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Sarah

It started slow. I heard that dreadful thud as I lathered shampoo into my hair. I shut off the water, wrapped a towel around myself and flew down the stairs, still dripping wet. There he was, my father — walker and all — laying on the floor. "I was trying to walk to the bathroom and I fell," he said. It was obvious something was wrong.

Soon after came the dreadful diagnosis. At 72, he was diagnosed with atypical Parkinson's disease. I was 22. Fast forward three years, and I'm writing this from his hospital room. I know this disease is progressive, I know there's no cure and I know better to believe someone who tells me and my family that everything will get better.

People often ask my mother, “What’s your secret to losing weight?” What seems like a harmless question is really a reminder that her drastic weight loss was not intentional. Out of true love, my mother has devoted the last three years of her life to being my father’s full-time, 24/7 caregiver. Her secret: stress and physical strain.

My parents can’t eat at the same time. Instead she feeds him first and eats second. Instead of sleeping eight hours at night she frequently wakes up to help my father. A saint in all she is, my mother has willingly forfeited her life to help ease my father’s. Parkinson’s had made life difficult, to say the least. 

Just a few weeks shy of my 25th birthday I am faced with the debilitating truth that my father won't be able to celebrate with me at home. Instead, I'll be visiting him in the nursing home.

Looking forward, my father will never be able to walk me down the aisle or dance with me my wedding. I cry over the fact that he will never know my future children. The worst part is, people want to help me, they want to try to understand or relate and they can't. Instead, their unsympathetic impersonal one-liners fill me with rage.

Avoid these insincere one-liners people use when they don't know what to say:

  • “It'll get better.”
  • “I’m sure it will all be okay.”
  • “God doesn't give us anything we can't handle.”
  • “I feel bad for you.”

Instead, don't ask, just listen. Cry with me. Hold me while I'm silent in thought about all the father-daughter moments that have been robbed from me.

Parkinson's isn't a joke, but my family copes through humor. My brother and I put on a two-man comedy show in my father’s room just to see him smile. There are few capabilities my dad still has control over, thankfully smiling and laughing are two of them.

One day, one of my most treasured memories will be my brother and I standing at the foot of my father's hospital bed cracking jokes until my father is in tears laughing. But, because of you Parkinson's, my father will never be able to walk me down the aisle. So, when you try to "relate" to my situation or help me, just keep these things in mind.

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