You have opened a very important area of interest for me. I too have stopped trying to explain anything about PD. At the same time I follow up research as much as I can - the Journal of Clinical Neuropsychiatry and Clinical Neurology makes availble some research papers that have informed the treatment and support we receive from our excellent clinicians. It is there that I first came across the term “pan - somatic” to describe Parkinson’s Diseases - it affects every part of your body and evry aspect of functioning.
And yet … the last time I mentioned Parkinson’s Disease to a neighbour the response was " oh yes that’s where your hands shake a bit isnn’t it".
No point trying to explain the huge physical impact , never mind the cognitive ipairments. Have you ever tried to engage anyone but a neurologist or parkinson’s nurse in conversation about the effects of the formation of Lewy Bodies from alpha synucleic acid (and other protiens). Just watch people’s eyes glaze over as they make their excuses and leave.
Oh and I had another fall yesterday.
As to your excellent question “what are they thinking” ? when they are made aware you have PD, I honestly think that ignorance of the often hugely disabling, life chaging condition is the point.
Parkinson’s Disease changes lives. Let’s be honest life is still good but in a very very limited way.
Take care Tamsin