Waiting game

This is a small update on my fourth visit to my Neurologist. It was a fairly short meeting, we quickly agreed that Rasagiline at 1mg per day was doing enough for now. He commented that I was very much more animated than previous meetings and I agreed, in that regard, I was doing well. I did ask a few questions about not having much of tremor and the real pain I have in my knees (which I don’t think is PD related but possibly down to high levels of steroids I took in my 20s to combat Chrons’ disease). Regards the mild tremor, my Neurologist smiled and said the disease affects everyone differently, so there is nothing to read into that!

However, that goes against my enquiring mind to a degree. I have read some medical journals which talk about sub-types of PD and different correlations to different rates and types of progression. This links back to my first blog where I raised the point about tremor  or rigidity dominant features possibly indicating a slower or faster progression, respectively. In my mind there must also be a difference between young-onset and later onset disease. I think I need to do more research about this. Any thoughts, anybody?

We talked about the possible side effects of  Dopamine Agonists again. I am not yet convinced of their merit. Risking (even a 10% chance) on gambling, porn, or shopping addictions, or other compulsive behaviour is still nothing to be blasé about. However,  it is clear that it is my Neurologist’s approach in my case and he has responsibly asked me to put contingencies in place around the financial risk at home and work.

I have just under 6 months to my next appointment & we’ll review then; unless the Rasagiline really isn’t working well enough before then.

So back to the problem of this disease. I am left in the dark, scrambling around for a way forward and a better sense of how I need to adjust my life. Of course it isn’t life threatening (at least not as a secondary cause of death for a long long time yet) and that is something to be thankful for. Still I am now in a waiting game for the next phase to come along.

I am sure lots of us do but I have also now read and really enjoyed Michael J Fox’s ‘A Lucky Man’. An inspiration, and a great example to follow. An advocate and an educator of the disease, he has done so much for all of us who follow him. I want to play my part too, and I will in time as I get myself sorted…..