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What’s something you wish more people understood about living with Parkinson’s?
The public often misunderstands the day-to-day experience of Parkinson’s, which can be isolating.
What’s something you wish more people understood about living with Parkinson’s disease?
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4 Replies
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I wish they understood the many and varied ways it manifests. For example the way an off day can mean significant memory and comprehension issues; or how anxiety levels can affect simple day to day activities. So many people see it as simply tremors, and are completely unaware of the issues with memory, anxiety, psychosis, etc.
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They don’t understand how sometimes I can’t think straight, and my DBS procedure seems to have affected my memory and I can’t remember how to do things. I wish people would be more patient with me.
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All of the above, but generally it would be great if the non PD world understood the way PD can affect everything about the body and does most days in one way or another and at the same time understand that we still have a sense of humour, ie: we’re normal folk!!
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The pubic needs more understanding of the different kinds and amount of pain PD patients experience. Muscle aches, joint pain, spasms and cramps, neuropathy, sciatica, headaches and migraines, and that all-encompassing every cell in your body is aching kind of pain. We can have some or all of this at varying levels every day.
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