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What's a common misconception about Parkinson’s?

MyParkinsonsTeam asked a question 💭
San Francisco, CA
May 21, 2024
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Answer Summary

Members passionately corrected the widespread misconception that Parkinson's is primarily about tremors, sharing that many experience few or... Read more

Members passionately corrected the widespread misconception that Parkinson's is primarily about tremors, sharing that many experience few or no visible shakes while struggling instead with non-motor symptoms like cognitive decline, apathy, severe pain, sleep disruption, balance issues, and freezing. Several members described frustration with medical professionals and the public who assume all Parkinson's patients are the same or that visible symptoms equal disease severity, noting that internal tremors, dyskinesia, constipation, difficulty swallowing, and dystonia are all part of the varied and unpredictable nature of the disease. A recurring theme was that Parkinson's affects everyone differently with no single timeline or symptom set, that non-motor challenges like memory loss and emotional flatness can be more debilitating than tremors, and that exercise, physical therapy, support groups, and self-advocacy are essential tools for living with this highly individualized disease.

A MyParkinsonsTeam Member

I think the most common misconception is that Parkinson's is one set of symptoms,mostly a tremor, and that everyone is affected exactly the same. As those of us who deal with this treacherous intruder have come to learn, PARKINSON'S is so much more. Generally tremors, when present, are only a small part of this disease. No two of us experience PD in the exact same way.

June 18, 2024
A MyParkinsonsTeam Member

Misconception that PD is just tremors, people are unaware of all the other issues that go along with it.

May 21, 2024
A MyParkinsonsTeam Member

One misconception is that PD is one set of symptoms in a certain order that you will experience every day...in reality, I think PD is a variety of symptoms that frequent with PD randomly...that is not to say, everyone will experience all the symptoms in the same order or at all...Forest Gump said it best "Life is like a box of chocolates."...and so is PD...🤠

June 26, 2024
A MyParkinsonsTeam Member

My husband was diagnosed March 2019 by a DATScan, people assume ALL Parkinson’s patients are the same and they aren’t. My husband right off the bat with onset dementia effecting his short term memory, PTSD and altered mental status. Plus his other health issues.
Plus it’s not only the patient that’s affected it’s also the family of the patient.

June 18, 2024
A MyParkinsonsTeam Member

I think the cognitive losses are hardest to understand and communicate. I know it upsets my family. Also apathy is more a curse than a blessing. I try to focus on what is important even though I may not be feeling the emotions that I should.

May 29, 2024

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