Words, words, words

JON: I’m not 100% how it came about, but last week I found myself giving an interview about my exciting life as a food scientist to a journalist from the Daily Telegraph’s ex-pat edition (not a “real” paper, but an electronic version). It’s can be read here, if anyone’s interested. It’s not meant to be taken too seriously, but Marie and I have grabbed the opportunity to pitch another article to the same journalist on the delights of being long-term sick in a foreign land, as viewed through the prism of Parkinson’s. When (or if?) this second article comes to press/to pass, I’ll let you know.

Giving the interview took about 40 minutes, so what, I hear you ask, have I been up to the rest of the time? I’ve been buying big boys’ toys, and great fun I have been having too. Pride of place goes to my android smart phone which I have mentioned before – this gadget is so complex it took me 3 days just to work out how to switch the damn thing on… I’m now in the process of learning how to program it, and mostly failing. Actually I think I’m doing rather well, although I should give most of the credit to the extra dose of Ritalin I’ve been taking since our latest consultation with the psychiatrist – it really helps my concentration. My objective with the phone is to develop an application to monitor my tremor, twitching and general activity levels over extended periods of time. I’ll keep you up-to-date with my progress (or more likely lack of it), so watch this space, but don’t hold your breath.

In fact, the Ritalin has given us an idea for another article, one we will write ourselves and try to get into the magazines of both the British and the Danish PD associations. Because it appears that I am a bit of a trailblazer here (which sounds much better than a hapless guinea pig, don’t you agree?) since the use of Ritalin to treat motivation/apathy problems in Parkinson’s is very new and not much reported on. Both my psychiatrist and my psychologist have assured me that my personal experiences will be of interest to the professionals, and I hope an article could also put ideas into the heads of impassive people with Parkinson’s and their desperate partners. Ritalin has certainly done wonders for me – I seriously doubt that I’d be doing any of things I’ve written about here (including writing the blog at all) without my little magic pills.

Invisible friends

However much we have liked living in Holland, and however happy we have been with the health service here, there’s no denying that it is a major difficulty to deal with PD in a country where neither of us speaks the language comfortably. I, in particular, have missed having someone nearby who would not only be sympathetic and supportive in a generalized way, but who would really know and understand what it is we that have to live and deal with.

We know a very small number of people who have and are willing to talk about their (or their spouse’s) incurable degenerative diseases, and this has been immensely valuable and helpful for me. But the range of experiences is too small and none of them relate directly to Parkinson’s.

What I really want is to join a support group specifically for people caring for someone with Parkinson’s. Many of the national patient associations run that kind of group, but around here they are, not surprisingly, run in Dutch. Although my reading comprehension of Dutch is pretty decent, understanding spoken Dutch is much harder, and answering back is quite beyond me outside the kind of predictable exchange one has with a cashier or a bus driver. So I sadly had to conclude that support groups were beyond my reach for now.

How stupid of me! Do remind me: by what medium am I reaching you now? And might that same medium have something to offer me in the way of support? Oh yes, I have discovered the joys of the internet forum, and I’m hooked! There are several, with slightly different angles and ways of operating. Usually I go to the forum run by Parkinson’s UK, mainly because there is a separate section for carers and because the opinions and experiences of carers are generally welcomed everywhere on this forum.

It’s the most brilliant thing. There are people new to the disease asking anxious questions and people who have had PD for years sharing their experience and understanding of how it can affect you and how you can deal with it. There is moral support, and concrete suggestions, and much considered thoughts. And there are lots of personal stories, some to break your heart and others to mend it again. There’s also fun and games, and misunderstandings and occasionally wrong ends of sticks firmly grasped, but that’s human interaction for you. For a non-Dutch speaker in Holland, it is – if not a life-saver – definitely a mind-saver.

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.