To do or not to do, that is the question

JON: It’s been an odd sort of a week. The good news is that the local authority has decided to pay for my grab pole – and not just for loan, as my occupational therapist had told me was most likely, but to have and to hold onto forever. Even better, it is proving very useful for getting into and out of bed. I suspect that I’m rather slower than the average Olympic athlete but I think I would now stand a decent chance of getting out of bed in case of a fire. Is there an Olympic getting-out-of-bed event?

Less good, I’ve been accused of becoming dull – ME! Who’d have thought it? OK, snoring on the couch whilst holding a book may not count as multi-tasking, but it is a pleasant way of passing the time. In my defense, it was a rather dull book, and I had at least got out of bed.

To try to become less boring, I have decided to take up my interest in photography again. I’ve been trying for some time to get pictures of fluids mixing, such as the swirling patterns created when you add milk to coffee. I’ve had a go using ambient light and with flashgun(s), but so far the perfect shot eludes me. So a quick trip to the local DIY store to buy halogen lights and a good rummage in my room to find suitable cables should soon see me sorted out soon. I think I might even be getting a little bit excited about the project. Watch this space.

MARIE: As the intelligent reader might have surmised, it was indeed I who accused Jon of becoming boring. All his pastimes are passive – reading, listening to the radio, watching TV. While they may be good books and intelligent programmes, I don’t think that’s enough to feed a mind. Particularly since much of it seems to go in one ear and out another so Jon often can’t actually remember enough detail to have a worthwhile conversation afterwards.

Jon’s lack of energy and lack of initiative has been a recurring subject in this blog. Our psychologist says these issues are common in Parkinson’s and has tried to give Jon / us various tools and ideas to overcome the inertia, but to little effect. He now believes medication may be the way forward, so in two weeks’ time we are seeing a psychiatrist colleague of the psychologist (who cannot himself prescribe drugs).

I hope this will help. I suspect the issues are partly direct effects of Parkinson’s and partly to do with the extremely fraught way in which Jon exited the world of paid work. This left him with a dented self-image and self-confidence that makes withdrawal into the soft armchair of geriatric decline seem like a comfortable solution. But he has the capacity for so much more, and it would be entirely wonderful if the two psychos between them can bring that out again.

May I live in un-interesting times

JON: It’s getting harder and harder to write these blogs. I guess I’m just not all that interesting, particularly since I seem to have drifted into a fairly monotonous routine. So Tuesdays I go to physiotherapy, every other Friday there’s psychotherapy, on Mondays and Wednesdays I cook, etc., etc. You might think that what I need is for something interesting to happen, but I’ve done interesting – the full set of interesting, with hospitals, doctors, lots of people with an -ist after their names and opinions about how to treat Parkinson’s. Now, I think I just want to be left alone.

Marie worries that I have not so much slipped into a routine but more like got stuck in a rut. Is there is a subtle difference between the two? She thinks I am becoming less interested in the world, and therefore less interesting to be with. Based on my current ramblings, she could have a point.

My shrink has me pegged as being lethargic, and I’m beginning to think he is probably right. For example, our copy of Terry Pratchett’s latest book arrived here recently. Normally this would have been a cause of much rejoicing followed by several hours of chuckling and laughter as I zoomed the book from cover to cover. What actually happened is that I sat on the book for 2 weeks, made a start and got stuck after about 100 pages, and then passed it on to M. She is now reading it at her normal, rather sub-Jon speed and tells me it is very good. So am I lazy or lethargic? It looks like lethargy when I can’t muster the energy to do things that I am almost certain to enjoy.

This may make me sound like a miserable old sod, but I’m really not. I don’t seek out excitement because I don’t particularly like excitement. Just stick me in a corner facing the wall and I’m a happy bunny, lost in my own thoughts, or perhaps in no thoughts at all (or, even more likely, nodding off, but that’s beside the point).

Marie has reduced her formal working hours to just 1 intense day a week. This scares me as it could leave her with far too much time to focus on me. She claims I shouldn’t worry as she has many mysterious projects she wants to engage in. So far it’s been OK, apart from the forced route marches she has me take on a daily basis, rain or shine. But she means well. I complain unjustly, and it may indeed be that the forced exercise is doing me some good. She has also started on a manuscript with the working title The Book of Jon, which is to be a biography going from diagnosis to some stable end state (such as death? cure?), so don’t hold your breath. We are supposed to be in this together, i.e. we talk about what should be in each chapter, she then drafts the text, I go through making detailed comments, and after several rounds of this we may come up with a readable text. In fact, chapter one seems to be working well so far. However, I do worry that subsequent chapters could be far less interesting – at least I am hoping they will turn out boring. Because in my book, boring = stable, while interesting = Things Happening (and those are often unpleasant things), and I refuse to develop new symptoms just to carry the narrative along and make the book more ‘interesting’.

Starting work on this first chapter of BOJ, which deals with the time before I was diagnosed, has brought back many memories which all pre-date this blog. But it’s been interesting (there’s that word again) to think back and compare how and who I was then with how I am now. One rather startling difference is my walking. Back then, Marie had to force me into taking even the shortest walk in our local woods. I remember whinging and whining, and having to be held upright as I stumbled along the path. Any observer would have thought I was drunk. In fact, our next door neighbour who is a care assistant saw me passing and made the correct diagnosis on the basis of my gait, as did an old friend who is a GP and my sister-in-law who is a trauma nurse – which rather begs the question why did it take three hospital neurologists and three assorted professors of medicine before someone got the official diagnosis right. But I digress. On those earlier walks I barely made it to the end of our street and it took me about an hour to complete a small circuit, whereas now I do the same walk in 20 minutes (and less if it starts to rain). So I guess that even though Parkinson’s is a progressive disease, it is possible harness drugs and life style to win the occasional battle and improve in one or two aspects. That’s something, at least.