Guest Voice: Time looks different with Parkinson’s disease
My husband and I are counting our blessings by the hours
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Fifteen years have passed since my husband, Eli, was diagnosed with Parkinson’s disease. He first noticed his cramped handwriting had become illegible, but after that, he didn’t experience much change for a long time. With each passing year, however, additional symptoms cropped up. Now he is compromised in almost every aspect of his life.
Throughout these years, I have cared for my husband and tended to his needs. Time and Parkinson’s disease are both relentless. Parkinson’s takes over little by little. Despite medication, diet, exercise, socialization, and all that is prescribed, recommended, and simply intuited, it progresses. This disease slows down, limits, and restricts the basic functions of daily living.
Eli sleeps more hours now. He eats very little and is dependent on the services of generous caregivers who take care of his personal needs and assure his safety. He speaks with great effort. Sometimes he is brilliantly insightful. Sometimes he gets confused. Sometimes he is hallucinatory.
Five years after he was diagnosed with Parkinson’s, Eli was also diagnosed with stage 4 melanoma, and we didn’t expect him to survive. But he did. Six years later, as Parkinson’s affected his balance, he fell and broke his femur. We were told that he might not survive the surgery. But he did.
Since then, every time he’s had a cold, the flu, or pneumonia, we’ve wondered if this would be the time that he’d succumb. But each time, with Parkinson’s the only constant, he has rallied.
Eli and Rochelle Ginsburg. (Courtesy of Rochelle Ginsburg)
A little weaker and a little more dependent on assistance, he is still with us. Eli is blind now, and his hearing is faint. He sleeps more hours than he is awake. He doesn’t walk outdoors these days, nor does he come downstairs — but he eats, he breathes, he responds. Sometimes he even surprises himself with his own humor. He listens to music and holds my hand. He is here.
I greet him every morning, and he greets me in response. One day, I asked him if he had any advice he would like to pass on to his grandchildren. He responded, “Think clearly and know who you are dealing with.” I asked him if he had anything to say to me. The words came quickly: “Take care of the children.” Last night he advised me not to get too tired and to take care of myself because, “I need you.”
Every Parkinson’s patient walks a different path. Despite how we accept or deny its truth, despite how passively or aggressively we attend to its creeping intrusion, despite how fervently we look toward a cure or at least a treatment to keep it at bay, the reality is that, ultimately, Parkinson’s will have its way. How we walk that path is a choice.
Eli has made that choice. He lives with Parkinson’s the same way he has lived his life: with determination, patience, and acceptance, even while actively participating in his own care and working collaboratively with medical professionals and supporting caregivers. He complains little, cooperates much, and continues to hang on and hang in against competing challenges. As his wife and partner of 65 years, can I do any less?
Eli Ginsburg reads a book at home. (Courtesy of Rochelle Ginsburg)
Every day, I announce the calendar date to him, and I name the day of the week. Every night, I marvel that another day has passed and tomorrow will come and we’ll begin all over again. Events and activities that once were imperative are now categorized as memories instead of plans. Schedules that we once adhered to have now lost their urgency. There is no plan that is indelible, no date that is fixed. We turn the calendar pages one day at a time, and we count our blessings by the hours.
In his famous song “Time in a Bottle,” Jim Croce sang, “If I could make days last forever/ If words could make wishes come true/ I’d save every day like a treasure and then/ Again, I would spend them with you.”
My words cannot make wishes come true, nor can I spend days over again. But I do treasure every year, every month, every day, and now, every hour as much as I can. And I will continue to do so for as long as I can, with gratitude in my mind and my heart.
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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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