Old year, new year

MARIE: The 1st of January is a day for looking back at the past year and forwards to the new. Not sure that’s what one really wants to do with Parkinson’s and dementia in the mix, because what will you see in the past year but deterioration, and what can you look forward to but more of the same?

 

Nevertheless, the past year did include some high points, like Jon’s 60^th birthday in April when the whole family came over from the UK for an elaborate two-week celebration. He had a fantastic time and enjoyed seeing them all together, even if he did find all the activity rather challenging. My 50^th birthday in August was a shorter celebration but with far more people, so by common consent Jon opted out – which was the right decision, but sad nonetheless.

 

2013 was also The Year of the Pump, in that Jon got on the duodopa just over a year ago. It’s turned out to be more work to maintain the pump than we expected, and to be honest the symptom control is not as great as we had hoped, but all in all Jon finds the duodopa is still vastly preferable to his old oral drugs. With the latest adjustments to dosages and the latest addition of nighttime nursing services, we seem to be in reasonably calm waters Parky-wise – although rather sadly, travel has become harder now that we have come to rely on the night nurses.

 

For me, 2013 was The Year of the Book, because I spent much of the spring giving talks about the anthology of carer stories I edited for the Danish Parkinson’s association, and because I got stuck into the writing of my next book, which aims to be a collection of practical advice for carers. At the same time, I have become increasingly frustrated with the fragmented nature of my voluntary work, so have decided to ditch a number of small engagements in the new year and gather my energy into a big push in one major engagement – more of which later.

 

I expect 2014 will also be the year when we have to look seriously at our living arrangements. There are still opportunities for adjustments at home, but sooner or later we'll reach the point where it's better for both of us if Jon moves to a care center. I must admit I sometimes dream of being free from the million small and large care tasks and being free again to simply enjoy spending time with Jon, maybe going for a little walk, maybe just holding hands on the sofa while we listen to the radio. Simple things that are surprisingly hard when you feel snowed under with the practical demands of the day.

 

But I dread the decision. I know carers who waited too long, who wore themselves down to the point where they were unable to care properly at the end. I don’t want that for us, but nor do I want to end our life together too soon. I know it'll have to be my decision in the end, because the dementia stops Jon from reflecting rationally on the situation. Bloody hell, but it’s a hard one!

 

So all in all, the new year sees me in rather subdued mood (Jon not so much, he's got his happy pills working wonders). There are challenges ahead, but we are fortunate to have good support and – very importantly – understanding from our family on both sides of the water, so whatever comes I’m sure we’ll manage somehow.

The luck of the draw

MARIE: I’ve done much writing over the last month or so, but none for the blog, so it’s about time. Apart from a few grant applications to pay for local Parky events, it’s mostly been a matter of writing my chapter for the edited book of carer stories that I am working on, and writing a speech that I am giving to various politicians holding the health of the health service to ransom.

It’s been a bit schizophrenic in that, while I am presenting our own story in both cases, I’m going at it from rather different angles. In the carer book, I get very personal and perhaps at times a little intense, but I try to focus on how I or we got through various challenges that PD threw at us, how we have coped and continue to cope (with stuff we’ve also talked about here). In the speech, however, I am less personal and more general, and I am far less focused on what you can do yourself to cope and far more focused on how a lack of support services in this and that area makes one’s life harder than it has to be. It’s kind of a relief to come back here to the blog where you know everything about us already.

But the writing also made me realize how immensely fortunate Jon and I actually are, all things considered. In the speech, I go on about how I have hardly any income because I am in excellent health yet am unable to find a job because of chronic illness, and how this wretched country should have something like the carer’s allowance in Britain (only preferably at a rather less offensive rate), in recognition of the fact that forcing a carer to go out to work for purely financial reasons can have a seriously negative impact on the quality of life of both the carer and the Parky.

Just a few days after drafting that text, I met a couple in their late fifties where the husband has had Parkinson’s for twenty-some years. He worked for as long as he could, and she has worked fulltime throughout, in what sounded like fairly high-pressure positions. Now at last they are nearing the age when she can take early retirement – but it comes too late. He is now so poorly that there seems very little left of their marriage except a patient-nurse relationship.

So when I say that I can’t work because of Jon’s PD, I am clearly being a complete whimp. Other people have to work through far worse. The carer must be permanently stressed out and overworked, constantly feeling while at work that she should be at home caring for hubby, and vice versa. And the Parky must feel abandoned to an ever-changing parade of care staff, much of the time home alone feeling bored or in discomfort.

Of course we have also met lots of couples where the ‘carer’ is too old or too ill themselves to be able to take the necessary care tasks in their stride. Sure, you can get help to come mornings and evenings to help with personal hygiene, getting dressed and undressed, getting in and out of bed – but who do you call when your Parky takes a fall on the way to the loo at 3 am in the morning? What does the 80-year-old wife with high blood pressure and osteoporosis do then? Are you supposed to just fetch a cushion and blanket and leave him there till morning? Or do you knock yourslef trying to get him up and back into bed?

I am realising utterly fortunate Jon and I are that I am young enough and well enough to look after him with ease, and that he is sufficiently well pensioned to enable me to stay at home and do so. It’s a nice bonus that this also leaves me time to write about it.

Safe hands

MARIE: Today Jon had his second neurology appointment after moving to Denmark. You may recall that at his first appointment, the neurologist concluded that he is a complicated case and decided to send him Upstairs. Not to meet celestial management, but to see the real experts at the day hospital specializing in Parkinson’s.

So Jon was seen today by one of the very top people in the country when it comes to PD. We recently heard her speak at a research meeting arranged by the Parkinson’s association and were greatly impressed. I had hoped, but not expected, to see her again so am very pleased indeed that she will be Jon’s neurologist. Okay, pleased and also concerned, because this evidently means that Jon really is a complicated case. Which is shitty, but having it confirmed doesn’t change the facts of his condition. The main thing is that we both feel confident that if anyone can sort Jon out, she’s the one.

We have returned home with yet more medication changes, and are now waiting for Jon to be called in for a new MRI scan (his last was in 2007 and was used to diagnose the PD) and a neuro-psychiatric evaluation because Jon feels that cognitive changes are the most bothersome symptoms right now – that includes his poor short-term memory, difficulty concentrating, reduced analytical abilities, and trouble finding the right words (spoken and written, which is why I tend to write more blog posts these days).

In terms of the medication changes, we had been trying hard to discern a pattern to Jon’s day and match his medication intake to his wellbeing at different times. Without success as his condition seems to fluctuate pretty randomly, to the extent that at times he has symptoms of Parkinson’s, i.e. too little dopamine in the brain, at the exact same time as he has dyskinesias, which indicate too much dopamine in the brain.

We just couldn’t understand it. But the neurologist could: Jon’s recent DAT scan shows that one side of his brain is more affected by the disease than the other, so he’s been getting too much dopa on one side and not enough on the other! This is related to the quick release tablets he’s been taking, so the plan is to shift him almost entirely on to normal release tablets which should even out his condition considerably.

I so hope that works, because I don’t mind telling you these last few weeks have been pretty miserable. And wouldn’t it be wonderful if there’s also something that can be done to treat the cognitive problems?

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.”

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.