Patient Stories

Parkinson's: The Game Changer

Posted In: Nerve conditions Susanne Katz | January 9, 2014 | 01:53 PM

"We have to go back to the hospital," my father said to my mother.

We had just visited my sister and her new baby boy, who was born earlier that evening. My father was driving, my mother sat in the passenger seat, and I sat in the back, like I used to as a child.

"Something is happening to me," he said. "I don’t think I should drive."

After we returned to the hospital, we discovered that my father had experienced a small stroke. But as he was recovering, he began to show symptoms of Parkinson’s disease. It began with slurred speech and then his gait became a shuffle. His hands would tremble and he’d grab onto a wall or a piece of furniture to keep upright.

As the disease progressed, he became dependent on a wheelchair. Afternoon naps disturbed his work schedule. Years later, he retired from work and retreated into a world of loss and isolation. My mother was his sole caretaker for many years.

"Don’t let your father have any meat," she would warn me. "He takes L-Dopa because his brain no longer makes dopamine. He has these protein deposits in his brain and his motor skills have degenerated."

Since my father had been a world-class weight lifter, this seemed to be the ultimate punishment. How, I wondered, could he come to terms with losing his muscular physique?

It was in the last few years of the disease, during my weekly visits to the long-term care facility, that my father told me about things we had never discussed.

• "Take those vacations and visit those places while you can," he advised. "Don’t wait until it is too late to explore the world."
• "I don’t know how my brain is supposed to live in this body," he exclaimed. “You will see that your brain and your body don’t age at the same time."
• "Life is all about time," he explained to me one afternoon. "Eventually it boils down to meal time, nap time, television time and visiting time. Thank you for taking your time to visit me today."

Now when I see that shuffling gait, tremors and hunched-over posture, I see a person with wisdom locked inside of a body that once worked without stiffness. While speech and movement may be disturbed, words can be the greatest gifts, given to those who are willing to give the time to listen.

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