The long goodbye

JON: OK, I’ve stolen the title which normally refers to Alzheimer’s and the pain the dementia causes as the patient’s personality gets up and goes for a long walk. But as our move to Denmark gets closer and closer – with the old house now SOLD – I too am finding myself saying goodbye over and over. To my Dutch friends there are hugs and earnest promises to visit, but to my team of health professionals, all of whom have been competent and caring to a fault, it’s a real farewell as I am highly unlikely to see them again. So in no particular order, it’s goodbye to my favourite:

Physiotherapist
Movement disorder specialist
Parkinson’s nurse
General practitioner
Sleep clinic staff
Couple’s therapist
Psychiatrist
Social worker
Dietician
Psychologist
Pain clinic staff
Occupational therapist
Speech therapist
Neurologist

With friend like these, who needs enemas? I just hope that I will land with as good and dedicated a team in Denmark.

Very soon now, we will get the keys to the new house, and not for the first time by any means we will start a new life in a new country (well, new to me anyway). We should be used to it by now – Hong Kong, London, Holland, now Denmark. Moving is supposed to be as stressful as getting a divorce, but I think we have it down to a tee. Sure, it takes a lot more planning and requires an earlier start now that I have PD, but we’re pretty good at this stuff.

Next week, we meet our new neighbors – I’m keeping my fingers crossed that all will be well, particularly that the village is free of psychopaths (unlike here, where feral teenagers shot at us through the window) and fundamentalists (unlike here, where everyone knows which church everyone else attends, and knows that we don’t attend at all).

And it will be interesting to compare the Dutch and the Danish health care systems. Marie has ferreted out the name of a GP near the new house who has experience with Parkinson’s, and her sister knows which neurologist I should request. We’ll just have to take it from there. I’m sure you’ll hear all about it here.

Motivation, motivation, motivation

MARIE: Finding the right treatment for non-motor symptoms of Parkinson's Disease can be a challenge and can require much patience and perseverance.Regular readers may already have pieced together the story below, but we think it's such an important one that we'll take the opportunity to tell it in one, focused post, as it shows how a fairly common complaint can find an unusual solution.

When PD has just cost you the job that has been both your work and your hobby for decades, it is hardly surprising if you end up on the couch watching daytime TV and snoozing the day away, with little idea how to fill your undesirably early retirement. But shouldn’t you eventually get back off the couch?

I soon became concerned at Jon’s inactivity and terrified that this was becoming permanent. Jon, though, felt he was reacting to a difficult situation in a rational and ‘normal’ manner. This became a source of much conflict which landed us with a relationship therapist who focused on adjusting our expectations of each other, and in particular helped me to accept that the diagnosis had forever changed what I could expect of Jon. Which was really quite helpful, but still left Jon snoozing on the couch.

We brought up the issue again a few months later when Jon was seen by a psychiatrist during a multidisciplinary evaluation for PD. His daily activities and lack of initiative made her suspicious that he was depressed, but we didn’t think so as he wasn’t the least bit miserable. So Jon was referred for a clearer diagnosis to a clinic employing both a psychologist and a psychiatrist with extensive experience of treating PD (Clinic Thalamus in Wolfheze, The Netherlands, where Jon was treated by psychologist Ad Nouws and psychiatrist Dr. J. Wiersma).

The first appointment was quite a revelation as Jon immediately felt the psychologist had a clear understanding of his symptoms and situation. Over the next months, the psychologist tried various approaches to discover what lay behind Jon’s inactivity. Much of this process was difficult for Jon who felt challenged and sometimes badgered by a coalition of wife and therapist – but he persevered as one possible diagnosis after another was examined and ruled out.

Was Jon depressed? He didn’t feel depressed: no excessive unhappiness, withdrawal or despair. Was he in denial about having PD? Well, to some extent, but not pathologically so. Were there signs of dementia? It was a huge relief when that, too, was ruled out. Jon himself thought he might suffer from apathy (basically an absence of any kind of emotion, good or bad – and often said to be worse for the relatives, since the patient is inherently indifferent). But that didn’t entirely fit either because under the right circumstances, Jon still had happy moments with friends or grandchildren.

There was an important clue, though, in the strange fact that Jon would never ever take the initiative to see any of the people he enjoyed spending time with. This lack of self-motivation and initiative is not uncommon in PD and seemed to fit Jon exactly. He could join in and enjoy activities started by others, but if left on his own would essentially do nothing at all.

With a good hypothesis as to the diagnosis, Jon was referred to the centre’s psychiatrist to see if medication could help. To our great surprise, the psychiatrist suggested Jon should take methylphenidate (better known under the brand name Ritalin). Apparently, in doses quite a bit lower than those generally used to treat ADHD in children, methylphenidate can help bring focus and aim back into the lives of those who have lost these to brain damage. It has been used off-label to treat patients with stroke or traumatic head injury and is now also being used by a few PD patients.

In January 2010 Jon started on one dose of 10 mg a day, which was increased over the next few months to 10 mg four times a day at approximately four-hour intervals. It took about a week before he felt convinced that the drug was having an effect, but from that point on it’s no exaggeration to say that it transformed Jon’s life. He has regained his focus, initiative and much of his concentration. He plans ahead and has busy days full of meaningful and enjoyable activities. He even feels more in control of his disease and better able to deal with the ups and downs it brings him. In a nutshell, Jon has his life back, and I am delighted to have my husband back.

If I had not continually pressed my opinion that there was something wrong with Jon, if he had not been fortunate enough to be treated by specialists in the mental, emotional and cognitive effects of PD, and if he had not been prepared to continue with the appointments despite his belief that his reactions were entirely normal, Jon would still be on that couch today. Little has been written on the use of Methylphenidate for PD, and hardly anything is known about the long-term effects. Having had such positive results, we are keen to add our experience to the growing body of knowledge, and to tell Jon’s story as a message of hope for others who find themselves in a similar situation.

Perhaps it's not so bad after all

JON: A number of readers took the trouble to comment on one of my recent postings. They both(!) wanted to know if my not hearing what Marie says isn’t simply a bloke thing, i.e. pretty annoying, but something you can live with. With PD, however, there is always the nagging fear that these cognitive lapses could be the precursors of something debilitating. I think I just proved that I can handle big words – but is that enough to demonstrate my cognitive health? It’s well established that short attention span and poor short-term memory can be symptoms of PD, but since they’re also established symptoms of being a bloke, I don’t suppose I can ever know for sure.

The great news of the week is that it really seems as if we have sold our old house! A contract has been signed, the cooling-off period is over, and all that now remains is for the buyers to secure a mortgage, which they claim to be confident of doing. They want the house rather sooner than we had planned on leaving it, but these days the buyer is definitely king so we’re shifting our plans to suit them. I expect much chaos and confusion will descend on us, but at least this cognitive challenge is temporary.

As it happens, the contract was signed the day before we went off to the World Parkinson’s conference in Glasgow. I’d been slightly apprehensive about going, because I didn’t really want to see people in late-stage Parkinson’s, and they were rather difficult to ignore at the WPC. But although some were in wheelchairs and others very stiff or dyskinetic, they seemed to be OK with it which was reassuring. After a while I was seeing the person and not the chair – and whilst these people represent my future, I no longer think it’s going to be too bad. I reckon I could get used to driving an electric chair – the ride-on lawn mover in the new house will be excellent practice.

Due to regulations which prevent drug companies from marketing directly to patients, we non-medic delegates were not allowed into some of the sessions which were restricted to medics, nor were we permitted in the area where medical gear was on display. Of course it was a simple matter to borrow a badge from a friendly medic and get in that way, which of course I did – but was disappointed to find the medics-only stuff stunningly dull (which may have been down to the complexity of the topic or, more likely, the poor presentation skills of the clinicians). The lectures directed at non-medics were much better.

Of course, I actually spent most of my time outside the lecture halls chatting to fellow Parkinsonians and having a fine time. What was great was that it was possible to feel completely normal. We could shake, rattle and roll and no-one batted an eye-lid – though on second thoughts, batting an eyelid is perhaps not the best metaphor…

Piping for Parkinson's

MARIE: We got back from Glasgow late last night after a wonderful week at the World Parkinson Congress. I had been looking forward to it for some time, but Jon had been more apprehensive and worried that it would be difficult and depressing to see others further along in the disease progression. Others we talked to at the Congress had had the same fears, but everyone – including Jon – found instead that it was a huge relief and liberation to be among people where PD was the norm. Nobody thought you were slow-witted just because you took a while to answer a question and nobody thought you were drunk just because you weren’t too steady on your feet. Bliss.

Over to JON: I’d been somewhat apprehensive about going, because I didn’t really want to see people in end-stage Parkionsons, and there were a few of those around – but they were OK, as it turned out, and it wasn’t frightening at all. Dinner on the first night was just me and Marie, while on the second night dinner was replaced by a huge reception for all the delegates (a bit of a challenge to juggle conference bag, wine glass, canapés, business cards, pill box and walking stick all at the same time, I can tell you!).

On the third night we joined up with a couple where the wife had attended the same talk for carers that Marie had been at, and we spent the last evening with a group of Parkies who all knew each other from one of the internet chat forums. These people came from all over the world, but what does that matter for a man who already lives most of his social life in cyberspace?

Back to MARIE: We learned a lot about Parkinson’s, both from listening to the presentations and, at least as importantly, from meeting others with PD and their partners, learning how they cope and sharing experiences. There were some pretty emotional moments too, particularly a speech at the opening ceremony that really hit the nail on the head and explained to all the researchers in the audience how imperative urgency is for those who live with a degenerative disease such as PD. (You can read the full text of the speech at http://www.wobblywilliams.com/DPBR3.html.)

I think we (Jon especially) have made some new on-line friends, and I know we’ll be very keen to join other PD events in the future.

By the way, the Congress is encouraging everyone to sign a global Parkinson’s pledge that calls on governments and organizations for more urgency, more joined-up thinking, and more involvement of people living with the disease in the efforts to find a cure. If you have PD, you need to sign this. If you are reading this blog but don’t have PD, Jon and I would count it as a personal favour if you sign the pledge. Go to http://www.parkinsonspledge.org/ to read the text and sign the pledge online.

Going cheap!

JON: As you know, we have agreed the purchase of a new house in Denmark on the 1st of November. We will obviously both be there for the ritual meter reading and key exchange, but shortly after that I will return to the Netherlands alone, where I will look after the cat, the old house and possibly even myself, while Marie will stay in Denmark to supervise work to revamp a bathroom, install a woodburning stove, paint every surface of the house, sand all the floors, etc. etc. etc. There’s a lot to be done, but if all goes to plan we’ll end up with a very habitable (and PD friendly) house.

We still have the problem of disposing of our existing house, although I am happy to report some recent and promising movement on that. There is a lovely couple who appear to be interested in the house and are coming back for a second viewing this weekend. Many questions have already been asked and the answers accepted, so there is a pretty good chance that this is it. Fingers tightly crossed!

Whatever happens with the old house, the whole projects involves regular toing and froing on the German motorways which are perhaps not the safest place in the world. Marie and I are now of an age when diseases, disasters and decrepitude are real concerns, and I must admit I do rather worry about the immediate future. What would happen to me in the event of Marie’s sudden demise on the speed-crazed bumper of a Mercedes driver? I could end up with two houses in places where I have not an iota of understanding of the legal system, the language, my rights, etc.

But that’s just me being bleak. I’ve been told by people who read this blog that I am amusing, even outright funny at times. Well, it’s not meant to be funny (at least not all the time). I’ve got a progressive neurological disease, and that’s just not a joking matter – so shame on you for laughing. If I’m miserable, then I want the rest of the planet to be miserable too! Annoyingly, though, the only person around here on whom I can attempt to inflict sympathetic misery is Marie, and she downright refuses to take the blame for my moods.

What’s a bloke to do? Maybe going to the World Parkinson’s Congress in Scotland next week will help. I like conferences, I like meeting new people and networking, and I particularly like being in places with lots of pubs.

Quiz time

JON: Marie and I have had a bit of a row this week. It’s a pretty childish on both our parts but still miserable while it goes on.

The problem has two parts. The first part is that “we have a plan” for the processes and work involved in our up-coming house move. We have apparently discussed this at great length and depth. The second part is that I keep asking for details of the plan. Marie finds this very annoying as I keep asking about things that she claims we have already discussed to bits, and I can’t say I blame her.

However, rather than telling me that we have had the same conversation five times already and please (for god’s sake) will I pay attention this time – which would seem to me a reasonable strategy – what happens instead is that she starts to quiz me: “We’ve agreed this already, you know perfectly well what was decided, so you tell me the answer to your question”. Put under stress like this, my mind goes blank, my mouth dries up entirely and I may even start to shake. If she keeps pushing, I get angry and start to sulk. You don’t need to be a rocket (lettuce) scientist to predict that this doesn’t help.

We seem to be prone to this kind of problem where my memory causes grief. For example, I recently got the title of Marie’s book wrong, a small but emotionally significant error. And annoyingly I can remember a similar recent argument, but I can’t remember any of the details (and this is not a joke).

My psychologist has told me that this sort of thing is quite possibly not actually a memory issue but a question of not paying attention. The problem is that Parkinson’s makes it hard to multitask, so if I’ve been told something during a walk in the woods, I may not remember what was said as I was too focused on the task of walking. Which is of course annoying for Marie, who may feel that she talked to me at a time with few distractions as we were all alone in the woods.

Anyway, the latest row has passed and we are now friends again, just in time for me to bugger off to the UK tomorrow for a boys-only weekend. We used to be able to keep a row going for days, sometimes weeks, but (like erections) they just don’t seem to last as long these days.

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.

Making the best of things

MARIE: I recently read a book (not in English) that purported to give advice and support for the chronically ill and those who care for them. I really tried to like this book despite its poor organization, but it fell down in the usual place: no, it does not give support to carers, it just instructs us on how to support those we care for. It shouldn’t come as much of a surprise to me, really, but it was still disappointing.

However, I did take one gem away from this book which made the hours spent reading it well worthwhile. It is the expression amor fati, which loosely translates as “love of fate” or “love your fate”. Wikipedia tells me this motto was coined by Nietsche who I suspect may have meant something like “just accept that life is cruel and ugly and that you can’t do a thing to change it”. But I have decided to understand it more as “embrace your circumstances rather than fighting them”.

It’s so easy to feel sorry for yourself and bitter at the restrictions PD brings to both the person with Parkinson’s and the carer, and I admit we both do that now and again – Jon perhaps more than me because not only is his glass always half empty, it also has a dead fly in it. Neither of us has ever asked “why me?” which seems to be a question that occupies people with some level of faith, but we have been upset that, not to put too fine a shine on it, shit happens and it happened to us (in the picture it happens very neatly indeed).

On the other hand, while the disease has unquestionably slammed shut a number of doors, it has also opened others that we had never even considered. For Jon, for instance, taking early retirement has made him a far more sociable person who stays in touch with old friends and colleagues on Facebook, visits his grandchildren with keen regularity and generally enjoys talking to people about things other than his work – a major change and improvement, I can tell you!

For myself, the disease has led me to start writing about PD – this blog, regular articles, and working on a few book manuscripts – which I greatly enjoy. And it seems there is a decent chance it will lead me away from my current job in an ailing industry (academic publishing) to new and more meaningful work on the carer project that I talked about a few posts back. At least, reactions have been positive all round from carers, health professionals and patient associations I have discussed my ideas with. Will I also be able to secure the funds to make the project possible? I don’t know, but I’m feeling really hopeful. Amor fati in action!

Panic on Dutch Street

JON: One of the minor irritations of being an expat is that I keep having to prove my identity to many and varied financial institutions all of whom require proof that I am me and that I live where I claim I do. They say this is to combat money laundering, which can apparently be prevented by the presentation of a utility bill. Annoyingly, different firms require different information: some want my passport, others are happy with a gas bill; some want originals, others will make do with a photocopy.

This week I had to go to the bank (again) to get a certified copy of my passport. I’ve done this several times before with no problem, but this time the clerk wanted to know why I needed the copy. I hadn’t expected this question so had no rehearsed script ready for this. Unfortunately, stress, surprises and snap decisions go very badly with Parkinson’s disease. So although I attempted to answer, my mouth just seized up and I simply could not get a word out. Fortunately Marie was with me and was able to “sort me out”, which basically involved getting the clerk to repeat himself and then attempting to make a dignified retreat. I don’t think anyone noticed (much).

Anyway, the following day we returned (same bank, different branch – I do have some pride left), but this time with the letter explaining why the foreign financial institution wanted the information. And of course the clerk in the second branch was perfectly happy to certify my passport, disdainfully waving away the letter that the first clerk had insisted on.

If you, first clerk, are reading this, you know who you are ... and just remember that you know where I live.

Here is the hole I hoped would open up to swallow me:

Dysphagia

JON: I’m having a bit of a down-day today, and it doesn’t help that I’ve the time I’ve spent on the internet has been very fruitful. The thing is, sometimes ignorance is bliss and knowledge turns out to be quite uncomfortable (I should know, I’ve got 3 degrees). But I assume that if you are reading this blog, then you are not going to be fazed by a bit of new information.

I’ve been trawling the web for information on dysphagia, which means difficulty in swallowing, and found an excellent posting in the Parkinson’s UK Forum by Cutiepie. (considering the odd names people choose as user names on the forum, Cutiepie is almost sensible). Spurred on by a question from someone who is having problems clearing her throat, Cutiepie has posted a long and thorough text explaining the problem and its manifestation launches – a true magnum opus (I’m not being condescending or patronising – it’s really good). So try the link to Cutiepie, because we all need to be aware of the dangers of dysphagia.

It used to be said of smokers that “it’s not the cough that carries you off, it’s the coffin they carry you off in”. Well, the same is probably true of PD which is generally hailed as a disease you die with rather than die from. Not altogether true as poor balance can lead to perilous falls. But even more commonly (I think) it’s the coughing and choking on food that will get us, either quickly where we turn blue and urgent, or slowly with an lung infection due to aspiration pneumonia (breathing food into the lung where it causes an infection).

So make sure that people you know are familiar with how to perform the Heimlich manoeuvre. Dysphagia is not restricted to PWPs, of course, it also plagues stroke victims and it happen to normal people too. Careful, even mindful, eating is called for – but realize that biting your tongue, lips and cheek is almost normal as we Parkinsonians loose control of the muscles of the head and neck.

These guys, however, appear to have had no trouble swallowing their food...

Fame at last!

JON: I have a weekly subscription to New Scientist, my favorite magazine – it used to be that I just looked at the job vacancies, but now I actually read the text. One of my favorite columns is “Feedback” which is where the NS keeps its funnies. Feedback recently had a piece on acronyms. I responded by sending them my favorite homemade acronym which I’ve always been rather proud of, so I was very pleased to see it in print in the July 10th issue, wrapping up a long discussion of third-order multiply nested acronyms (don’t ask!). Here’s my bit:

“And that, surely, is that, we thought — but no, for here is Jon [...] telling us that some years ago he presented a paper at the 1995 Annual Scientific Meeting of the Faculty of Dentistry at the University of Hong Kong, which had the title ‘Average chewing rates on nut yoghurt mixtures". ‘As you will see immediately’, he says, ‘the acronym of this paper title is ACRONYM.’ He challenges Feedback readers to produce a similar title, one which is an acronym for "acronym", and then – this is the hard part - get it published in a reputable journal. Unless and until this happens, that’s enough on acronyms.”

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.

Who cares about carers?

MARIE: The ex-pat life may sound quite exciting and even, at times, glamorous, with all that jetting off to see foreign friends (strictly on budget airlines) and conducting daily life among the natives in little-known languages (and with appalling grammar). The reality, of course, is rather more pedestrian and involves far more hassle and incomprehension than it does cultural highlights and insights.

However, it does give you an excellent vantage point from which to discover what your home-pat culture is actually like. And I have discovered that, part from the pickled herring and consensus politics, Danish culture also involves a striking blindness to the position of the family carer – to the point where there isn’t even a word in Danish that matches English “carer” and American “care-giver”. And that’s where we’re moving to?

I have found several very useful books in English – chief among them Hugh Marriott’s book The Selfish Pig’s Guide to Caring – but find vanishingly little self-help literature for carers in Danish. As I wrote a few weeks ago, I get huge benefit from participating on the internet forum run by Parkinson’s UK, particularly the special section for carers. Again, nothing similar exists in Denmark. I’m glad I already have all these resources in English that I can turn to for help.

Then I read a book by a Danish journalist whose husband was diagnosed with aggressive ALS (motor neuron disease) shortly after their wedding and was dead within a year. Although ALS is very different from Parkinson’s, there was so much in this book that resonated with me and spoke to concerns and frustrations I had also had. A while later, I spoke to the daughter of a man who had a slow and difficult death from cancer, and she too had found a great deal in the same book that she had identified with and that had helped her understand and accept her thoughts and reactions. Okay, this is a really well-written and well-considered book, but there’s more to it.

I realized just how much carers and relatives of the long-term ill have to give each other – whether the disease or condition is chronic or terminal, mental or physical, the result of an accident or a slow progression. I reckon it’s therapeutic to tell your story, to make sense of what has happened in your life and to begin to take the sting out of it by structuring and retelling it in a way that slowly incorporates this story into the longer storyline of your whole life. And I reckon it’s equally therapeutic to read these stories, to learn how others have dealt with and overcome difficulties, and to realize that the feelings that pain you and shame you are common to many and can be survived.

So what I’d like to do when we’ve moved to Denmark is collect carers’ stories and publish them so other carers can learn and benefit. I’ve spoken to a few people already who seem to think this is a good and useful project and who have offered their help. I get lots of different ideas, most of which bob around for a few weeks and then sink without a trace, but I really hope this turns out to be one of the viable ones. To be continued …

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!

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.

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.

Compliance

MARIE: We’ve had a bit of a fraught couple of days, and are still far from settled. The trouble stems from an on-again/off-again argument we’ve been conducting for the last several weeks about what degree of freedom and flexibility Jon can safely allow himself with his medication. The technical term is compliance, which means a patient's adherence to a recommended course of treatment.

Jon wants to be able to take his L-dopa and Ritalin when he feels the need, including splitting doses into several smaller portions and/or adding extra doses, rather than having to adhere to the schedules set in collaboration with the neurologist and the psychiatrist. Jon says that if he waits with the next dose until he goes OFF, then not only does he feel pretty awful, it also takes him longer to get back ON again afterwards.

I, on the other hand, feel that while some flexibility is both reasonable and desirable, this needs to be managed within a safe framework, preferably one set out by the prescribing doctors. While the neurologist is always happy to discuss and adjust Jon’s medication, she has said that she prefers him not to experiment on his own (but he does so anyway). And the psychiatrist has set up some quite wide, but very clear guidelines within which Jon can be flexible (which he only partially observes). Jon thinks he is being perfectly reasonable, while I think he is out of control.

The trouble is that I have no idea how problematic it is when Jon doesn’t comply with his prescribed doses and timings. I know that both L-dopa and Ritalin are strong drugs, but I don’t know if over-use or sloppy use can cause any lasting problems. Is Jon being a bit careless (like going for a winter walk without a hat) or is he being reckless (like riding a motorbike without a helmet)? And if the latter, is that any of my business?

There, I suppose, is the real heart of the matter. Jon has come close to drug abuse before, partly because the drugs themselves were addling his mind, so I feel it would be mega-negligent if I didn’t react now that I see the same patterns of behaviour repeating themselves (plus, if something goes wrong, I will suffer for it too). But are they really the same patterns, or am I projecting the past on to the future? I wish our psychologist wasn’t on holiday …

A place to call home

MARIE: We’ve just been to inspect a possible new home for the second time (on a lightening quick trip, so don’t nobody get upset that we didn’t pop round). On the surface of it, this house may not look terribly exciting – a 1960s bungalow surrounded by older and more characterful homes, with two good-sized reception rooms but some rather small bedrooms, a bathroom about which the less said the better, and a very 70s sauna-cum-double shower arrangement in the basement.

But it answers (almost) all our very specific and unusual requirements. We are trying to be future proof here, that is trying to find a home that suits us now, and that will continue to suit us if/when Jon gets worse – and a home in which it is possible to have a pleasant life even if quite house-bound. That rules out the vast majority of houses, and when you then add my mad idea that I must have an oversized garden in which to grow raspberries and eggs, the selection really narrows down.

These are our requirements:

- Preferably a bungalow as stairs may soon become difficult for Jon (and if not a bungalow, then a house with a bedroom and full bathroom on the ground floor).

- Ideally as much as five bedrooms as Jon and I can no longer share due to his REM sleep disorder, and we each would like a smaller bedroom to use as a study as he now only works at home and I will increasingly have to do the same. Plus we would like a guest room as we will be living quite far from family.

- A large kitchen where Jon will not get “stuck” in the corners, and which can be adapted for drawers instead of cupboards (as bending down is getting difficult).

- A bathroom with a large shower cubicle big enough for Jon plus stool or Jon plus helper. Importantly, there must be no high edge to get into the cubicle. Also, ideally room to fit a urinal as Jon’s aim is deteriorating.

- A heating system that requires minimum input (many properties we have seen have had pellet burners which are economical and verging on sustainable, but which require regular topping up from heavy bags of wood pellets).

- Location not too far from the nearest neighbour to avoid isolation – e.g. if I am away and Jon needs urgent help. Ideally also with some kind of shop in walking or triking distance.

- A good condition that does not require much in the way of DIY which is now mostly beyond Jon and which was never in my reach in the first place. This means we are wary of older properties.

- Because of our limited future income from benefits, ideally something we can afford to buy without a mortgage and that does not cost a fortune to insure, heat or pay tax on.

- And then we want a very large garden, good outbuildings, easy access to the capital which holds most of our local social life and the national PD centre of excellence, and no road noise.

This somewhat uninspiring 60s bungalow seems to tick all these many boxes, plus has fantastic views of the sea and nearby islands (as you can see). We liked it when we first saw it under a blanket of snow, and now that we have seen it with the garden and surroundings revealed, we like it very much. There is still a structural report to be obtained, estimates on a new bathroom to be collected, the price to be negotiated, and the small matter of selling our current house. But I wouldn’t be at all surprised if this is where we end up.

Feeling good

JON: I mentioned a while ago that I had added a “hit counter” to this blog and as you can see from the map below, our fame begins to spread far and wide. Since January we have had 160 unique hits (that is 160 different people) of which about 90% have made return visits – which seems fairly good to me. So thanks for reading the blog, it makes a big difference to know that there is someone out there who likes it enough to spend time on it (repeatedly).

Last week, Marie and I went on separate trips, hers involved working for a living, while mine involved having a good time. And much to my amazement I did. At home I get very, very tired, sometimes as early as 8 pm, and am regularly in bed by 9 pm. On this trip, however, I stayed up past midnight and woke at my normal 7:00 – even better, I woke with no hangover.

I’m not entirely sure what I was doing right. At the first sign of fatigue, I gave myself booster doses of L-dopa (in half tab increments) and added an extra Ritalin tablet per day. In addition to the drugs, I drank beer. Not in excess – less than a pint per hour, but that’s still much more than I’ve had in a long time.

So the question is, what was it that made me feel so good? Just the fact of seeing old friends (and having a very good time)? Increasing the dosage of L-dopa? Increasing the Ritalin? Drinking beer? My guess is that it was a combination of factors. This is clearly an experiment that needs to be repeated under completely uncontrolled conditions, so I am already thinking about my next trip.

At the airport

MARIE: Apologies for the slight interruption in service – we have been away on each our long weekend trip. I went off in one direction to a conference, while Jon went off in the other direction to visit friends and family in England. As a result of good fortune and careful planning, we had flights out of Amsterdam within half an hour of each other. It felt very jet-setting to kiss my husband goodbye not at the train station, and not at passport control, but actually airside at the gate.

The trip also led me discover something new about Jon and Parkinson’s. A lot of people with Parkinson’s complain that when they are out in public, people treat them like they’re drunk. I’ve never really understood that – okay, the slurred speech that PD can cause does perhaps sound a bit drunk, but how can somebody walking towards you in the street know what your speech will sound like? And drunks don’t tend to shake and twist, do they? So although of course I believe what people say when they complain about being treated like drunks, I’ve never really understood how this came about.

But standing behind Jon in the queue for passport control, seeing him wobble up to the counter, and then watching as he swayed and gyrated while the officer checked his passport – now I know where the drunk thing comes from. It’s all about balance.

In addition to all the other things PD does, it affects “postural stability”, which is the ability to take up a posture and maintain it. People with advanced PD often fall because of impaired balance, and already Jon is finding it almost impossible to maintain balance when walking backwards. And, as I realized at the airport, he can’t stand still for even the 20 seconds it takes to get his passport checked. He was in constant motion, swaying a bit to the right, righting himself but then leaning to far to the left, bending the knees to lower his centre of gravity and regain balance, then straightening up and starting all over again with the gentle swaying. And he looked exactly like a morning drunk. It is heartbreaking to see, and to know that there is nothing I or anyone else can do to make it better.

Actually, it reminds me of our last trouser-buying expedition where I sat outside the changing rooms as Jon did battle with shoes and feet and trouser legs. Meanwhile, a much older man strode out of his changing room to confer with his wife over trousers and as a totally natural thing he did that deep knee bend that you do to check that the trouser legs aren’t too tight. Such a small thing, such a natural and familiar movement, and so far out of Jon’s reach. I felt a right idiot, coming over all emotional outside the men’s changing rooms. Jon isn’t the only one to make a spectacle of himself.

Bully tactics

MARIE: We’ve hinted a couple of times at the long and hard conflict with Jon’s employer that we fought and finally won, but we have never given any details. Well, now that Jon’s disability pension is all settled and there is no “risk” that he will be forced back to work, we think it is time to tell the story.

To cut a very long story short and stuff it into a nutshell, what happened is this. Jon was off sick from work for a few months before he was diagnosed with PD, and for a few weeks after as his PD medication was started. He then returned to work as normal. But his superiors had by now realized that Jon could turn into a serious liability (because Dutch employment law is very generous to sick employees).

Naturally, you are not allowed to fire people on the basis that they might get sick again soon, so instead somebody tried to engineer a situation where Jon could be fired for not meeting his targets. The interesting thing was that no targets had ever been set for Jon.

So the employer set up a catch-22:
1) they would not accept Jon’s claim to be well enough to work again until they had a clear description of his job and could see that he was capable of doing it, and
2) the job description that they insisted Jon must now agree to in writing included such wildly unrealistic targets that he was absolutely certain to fall short.

Smart thinking, eh? It took 8 months of increasingly frantic and adversarial e-mails, letters and meetings, and the involvement (at our initiative) of a legal advisor, several doctors and an advisor from the Dutch department for work and pensions, before at last the employer ran out of obstacles and objections and had to accept that Jon was both legally and actually back at work as normal.

Now, conflict between employees and employers is of course quite commonplace, but what really strikes me about this particular case is the enormous power imbalance. A huge corporation brimming with legal and HR experts, versus one man trying to get on with his life in spite of a tough diagnosis that he has yet to fully come to terms with. They ground him down and robbed him of all self-confidence with their constant insistence that he was not fit to do his job. The terrible thing is that with PD, that will become true sooner or later, so this was also a race against time that the employer tried their level best to drag out indefinitely.

Halfway through this process, Jon was no longer in any state to fight his corner, he was mentally and physically at rock bottom. If Jon had been on his own, he would have given up and signed where they wanted him to, and would have lost a very significant chunk of his pension entitlement. Fortunately, I was by then so furious that I was just dying to take over where Jon had to leave off, so for the next several months I wrote letters and e-mails in his name and put exact words into his mouth for meetings. The employer refused to talk to me directly, and in the end also refused to answer “Jon’s” e-mails. Oh, it makes me angry all over again just thinking about it!

It makes me angry for all the people who don’t have a wife spoiling for a fight, and for all the people who are intimidated by bosses and legal documents and red tape into dropping legitimate claims. And particularly it makes me angry for Jon who could, with a bit of support and flexibility, have continued to be productive for longer and (this is what I really mind) have had a much less traumatic transition into retirement.

They should be ashamed of themselves.

I'm not pregnant, I just have Parkinson's

JON: I’m fat. For the past 30 years or so, I’ve maintained a constant weight – around 80 kg, not fat and not thin, just convex enough to be cuddly. It never seemed to matter what or how much I ate or drank, my trousers always fitted without additional engineering such as belts or braces. Possibly I was one of those lucky people who fidget away any excess calories without even thinking about it, and certainly without thinking about exercise.

But now I’m fat. Not slightly overweight, but FAT. Actually, PD is supposed to make you thin as you shake, rattle and roll your way through life and dribble out half the food you try to eat. My problem seems to be that my medication is working rather too well at the moment

The burning (BBQing?) question is: how did I get from there (a handsome well-proportioned figure of a man) to here (a fat git with braces and a potbelly). One way to look at it is that I fought anorexia, and won. My first symptom was back pain which was treated with morphine which reduced my appetite – so during that period all I ate had to be high in calories because it was so low in quantity. Even so, I began to loose weight, so much in fact that my trousers became loose and I had to learn to keep a hand in one pocket to prevent serious trouser malfunction.

Trouble is, once we had the pain under control and the correct medication for the Parkinson’s, my appetite came back but I didn’t change my diet, or not quickly enough. At first this seemed a good thing as I grew back into my old trousers. But my appetite has just increased and increased and increased, possibly because of the PD drugs which are known to mess with people’s lusts so some become gamblers, others sex maniacs or shopaholics. Me, I’ve just become permanently hungry, and trousers have become a perennial problem. Once, after friends had cooked us a lovely dinner, I was hungry again within minutes and actually asked if they happened to have any cheese about the place! Marie was mortified.

Now one size of trousers is very, very tight and makes sitting down difficult, while the next size is too loose and won’t stay up. So, going for comfort, I experiment with belts and braces. The problem is that the belt buckle traps itself under the great abdominal bulge where it feels very uncomfortable. The other option is braces, but get them too tight and they pull down on the shoulder so you feel like you’re carrying a heavy rucksack (or size EE silicone breasts, perhaps). And just to add insult to injury, I can’t get a belt through the loops on the trousers without Marie’s help, nor can I fix my own braces to my trousers unaided.

I understand the appropriate expression is that inside every fat man, there’s a thin man shouting for more cake…

Invisible illness

MARIE: There was a segment recently on BBC News about a campaign to educate people about dementia, so they did an interview with an Alzheimer’s sufferer – a pleasant-looking woman in her fifties, who gave her answers unflustered and in full, grammatical sentences (not easy on live TV, I should think). One of her points was that because she generally appears completely ‘normal’, people around her don’t realize how much the disease has affected her. As she said: “You can’t see that I can’t remember things, that I can’t count money, and can’t read a book”.

Yet even after she had said that, I was still surprised to learn at the end of the interview that she had recently stopped living with her mother and had moved to a care home. Nobody lives in a care home unless they have to (however nice a home might be, it is still a very expensive way to lose your privacy), so this really brought home her point: this disease can be so far below the radar that it remains invisible even after you’ve been told that it’s invisible. How can such a well turned-out and articulate woman be living in a care home? Because appearances can be deceptive, that’s how.

And as it happens, Jon and I had discussed just that point the night before. In fact, we had started out talking about this scientific textbook he is supposed to be writing with two old colleagues, and about which he has frequently moaned and procrastinated in his posts. The manuscript is contracted for delivery at the end of the year, so if it’s going to happen at all, then it’s got to start happening quite soon. So, decision time.

Jon’s co-authors are both busy people, and I suspect that perhaps more good intentions have been shown than actual work done. And I further suspect that they suspect the same of Jon, which is perfectly reasonable as he has not said anything to the contrary. But the fact of the matter is that Jon’s ‘invisible’ illness means the job is almost certainly beyond him, and although it has been a painful process for him, he now thinks it would be a relief to drop out of the writing and focus instead on smaller and more manageable projects.

‘Everybody knows’ that Parkinson’s is all about shaking, right? Wrong. Jon has very little tremor (except when stressed). ‘Everyone’ also knows that Parkinson’s is a motor disease, right? Wrong again. Although Jon has motor symptoms (rigidity in particular), his main symptoms are to do with fatigue, poor concentration, inability to multi-task, and poor response to stress.

Because everyone can see that Jon is doing reasonably well physically, and expect the disease itself to be mainly physical, nobody actually understands how much it affects him and his life. Nobody can see how hard he has to work to concentrate enough not to have forgotten the beginning of an article by the time he gets to the end. Nobody knows see that it takes him the best part of two days to produce a blog post. Nobody realizes that even the most routine practical task becomes a major undertaking – for instance, he used to do all the vacuuming but has had to give up because rigidity means he can’t bend to clean under tables and beds, back pain means he needs a half-hour lie-down after vacuuming one room, poor balance means he can’t walk backwards (which I now realize is what one does when cleaning the floor), inability to multi-task means he can’t lift something with one hand and vacuum under it with the other, and fatigue means that if he nevertheless persisted he would completely wiped out for the day.

But he looks fine, so people think he is fine. When we see friends, Jon pops an extra pill so as to enjoy the evening more, so he usually acts fine too. And of course he only calls up his co-authors when his drugs are at maximum effect, so he performs just fine – at least for the duration of the phone call. There is no way that they can be expected to know that Jon’s invisible illness is stopping him from writing his chapters.

So he’s going to have to tell them. And they are going to have to believe him, even if they cannot actually see the issues that are keeping him from holding up his end of the writing, and perhaps think they would be doing him a favour by encouraging him to stay in the game. I didn’t realize how badly affected the woman with Alzheimer’s was until she said she was living in a care home. Maybe Jon has to point out that nobody receives permanent disability benefits unless they really are unable to do their job anymore.

(BTW, Jon sees all my posts before they are uploaded, as I see all his. He approves of what I've said here, and actually encouraged me to write it.)