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 …