Experts, experts everywhere

A few days ago Jon had the first of his three appointments with the Parkinson centre who are doing a thorough review of his situation and treatment. First almost an hour with a coordinator who went through the various main problems Jon is experiencing and on this basis discussed with us which specialists it would be most helpful to see at the next appointment. We settled on a social worker to help clarify the situation surrounding work and pension, a speech therapist to assess speech and also review issues Jon is beginning to have with excess saliva, a psychiatrist to weigh in on whether Jon’s mood is perfectly reasonable in view of his health or whether he could be cheered up with chemicals or therapy, an ergotherapist to further discuss the work situation and coping strategies both at work and at home, and lastly a dietician to explain to us how to drop some weight (as if we didn’t know, but it could still be interesting to hear what she has to say).

Next came three quarters of an hour with a neurologist who confirmed the diagnosis, discussed its progression and reviewed Jon’s medication. The first major thing to come out of that was a new medication strategy to counter issues Jon has had with the effect of the medication taking a lo-o-ong time to kick in and not working at full effect for very long. He now has instead some quick release medication (Madopar dispers) and it already appears that this is a clear improvement. It will probably also be necessary to up either the dosage or the frequency (we think the latter might be best), but as the neurologist said, we should only change one thing at a time so we can see what the effect is before making the next change. (Yes well, the neurologist probably feels fine all day so may find methodical patience easier than Jon does.)

The other big thing was that we discussed what Jon and I thought were his memory problems, which have concerned us greatly since it’s one thing to get shaky and clumsy, but quite another for Jon to start losing his cognitive muscle. There have been two distinct issues: Jon is getting slower at retrieving stored information (as in TV quizzes where he knows the answer but can’t search the memory files quickly enough), and we also feared that his short-term memory was going, which could be the start of something really very nasty. But the neurologist said he thought there was very little likelihood that Jon’s problems are related to the quality of his memory. PD slows down not just the body but also the brain, so the information retrieval issues are to be expected but do not signify problems with the quality of Jon’s memory. And nor are the short-term memory problems a question of quality but much more likely to be a case of wandering attention, which is apparently also common in Parkinson’s (partly because of difficulty with multi-tasking). I find that the most enormous relief. Defective memory is scary, but wandering attention is easily dealt with. I now know not to expect Jon to remember what we have talked about on a walk unless we stop walking and concentrate on talking, and I know that if I want to be sure he stores something in memory I should simply ask him to repeat it thus confirming that he was paying attention. Easy-peasy.

The last appointment this week was with a physiotherapist. Jon has been seeing a one of those weekly for quite a while with little obvious effect – but since we cannot know whether perhaps she has been busy keeping deterioration at bay, there has been no talk of quitting. To be honest, Jon has been somewhat resistant to taking advice. For instance, when shown a ‘better and easier’ way of getting in and out of the car, he has tried a few times but then soon reverted to his own laborious method. The physiotherapist at the Parkinson Centre demonstrated exactly the same method but with one huge difference: he explained why this is a better and easier way for those with Parkinson’s – to do with breaking complex movements into smaller chunks to get around the difficulties with multi-tasking. Jon has always been immensely skeptical of unsubstantiated claims that something is ‘better’ (honestly, it’s the sort of thing a homeopath might say), so I am hoping perhaps the reasoned explanations will be the missing link that makes him take his normal physiotherapist’s advice more seriously.

The whole day was really brilliant, everyone was impressively professional and insightful and helpful, and we just can’t wait to go back for more next week.

Profit and loss

This blog regularly talks about losses – of function, of work, of certainties, etc. – but Parkinson’s also gives back in some round-about ways. There is this general idea that bad things also bring some good because their victims gain a new and better perspective on life, generally involving a greater presence in the moment and an enhanced appreciation of the small pleasures of daily life. At two extremes:

From the blog PD and me (www.not-likely.co.uk/blog)
‘I can live with the PD, it makes me realise everything I have to be grateful for. It took me a long time to accept my PD but it has made me realise I have so much that I should be grateful for and that we often take life way too seriously, my PD has grounded me with a bump and made me look around and take stock of things and I'm glad its happened.’

From the book C – because cowards get cancer too by John Diamond who chronicled his treatment and deterioration from the oral cancer that ended up killing him:
'I have learned a lot about myself in nine months, and a lot about those around me. Much of that knowledge is useful, liberating even. Equally much of it is banal stuff which I should have known anyway had I bothered to think about it. But the bad has outweighed the good a millionfold … It shouldn’t be like this. That I can face the fact that it is like this is, I suppose, something. But what a bloody meagre something it is.'

Jon and I fit somewhere on that great continuum from someone who has embraced his incurable disease to someone who rails against a disease that has a very good cure rate (only not in his particular case). The disease has enabled us to spend much more time together, which on most days we would count as a good thing. And it has most certainly refocused us towards the here and now.

We cannot know how Jon’s particular instance of the disease will progress, all we can know is that it will indeed progress. So we try not to put good things off until next year, until tomorrow, until after we’ve done the laundry. It doesn’t always work – it is, after all, quite useful to have clean socks – but is certainly very different from before PD. Likewise, I think we take more pleasure from the things Jon can do, mainly in terms of physical feats and general endurance, simply because these things are now not to be taken for granted in perpetuity.

Parkinson’s may also be giving another ‘gift’. A while ago Jon’s favourite author Terry Pratchett did a couple of BBC programmes about his newly diagnosed Alzheimer’s disease. We were surprised that Pratchett chose to visit the Alzheimer’s section in a nursing home – I would have thought this would be a frightening demonstration of the likely end-point of his journey. But, as he pointed out, Alzheimer’s by its very nature both gives and takes. As your mental faculties fade, so does any awareness that you have a problem (although I expect this still leaves a terrifying middle period when sufferers realize in their clear moments that they are slowly but surely losing it).

Well, in Parkinson’s the blessing in heavy disguise may be the apathy which, according to another book we recently read (Brain and Behavior by Joseph Friedman), affects a large proportion of PD sufferers and makes them not really care one way or another about the gradual loss of functions. Is apathy caused directly by the disease, Friedman wonders, or is it a common coping strategy? Either way, while apathy may make it easier for the person with Parkinson’s to get through the day, it is one of the hardest things for the relatives to deal with.

So I think we both really mean it quite literally when we tell people that Jon getting diagnosed with Parkinson’s was not exactly the best news we could get, but nor was it the worst.

Enough with the questions!

MARIE: We have just spent three jolly hours deciphering and responding to an 80 (eighty!) page questionnaire in Dutch about every aspect imaginable of Jon’s Parkinson’s. It sure is hard work being ill…

Seriously, though, this is a good thing. It is stage one of a thorough examination of the State of Jon which will be conducted over the next several weeks at a specialist Parkinson’s centre connected to the hospital he goes to. First you answer a million questions and solicit statements from all the different therapists involved (physio, psycho, the lot), then you (i.e. patient and partner, they insist on that) go to an appointment with a neurologist and a care coordinator where they go through your various answers and determine where there appear to be issues that need to be dealt with. Then an entire team of specialists are brought together to deal with these issues during a full day of consultations where you could be seen by physiotherapists, speech therapists, ergo-therapists, social workers, nurse-practitioners and any number of other experts. And lastly, there is another neurology appointment where recommendations are made and plans put forward for future treatments.

It’s crappy bad luck that Jon has got Parkinson’s, but if you’re going to get iot, what amazingly good luck to get it in Holland! Again and again we are bowled over by the efficiency, speed and thoroughness with which the health service works here.

So what do they ask about, then? Well, everything. For instance: have you ever fallen over? If so, how often? Where? How hard? In which situations? Do you feel faint first? Are you conscious throughout? Do you do anything to stop it? Could you do anything to stop it? Are you afraid of falling over? How afraid? Is your partner afraid you will fall over? Does the fear of falling over stop you doing activities you enjoy? Which activities? Is that a problem for you? Do you want to talk to someone about it? – I expect that you begin to see how easy it is to ask 80 pages worth of questions and still stay relevant to the matter in hand.

And these were the easy questions that could be answered on the spot. More time consuming was finding the names, addresses, phone numbers and e-mail addresses of every health professional Jon has seen in connection with Parkinson’s, listing every medication he has ever taken with precise dosages and frequencies, and micro-recording his every activity for several days for a reflective diary. But I really do think this will turn out to be time well spent. Watch this space.

JON: Since my last whine the sun has come out and all is well. Well, perhaps not ‘all’ but certainly ‘most’... well, more than last time I blogged, at least. In fact I’m feeling much better than I was, the sciatica is easing, I can sit almost normally, and I have a choice which side to lie on Most likely the sciatica has little if anything to do with the Parkinson’s; chances are it is just wear and tear and this old(ish) body slowly crumbling.

The high spot of the week has been filling in the 80 page questionnaire, with lots of comprehensive list of symptoms – on some pages I got a BINGO! when I could tick all the boxes: yes, I’m stiff; yes, I’m constipated, yes, I’m shaky; etc. etc.

But there were also pages where I ticked only a few boxes, such as where they asked about problems with eating and appetite. These I assume are symptoms that are yet to manifest themselves. Oh joy. The guide to the questionnaire did say very firmly that not everyone gets every symptom and that one shouldn’t get worried about the length of the lists of symptoms. Do I believe that, though? Bah, humbug!

Name dropping

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

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

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

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

Purpose and pleasure

Jon has had a couple of busy days as his son and daughter-in-law have been here for a long weekend. I wouldn’t say that Jon was suddenly capable of astounding feats of physical fitness, but he certainly did better than I had expected. He is still battling with his sciatica (and of course the PD means he can’t physically do the sort of exercises that might help), but nevertheless traipsed around with us through a museum and several city centres and even over choice selections of nature. He also got up earlier and stayed awake later at night. Okay, it all cost him a few extra pills here and there, but he enjoyed himself. That doesn’t happen often enough in my book, and it is just great when it does.

It’s that whole issue which we have both written about before and will, I am sure, write about again: what is the purpose of getting up in the morning, and given the restrictions imposed by PD: what would be a pleasant way to spend the day. These are not easy questions on most days – but become quite obvious in the vicinity of children or grandchildren. Beyond that, there is still no answer.

I am happy to report, though, that Jon has stopped mainlining The West Wing. He made it to the end of the seventh season in record time and is now ambling through the earlier seasons at my rather less obsessive pace. No other TV-based addiction has taken its place, and good weather plus a recent book delivery from Amazon may well keep him unplugged for a bit. He also claims to have worked – in his newly uncluttered study – on the legendary book he is writing. Slow going, but so long as it moves forward there is hope.

Other people we know with chronic diseases, whether the sort that stops you working or ‘just’ the sort that permanently rearranges your hopes and dreams, say this is the hardest thing, To accept the disease, to come to terms with the limitations it imposes, and to find a way to still enjoy the life that is possible. It’s a work in progress.