Safe hands

MARIE: Today Jon had his second neurology appointment after moving to Denmark. You may recall that at his first appointment, the neurologist concluded that he is a complicated case and decided to send him Upstairs. Not to meet celestial management, but to see the real experts at the day hospital specializing in Parkinson’s.

So Jon was seen today by one of the very top people in the country when it comes to PD. We recently heard her speak at a research meeting arranged by the Parkinson’s association and were greatly impressed. I had hoped, but not expected, to see her again so am very pleased indeed that she will be Jon’s neurologist. Okay, pleased and also concerned, because this evidently means that Jon really is a complicated case. Which is shitty, but having it confirmed doesn’t change the facts of his condition. The main thing is that we both feel confident that if anyone can sort Jon out, she’s the one.

We have returned home with yet more medication changes, and are now waiting for Jon to be called in for a new MRI scan (his last was in 2007 and was used to diagnose the PD) and a neuro-psychiatric evaluation because Jon feels that cognitive changes are the most bothersome symptoms right now – that includes his poor short-term memory, difficulty concentrating, reduced analytical abilities, and trouble finding the right words (spoken and written, which is why I tend to write more blog posts these days).

In terms of the medication changes, we had been trying hard to discern a pattern to Jon’s day and match his medication intake to his wellbeing at different times. Without success as his condition seems to fluctuate pretty randomly, to the extent that at times he has symptoms of Parkinson’s, i.e. too little dopamine in the brain, at the exact same time as he has dyskinesias, which indicate too much dopamine in the brain.

We just couldn’t understand it. But the neurologist could: Jon’s recent DAT scan shows that one side of his brain is more affected by the disease than the other, so he’s been getting too much dopa on one side and not enough on the other! This is related to the quick release tablets he’s been taking, so the plan is to shift him almost entirely on to normal release tablets which should even out his condition considerably.

I so hope that works, because I don’t mind telling you these last few weeks have been pretty miserable. And wouldn’t it be wonderful if there’s also something that can be done to treat the cognitive problems?