By A.C. Woolnough
We go by many names: People with Parkinson’s, PWPs, Parky’s, patients, sufferers, subjects, casualties or even victims. No matter the label, no matter the term you use, we all need support—physical, emotional and spiritual. Although in our stubbornness, we may try to deny that fact, it is true nevertheless. Denial is a trick we play on ourselves.
We say things like, “I’m OK” — even when we are hurting inside. “My symptoms are progressing slower” (even though we know they aren’t). “No, the tremors don’t bother me; I hardly notice them” — while spilling coffee walking across the carpet. “I can do that, I don’t need help” — even though we can’t button our own shirts. Denial doesn’t help us or those around us. The more we insist we don’t need care or support, the more likely we are to get ornery, grouchy, ill-tempered or crabby. We may work even harder to push others away. We may practice our favorite strategy and shut down.
Unfortunately, denial isn’t restricted to PWPs. Alzheimer’s, dementia, surgery, celiac, or cancer can provoke similar feelings and behaviors.
Last month, I posed the question, “What do we need?” (More money for more research towards a cure.) This month, I will provide a different answer. We — each of us, all of us — need someone who is there for us: a care giver or a care partner. Those names are totally inadequate. Instead they should be called heroes, champions or angels.
One of our friends is Captain Dan —also known as the pirate. He sails around in his pirate ship and brings joy and excitement to kids of all ages. When he and I stood in line to get our neurological conditions, he got early-onset Alzheimer’s and I got Parkinson’s. That’s why we call ourselves “brain buddies.” Coincidentally, his angel and mine are both named Pamela. These care partners never get the amount of appreciation or gratitude they deserve. What follows is my love letter to care partners everywhere and specially to mine.
Last night, you saw the subtle signs I try to hide, and you knew I was hurting. Without being asked, you brought over the heating pad and brought me a cup of hot chocolate. You didn’t expect thanks, and in my discomfort, I didn’t give you any. For that, and for the countless thoughtful things you do every day, I say thank you.
When I stop and think; when I step outside myself; when I take an objective look; when I see things from your perspective, I am amazed. I wonder why this lovely and loving angel is going above and beyond to meet my needs — sometimes knowing what I need even when I don’t! How do you listen to me complain about little things, minor distractions and inconsequential trivia without responding? How do you continue to provide a safe place for me to talk about my fears and let me cry?
How do you put up with my moods, my occasional meanness, my all-too-frequent outbursts and my seeming lack of gratitude? There is a certain irony to the fact that I am a patient while you are patient. I think I have the answer to these questions and a response to these observations. You are truly and absolutely an angel — my angel! You are an earthly embodiment of goodness, kindness and love. How I wish I could mirror that for you. The best I can do — which is to make a commitment to do better, to practice gratitude, to acknowledge and appreciate you more is still inadequate.
I know you love me and please know I love you, I cherish you and I need you. The words I use to describe you help me express how I feel: kind, thoughtful, caring, precious, strong, treasure, gentle, sweet, valued, and compassionate.
Thank you for everything,
After being diagnosed with Parkinson’s Disease, A.C. is calling on his 37 years in K-12 education to become a “Parkinson’s Warrior”educating the public, advocating for a cure and participating in research.
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