Promoting understanding during Parkinson’s Awareness Month
With advocacy and education, we can change people's perception of the disease
If someone says the words “Parkinson’s disease,” what’s the first thought that comes to your mind? How do you visualize this disease?
I can’t help but think about how I used to visualize Parkinson’s disease. I probably learned about it at some point during my childhood, and the image I had was that of a creaky, older, bald-headed man with hunched shoulders, shaky hands, and a rickety cane.
Because April is Parkinson’s Awareness Month, I want to acknowledge the common misconception that this disease affects only the elderly. Typically, when we think about chronic illnesses like Parkinson’s, we assume that the patient is older or near the end of life, similar to how I saw it as a child.
The profound impact of Michael J. Fox
A pivotal moment in changing misconceptions about Parkinson’s disease happened when actor Michael J. Fox was diagnosed in 1991. Fox singlehandedly altered the face of this disease in 1998, when he revealed to the public that he had it — which opened our eyes to the realities of an early-onset diagnosis. I remember reading about his struggles and early symptoms, stunned to learn that he was only 29 years old when diagnosed.
While Fox’s revelation was years before my then 38-year-old husband, Arman, was diagnosed with early-onset Parkinson’s in 2009, I recall feeling a deep sense of concern and sadness for both the actor and his family. I’d watched him in countless movies and TV shows for so long that he felt like an old friend, and my heart ached for that friend.
According to Johns Hopkins University, “The biggest risk factor for developing Parkinson’s is advancing age,” and the “average age of onset is 60.” Because age is the most significant risk factor, it’s understandable that many people might assume Parkinson’s affects only older folks. Although it’s much more common to be diagnosed later in life, about 10% to 20% of Parkinson’s patients are diagnosed before age 50. Among those, many are diagnosed much earlier — some, like Fox, even in their 20s.
Patients with early-onset Parkinson’s disease can still live full, productive, and meaningful lives despite the constant challenges they face. With early-onset Parkinson’s, fortunately, disease progression tends to be slower, and the incidence of dementia is less frequent. I suppose that’s what you might call the silver lining, or the bright side, of an early-onset diagnosis.
It’s safe to say that Parkinson’s isn’t just an older person’s disease. A vision of my strong and handsome young husband has replaced the image of Parkinson’s I’d created in childhood. On the day of Arman’s diagnosis, he wasn’t shaky or hunched over, although he was well on his way to being bald!
During Parkinson’s Awareness Month, educating the world about both early- and late-onset Parkinson’s disease is crucial. But it’s not just this month. I personally hope to raise awareness today, tomorrow, and every day. Teaching family, friends, and neighbors about the disease and its challenges is an easy way to spread the word. Fundraising and advocating for research and disability rights are other great ways to get involved.
If you’re a caregiver to a loved one with Parkinson’s disease, celebrate yourself this month and take some much-needed “me time” if possible. Take up your friends on their offers to make dinner or give you a break. It’s OK to let someone else help out. You deserve it.
If you’re a patient with Parkinson’s, celebrate your strength this month. Give yourself a round of applause every day and honor the warrior that you’ve become. Remind yourself that just because you have Parkinson’s, it doesn’t mean that Parkinson’s has you.
Happy Parkinson’s Awareness Month!
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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Bettye Short
You made some interesting points, which I will use in a presentatinn.