Movers and shakers podcast has also reinvigorated my hwp. We have listened to them all. We have particularly enjoyed the ones with guest speakers who have a real interest in PD. They have frequently signposted us to further information we new nothing about, and my hwp is seeing some success trying out new things to help him improve his quality of life. Of course it’s not without some aspects of input we may not agree with, but it’s good to hear from a group of people who live with the same condition, and hear how they cope. Yes they may be deemed a more ‘privalaged’ group, and they do seem to have more ready access to be best of treatments, but we enjoy hearing up to date information in this format. I suppose everyone will find somethings of more benefit to them than others. Variety of information is good. As for charters… I’m also sceptical of bits of paper that detail how care ‘should’ be delivered. There is never enough resources to provide it as we would like it. However I m grateful to those who try.
Hi folks. I have just read this thread for the first time, agreeing with most of what everyone said, even when they seemed to be disagreeing with each other. Now I’ve already lost track of all I read. (Is that a symptom of PD?!).However, I think help offered by anyone in any way, is not to be refused. If these movers and shakers whom I haven’t listened to, I must confess, want to take some kind of action, be it a charter or whatever, then let them look into it. And let us remain open to their findings.
I think too a booklet if some kind would definitely be beneficial on first being informed of diagnosis, even if it is only to outline what treatment etc is available in the particular hospital you are attending, whether you can expect further appointments with a nurse or a consultant, and some details of where you can go for further help, sayParkinsons uk local groups, or online…… Being diagnosed with Parkinson’s is scary and remains scary, but you do get used to it. No matter how you react to having Parkinson’s, or how it affects you, any help of any kind is gratefully received by me. Happy New Year to all.xx