5 common misconceptions about Parkinson’s disease

Before my dad’s Parkinson’s diagnosis in 2013, my understanding of the disease was limited. I knew someone from church who had it, mainly because their tremors made it extremely visible. But I knew little about the disease’s nuances, such as who is most likely to be diagnosed with it, how people experience it differently, and how its treatment isn’t simple.

Based on my experience over the years, the following are five common misconceptions about Parkinson’s that I’ve encountered:

1. Tremors are always a part of having Parkinson’s: Because tremors are one of the most recognizable Parkinson’s symptoms, it’s easy to assume that one must experience them in order to have the disease. While my dad has always experienced this symptom, not everyone does.

2. Parkinson’s affects only older people: As Parkinson’s News Today notes, “most people with Parkinson’s first start to notice symptoms when they are age 60 or older. In about 10% to 20% of cases, however, Parkinson’s begins before a person turns 50. These cases are commonly referred to as early-onset or young-onset Parkinson’s.” My dad was diagnosed at about age 60, but the disease clearly can affect a wide range of ages.

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3. Everyone experiences Parkinson’s the same way: While some diseases come with cookie-cutter symptoms that appear somewhat uniform from person to person, Parkinson’s can vary dramatically. This is one reason the disease can be challenging to diagnose and identify.

4. A person who looks OK must be feeling OK: Parkinson’s can come with a range of symptoms that aren’t easily noticeable to the outsider, including fatigue, stiffness, and pain. While symptoms like these are relatively common among Parkinson’s patients, they’re often underrecognized, which can leave the person with Parkinson’s feeling misunderstood. My dad experiences all three of these symptoms, and their intensity varies daily. But since they’re not immediately obvious to me, as someone who isn’t living his experience, I find it helpful to communicate with him about how he’s feeling. This helps me gauge what our activity levels should be on a given day.

5. Parkinson’s progresses at the same rate for everyone: Estimates suggest that it takes 10 to 20 years for most people to reach the advanced stages of Parkinson’s, but that timeline can vary from person to person. A Parkinson’s journey is rarely straightforward, and understanding that everyone experiences it differently can help to inform how we approach it. While my dad is likely in the late stages of the disease, I think deep brain stimulation significantly improved his quality of life and the pace at which his version of Parkinson’s disease has unfolded.

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.