First visit to a PD group


#1

My first visit was very disappointing. Of the 16 people there, only 1 was a regular one! But when the topic of hallucinations and dementia were brought up the woman was hushed! They only wanted to talk about the physical! There was no need of me speaking up, because that was why I was there! So am I to go to an ALZ meeting instead? The physical doesn’t bother me half as much! Am I and that lady the only ones with this problem: affected by the moons and sundowners?


#2

Hi Jaffy, sorry you’ve had no response to this, I’ve only just seen it. Sounds a pretty poor experience & to be honest, not a group I’d return to, sounds as though they are in denial about some aspects of PD! Have you tried contacting Parkinson’s UK about your experience? I’m not sure how much input/knowledge they have about what happens in local groups but the groups carry their name.


#3

I’ll be very honest about this and admit that, as a PD sufferer who only has physical symptoms, I’m not keen on spending time talking about dementia. In fact, my husband and I attended a Parkinson’s Day a few months ago, organised by the Parkinson’s group and the Parkinson’s nurse, and came away agreeing we would not attend anything like it again, because of the emphasis on dementia.

I’m not lacking in knowledge on the subject, and I am well aware of the risk (80%). My father had Parkinson’s dementia and my mother has Alzheimer’s.

However, I don’t see any purpose in anticipating dementia, when I really need to remain positive and deal with the physical symptoms I have now.

My personal view is that there should be separate groups for people dealing with dementia.