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!
14 June 2009
07 June 2009
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.
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.
01 June 2009
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.
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.
24 May 2009
Why me?
In some of the blogs we follow and in several of the autobiographies we have read, people with PD struggle with the question ‘Why me? What did I do to deserve this? Is this some kind of punishment or test?’ There is clearly a religious element to these questions, an idea of a supreme will or organizing principle that ensures we each get what is coming to us. The faithful may leap intellectual hurdles and engage in logical contortions in order to explain why their god would put them through something like Parkinson’s, and yet come up with an answer that neither satisfies nor enlightens.
Jon and I, though, are strict atheists. We are quite convinced there is no higher intelligence up there (or, indeed, down there) which takes a particular interest in us. Jon hasn’t got Parkinson’s because he’s been a bad boy, and I haven’t got a sick husband because my soul is ripe for trial by fire. So why Jon? Because shit happens, and that is essentially all there is to it.
However, there is also the scientific question ‘why me?’ which has a hard time with the idea of idiopathic Parkinson’s, i.e. the version of the disease that is not hereditary or caused by drugs. Parkinson’s without a cause? Come off it. Of course there’s a cause, we just haven’t discovered it yet. There is a great deal of research going into discovering what causes Parkinson’s-without-a-cause, with various genes being singled out as possible areas of weakness, and various chemicals suspected of being contributory triggers. This is evidently highly complicated stuff and the answer likely to be equally complex, an extreme example of Occam’s lady shaver.
A scientist in a programme we saw explained that he and his colleagues think the answer involves some people being genetically vulnerable to developing Parkinson’s, but that they only actually become ill if the disease is sparked off by some outside influence – in other words, he said, ‘genes load the gun, but environment pulls the trigger’. Finding out what causes Parkinson’s would evidently be immensely helpful in the effort to prevent or cure the disease, instead of being stuck with just treating it as we are now.
Scientists are, in one important sense at least, professional optimists. They have to find financial support for their research projects by convincing superiors and research councils and charitable foundations that their work will lead to significant advances towards some desirable goal. I suspect this could be the real reason that every book about Parkinson’s we have ever read, no matter when it was published, predicts that we are only about five years away from a major breakthrough in treatment or cure. Sooner or later it will be true. Wouldn’t it be great if that turns out to be 4 ½ years ago?
Jon and I, though, are strict atheists. We are quite convinced there is no higher intelligence up there (or, indeed, down there) which takes a particular interest in us. Jon hasn’t got Parkinson’s because he’s been a bad boy, and I haven’t got a sick husband because my soul is ripe for trial by fire. So why Jon? Because shit happens, and that is essentially all there is to it.
However, there is also the scientific question ‘why me?’ which has a hard time with the idea of idiopathic Parkinson’s, i.e. the version of the disease that is not hereditary or caused by drugs. Parkinson’s without a cause? Come off it. Of course there’s a cause, we just haven’t discovered it yet. There is a great deal of research going into discovering what causes Parkinson’s-without-a-cause, with various genes being singled out as possible areas of weakness, and various chemicals suspected of being contributory triggers. This is evidently highly complicated stuff and the answer likely to be equally complex, an extreme example of Occam’s lady shaver.
A scientist in a programme we saw explained that he and his colleagues think the answer involves some people being genetically vulnerable to developing Parkinson’s, but that they only actually become ill if the disease is sparked off by some outside influence – in other words, he said, ‘genes load the gun, but environment pulls the trigger’. Finding out what causes Parkinson’s would evidently be immensely helpful in the effort to prevent or cure the disease, instead of being stuck with just treating it as we are now.
Scientists are, in one important sense at least, professional optimists. They have to find financial support for their research projects by convincing superiors and research councils and charitable foundations that their work will lead to significant advances towards some desirable goal. I suspect this could be the real reason that every book about Parkinson’s we have ever read, no matter when it was published, predicts that we are only about five years away from a major breakthrough in treatment or cure. Sooner or later it will be true. Wouldn’t it be great if that turns out to be 4 ½ years ago?
16 May 2009
Time and its uses
JON:
Chronically sick people have a habit of saying that there are good days and bad days. Well, I’m having a bad month. I have upper and lower back pain, my knees are stiffening up, my mood is – well, you can see that from what I’ve written: my mood is subterranean. I just want a day off, one day free from aches and pains, one day when my brain works, when I can sit down comfortably and with ease. But it seems that is not going to happen, ever.
I suppose it comes as no surprise that pain is, well, it’s a pain. It’s nowhere near the severity it was prior to getting diagnosed, and my painkillers are fairly effective, but I do find myself living from pill to pill. I feel crap for an hour before pill time as the previous dose wears off, and for an hour after taking the pills while I wait for them to take effect. In between, I’m a bit spaced out – literally at the moment because I’m reading SPACE, a good thick novel about the space race.
And then there is the feeling of being pathetic. Last year Marie wrote a book, this year she has organized its publication, book launch, promotion etc. Also kept her business afloat, worked for her freelance clients, washed the floors, cooked, cleaned, etc. And what have I achieved this year? Bugger all, is what. A couple of blogs (though written mainly by Marie) and depressingly little else. How much of this is due to me being a lazy sod, and how much can I lay at the feet of the Parkinson’s gods (intentionally very small g). Well, depression and apathy are common PD symptoms, while being a lazy sod is down to my defective chromosome (laziness comes with the genitals). But I didn’t use to be lazy. OK, I never did much around the house, but I did do “stuff”, and I don’t like doing “nothing” instead.
I read a blog recently (PD and ME) where the blogger wrote: “I don’t want to play any more, it’s getting boring, someone hurry up and find a cure”. I couldn’t agree more.
MARIE:
If you want something done, ask a busy person, they say. I have become a busy person, and so am getting more and more done each day. Work is going well in the sense of being demanding of my time and attention (which is how I like it), more and more of the housework falls on me, and I also insist on continuing with the things I enjoy – my gardening in particular.
It’s as if Jon and I are on two opposite trajectories of time, his getting ever slower and mine ever faster. Which at times makes him feel feeble and pathetic, and makes me feel rushed and hard-done-by. I’m not sure that there is a solution to that, beyond just getting used to it. And making sure to take the time (on my part) and make the effort (on Jon’s part) to meet in the middle often and with affection.
What I find hard to bear is when he is down in the dumps, as he has been recently. I so want, in my practical, annoying, bustling-around-and-sorting-out way to do something to make it better. Make a hot drink, massage a shoulder, fetch a plaster. Sadly, Parkinson’s does not allow for quick and easy fixes, just one long process of acceptance – which, I suppose, is really quite like life itself.
Chronically sick people have a habit of saying that there are good days and bad days. Well, I’m having a bad month. I have upper and lower back pain, my knees are stiffening up, my mood is – well, you can see that from what I’ve written: my mood is subterranean. I just want a day off, one day free from aches and pains, one day when my brain works, when I can sit down comfortably and with ease. But it seems that is not going to happen, ever.
I suppose it comes as no surprise that pain is, well, it’s a pain. It’s nowhere near the severity it was prior to getting diagnosed, and my painkillers are fairly effective, but I do find myself living from pill to pill. I feel crap for an hour before pill time as the previous dose wears off, and for an hour after taking the pills while I wait for them to take effect. In between, I’m a bit spaced out – literally at the moment because I’m reading SPACE, a good thick novel about the space race.
And then there is the feeling of being pathetic. Last year Marie wrote a book, this year she has organized its publication, book launch, promotion etc. Also kept her business afloat, worked for her freelance clients, washed the floors, cooked, cleaned, etc. And what have I achieved this year? Bugger all, is what. A couple of blogs (though written mainly by Marie) and depressingly little else. How much of this is due to me being a lazy sod, and how much can I lay at the feet of the Parkinson’s gods (intentionally very small g). Well, depression and apathy are common PD symptoms, while being a lazy sod is down to my defective chromosome (laziness comes with the genitals). But I didn’t use to be lazy. OK, I never did much around the house, but I did do “stuff”, and I don’t like doing “nothing” instead.
I read a blog recently (PD and ME) where the blogger wrote: “I don’t want to play any more, it’s getting boring, someone hurry up and find a cure”. I couldn’t agree more.
MARIE:
If you want something done, ask a busy person, they say. I have become a busy person, and so am getting more and more done each day. Work is going well in the sense of being demanding of my time and attention (which is how I like it), more and more of the housework falls on me, and I also insist on continuing with the things I enjoy – my gardening in particular.
It’s as if Jon and I are on two opposite trajectories of time, his getting ever slower and mine ever faster. Which at times makes him feel feeble and pathetic, and makes me feel rushed and hard-done-by. I’m not sure that there is a solution to that, beyond just getting used to it. And making sure to take the time (on my part) and make the effort (on Jon’s part) to meet in the middle often and with affection.
What I find hard to bear is when he is down in the dumps, as he has been recently. I so want, in my practical, annoying, bustling-around-and-sorting-out way to do something to make it better. Make a hot drink, massage a shoulder, fetch a plaster. Sadly, Parkinson’s does not allow for quick and easy fixes, just one long process of acceptance – which, I suppose, is really quite like life itself.
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