Up and Down (September 2022)

It's been a while since I last checked in here. As I've been wandering the cliffs and headlands on Shetland I've composed (in my head at least) several posts over the summer months - mostly quite angry.  I think the angry posts have been the counter point to the mostly cheerful 'puffins on the cliffs' pictures I post elsewhere.

With hindsight, my first reaction to getting The Diagnosis was to run away and pretend it didn't exist - Shetland has been a temporary escape route for the last 13 years and I was assuming that could just continue. But it can't. You can escape from work place stress but a long term (incurable) diagnosis just follows you around.

Having toyed with the "ignore it and it'll go away" approach the next option was to curl up in a ball and sit in a corner waiting for the symptoms to get worse. Not an attractive option - which also highlights the challenge of deciding when to start taking the symptom masking medications.  It's all well and good being given the go-ahead to start taking the meds when needed, but how do you make that decision - and it's a one way decision, once you start you need to keep going.  As with the 'Ignore It' option, the 'Curl Up' option really doesn't feel like the right thing to do.

So what's option 3?  In these sort of stories, it's always the third option, the third person or the third way.

We'll call this the 'Guinea Pig'. 

There is (currently) no cure for Parkinson's Disease (adding 'currently' helps in writing about it) - but there is a lot of research going on into finding and improving ways of either helping with the symptoms (these are the main medications around) or with slowing down the progression of the disease.  I've put my hand up to volunteer for two difference research projects - one looking at a drug treatment intended to slow the disease progression, and a second one looking at ways of measuring the extent of the symptoms. I'm a good candidate for the first study (mainly because I've never taken any Parkinson's meds, and I don't have plans to) and I'm really interested in the second because it trying to use technology to allow remote monitoring of symptoms (ticks the 'distance study' box from my OU days, and my predilection for spending time on remote Scottish islands).

At the moment I'm very enthusiastic about both trials - the drugs based trial is going to involve quite a lot of travel over a two year period, but the plus side is getting access to a lot more regular monitoring than one gets as a 'typical' Parkinson's patient (and there's alway the hope that one might get access to the Parkinson's miracle drug).  And telemedicine trial involves both regular monitoring and a real attempt to quantify the extent of Parkinson's (particularly in its early stages).

Both trials help give a sense of hope (which feels important at this point), they also are a way of telling a positive story about a pretty nasty disease when one is breaking the news to family and friends.  

"I've got this nasty disease and this is what we're doing about it" is easier to tell than "I've got this nasty incurable progressive disease"....