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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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12 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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So many of the challenging symptoms you mentioned are invisible too, which makes it even harder for people to understand how much of an impact they have. Thanks for sharing.
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I agree with the responders, all of them. People don’t understand that PD is systemic and affects everything we do or can no longer do. I struggle with short term memory loss; it’s what led to my retirement. But everything slows down, and the slowing down is what I hate most about PD. Like one poster said, I don’t know who I am anymore. And as soon as I think I do, something else changes and I am no longer who I was yesterday.
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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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Yes! People with Parkinson’s aren’t defined by the disease, it’s just a factor or component of daily life.
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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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The silent symptom Fatigue!!!
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Sometimes I feel productive and engaged the next I am overwhelmed by simple tasks. Also, at the end of meds I tend to fade.
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I especially agree about the fatigue. I have been taking exercise classes at the local YMCA and a guy in my TRX class keeps saying “one can do anything if they just put mind over matter.” I recently have had muscle fatigue so badly that I had to skip some exercises. My balance has also kept me from the Bosu ball exercises.
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That there are a multitude of symptoms its very hard keeping up with it all. I’m no longer the person i was! i dont know WHO i am now anymore.
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The one thing I would like people to know is that the disease can manifest itself in a variety of ways. Some people show tremors, some slowness, and some can have walking issues. The most significant event I would like people to know is that PWP can be nervous about doing a task that is mundane. The source of stress in PWP, can be anxiety over Parkinson symptoms getting worse. We tend to look ahead in a compulsive way.
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