Adjusting to Changes in Non-Verbal Communication: Another challenge facing partners are changes in non-verbal communication skills. Couples who have been together a long time have learned to read each other's facial expressions and hand gestures. But as a person develops PD, their ability to make these expressions or gestures can change radically. A person with PD may they think they are showing and expressing happiness or some other emotion, yet because of the PD, they may have a masked face or a lack of expression and so these emotions can no longer be read by their loved one. The hand gestures of people with PD can also change. Some people with PD experience impaired and slowed down movements whereas others, particularly PD patients with dyskinesias, may experience overactive body movements due to too much medication. Because of these changes, couples need to learn alternative communication styles in order to ensure that the emotions of the person with PD are properly conveyed and understood. Verbalizing feelings that previously were relayed through expression can be one solution to this dilemma.

Finding Alternatives to Verbal Communication: For other couples dealing with hypophonia (soft voice) or significant cognitive issues, it's important to realize that it isn't necessary to talk to communicate. Dr. Glisky recommends, for example, sitting together and just touching or holding hands. Physical touch can communicate concern and can signal to the person with PD that you are there for them. Couples can also continue to do things they enjoy that don't require a lot of talking.

Final Words: Patience is a huge factor in communicating well with a person with PD. Both people need to accept that things are different and that they will need to make changes to adjust to the PD symptoms. Wayne and Carolyn have certainly done so, and their flexibility has been an important factor in keeping their relationship together. They take things one day at a time. The Hansens also recommend the importance of getting involved in a support group, educating yourself so you know what is coming, being honest, and keeping your family up-to-date so they also know what to expect. "We also think of ourselves as the same people we have always been, we just happen to have Parkinson's," says Carolyn.

Resources

• The Caregiver Helpbook: Powerful Tools for Caregivers,
  Legacy Caregiver Services.
• Communication Miracles for Couples: Easy and Effective Tools to Create More Love and Less Conflict,
  by Jonathan Robinson
• The Center for Non-Violent Communication (http://www.cnvc.org/)