We (I’m J’s fella!) are seeing the Parkinsons nurse later this afternoon and I’m looking for any advice on the type of questions we can pose, so not to waste their time but to gain the most out of the visit.
J (56) was diagnosed 2 years ago which was a huge shock, and was quite quickly put onto Madopar following 3 visits with the Consultant in Poole Hospital.
I work with a colleague who’s wife also has PD, but based in Bournemouth, and it comes across that the level of support and information flow is much greater than we have experienced so far.
J has seen the nurse twice in the past 18 months and explained her general well being as…
Facial pinching / pouting
Slowness in movement
Voice loudness (decreasing)
Difficulty in swallowing…recent choking incidents
And there has been seemingly little or no change to J’s drug therapy, or much in the way of taking a different approach etc…
An example of my concern was when they were advised of J’s pinched facial expression, the Nurse said that she had not encountered that before and it probably wasn’t a symptom of PD. A few months later we went to a PD specific Dance / exercise event in Bournemouth and there were at least 3 people with the exact same symptom in a class of 16 individuals…not a bad statistical group to prove differently!
So I’m kind of concerned that we’re getting the best that Poole has to offer , and there could be better else where, or there’s really nothing we can do more…?
I’m intending to as in a constructive way what we should expect from their support, what and when would changes to J’s treatment be suggested and what might they be.
If anyone has any other advice, I’d love to have some…many thanks.