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My Turn: Hiding Parkinson's disease became her worst symptom

August 29, 2011|By Allison Conway, Special to the Los Angeles Times
  • Allison Smith-Conway tried for a long time to keep her Parkinson's disease from her husband, Jason.
Allison Smith-Conway tried for a long time to keep her Parkinson's… (Kevin Kwan )

I sat in an uncomfortable flower-print chair in my neurologist's office. The nurses in the front office were talking to each other about what type of sandwich they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of coffee. It was apparent that someone put much effort into creating a calm and relaxing environment, but at the moment it felt as irritating as wearing an itchy sweater in the desert.

Hearing the diagnosis — "You have Parkinson's disease. There is no cure, and you will struggle with this the rest of your life." — was like being punched in the stomach. I felt cheated out of a life that held so much promise.

I looked down at my rigid left arm, resting lifeless on my lap. It felt alien. This was not the same arm that helped me make the cheerleading squad. These were not the fingers that I used to play the flute in my high school band.

I was angry, sad and scared. You can prepare for a new job, a baby or a tropical vacation. But there's nothing you can do to prepare to watch your body deteriorate at the age of 32.

I felt damaged. Walking was starting to become a struggle. I feared that anyone who saw what I had become might pity me or look down on me. So I spent every day trying to hide my diagnosis from the world — even from my husband, Jason.

I was shocked by how fast my disease progressed. Looking into the mirror every morning became the biggest challenge of the day. The expressionless face that stared back at me seemed unfamiliar.

My body moved slowly through my morning rituals. When I tried to button my shirt, I got frustrated that my fingers couldn't seem to figure it all out. I was just about to yell something vulgar when I heard my husband coming up the stairs. A wave of panic rushed over me. How was I going to hide this?

Up to this point, I had found some absurd explanation for every awkward symptom of my young-onset Parkinson's disease. When Jason entered the room, I swung around with a smile, as if I had intentionally left my shirt unbuttoned for him. He grinned back, and I felt relieved that I had averted another possible disaster.

Then I realized that the disaster was not the disease or its symptoms but the fact that I was trying to hide who I really was. All the energy I spent trying to cover up my illness had drained me.

I could not keep this from the man that I loved anymore. A little more than a year after my diagnosis, I sat my husband on the couch and tried to explain what Parkinson's disease was. It was my "CliffsNotes" version, direct and to the point.

After spilling my well-rehearsed speech, I took a breath and waited for his reaction. He just stared at me with a confused look on his face and said, "Um, I knew you had Parkinson's disease."

I began to cry. All the days I spent trying to be perfect were for nothing. The man I had tried to protect from the devastating effects of my illness had known my secret all along.

"My disease won't go away," I blurted out. "It will only get worse, and I don't want you to see me or remember me like this. I don't want to burden you!" Jason looked at me and calmly said, "A burden is something that is placed on you, not something that you choose."

He had chosen to be with me, Parkinson's or not. The burden was the fear I had placed on myself.

Conway is a certified therapist and personal trainer and founder of Parkinson's in Balance in Laguna Nigel, which provides education, support groups, fitness classes and psychotherapy to those affected by the disease.

My Turn is a forum for readers to recount an experience related to health or fitness. Submissions should be 500 words or fewer, are subject to editing and condensation and become the property of The Times. Email health@latimes.com. Read more at latimes.com/myturn.

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