Settling in

JON: We are now at the stage in our move where a daily rhythm seems to be emerging in our lives: we have soup for dinner with great regularity, sirloin steak at painfully long intervals, and pudding on Fridays, Saturdays and Sundays. And on Tuesdays we are spontaneous …

For a treat we went to the cinema to see Love and other drugs. It’s a romantic comedy with the USP (unique selling point) that the girl has Parkinson’s, and the guy falls in love with her and promises to stay and look after her for ever. Of course all we get to see from her is a few hand tremors and one OFF tantrum, but there’s also a room full of real Parkies meeting to share their experiences and shake and twitch for the camera. One of the spouses pulls no punches when he describes the advanced stages of PD to our hero. The spouse comes back later to apologize and say it’s not really as bad as he painted it – but you know and I know that it is bad, the OFF days are miserable, and even the ON days are not that great for me any more.

But none of this should come as a surprise. I am currently enjoying the literary dystopia that is Thomas Hobbes’ 1651 book The Life of Man which contains the famous passage that this life is ‘Solitary, Poore, Nasty, Brutish and Short’. The spelling might be slightly odd, but the sentiment is spot on. Admittedly, some things have improved since 1651. We now have indoor plumbing, antibiotics and content-free telly 24/7. A whole cornucopia of diseases can be treated and there are even some drugs and surgical treatments that impact on Parkinson’s. However, as you know I also had a dose of sciatica: no treatment available, just do the exercises (which don’t cure you but at least gives you something to do while you wait for things to heal).

And although L-dopa can have an almost magical effect on PD, my dose has to be increased more often than I like as the disease progresses and the drug’s efficiency decreases. At the moment, I’m still at the good days / bad days stage of my PD. Believe it or not, it has taken me five days to get the get-up-and-go to write this post, because when I’m OFF my get-up-and-go goes. At least today is a good day.

Another highlight of the week was the rental of a skip to remove assorted rubbish and all the boxes we used in the move. Normally the removers take their boxes back, but not in our case because the boxes are in the wrong country (i.e. Dutch boxes in Denmark). And since we had 3.5 tons of stuff to move, you can imagine the number of boxes. Being an idiot, I had to go and make a start on moving the rubbish into the skip which did my back no favours. Our next door neighbour once more acted as an angel of mercy, and to my amazement she and Marie filled the skip in no time. Not only that, it was done tidily with painted wood on one side and chip board on the other (this obsessive neatness may drive me to drink – I already take a lot of drugs).

There were some large sheets of wood which I was tempted to keep, partly as an excuse to get a circular saw to turn rubbish into firewood. But would my body hold up? How many fingers would I have left at the end of the first day? And would Marie use it to perform a secondary circumcision on me if I don’t behave? Discretion is the better part of valour, so I decided to let the wood go.

Meanwhile, my physio appointments continue. I spent a session trying out all the instruments of torture that they call exercise machines. I coped (rather well I thought) with most of them, though they did have one torso-twisting device that instantly recreated the pains I have when things are at their worst. There is more of this to come when I am soon to join a weekly exercise class for Parkies. It will be good to meet fellow sufferers and compare myself to them, but the exercises …