Social workers will tell you that it is unhealthy not to talk about the Parkinson’s diagnosis with each other. On the website for the Michael J. Fox Foundation for Parkinson’s Research, there is a section with this advice for caregivers:
“Like any other important development in the lives of two people close to each other, whatever the relationship, a PD diagnosis should be discussed as openly and honestly as possible. Don’t fall into the trap of considering your own concerns as a caregiver less important than those of your person with Parkinson’s (PWP). A Parkinson’s diagnosis is a life-changing event for everyone affected. Talking openly about what you are experiencing can help prevent resentments from surfacing further down the road.”
This advice makes sense, but it doesn’t speak for every individual. Wally is not macho, but he did grow up in a Mennonite home where he was not encouraged to brag or whine. Before the onset of PD, he was an amateur A-ladder tennis player. When he came home from a game, he would never announce, “Well, I beat so-and-so,” or “What a terrific game we had!”
When I didn’t think first and simply asked, “How was your game?,” his answer would be, “Fine.” This always forced me to ask, “Did you win or lose?” “Win.”
If his answer was, “So-so,” and I asked, “Did you win or lose?,” you can guess his answer: “Lose.” Eventually I learned what “fine” and “so-so” meant and didn’t have to ask the second-stage question. I call this form of communication short-tongue.
Wally is a fundamental Christian. His faith, private. He has never questioned his childhood teachings. He does not believe in asking God for things, such as money, a house, a car or a briefcase, but in moments of need he will ask the Lord for the wisdom to make the best choice, or the strength to endure, or the patience to understand. He follows the basic rule: God helps those who help themselves. He has worked hard and provided well over his lifetime. He lives for today and never worries about tomorrow. His love has been steadfast and unconditional. Even in my worst moments, and the Lord knows I’m the epitome of imperfection, he has not complained. He’s no saint, however. He’s quite human with a quick sense of humor. At times, it’s difficult to tell the difference between his tenacity and his stubbornness. Both test time and patience. Not his. Mine.
So, it is no surprise that he has never asked, “Lord, why me?” Neither has he blamed God for his having Parkinson’s, not even in his most frustrated and angry moments. “It’s not God’s fault.”
At first, we both had a ‘go-forward’ attitude. When you were at the bottom of the barrel, there was only one way back out—UP. Thus, I learned as much as I could at the time about Parkinson’s and the drug treatments, and he learned to compensate for his growing weakness and sense of imbalance. I told him what he needed to know when he was ready to hear it, and he asked me for help only when he couldn’t do something for himself. I let him struggle on his own because that’s what he needed to do, but sometimes in the morning, I swear our Toy Pomeranian—Yogi—crossed his legs waiting for Wally to dress and take him outside. I could have done it, but that was their routine and I was not interfering. There would come a time when they could not enjoy their morning exercise together.
Guide for Caregivers: http://www.michaeljfox.org/living_patientsAndCaregivers_guideForCaregivers.cfm