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.
31 March 2010
19 March 2010
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.
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.
12 March 2010
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…
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…
04 March 2010
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.
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.)
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