Imagine writing your name as many times as you can in the course of 60 seconds. When people are asked to do this, they usually write anywhere from 60-250 letters in that one minute. When the same group of people are then asked to slow down and only write one letter for every 10 seconds they get frustrated. It feels weird and almost confusing. That feeling, many folks say, is how it feels to think with Parkinson’s.
Just as movement slows down with Parkinson’s, so can thinking. There is a lag time between a question being asked and answered. The answer will come — if the questioner is patient — but there is a somewhat slower processing speed and retrieval of information time than there used to be. When that “slower thinking” is combined with a masking or flat affect on the face and the possibility of a softened voice, sometimes communication changes dramatically. A big “disconnect” can occur when a person with Parkinson’s meets an old acquaintance. They think their face is smiling; but it’s not. They think they greeted the person warmly; but their voice was barely heard. The old friend asks a questions and it takes the person with PD just a bit longer than usual to answer. Suddenly the friend starts to wonder, “What has happened to my friend?” Parkinson’s happened to the friend and the signs being seen are not necessarily indicative of as serious of a condition as one might think.
Friends and family need to be educated. “’That darn Parkinson’s’ can cause my face to look flat even when I think I’m smiling.” “’That darn Parkinson’s’ can make my voice sound soft or raspy even when I think I’m talking loud enough.” “'That darn Parkinson’s’ can make me a bit slower in answering; but please be patient because I want to talk and share with you just as I always did.”
The fact that a person with Parkinson’s has to focus on voice, facial expression and processing and retrieval of information can result in exhaustion from doing things that someone else does easily. A person with Parkinson’s can have an identical day as their co-worker and produce identical results. The effort it takes to do so is much greater for people with Parkinson’s. Coming home feeling exhausted and frustrated is justifiable.
Friends and loved ones can make those difficult feelings less stressful. Sometimes waiting for just those extra couple of beats of the heart or ticks on the clock for an answer can make all of the difference. Feeling unable to keep up in a conversation can lead to withdrawal and isolation, and that can lead to depression. And, of course, a depressed person is much less likely to want to engage with others. Spouses particularly need to take every opportunity to set up one-on-one conversations each day. They need to commit to waiting for the response of their loved one with PD.
It’s hard to change the patterns of long term relationships. A once quick-witted loved one doesn’t become a slow-witted person. He/she is just less quick with the witty response. It is still the same person with the same information in their head. They may need some time to get that information from the brain to the mouth. Do you have the time?
The 6th Annual Symposium for People with Parkinson’s and Their Families takes place on Saturday, September 14 at the Country Springs Hotel in Waukesha. Keynote speaker, John Bauman is a person with Parkinson’s who continues to “live well!” Numerous speakers and exhibitors, breakfast and lunch. $15 per person. To register call 414-805-3666.