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Keeping the Lines of Communication Open

How to explain communication-related symptoms of Parkinson’s disease to friends, family or even strangers

Article written by Jackie Hunt Christensen.

The majority of people with Parkinson’s disease will experience some effects on their speech during the course of their lifetime. But even so, you do not have to let communication problems affect your relationships. With practice you will grow strong in your ability to handle stressful situations and keep your relationships on the right track.

How to best communicate

Parkinson’s disease can interfere with your ability to communicate for reasons that have nothing to do with education or intelligence. Muscle rigidity in your throat and chest can cause your voice to become difficult to hear. Internal tremors, stiff face and throat muscles, as well as some medications, can cause slurring of words.

Certainly, your voice and body language are a big part of your life. And anything that impacts your ability to communicate with others can have a significant effect on your relationships. Early on, you might not experience rigidity in your muscles, but most people seem to develop this symptom as the disease advances. This is referred to as “masking” because your facial expression appears to be locked in place, as if you were wearing a mask.

As time goes on, Parkinson’s will affect your ability to control your body movements. As a result, you run the risk of being misunderstood or worse yet, being labeled “impatient,” “anxious” or even “drunk.” To avoid these misunderstandings, it is important to discuss these issues with the people you encounter. Let them know about the ways Parkinson’s disease affects your body and your ability to communicate. This is an investment that can be made at every stage of the disease.

Here is how to keep the lines of communication open

Educate those you know

Share a little information at a time. That way, your loved ones are more likely to remember what you have told them and perhaps feel less overwhelmed. For example, one way to bring up the issue of facial masking is to look at photo albums. Find a photo of yourself with a blank stare or stiff smile, show it to your family and discuss masking.

Respond to questions. A family member or friend might unintentionally raise this issue for you by asking, “Are you angry about something?” Unless you truly are angry, use the opportunity to say, “No, but thanks for asking. Parkinson’s disease can make me look this way because the muscles in my face are stiff.”

Speak up. If you find yourself becoming annoyed because it seems as though everyone is asking you to repeat yourself or people seem to be ignoring you, step back and assess the situation. Then simply explain to people that Parkinson’s disease may restrict your voice volume and ask them to let you know when you need to speak louder.

Exercise your sense of humor. If you cannot speak as quickly and clearly as you did in the past, your friends and family will certainly notice but may be too apprehensive to bring up the issue with you. They may try to help by finishing your sentences or even speaking on your behalf. Sometimes using humor is a good way to deal with this situation.

Collect educational materials. The National Parkinson Foundation, your local bookstore and library are good sources of information on Parkinson’s. Sometimes leaving such materials in places where your family can learn about these symptoms at their leisure can be helpful.

Engage in conversation. Ask a family member or friend to attend a support group with you. Discuss these particular symptoms at your support group, especially if the group you attend has separate group time for caregivers.

Educate those you don’t know
Many people can get skittish when they see someone lose the ability to control their body movements. Think of such times as teachable moments. For example, if you are at the supermarket waiting in line patiently and the person in front of you gives you an angry look because he or she believes you are being rude or impatient, you can say, “I’m sorry if you think I am trying to rush you. I have Parkinson’s disease and these movements are part of the disease.” You may be surprised to hear, “My brother-in-law has Parkinson’s disease” or “My grandmother had it.”