Today has been a warm, confusing day. It was hard to make sense of all the feelings I was experiencing.
The website & video saga
I was still struggling to come to terms with the negative reaction I got to my evaluation of our website – that I had done at the request of the boss. She has not discussed my evaluation with me yet so I don’t know what she thought, but she probably won’t reply.
Parkinson’s Progress (sic)
Since I have been on the new levodopa regimen as prescribed by the Parkinson’s clinic/center of excellence at UBC three months ago, I have felt really awful. And I was expecting to feel dramatically better. It is as if the medication is not working at all. After about two hours after taking the meds (2 tabs Sinemet & 1 tab Entacapone) the benefit has worn off and I feel weak, shaky and very tired. It is my understanding that when there is a sudden change in one’s symptoms, it is usually because of a change in medication.
As I mentioned in another post, I feel horribly alone on a clinical level. There is no one that I can turn to for help. And I have certainly tried.
I have not been examined physically by a doctor since Covid – although our doctor did use his stethoscope to check when I asked about the possibility of myocarditis as a result of covid affecting my swollen legs. His comment was that I should see how much more swollen the legs of some of the other people here are! He has a point. I was talking to a rather pale-looking care aid who had just spent an hour working with a resident with stoma bag!
So what is the point of writing all this?
I have been reading my new book, “The New Parkinson’s Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications” that I wrote about yesterday.
It has been helpful and had me going over my notes on the basal ganglia and the various motor pathways (I was tempted to buy a model of the brain to help me remember the relative locations of the bits and pieces – then I saw the price on Amazon!).
In the book there is a chapter on the prognosis of Parkinson’s. It is put very diplomatically that if you are nearing 80, you have done well and one cannot expect the meds to relieve the symptoms for much longer. So I guess the sense of urgency, the sense that time is short, is very real to me.
Karl, my second oldest son, came to visit me today unexpectedly. I really appreciated it. He was here on business for a few days and was now on his way back home, a short distance outside Armstrong. He was telling me about the renovations he was planning for their house. I have not seen the house.
He could not stay long as it is a good 8 hours drive back. As he left I realized that it was probably the last time I would see him or the rest of the family.
So today has been a warm, melancholy-filled day.