Checking In (January 2023)

Ok, so these updates are further apart than I was anticipating when I started, but I guess that's the nature of a (thankfully) very slowly progressive disease like Parkinson's. 

So what's happened since the last check in? The drugs trial didn't come off (I was initially disappointed, then relieved that I wasn't going to be tied to quite so much travelling) but the remote monitoring project did happen and I'm now in the habit of using an extra iPhone and Apple Watch to measure (some of) my symptoms once a month.  

Parkinson's - A Walk in the Park

My symptoms are probably a wee bit worse than they were at this time last year - but at the moment they aren't stopping me doing what I want to do, and I'm still resisting starting to take regular meds (mainly on the basis that I don't think I need them).

Everyone I talk to in the Parkinson's community (be they other patients or medical professionals) seems to be very enthusiastic about exercise as the main 'intervention' for Parkinson's symptoms - I've been walking every morning (even in the rain) recently, often just laps of the local park.  And supplementing this with Nordic Walking, rowing (on a machine rather than on the water) and stretches/weights/resistance bands. I feel a formal exercise plan might be needed - not least because it encourages me to do the things I don't like doing as well as the things I do. 

Back in September I was still pretty deep in denial about having Parkinson's - more recently a few more people have been let into the 'secret', but I'm still being very selective about who I share the information with.  The more time that passes the easier it feels to accept the diagnosis as 'normal', and it's good to be able to talk with people who know and for Parkinson's not to be the only (or at least main) topic of conversation. 

One theme that has come up in Parkinson's conversations (once you get past the symptoms and date of diagnosis) is the European Parkinson Therapy Centre - they don't offer miracle cures but they do apparently help with learning to live with Parkinson's - so (since I do need a bit of help in learning to live with Parkinson's) I've booked myself in for a couple of weeks there in the spring, topped and tailed with a few days walking in the Italian Lakes - there are relatively few pluses to having Parkinson's maybe the excuse to spend a month in northern Italy is one of them.

I think my final thought for this episode is about trying not to worry about things - in time I know my symptoms are going to get worse and there will be things I can't do, but sitting fretting isn't going to help. Similarly, spotting when I'm getting stressed about something trivial (for example mislaying something around the house) isn't worth the angst (or the guilt associated with getting angry about it).  I'm trying to come up with a mechanism that will remind me that the stresses and frustration are a symptom - the best so far is to suggest shouting "have you taken your meds".

The next step is to resume my normal (pre-pandemic) January routine, I'm just about to head to the Scottish mountains for some walking and photography, and then onto Shetland to get a coastal fix.