Ten years into my journey with Parkinson’s and still enjoying a full life

I never put much stock in the belief that, “Everything happens for a reason.” ‘Everything’ never refers to something good as in, “She won the lottery for a reason.” This needs no explanation. More typically, ‘everything’ refers to something bad as in, “I was only 44 when I was diagnosed with Parkinson’s disease.” No “reason” can make this palatable.

I knew I had Parkinson’s before I received my diagnosis, though this didn’t make it any easier to hear. I wanted to believe the neurologist who had been treating me for essential tremor for a year, but my all-consuming Internet research told me otherwise. I went to a movement disorders specialist (MDS) for a second opinion. Almost immediately she ticked off a list of symptoms, including lack of arm swing and “cogwheeling” rigidity in my wrist, and asked if I had noticed these. I broke down and wept.

Vivid memories of my father-in-law in the end stages of Parkinson’s 15 years earlier came rushing back to me. He was an empty shell of a man, moaning incomprehensively and curled up in fetal position in a nursing home bed waiting to die. I was terrified that this could be my fate as well.

My MDS assured me that newer medicines would help me manage my symptoms and enjoy a good quality of life for a very long time. If I had to have some neurological disease, she said, Parkinson’s would be it because the cure was within reach. She gave me permission to feel sorry for myself for a day or two, but after that, she said, I had to return to the business of living.

At the time, my younger son was finishing his junior year in high school and my older son was away at college. My husband and I had begun planning our “empty nester” years, and having a progressive, incurable disease was not in the picture. I could feel our dreams slipping away. I committed to trying to focus on positive rather than negative thoughts, and to living in the moment instead of projecting what the future may bring. This is easier said than done for someone once described as the “poster child” for anxiety.

Having recently passed my 10-year mark on my journey with Parkinson’s, I can honestly say that I am doing far better than I ever expected. I still do everything I did in my pre-Parkinson’s life — albeit slower, and with pain and a little help. I am looking forward to dancing with my husband at our younger son’s wedding in June, and am hopeful that, in due time, I will see the birth of and get to know our grandchildren.

Even so, I am always aware of the sound of my biological clock ticking down, knowing that without a cure, my Parkinson’s eventually will advance. I won’t go quietly into the night, however. I refuse to voluntarily relinquish an inch of ground to this disease that already robs us of so much.

Hope springs from refusing to allow Parkinson’s to limit or define us, and from believing that the next clinical trial we join or alternative therapy we try, may lead us to the cure.

“Once you choose hope, anything is possible,” said the late Christopher Reeve.

“And I do believe…”

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