Pumping

MARIE: Today is the one month anniversary of Jon getting the duodopa pump. Long enough to review the effect on Jon’s PD and on our daily lives.

On symptom control, Jon still got some dyskinesias, but nowhere near as bad as before, and certainly not to the point where it bothers him. Enough to still draw a bit of attention, probably, but we’re kind of used to that now. However, the most important point is that when I asked him if he thought the pump was worth the effort, Jon said unequivocally yes, he would crawl over broken glass for the relief it gives him from OFFs.

He used to struggle horribly in the morning, when he’d often have to wait more than an hour for the pills to start working enough that he could get out of bed. Now, he’s frequently up less than half an hour after I’ve started the pump. And with the occasional extra dose (he can take up to 6 a day), the day passes with the occasional little dip, but not a single real OFF. I don’t think any of us without Parkinson’s can quite imagine how horrible an OFF is, but I can see how much it means to Jon to be rid of them.

On the practical side, it’s wonderful to leave the tyranny of pills behind us. Admittedly, there’s a bit more to the maintenance than I expected. I knew we’d have to manage the pump, but (like an idiot) hadn’t counted on the cleaning and anointing of the entry point. It’s kind of gross, but we’re learning to deal with it.

Teaching Jon to manage the pump himself is a bit more uphill. I don’t think he’ll ever be able to set it up and connect it in the mornings because that’s when he’s at his lowest point functionally. Right now, we’re working on him getting comfortable enough with the procedure that he can disconnect it and reconnect it when he has his shower, and perhaps also look after the entry point himself. We haven’t decided yet about responsibility for the evening procedure when his tubes need flushing, so for the time being I’m handling that. We’ll take it one step at a time and see how far we get.

The last issue is ‘wearability’, and I have to admit I’m a bit disappointed with the options. The trouble is that the unit is quite large and heavy, must be easily accessible, and is attached to Jon by about 40 centimetres of plastic tubing with a large connector in the middle. Together with the pump you get the gear to carry it around your neck like a camera or as a shoulder bag, or as a bum bag, or in a shoulder holster like a gun, or in the inside pocket of a vest (the over-garment), or in side pickets of a vest (the under-garment). However, all the gear is made from somewhat unattractive materials, except the black leather shoulder holster, which is sadly the most uncomfortable to wear. We’ll be seeing a lot of other pump users at the annual meeting in April, and I’ll be very interested to see how they’ve balanced discretion with accessibility and comfort.

ON and OFF

JON: Since my last post, I’ve been soldering on – no, not a typo: I’ve actually done some soldering which has come out OK, or more than OK if I say so myself. Of course these things are binary, it either works or it doesn’t, and this time it worked at the first attempt. So my fine motor skills seem to be OK as do my cognitive skills (to me, at least…).

I’ve also done some painting and photography. I’m rather pleased with the photographs, less so with the painting. But I’ve only done a short course on painting this winter and my work compared fairly favourably with that of the other students. Actually, my paintings weren’t great by any measure, but I have the excuse that while each lesson ran from 6:30 pm to 9:00 pm, my medication effect rarely lasted much beyond 8:00 pm. The photography, however, is a long-standing interest, so I feel more competent with that. Attached are a couple of my pictures – it may not be high art, but I like them.

Admittedly, though, the last week or so has been on the unpleasant side. I take my drugs at the correct time, but some times they don’t work. With increasing frequency they fail to take effect at all and I’m reduced to shuffling along like an old man (OK, maybe I am an old man). Thinking becomes hard, muscles become weak, I ache and find it hard to remember that I will feel better soon.

My brain let my body down twice last week. On Monday morning I was fine when I got on the bus to the Oak House day centre, but (expletive of you choice here) felt utterly shattered when we arrived. I took an extra dose of L-dopa, slept for over an hour, and eventually started to feel better.

On Friday afternoon, things were reversed. I had a good day at the Oak House and got on the bus to go home feeling fine, but after being bumped around for what seemed like several hours but was in fact less than 20 minutes, I almost had to crawl to get to the front door. Once inside, I just flopped, took some quick release L-dopa, went straight to bed and just lay there waiting for the pills to kick in – repeating my little mantra of ‘it will get better’ and as always it did get better. But the waiting is the worst.

It turns out that it’s not uncommon for the effect of the Parkinson’s drugs to become erratic. So now I’ve been offered to have a duodopa pump fitted that will deliver the L-dopa more smoothly. It seems to have some pros and cons. On the plus side it allows a fine control of the L-dopa, but on the minus side as far as I can tell a PEG tube would be inserted through my skin and directly into my stomach and left there. I’ll presumably get a switch, or possibly a knob, to control the dosage. Marie seems quite taken with the concept of gaining an extra appendage, though the maintenance is a slight worry.

We’re going to an information day with lots of people who have lived with the pump for years, so I’ll know much more before it’s decision time. Watch this space.

Whazzup?

JON & MARIE: It has been absurdly long, a full two months, since we lasted posted anything to the blog. So long that several kind and concerned readers have asked us if there’s something (extra) wrong. Nostra culpa. Fortunately, the only wrong thing has been wrong priorities which put the blog too low on our to-do list. First there was the long visit from children and grandchildren from England, then Marie was overwhelmed by deadlines at work while Jon was exhausted from his daily (!) five hours (!!) of Danish language lessons, and lastly we’ve been traveling a bit.

Obviously, all sorts of things have happened in the meantime, far too many to go over in one post. Here are the highlights, starting with a kind and offensive question.

Towards the end of their week-long visit, we took the grandchildren on a rainy-day excursion to the small national aquarium. By this time, Jon’s energy reserves had been whittled away by constant (welcome) company and daily activities way beyond his usual routine, so he was not at his best. Instead of traipsing round marveling at the sea horses and petting the star fish, he went and sat in a quiet, dark corner. And yes, he looked tired and drawn. But did a helpful 'aquarian' really have to come up and discretely ask if Jon needed to borrow a wheelchair? The question flustered both of us. Is it really so noticeable when Jon is off? Indeed, how great is the difference between how we think we seem and how we actually appear to others? Jon decided to turn down the offer, and an hour or two later was feeling much better – and we told the kids right away, as a sort of exorcism. Let’s hope it’s a good long time before anyone asks that particular question again.

A cautionary tale concerns a drugs muddle directly related to the enormous amount of time it has taken to get Jon accepted into the local health care system. We left Holland with a small suitcase full of drugs, enough to last Jon through the spring, in the certain expectation that he would see a Danish neurologist long before reaching the bottom of his stash. How wrong we were. It is only next week, a full seven months since his last appointment in Holland, that Jon finally gets to see a Danish neurologist. The stash is almost gone, and at the bottom of it were the last L-dopa tablets Jon was prescribed in Holland – significantly, from a repeat prescription made out by a faceless colleague of his regular GP. In Holland, as in many other countries, they aim to give patients the cheapest type of medication, so we didn’t really react when Jon was given a generic tablet instead of his usual brand-name pills. It turns out, though, that these were not quick-release tablets as they should have been. It took the best (worst) part of a week of deterioration and despair (quiet on Jon’s part, loud on Marie’s) before we realized what was wrong. We now know for an indisputable fact that it is hugely important that Jon’s tablets are quick-release, and we know always to double-check what the pharmacist gives us.

An uplifting tale, sort of, is the story of how we changed a wheel on the car. It is unnecessary to tell you exactly what manner of idiocy caused us to find ourselves with a flat in the first place. What matters is that the incident clearly illustrated the frustrations of living with PD: Jon wanted to do it and knew how, but was physically unable, while Marie definitely didn’t want to do it, didn’t know how, but could be talked through the process. We are generally extremely, debilitatingly incapable of performing any DIY task together, but for once – perhaps for the first and last time ever – we performed an exemplary piece of teamwork. Nice to know it’s possible, though we’ll try not to make a habit of it.

On the upside, Marie has just finished work on her latest paid project. There is a good chance that more work will come her way from the same customer later, but then as shorter projects and not so deadline driven. Finance-anxiety may set in at some point, but for now we both enjoy the extra time – to be spent together, and on volunteer work for the local Parkinson’s association, and on/in our increasingly wonderful garden.

Things to look forward to

JON: In my last posting I moaned about being OFF for far more of the day than I am prepared to put up with. Well, nothing's changed: my back hurts like buggery, various and varied bits of me feel as if they are in spasm, and if I ever find the incompetent git who designed this body – well, he’s not going to enjoy the meeting. Intelligent design? Ha, more like 5pm on a Friday … And it is raining again, not proper rain like we used to get when I were a lad, but this new fangled miserable drizzle that goes on for day after day after damp bloody day. Not that I want to appear negative in any way, because I do have a couple of things to look forward to.

First, I’m off to the UK next weekend to see some old, old friends who I’ve known since my school days (I would have said “since I was a small boy in short trousers”, but in fact my German mum made me a small boy in lederhosen …). Since we’re now all terribly middle-aged, I doubt there will be much debauchery, but I’m all geared up for drinking too much beer and talking bollocks.

And the week after that we’re going to the Parkinson’s congress in Glasgow. I’ll let Marie talk about that, she does cheerful so much better than me.

MARIE: In the course of our work lives, Jon and I have both attended numerous academic conferences – he to make presentations and build a network, me to sell books and build a business. We’ve both enjoyed this hugely, so when we heard of the World Parkinson’s Congress in Glasgow later this month, we were immediately interested.

It sounds pretty excellent, with four days packed with lectures, events, displays, games, posters – and full of people who really know about PD. An embarrassment of riches, really, and the difficulty is in choosing which bits to attend. We’re also hoping to meet others from the internet chat forum we frequent, I’ve promised to write a few articles for the Danish association’s magazine, and Jon is on a mission to take photos for a poster – plus we’ve signed up for every available optional extra, from the opening reception to the closing ‘brain game’ session.

Quite ambitious, and if Jon continues to feel as he does now, we’ll not manage everything. By luck and design, though, our hotel is very near the conference venue, so he can slink off for the occasional nap with or without me. It’ll be brilliant.

ON and OFF

JON: With Parkinson’s you are either ON or OFF. Being ON means that you are basically normal. Being OFF takes more effort to describe. My muscles are stiff, my brain is slow (this is called bradyphrenia) and my balance is buggered. In fact, I’m now using my stick whenever I walk. I started off using it just as a badge so that people in the street would treat me as ‘normal’, whatever that means, rather than look at me sideways like I’m some early-morning drunk. But now I find I actually need the stick when I go out, a disappointing deterioration.

It’s been an ON and OFF kind of week, with sadly more OFF than ON. I take my pills at the prescribed intervals of 3 ½ hours, but my morning dose is having less and less effect and all the doses seem to take forever to kick in. Then they work for bit, I feel 100% normal (sometimes even euphoric), but all too soon the little round buggers wear off again, I stiffen up, my balance goes and I generally feel rotten.

Sometimes the OFF feeling sneaks up on me. I might be reading or writing and miss hearing one of the many alarms I have set up around the house. But where a mechanical alarm may fail to grab my attention, my internal clock will soon remind me – my muscles stiffen, my brain seizes up, my speech goes and I get a bad blast of OFFness.

If I could predict the effects I could just adjust the dose, but some days the drugs work well, and other days they don’t. If I’ve had a busy day, I am quite prepared for that to be followed by an OFF day, but the OFFs also come for no good reason at all. I’m told this is likely get worse as the disease progresses, and I will have days when the drugs just don’t (won’t?) work. So that’s something to look forwards to, not. At least the time scale is years rather than weeks.

Honestly, I’m just feeling a bit sorry for myself today. I made the mistake of reading the Parkinson’s UK forum, which is great on a good day but not always a good idea on a bad day. Sometimes ignorance is bliss. This PD thing is beginning to get boring, and I just want a day off – or, rather, a whole day ON would be nice for a change.

My husband the drug addict

MARIE: Like anyone else with Parkinson‘s, Jon has become a drug addict in the truest sense of the word. He cannot live without his drugs. Not like a heroin addict who’d have a horrible time and might suffer life-long cravings if he stopped. Jon is a real drug addict and would have approximately zero quality of life without his drugs.

As he said here a few weeks ago, his daily schedule revolves around the drugs. First thing in the morning I go, like some wild-haired drug fairy, and wake him up by popping the first five tablets of the day into his mouth. Well, in actual fact he is often awake already and impatiently waiting for it to be drug time so he can start regaining control of his body and be able to get up.

The rest of the day is punctuated by drug taking (another 20 or so tablets in the course of the day) and defined by drug effects. Jon still gets quite predictable effects from his doses (unpredictable fluctuations are a hallmark of long-term dopamine addicts), so he/we can plan activities around his good times. We know not to plan a medical appointment for 11 am when he is at a low ebb, but make the most of the high tide between noon and 2 pm – etc., through the ups and downs of every day.

With his wellbeing so firmly in the grip of pharmaceuticals, it’s no wonder that a lot of Jon’s attention is focused on when the next dose is due. A lot of mental energy goes into waiting for drugs to take effect, or waiting out the dip before it’s time to take more. It’s a very inward-looking and, I sometimes think, a rather counter-productive focus – but understandable. Jon has alarms set up on his mobile to go off when his daily doses are due, but man and machine are not always in the same place, so he keeps asking me what time it is, and when he’s napping I get to play ‘hunt the phone’ and yell up to Jon that’s it’s now.

Being out and about requires drugs to be carried at all times, and preferably a drink to take them with. Jon usually has a bit of everything on him, and I carry emergency supplies of about a day’s worth of drugs in my handbag in case something should happen to keep us away from home for longer than expected – a puncture, an accidental meeting, a sudden desire to eat out. In fact, my small stash never leaves my handbag so I also carry it with me when I’m out on my own. Since Jon has started on the Ritalin, I think that makes me a criminal as I am now carrying a controlled substance not prescribed to me. Very edgy.

Speaking of edges, one place where I’ve put my foot down is the brinkmanship Jon used to practice with his prescription renewals which several times left him with less 24 hour’s supply in stock. That’s a bit too brave for my taste, and since the recent problems with the supply of a widely used L-dopa product, Sinemet, Jon now agrees. We try to have at least a week’s supply available at all times, although it does mean traipsing down the pharmacy on a very regular basis. Some drugs he gets 3 months’ supply at a time, others only four weeks, and of course we’ve not managed to synchronize any of it. Being ill takes a lot of time and effort.

Measurements

JON: You’d think I’d be getting bored, stuck here in flatland with what appears to be very little to do, taking my very short walks and (when he lets me) stroking the cat.. But I seem to keep busy. A major activity is taking pills, I’m forever checking the clock and waiting for the next set of tablets to become due. In between bouts of drug taking, though, I’ve been developing ways of measuring my tremor, twitches, general Parkiness, and abnormal nocturnal activities.

I’ve been told that I have a tendency to go on a bit, so I’ll restrict myself to describing my latest big-boy toy. Some might call it a watch, but I call it a development and measurement system. The device has a 3-axis accelerometer, a pedometer, a voltage sensor, and it measures temperature, heart-rate, air pressure – oh, and tells the time. Best of all, it communicates via wi-fi with a laptop and is fully programmable.

Have I worked out how it functions? No. Have I even managed to set the time? No (but my son-in-law set it in moments – I’m starting to hate young people). Also supplied is a shed-load of software. My aim is to program the watch so I can use it to monitor my activities during that day and my behaviour (particularly during REM sleep) at night.

While I was working I would probably not have attempted anything as ambitious as this, although I might have employed someone to set it up for me Now time stretches out into the distant horizon, and spending a great deal of it playing with my toys kind of gives me a sense of purpose because it
a) might just work
b) maintains my sense of identity (I’m a scientist, damn it!)

LATER: I wrote the text above yesterday afternoon when I was ON. You can tell because it’s upbeat, the spelling is mostly correct and there was no shortage of ideas or logic. After dinner I started to feel bad and shortly after 9pm I gave in and went to bed. This morning I woke up still feeling bad, and only now at midday do I again feel anything close to normal. My back hurts, my joints hurt, even my hair hurts, and I find myself holding on to my head because it feels loose (I know that sounds odd, but it’s the closest I can get to a description).

Last week at the conference was great, though this week I seem to be paying rather heavily for it. But I’m big and strong and it was worth it. One theory that has been floating round the on-line PD community is that heat (and its been hot as Hades here) could make PD symptoms worse. I don’t know why, but it fits with the kind of week I’ve had. Even when I’ve been ON, I’ve been slow and clumsy, and when I’ve been OFF, well, it’s not been good. I’ve had bad weeks before and I’ll have them again, I’m just hoping that the weather cools down soon so I can get me some proper ON time again. The forecast is promising, as is the prospect of moving north soon.

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!

Cold (s)naps

JON: Nothing new on Ritalin yet – possibly my prescription is stuck in the Xmas mail. The sooner it gets here the better. Meanwhile:

Xmas week thick snow covered most of northern Europe and our out-door thermometer recorded a low of –11 C – and that’s without taking into account the wind chill factor. I know this for a fact since I was made to walk around in it.

And that’s it, really, in terms of holiday activity. As often before, Marie and I have ignored Christmas. Okay, we ate and drank well, and were even moderately merry, but I am very pleased to say that there were no decorations, gifts, crackers or silly hats. Some good books, a number of icy walks, much cooking (on Marie’s part) and a fair bit of napping (on my part). Pretty good. I am planning for a repeat over the New Year’s break.

And I have, for once, deserved a break, because earlier this month I was quite the jet setter, flying first to Nottingham (on my own!) to give a lecture and then to Leeds with Marie to see the kids and grandkids, all of whom are wonderful, intelligent, beautiful and charming (though I may perhaps be slightly prejudiced).

The visit to Nottingham went well. I stayed with a friend, and we talked much of teeth, food and ‘the good old times’. Happily, the lecture I was there to give went OK too. I’ve shown this material before and thought I had the timing down to a T, with a number of loops and possible exit points to adjust the length, so my running slow was not too problematic. Near the end I lost it, though, and found myself staring at the screen in bewilderment before admitting that ‘I’m sorry, I haven’t a clue what this slide shows – let’s just move on…’

But I got interesting questions, no-one fell asleep, and I got taken out for what might have been a rather fine meal had I not spent so much time talking that when we finally arrived at the restaurant the chef had gone home. However, they served beer and peanuts so not all was lost.

Giving the lecture was, I think, less stressful than the one I gave last year, This I suspect was mainly due to the timing. Last time my 9am lecture involved a 5am start so I could get my body in gear, i.e. have sufficient time to enter my ON state, whereas this time we planned the lecture so that I would give it during my normal ON period.

Medical bulletin: Hot news is that I have a new appointment (at last) to have my sleep patterns recorded at a special hospital clinic. We tried this last year and it was an utter disaster. I was laboriously wired up to a 32 channel EEG – looked like a porcupine gone very wrong with cables super-glued to head, chest and limbs. Marie left the clinic at about 8:00 pm, I fell asleep at 08:01 pm and immediately ripped the electrodes off my head – very painful if you are awake, quite painless if asleep. By this time the night shift had come on and nobody knew how to replace the electrodes. Which kind of confirmed that I had a sleep disorder... This time it should be less dramatic, as I’m told I just twitch a bit when I’m in dreaming. Well, I twitch when I’m awake, don’t I, but we’ve been down that road. OK, I also jerk about and talk quite loudly in my sleep, which I admit is a bit anti-social. We’ll soon see what the doctors think.

De-cluttering mind and home

As Iaid in a previous blog I’m finding it harder and harder to think of things to write about on this blog. Not only on the blog, in fact, but also in the book Oh yes, The Book (on food science) that I am supposed to be writing with two old colleagues is turning into something of a chore. My shrink told me that I should not be surprised, that I should expect to find things like deep concentration and multi-tasking difficult. Although at the moment I can still chew gum and walk at the same time, there may well come a time …

My contribution to the book is supposed to be three chapters. I’ve more or less written one, though it’s not very exciting but does at least have a beginning, a middle and an end, and some parts which are of interest. But I wrote this more than six months ago, when I think my thinking was better. Since then, I’ve put a fair amount of time into working on the other two chapters. They now contain lots of words, but all very disjointed, and the more I try to fix the text the worse it seems to get. This, I’m told, is a symptom of my Parkinsonian inability to mentally multi-task and hold more than one idea in my working memory.

I’m hoping that recognizing the problem may be part of the way to fixing it. The shrink suggests that I should attack the writing in small chunks and at times when I’m the very most functional. This is clearly a good idea – in fact, it is painfully obvious, so why (the hell) have I not been able to work it out for myself? I still only recognize the wisdom when I’m ‘on’. When I’m ‘off’, I can sit at the keyboard for hours without achieving anything, and without recognizing that I am ‘off’ because … I’m ‘off’.

I’ve been trying to get into a routine of writing again, but this time I’m going to try generating small chunks of text by writing a paragraph or two on a well-defined subtopic and then passing the bits on to my co-authors who I hope will be able to slot the text into an appropriate position and provide any linking text that may be needed. Who knows, it might just work. And we have eight more months to do the job which might just be long enough to generate a manuscript.

Oh, and did I mention that we have put the house up for sale? There has been a mad rush of potential buyers coming to look round the house – TWO of them in three weeks. Marie has decided the house looked to cluttered, so she has rented a 5 cubic meter self-storage container into which many belongings are now disappearing. For example, we had some storage boxes under the bed – yup, they’ve now gone into storage. Who looks under the bed when viewing a house? I’ve decided to be politic and not mention it.

I fear that for the foreseeable future we will be living in a state of splendid isolation and increasing obsessive-compulsive behaviours. No-one other than potential buyers will be allowed into the house, all crumbs and spillages will be cleaned up on sight, pillows fluffed the moment one has got up off the couch – in other words, a living death. At least I have put my foot firmly down on the issue of my study, which remains a haven for all the messes exiled from other parts of the house. I suppose it’s nice to have something other than my Parkinson’s to complain about for a change …

Pacing ourselves

MARIE: We’re recently back from holiday, where we made more or less a circle by car from home in The Netherlands through a few days in Bruges in Belgium, a week in a chalet in the Loire Valley in France, and a couple of days visiting friends in Luxemburg on the way home.

There were a couple of firsts involved. This was our first driving holiday together and partly served as a taster / tester for a trip we are hoping to make in the spring, driving through the national parks of the Western US. Since Jon now only drives shorter distances that he is already familiar with, I did all the driving. Would that exhaust me? Would we bicker about directions and the need for breaks? Would Jon’s back complain at the amount of enforced sitting? Happily, the answer in all cases was NO. Our GPS (known as Mrs Tom) played a big part in this, but we also found that this is a holiday form that suits us both, at least for now.

This was also the first holiday Jon has ever suggested in all the time we have known each other. For the last 16 years, every holiday we have been on has been my idea – even most (but not quite all) of our visits to see Jon’s children and grandchildren have been suggested and organized by me. It was so nice, just really nice, that for once I didn’t have to convince and cajole him, but could sit back and think that “yes, that sounds like a pretty good idea – okay, let’s do it”. A first, but hopefully not a last. Admittedly, the reason behind it is that my one-time workaholic husband now finds himself with too much time on his hands and not enough energy to spend it in a productive manner. But I count this holiday (and those to follow?) as a thick silver lining.

Lastly, this is the first holiday where we have had to fit our activities around Jon’s medication regime and periods of wearing off. He is still struggling with strangely slow effects of his drugs, and fairly short periods of optimal effects. He takes a dose every four hours, but each dose only gives him about 2 ½ hours of peak condition, which obviously means 1 ½ hours out of every four hours when he is slow (both physically and mentally), tired and often in some discomfort.

It is an evolving task to find the right pattern of daily activities to fit around Jon’s ups and downs. We would regularly get in the car when Jon was on top of the world, only to find that by the time we arrived at our destination he would be hunched and shuffling and in no fit state to enjoy anything other than a sit down. So we spent much time enjoying the late summer sun in the street cafés thoughtfully provided by the tourist industry, and less time exploring monasteries and castles and medieval town centres (which I am sure suited Jon absolutely fine). We also fell into a rhythm of doing much one day and little the next, giving him time to rest and both of us time to make a good dent in the large pile of books we had brought with us.

These are obviously patterns that we must also make room for on future holidays, so perhaps our days of traveling in small groups with a guide are over, and perhaps we have to adjust our rather ambitious itinerary plans for the US trip. But what is also clear is that holidays are still very much an option and highly enjoyable for us both – so long as we allow for the fact that Dr Parkinson is our constant, invisible companion.

Freebies

Last Monday ‘Mrs Eee’ my ergotherapist paid me a visit at home, very civilized and very convenient for me. She decided she would try and get me a pole to help me getting in and out of bed (see http://www.pakpaal.nl/home-en). Amazingly, this will be entirely free for me. Apparently, there is some bureaucratic nonsense where a pole by the bed are paid by the local council but a pole by the sofa is paid by the health insurance – but never mind, they can argue it out between them.

As to my problems with controlling the computer mouse, Mrs Eee had a menu of different mice (mouses?) and also gave me the option of having a custom-built mouse – again paid for by the benevolent and munificent state. However, I suspect my mouse problems are due to going off, plus possibly a bit of repetitive strain injury in the palm of my hand. But it’s good to know that help is there if I need it.

The pole arrived this week, and there was much dancing around it in celebration. We installed it by my bed, and it works – not in fact so great for dancing, but as an aid for getting out of bed it is very, very good. It also turns out to be ridiculously expensive, but who am I to care? Mrs Eee is coming round again tomorrow to teach me more tricks for how to get maximum use out of my pole.

Another source of excitement is that I have had a test ride on a tricycle – one wheel at the front and two at the back. I found it surprisingly easy to ride, mainly because it’s almost impossible to fall off, which is really quite reassuring given my recent history with two-wheeled bikes. Steering is a bit more tricky: on a conventional bike you lean over going into corners, while on the trike you have to keep all three wheels on the ground so it’s best to avoid tilting the bike. Tilting is an amazingly ingrown behaviour, though – neither I, nor Mrs Eee or Marie who both tried the bike, could stop ourselves from leaning over.

Naturally, I also have to look around to see who is behind me (fortunately unlikely to be a car as Holland has an excellent network of cycle paths), a highly challenging task with my stiff neck. Unless I get a trike with side mirrors and get better at indicating where I’m going, I’m quite likely to cause regular crashes with other bikers. I am also well placed to crash into those ahead of me because the brakes are not 100% perfect, and those next to me as I tend to drift off line into anyone attempting to overtake me. Anyway, Mrs Eee will take me for more test drives before letting me loose on my own trike, and I am considering getting L-plates.

If indeed I get a trike at all, as this must first be approved by the local council, and then sourced from the manufacturers. I’m told that this can be a slow process – but what passes for slow here in flat-land ? 1 week? 3 months? Well, the sooner the better as I have rather high hopes for my renewed mobility.

Name dropping

Jon is in famous company with his Parkinson’s: Muhammad Ali, Pope John Paul II and, most vociferously, Michael J. Fox. (It is pretty poignant that Parkinson’s has all but taken Ali’s very distinctive voice from him, leaving him with an indistinct whisper.) Of course we read Fox’ first book, Lucky Man, where he talked about how he learned he had the disease, how he concealed it for years, how he finally ‘came out’, and how he wound down his acting career and started up his Foundation for funding research into a cure for Parkinson’s. Fox made his name being funny, so of course there was funny writing in there, but also parts that were very moving and that spoke directly to the stage we were at and the fears we were dealing with when we read the book.

Now Fox has just published a second volume of autobiography, Always Looking Up, which we bought as soon as it came out. Jon read it first and found it less engaging than the first book. I’ve just read it over the last few days, and I kind of agree. There is a fair bit of repetition from the first book, and a fair bit of the kind of name dropping and funny-story-telling that one would expect from any celebrity biography but that is of limited interest to us. However, when I decided to skip all pages with too many capital letters (i.e. too many famous names and the places they met), then what remained turned out to be a very decent book about coming to terms with the disease.

In the first book Fox had deep brain surgery on both hemispheres, so in this new book he is right out of treatment options. There are only the pills left, and at the advanced stage of the disease that he has reached, they work very much less than ideally. Basically, what you get after a number of years on L-dopa is what is termed ‘on-off’ periods, which mean periods when the medication is not working at all and periods when it is working well. These periods can alternate abruptly and quite unpredictably. As if that wasn’t enough to contend with, there are also periods when the medication is, in a sense, working far too well – when it doesn’t just stop the debilitating, cramped slowness, but instead accelerates the entire body into a riot of uncontrollable motions known as dyskinesias.

This is still many years away for Jon, indeed he may well never get to the stage Fox is at (normally, the later in life you get the disease, the slower it will develop). So in that sense, the book has less immediate significance for us. But as an example of coping, of counting your blessings instead of listing your troubles, of sheer chutzpah in the face of just about anything life throws at him, Michael J. Fox is amazing. What he does in the way of raising funds for research and keeping stem cell research a live issue in US politics is immensely valuable. His inspirational example, though, is entirely invaluable.