Two months ago, I was asked to write about how PD affects me and what I would want people to know about Parkinson's. That request inspired this blog. As you read through my description of this neurologic condition, please keep in mind that no two cases of Parkinson’s are alike. Every person afflicted with this disease has a slightly different rendition of the illness and its effects. The following is my own personal narrative.
Parkinson’s Disease is like a white elephant in the room. Now, I know I just combined two idioms in that last sentence, but I will do my best to explain my line of thinking.
If I were to explain to someone what it is like to have Parkinson’s, I would relate it to an elephant. To be diagnosed with Parkinson’s and withstand the challenges it presents is massive, daunting, and scary. And, while I consider elephants to be magnificent creatures, they are wild animals. Untamed animals are unpredictable and thus command respect. Whether or not you like them is impertinent; you must respect them. Parkinson’s is much the same. I will find myself lulled into a false sense of security during stretches of time when it remains stable. I start to believe I fully understand this illness and become complacent. Suddenly, Parkinson’s sneaks up on me and I find myself face-to-face with this menacing beast yet again. Recognizing and respecting the fickle nature of this malady has been empowering for me and helps diminish the fear that accompanies the diagnosis of Parkinson’s.
A white elephant is an unwanted, or burdensome, possession that is difficult to dispose of. While I am taking some liberties with my definition here, I assure you that Parkinson’s is a burden that I possess but don’t want - and wish I could get rid of.
My Parkinson’s causes varying degrees of muscle stiffness. The physical strain of fighting to move them is exhausting, provided they move at all. Some days I feel as if I’d have more luck moving an entire elephant than my own legs. Even the simplest of tasks - such as walking - becomes a monumental challenge when equipped with tense, rigid muscles. I now have a greater appreciation for the times I can go the entire day without struggling to walk.
I am still fairly independent, but my physical limitations necessitate that I have a caregiver. That burden falls on my family. I have always been fiercely independent and have tremendous guilt associated with needing and asking for help. In some respects, I feel powerless against the disease, but it does not have complete authority over me. To try to help slow the progression of my Parkinson’s, I choose to exercise daily. Exercise makes me feel better and improves my mobility and symptoms.
I have also found that throwing myself into home improvement projects, which I plan and organize, helps my memory and cognitive function. For example, my winter project this year was painting my front hallway, kitchen, and dining room. Each morning that I come downstairs to the new colors is a reminder of what I can still accomplish. Now that my daughters are all older, having reasonable projects to focus on gives me a sense of purpose. For me, keeping my body and mind busy are key components to my daily function.
This brings me to defining the phrase about the elephant in the room. This idiom refers to a large issue that everyone is aware of, yet nobody is willing to talk about. It took me a number of years to realize that I am not the elephant in the room, but rather Parkinson’s is. It is important that I maintain my identity and sense of self. Though I have Parkinson’s, it does not define me. I will always find ways to adapt.
Believing I could protect my children from my harsh reality, we denied Parkinson’s as a family for many years. To plan vacations or family get-togethers meant restricting activities to ones I could physically participate in, which were not always what the others wanted to do. At times, the disappointment was painfully obvious. Parkinson’s has permeated its way into our lives to become a member of the family. It has basically become a sibling to my children – growing and transforming over time with them. They have never known our family without it and will carry its influence for rest of their lives.
Life is a mixture of good and bad days, but if I am having a rough time, please ask me if there is anything to do to help. So often people find it awkward to discuss, or they believe I will be offended if they broach the subject. Parkinson’s is isolating enough as it is. It makes me feel misunderstood, and often, all I wish is for someone to listen and validate my feelings. I am not looking for a solution, for there isn’t one and I accept that. But to turn a blind eye, or speak about me as if I am not even there makes me feel invisible. The more this happens, the further I withdraw.
Usually I’m a bit more optimistic about my illness, but currently we are in the midst of a pandemic. The isolation from COVID is straining everyone, myself included. I understand the quarantine is necessary, especially for people with a chronic, progressive diseases. It is definitely necessary.
But.
Certainly.
Not.
Easy.
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