Early-onset Parkinson’s taught our family to embrace being different
My husband's diagnosis has made our journey uniquely wonderful
Recently, for a column I was writing, I was looking for a good definition of Parkinson’s disease. I’m always amazed that much of the information out there about Parkinson’s disease doesn’t apply to my husband, Arman, and his experience with the condition. Many articles focus on tremors and being diagnosed later in life, whereas Arman was diagnosed at age 38, and slowness and stiffness were his first symptoms.
Early-onset Parkinson’s disease is rare, and being diagnosed before the age of 40 is even more uncommon. According to the Michael J. Fox Foundation for Parkinson’s Research, about 10%-20% of people with Parkinson’s disease have the early-onset type.
When I was growing up, I never wanted to be different. I preferred to stay under the radar and keep to myself. Being different felt scary and uncomfortable, so blending in was easier for me. It wasn’t until my teenage years that I began to embrace my unique self and feel comfortable in my own skin.
Embracing our rarity
As a parent, I faced a unique situation. My children were young at the time of their dad’s Parkinson’s diagnosis, so they grew up in a world where they couldn’t stay under the radar. In our small, tight-knit community, we were known as the family affected by Parkinson’s disease.
I was terribly afraid of my kids bearing the heavy load of chronic illness, so I carried it all myself. I wanted their childhood to be picture-perfect so they wouldn’t remember the sadness hiding behind my smile. I did everything I could to make life “normal.” I didn’t want them to feel different, because I remembered that fear from my own childhood.
After years of trying to shelter them from the inevitable, I slowly began to realize that they were OK with our rarity. They actually embraced it, as did their friends, classmates, and our community.
It turned out that, for them, a perfect childhood was actually the life we were living. Chronic illness didn’t ruin it; in fact, it was the opposite. Parkinson’s gave my kids a gift by teaching them valuable, real-life lessons.
My children grew up in a home that required patience, empathy, selflessness, and kindness. These skills are not always easy to instill in kids, but for our family, they were simply built into the fabric of our household.
It has been over 15 years since Arman’s diagnosis, and I look back proudly at our rare family experience. While our path hasn’t been what I’d envisioned for my family, I am happy to say that it has been even better.
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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