I’ve always been pretty organized and logical. I like knowing the rules and the “why” behind things. My brain looks for patterns I can rely on to predict or explain everything. Growing up in a family where my dad taught seventh and eighth grade science, I was always encouraged to look for these kinds of rules.
The physical world has laws that guide it — specific rules for how things act. These laws are always in place and always play out in the same way. For example, one of the rules of physics that guide our universe is Newton’s third law of motion, stating that for every action, there is an equal and opposite reaction. I like this law. It makes sense; you can see it play out in the world. And it’s true for everyone and every object.
However, medicine and disease don’t have many logical, provable laws, and Parkinson’s disease doesn’t follow any rules.
I have idiopathic Parkinson’s, the most common form of the disease. Idiopathic is just a fancy word for “we don’t know why.” There are no rules or formulas for who gets Parkinson’s or why. Fortunately, we have discovered the mechanism of the disease — the body stops making enough dopamine — but we have no rules to tell us why it shows up when and where it does or why it shows up in such different ways. We have ideas, and doctors and scientists are looking for answers, but we just don’t know yet.
Which is annoying for someone like me, who wants to know and follow the rules.
My Parkinson’s also came early, when I was diagnosed at age 36. Onset typically occurs in a person’s mid-60s — another rule this disease didn’t follow.
People often say, “If you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.” It means there are so many possible symptoms, and every person experiences their own mix of them at any given time. Even within yourself, you can have a different reaction to a dose of your medication from one day to the next. I had a grandfather with Parkinson’s, and he had terrible tremors. For me, tremors have always been a very minor symptom. There is no pattern.
It can be so incredibly frustrating. Sometimes you just want to be in control again.
But there is no controlling Parkinson’s and there are no laws it must obey. We can only manage it.
Creating my own rules
So, I’ve made up my own rules. They start with grace: giving grace to myself when I’m feeling bad or my meds don’t kick in as I expected. I also give grace to my husband, friends, and family when they get frustrated with me and the disease. Grace includes trying not to be upset with each other, but instead being mad at the disease and fighting it together.
Another rule is to give up expectations regarding both how good something will be and how bad it could be. I never know how long a good or bad period will last. But I know it will end, so I hold on to the good for as long as I can and remember the bad won’t last forever.
My last rule is to remember that the only thing I control is how I face the world. This rule applies to everyone, not just Parkinson’s patients and caregivers. When I feel out of control and frustrated, I try to breathe, remember to give grace, and know that this, too, shall pass.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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