As I mentioned in my previous post I had a fallout with the nurse who brought me my medication that morning. It was one more unpleasant incident in the ongoing saga of trying to access appropriate Parkinson’s care.
It has left me totally drained of whatever little bit of self-esteem/character/competence I had left – it feels tarnished. My confidence in being able to manage my health here seems impossible – it would require teamwork, innovation and responsiveness that the system simply is not geared to provide.
I tried hard to contribute my skills to the mission, to make a contribution but that too , was not appreciated and was seen as interference.
So sadly I believe I will have to go, I have no idea where. I say sadly as I have gotten on well with most and the staff have allowed me a lot of leeway for my eccentricities.
My health situation is quite precarious. At stage 4/5 Parkinson’s my ability to manage the symptoms is limited. I don’t have the possibility to try and adapt the medication. So I am “off” most of the day which limits what I can do.
I am in constant pain, is that due to Parkinson’s or the melanomas that people are starting to notice. I have difficulty swallowing and even the medication sometimes goes down the wrong way. I am still very much a fall risk. Many late stage PwP often die either of aspirational pneumonia or as a consequence of a fall. Wherever I go that would be the most likely outcome. That used to worry me but now I see it more as a get-out-of-jail-free card, with my dignity intact. I don’t know what Fraser Health will want me to do…
Sorry about this rather negative post. But it does not even remotely reflect where I am at!