High spots

JON: To a dentist like I was, a high spot is the annoying bit of extra filling material that prevents your teeth from coming together, a bad thing. But to normal people it means something rather good, and as it happens a number of good things have happened for me recently so the last few weeks have seen a series of ‘highs’.

As you know, I’d been invited to chair a session at the Food and Oral Processing conference (FOP). This may sound a bizarre topic, but all sorts of fascinating people crept out of the woodwork – academics studying the mechanics of chewing and swallowing, people from industry who wanted to know how to make food cheaper, more nutritious, healthier, etc., and clinicians who treat dysphagia which is an inability to swallow caused by stroke and other neurological deficits – such as Parkinson’s, for instance. For me, the high spots were several superb sessions from a clinical specialist in dysphagia from whom I learned more in a 30 minute chat than I had in the previous 12 years of studying oral processes. So far I have no swallowing problems, but give it a bit longer and these issues may well become a bit more personal.

On the PD front, I found that sitting still for sessions of 3 hours at a time can be hell. So I missed a few of the papers, and had to leave the room during a presentation once or twice. I spent a lot of time walking up and down corridors trying get my muscles to work in unison. But I had my walking stick as public proof of my state, so no one complained and I didn’t feel at all embarrassed. Still, I had to increase my drug dosages and even then I spent far too much of my time OFF when I really ought to have been ON, but with an audience of neuro-this and neuro-that, people were very kind and understanding. Most of them worked out my diagnosis on their own and everyone had a pretty good idea of what Parkinson’s is and so understood the concepts of being ON and OFF.

I also noticed that when people asked me politely ‘how are you’, I tended to give them my full life-history which was perhaps slight overkill. I suspect this self-absorption comes from having such a time-consuming and life-changing disease, although it could also be that I have simply turned into a boring old geezer. I prefer to blame the PD.

At the end of the second day was the conference dinner which was another high spot. I sat between a world famous neuro-physiologist and one of my personal heroes, both giving me advice on PD. I was ON for most of the dinner but I was still in bed by 10:30. In the old days we would have talked till 3 o’clock in the morning and had too much to drink. I can’t do that any more, but I still had a fantastic time.

After the conference, I stayed on and visited family and friends for a few days which was great but pretty exhausting, before dragging my weary body and surprisingly heavy suitcase to the airport. By then I felt 100% shattered, I’d run out of pain killers, and was definitely OFF, but again I had my walking stick and people were kind. Normally I’d have made my own way home, but I felt so bad that I rang Marie and asked her to collect me at the airport. Had she not, I might still be stuck somewhere in the underbelly of Schiphol Airport, a quivering jelly with the IQ of a concussed bee. Nothing that a few days of home comforts couldn’t cure, though, so I’m back to my particular brand of normal and just feeling really quite pleased with myself for having been well enough to enjoy the trip so thoroughly. Oh, and look what I found at the supermarket!

Am I 70 too?

MARIE: Reading back over last week’s post, I realize that it sounds as if we’re living like 70-year-olds in contended retirement – pottering around the garden, going for little walks and taking too much interest in what’s for dinner. And to an extent that’s true. Jon has been forcibly retired for a reason, so lives a life similar to those retired because of age – even if on a good day you might not always be able to see that there’s anything much wrong with Jon and might be forgiven for thinking that we’re perhaps blowing this PD business out of proportion (the pull-yourself-together school of health care).

I’ve just read a book, Keeping Balance, by the psychologist Katherine Cuthbert who suffers from MS. She makes a very pertinent point:

Unlike someone with a moderate or severe short term illness, or other medical problem, the individual with a chronic illness would not generally take to their bed. Most likely they will not attract quite the kind of care, attention and sympathy normally devoted to someone who is temporarily ill. In sociological terms the chronically ill do not continuously occupy the status of sick people. For much of the time many chronically sick people will continue to participate … in everyday life. We are both “ill” and “not ill” at the same time. This can create difficulties in terms of how far one pushed the role of being ill, or alternatively how strongly one resists it. … An important psychological challenge for many of us who develop a chronic illness is the degree of disruption in how we view ourselves – our sense of identity.

And, I might add, the spouse is in quite a similar situation. I have to negotiate with myself, with Jon, and with the outside world in the form of work and friends to what degree I am still the old me and to what extent I am characterized by this new role as carer. When we are apart, as this week when Jon is in England, I can be entirely the old me, but find myself somewhat uneasily inhabiting a life that is full of space for my new carer-persona. In other words, this disruption in my sense of identity that Katherine talks about becomes very obvious when suddenly one side in the tug of war lets go of the rope. Which naturally brings up the question of whether I’ve got the balance right.

There’s no easy answer to that. At the end of last year and the beginning of this, the carer-pull was strong as Jon was not doing well and was being assessed for disability pension in various stressful and anxiety-inducing ways. But this summer with Jon settled into a good medication scheme and both of us much more emotionally stable, the carer-pull is lighter. The trouble is that while PD will turn up or down Jon’s need for my help, it’s not easy to match this with an equally variable work life. What employer and customer could live such an unreliable resource as I am becoming?

So instead I have chosen to permanently reduce my commitment to work down to a level that I know I can maintain through Jon’s ups and downs. When he is up, that leaves me with time and freedom to pursue my own projects – mainly writing and some volunteer work (which is much more forgiving than the paid variety). As I said last week, this is not entirely painless. I miss the clear measures of success that are the paycheck and the promotion prospects, I miss the structure imposed on daily life by normal working hours, and I confess to being jealous of friends who are holding down demanding and rewarding jobs. But I do derive a lot of satisfaction from my various projects, and they bring me into contact with some great people that I would never otherwise have met. And as Katherine says in a section about working at happiness, it is no small bonus to be able to go outside and enjoy the sunshine whenever I want to.

The strange nature of time

MARIE: I suspect I’ve been getting a lesson in relativity or some such deep subject this weekend. It could be the heat, but I think something has happened to expand time itself.

Jon is now in England where he is attending a conference. This happens to be in the city where his grandchildren live and near other family and friends, so he decided to go over there early and also stay on a few days after the conference. This should be enjoyable, and is also useful because he now needs time to acclimatize even after such a short journey. We always used to take trips like this on our own before Jon got ill, and it is rather marvelous that, after a period of relying on me rather a lot, he now feels up to doing it on his own again.

To be honest, I have been kind of looking forward to having the place to myself for a bit – you know, the easy life where a vegetarian dinner doesn’t cause a riot, there are no car shows on TV and the toilet seat is always down. The usual pattern was always to enjoy this greatly for several days and then to start feeling a little bit lonely a day or two before the joyous return. But this time, just 48 hours into Jon’s absence, I feel time dragging. The house is clean from top to bottom, the laundry basket is empty and the fridge is full, I’ve picked a year’s supply of black currants in the garden, read a self-help book about a family with cancer and am now well into a fact-based novel about Alzheimer’s (such fun topics both), so it’s not as if I’ve been bored with nothing to do.

But it seems Parkinson’s disease has permanently changed the pace and focus of life more than I had realized, a change so gradual and incremental that it has been invisible from day to day and only becomes obvious now when Jon has removed PD from my life for a week. We have made a conscious (but not altogether painless) decision to focus on the here and the now. It is a “smaller” life than we would have had without PD – smaller circles and smaller ambitions, but a better life together, with time and energy to enjoy each other every day. Not madly chasing deadlines and promotions at work, not exhausted at the end of a busy week with too many appointments, not short-tempered with stress at all the chores still remaining to be done.

This is a good and right choice for us. But it means that when I now suddenly find myself on my own, all the time that we have made specifically for each other hangs a bit heavy on me. I don’t wake Jon up with a handful of pills and climb into bed for a cuddle (we sleep separately because of his REM sleep disorder). We don’t have breakfast together to the dulcet tones of the BBC news and the London congestion report. I don’t help Jon dry off after his shower and make fun of his choice of T-shirt. We don’t go for a walk in the woods and enjoy the view from one of our favourite benches. I don’t cook him dinner or listen to the radio with him, he doesn’t point me in the way of an interesting article and I don’t make him come and look at my nuts in the garden.

I had got it into my head that, as a general rule, Jon is missor and I am the missee, but I now see that this is quite wrong. At least tomorrow is Monday and I can take the opportunity to get more work done this week than I would normally get through in a month.

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.