All systems are go

MARIE: At last, we have an appointment for Jon to get the duodopa pump – soon, very soon. It’ll all be done and dusted before Christmas and will be the weirdest and potentially most wonderful gift he ever got. We are nervous and excited and hopeful but not daring to be too hopeful. That’s normal, I guess.

What’ll happen is we’ll get admitted (yes, I say “we”, and if you read the post from 28th October, you'll know why) and Jon will get a plastic tube stuck up his nose and all the way down the digestive tract to his duodenum. This will be connected to the duodopa pump, so from day 1 he will be on the new medication. They leave the tube in place for a few days while fiddling with the drug dosage and checking that this method of delivery really does agree with Jon.

Then, all being well, he’ll have the operation to get the permanent tube inserted through his stomach. We were relieved to discover that this is done under local anesthetic, which is obviously a lot quicker to get over. After that, we’ll stay in hospital for up to a week while they continue to fiddle with the dose, check that everything has been installed correctly, and make very sure that we know how to look after the thing when we get home.

Jon is naturally concerned about the unpleasantness and discomfort associated with the various procedures, but feels absolutely certain that this is the right treatment to accept. I am more worried about the potential emotional and cognitive fall-out, but equally convinced that this is the right thing to do.

So, what to expect? Well, some people apparently dance out of the hospital, while for others it takes a few weeks at home before they settle down with the new routine. This is apparently partly to do with the enforced idleness of hospital life which uses up rather less dopamine than the real world. I have this idea that we should keep as active as possible while in hospital, both because of the dosage issue and because otherwise we might go slightly mad. There are lovely grounds round the hospital, but the food is dire, so I envisage many little walks, food-related excursions and perhaps, if they’ll let us out in the evenings, dinners with close family who can be relied upon not to be fazed by a man with a plastic tube up his nose.

Wish us well.

Goodbye Piccadilly, Farewell Leicester Square

MARIE: We went to London last weekend. Jon’s been itching to go to see an exhibition about the computing pioneer (and WWII code breaker) Alan Türing. After the war Türing worked at the same university department as Jon’s dad – Türing was very much the theoretician, while Jon’s dad put theory into practice by writing the very first chess software. Consequently, Jon’s dad got a display case all to himself at the exhibition, which was well worth seeing. (Jon also believes to have briefly sat on Türing’s knee as a toddler, a gratifyingly eccentric claim to reflected fame.)

Anyway, encouraged by the success of our Amsterdam trip (see blog posts past), we set off for London. The old question of whether it is better to travel than to arrive has been decisively answered by the budget airlines. After a long day involving 5 modes of transport with much walking and lugging of luggage in between, we finally arrived Friday night at a hotel near where we used to live in East London.

Saturday morning we slept in, then ambled down the high street breathing the familiar big city fumes. Jon found it more difficult than ever before to deal with the pedestrian dance of sto

p – go – lurch sharply to avoid umbrella – go – run for green light – stop for pram. He was festinating away quite alarmingly, tripping himself up, feeling his feet stuck to the ground at the wrong time. If you don’t know what festination looks like, it’s as if the upper body moves forward as intended while the feet stay behind, and then when a fall is imminent, the feet suddenly come ‘unstuck’ from the ground and rush in many tiny steps to catch up with the body. A bit of a concern around the house, and bloody terrifying in the middle of London traffic.

Happily, though, Jon survived long enough to be reunited with his daughter, son-in-law and two lovely grandchildren. We had a long leisurely lunch, then Jon had a little nap while the rest of us played outside, then another meal together, and finally a drink in the hotel bar. A long day, but an intensely enjoyable one.

Sunday was the family excursion to see the exhibition. The Science Museum is right next door to the Natural History Museum, home to dinosaur fossils and stuffed whales, and so of enormous interest to the grandchildren. In we went – Jon’s walking stick and the look on his face got us whisked past the long queue – to a museum where the collection is as spectacular as the building is noisy. Hard surfaces and high ceilings plus thousands of over-excited children was a bit much for Jon, so he and I retired to the café with grandson, where we spent a pleasant half-hour drawing imaginary butterflies and setting them loose to flutter around people’s heads. Then on to the Türing exhibition, which was small and perfectly formed. Granddaughter and I made it a particular point to talk loudly throughout about how famous her great-granddad was.

Then, and this is where we perhaps pushed the boat out a bit far, we were joined by the in-laws who had traveled for hours to enjoy a late lunch with us before getting straight back on the train. Each individual element of the day was perfectly fine, but two exhibitions and a sociable meal out on the same day is just one event too many for Jon. At the end of the meal, we said our goodbyes in the restaurant because I could see that he was just too exhausted to come along and wave everyone off at the station.

And that was basically that. We had another two days in London, but although we spent some more time walking around the old neighbourhood, we never ventured into the centre again, and spent most of our time either in the hotel room or in the blissfully music-free pub across the street. There was just no energy whatsoever left in Jon. It was the combination of the stresses of air travel (by contrast, we drove to Amsterdam), too many activities in too short a time, and (especially, in my view) the relentless sensory onslaught of such a large and busy place.

I have a theory that if you never try something and fail at it, it’s because you’re being too timid. You have to stretch yourself, test your limits, and sometimes you end up over-stretching. We used to love London when we lived there 15 or so years ago, but now we have to accept that London is simply beyond us. Parkinson’s is turning us into small-town folk and nature lovers.