Sticks and stones

JON: As you know, we are back from our trip to the USA where a good time was had by all. When we arrived, we allowed ourselves to be upgraded from a compact car to an SUV, and I’m so glad we did. Some of the roads we traveled down really were only passable in a 4x4 SUV, and at one point we came upon a couple who had got stuck in rather a deep puddle of mud in the middle of nowhere. Had we had a rope or even a piece of string we would have had a go at helping, but since we didn’t, all we could do was check that they had phoned for help – and we then had the evil pleasure of effortlessly driving through the morass.

You are probably aware that the USA is a big place, but you don’t get the full impact of it until you try to cross it by car. We did 3,500 miles in 3 ½ weeks, going from the air conditioned madness of Las Vegas through the baking heat of the Arizona desert and the Grand Canyon to the snow-capped peaks of Yellowstone. I know this may sound like some kind of tourist advert, but it was just amazing. The high spot of the trip was Yellowstone, where we saw elk, bison and black bears, lost each other in the steam of hot springs and marveled at the geysers.

On the PD perspective I did rather well. In the mornings my walking tends to be a bit unsteady, and ditto around the time when my next dose is due, so to a passer-by on the street I probably look as is I’m ever so slightly drunk. Which I don’t mind if it just so happens that I am indeed ever so slightly drunk, but it’s kind of embarrassing on a sober Tuesday at 11 o’clock in the morning. However, I have now solved that problem by buying a walking stick. The difference it made was amazing: people held doors open for me, made space for me on the street, were helpful in shops, etc. I’ve brought the stick back home with me and I’m trying to remember to use it whenever I go out.

In other news, our offer for the house in Denmark has been made and accepted! We won’t exchange keys until November, so there is a strange anti-climax of not much happening at the moment. But I’m looking forward to the move and to getting the place done up just the way I want it. And it’s good to know that we are moving from the time bomb of living across three floors to a much more practical bungalow with wide doors and corridors and no door steps to hamper a shuffling Parkinsonian.

The good life

MARIE: We are just back from our long holiday, and what a brilliant time we have had! When Jon was diagnosed three years ago, it was a kind of wake-up call to seize the day and enjoy the good stuff right now, while we both still can. One decision was to take those holidays that we (okay, perhaps particularly I) had been dreaming about, and bugger the costs. If Jon is still up to big holidays in 5 or 10 years’ time, that will be a great bonus, but we’re making sure not to miss out by taking our pleasures up front.

So, soon after diagnosis in 2007 we booked a safari in Tanzania involving some primitive camping which would be beyond Jon today. The next year we took a tour through Cambodia and Vietnam where we rarely stayed more than one night in any one place, also something that would now be a challenge for him. And this year we have again stretched Jon on a holiday through the natural wonders of the western US that may not be possible in a year or two because of the sheer amount of time difference and jetlag. That completes a hat trick of dream holidays, so even if health and finances keep us firmly within Europe for the rest of our lives, that’s okay – we have seen the world, and Jon has thousands of photos to prove it.

Apart from the grand splendour of canyons and mountains, and the thrill of seeing wild bison and bears, we realized some way through the holiday that we were also thoroughly enjoying taking a break from Parkinson’s. Normally not a day goes by without at least one of us going online to one or more PD chat forums, rarely a week goes by without some PD related appointment or other, our home is filling up with grab poles and back massagers and pill dispensers, and our minds and conversations are often preoccupied with Parkinson’s too. Of course PD came with us on holiday in the form of a sponge bag packed full of drugs, a propensity for late mornings, and a need for me to stand in as occasional grab pole and putter on of socks. But these seemed minor issues, and on the whole this was a well-earned break from all things disease-related.

Normal life is now gradually resuming. The suitcases are empty and the fridge full again, we have waded through tons of post and email, have (at last) put in an offer for the bungalow that we hope to move to before the end of the year, and are ready to engage again with the vexed and vexing issue of Jon’s medication schedule. Now, even the blog post is now done. The sun is shining, the tea is brewing, and all is well with our world.

Cause for celebration

JON: As you can see, there has been great excitement in our village this week as “we” have celebrated first the Queen’s birthday and then the 65th anniversary of liberation which is a big deal around here – in fact, A bridge too far (the film) happened more or less down the road from us. Much bunting and several parades, the highlight of the village year!

Anyway, despite a visit earlier today to our psychologist, aimed at starting to unravel the great taboo subject of whether I should be ‘allowed’ to take my medication as I want, Marie and I have managed to remain on excellent terms (nudge, nudge). Which is particularly fortunate, as we are soon to embark on a three-week tour of the USA starting in Las Vegas and ending in the Yellowstone National Park. I predict it’s going to be great! We may come across the occasional Internet café and keep you up to date, but most likely you’ll just have to wait until we are back for details.

Although I have to confess that in a fit of retail therapy I bought a new mobile phone. It may or may not work in the US (previous phones have not). It has all the bells and whistles an old techie could wish for: MP3 player, camera, internet access, all sorts of connectivities – and because it’s an Android phone it will even let me play with programming my own applets. So far, set-up has required one visit back to the shop and two total resets of the device. I actually think this is great as the thing is sure to keep me occupied for weeks and weeks. One of the best toys I’ve had in a long time.

Anyway, we shall leave cyberspace to its own devices while we’re away, and leave the house in the capable forelimbs of the cat and his cat-sitter – the girl from next door, who has a large family and therefore enjoys the quiet (and undisputed control of the TV remote) that she finds in our house when we’re away. Marie has shown me the evidence that a mole has also recently moved in, so the place will be full of life in our absence.

We leave you with the news that as our ‘fame’ spreads, we now have over 200 readers in countries ranging from Norway to Nigeria. We seem to be going global. Parkinson’s rules!

Put out to grass

JON: Although nothing has yet actually happened and no decisions have been made, we feel that we are making some progress on our house move. It’s a bit like the TV programme Escape to the Country: where we live now could be described as a large(ish) house in a faintly rural setting. The new house is bigger and is best described as being in the middle of nowhere at all. So rather than downsizing as most people do at this stage of their lives, we are out-sizing: bigger house, bigger distances, and (for me, at least) bigger trousers.

All this is very exciting right now, but at some point when the move is done and the excitement dies down, I’m going to have to find something to do with my time. I’m considering taking up fishing. It’s a “sport” where you can sit down and gaze into space whilst giving the impression that you are actually doing something. I have a pile of three books on fishing due to arrive from Amazon so I’ll soon be an expert fisherman (fisher person?).

I’m also told that the lawn in the new house will be my responsibility. The good part is that I’ll be using a ride-on mower which I’m sure will be fun for the first few mows. The bad part is that I have the attention span of a concussed gnat, and there is a lot of grass which will need weekly attention.

One excellent feature of the house is a large window looking out over a few fields to the sea beyond, bordered by small islands and full of little pleasure boats. I have decided to treat myself to a telescope as a housewarming present, and have already discovered that a decent one is not as expensive as I thought. Which is just as well since it appears ever more likely that we will buy the new house before we have sold the old one, so money might be tight for a bit. Just as well I am a man of simple tastes…

Still (kind of) working

JON: Marie wrote last week that we have had a minor domestic argument. We have more or less kissed and made-up, or more accurately we have agreed to disagree for now. So at the moment all is well, and long may that last.

Other good news is that I have been invited to chair a session at a conference on oral processing (yes, that is just as disgusting as it sounds). I will get to see lots of old friendly faces and talk about teeth, chewing, and swallowing into the small hours. This will be the first time I’ve been session chair, but I’m not worried, it mainly involves sitting through a couple of lectures without falling asleep, making sure the speakers keep to time, and handling the Q&A afterwards. I’ll also have to keep a few questions up my sleeve to fill in any embarrassing silences. Naturally, I plan to have a pocket full of assorted pills to cope with unexpected shakes, twitches or other problems.

I’ve also been in touch with some of my old colleagues, or rather I was called in to fix a piece of equipment (that I’d built) which had stopped working. I spent several hours trying to diagnose the problem and finally managed to make a diagnosis: it’s broken. Which was possibly not a lot help, but I was flattered to have been asked for my opinion, and did not feel too bad about the outcome as no-one else could fix it either.