MARIE: We’ve had a bit of a fraught couple of days, and are still far from settled. The trouble stems from an on-again/off-again argument we’ve been conducting for the last several weeks about what degree of freedom and flexibility Jon can safely allow himself with his medication. The technical term is compliance, which means a patient's adherence to a recommended course of treatment.
Jon wants to be able to take his L-dopa and Ritalin when he feels the need, including splitting doses into several smaller portions and/or adding extra doses, rather than having to adhere to the schedules set in collaboration with the neurologist and the psychiatrist. Jon says that if he waits with the next dose until he goes OFF, then not only does he feel pretty awful, it also takes him longer to get back ON again afterwards.
I, on the other hand, feel that while some flexibility is both reasonable and desirable, this needs to be managed within a safe framework, preferably one set out by the prescribing doctors. While the neurologist is always happy to discuss and adjust Jon’s medication, she has said that she prefers him not to experiment on his own (but he does so anyway). And the psychiatrist has set up some quite wide, but very clear guidelines within which Jon can be flexible (which he only partially observes). Jon thinks he is being perfectly reasonable, while I think he is out of control.
The trouble is that I have no idea how problematic it is when Jon doesn’t comply with his prescribed doses and timings. I know that both L-dopa and Ritalin are strong drugs, but I don’t know if over-use or sloppy use can cause any lasting problems. Is Jon being a bit careless (like going for a winter walk without a hat) or is he being reckless (like riding a motorbike without a helmet)? And if the latter, is that any of my business?
There, I suppose, is the real heart of the matter. Jon has come close to drug abuse before, partly because the drugs themselves were addling his mind, so I feel it would be mega-negligent if I didn’t react now that I see the same patterns of behaviour repeating themselves (plus, if something goes wrong, I will suffer for it too). But are they really the same patterns, or am I projecting the past on to the future? I wish our psychologist wasn’t on holiday …
19 April 2010
11 April 2010
A place to call home
MARIE: We’ve just been to inspect a possible new home for the second time (on a lightening quick trip, so don’t nobody get upset that we didn’t pop round). On the surface of it, this house may not look terribly exciting – a 1960s bungalow surrounded by older and more characterful homes, with two good-sized reception rooms but some rather small bedrooms, a bathroom about which the less said the better, and a very 70s sauna-cum-double shower arrangement in the basement.
But it answers (almost) all our very specific and unusual requirements. We are trying to be future proof here, that is trying to find a home that suits us now, and that will continue to suit us if/when Jon gets worse – and a home in which it is possible to have a pleasant life even if quite house-bound. That rules out the vast majority of houses, and when you then add my mad idea that I must have an oversized garden in which to grow raspberries and eggs, the selection really narrows down.
These are our requirements:
- Preferably a bungalow as stairs may soon become difficult for Jon (and if not a bungalow, then a house with a bedroom and full bathroom on the ground floor).
- Ideally as much as five bedrooms as Jon and I can no longer share due to his REM sleep disorder, and we each would like a smaller bedroom to use as a study as he now only works at home and I will increasingly have to do the same. Plus we would like a guest room as we will be living quite far from family.
- A large kitchen where Jon will not get “stuck” in the corners, and which can be adapted for drawers instead of cupboards (as bending down is getting difficult).
- A bathroom with a large shower cubicle big enough for Jon plus stool or Jon plus helper. Importantly, there must be no high edge to get into the cubicle. Also, ideally room to fit a urinal as Jon’s aim is deteriorating.
- A heating system that requires minimum input (many properties we have seen have had pellet burners which are economical and verging on sustainable, but which require regular topping up from heavy bags of wood pellets).
- Location not too far from the nearest neighbour to avoid isolation – e.g. if I am away and Jon needs urgent help. Ideally also with some kind of shop in walking or triking distance.
- A good condition that does not require much in the way of DIY which is now mostly beyond Jon and which was never in my reach in the first place. This means we are wary of older properties.
- Because of our limited future income from benefits, ideally something we can afford to buy without a mortgage and that does not cost a fortune to insure, heat or pay tax on.
- And then we want a very large garden, good outbuildings, easy access to the capital which holds most of our local social life and the national PD centre of excellence, and no road noise.
This somewhat uninspiring 60s bungalow seems to tick all these many boxes, plus has fantastic views of the sea and nearby islands (as you can see). We liked it when we first saw it under a blanket of snow, and now that we have seen it with the garden and surroundings revealed, we like it very much. There is still a structural report to be obtained, estimates on a new bathroom to be collected, the price to be negotiated, and the small matter of selling our current house. But I wouldn’t be at all surprised if this is where we end up.
But it answers (almost) all our very specific and unusual requirements. We are trying to be future proof here, that is trying to find a home that suits us now, and that will continue to suit us if/when Jon gets worse – and a home in which it is possible to have a pleasant life even if quite house-bound. That rules out the vast majority of houses, and when you then add my mad idea that I must have an oversized garden in which to grow raspberries and eggs, the selection really narrows down.
These are our requirements:
- Preferably a bungalow as stairs may soon become difficult for Jon (and if not a bungalow, then a house with a bedroom and full bathroom on the ground floor).
- Ideally as much as five bedrooms as Jon and I can no longer share due to his REM sleep disorder, and we each would like a smaller bedroom to use as a study as he now only works at home and I will increasingly have to do the same. Plus we would like a guest room as we will be living quite far from family.
- A large kitchen where Jon will not get “stuck” in the corners, and which can be adapted for drawers instead of cupboards (as bending down is getting difficult).
- A bathroom with a large shower cubicle big enough for Jon plus stool or Jon plus helper. Importantly, there must be no high edge to get into the cubicle. Also, ideally room to fit a urinal as Jon’s aim is deteriorating.
- A heating system that requires minimum input (many properties we have seen have had pellet burners which are economical and verging on sustainable, but which require regular topping up from heavy bags of wood pellets).
- Location not too far from the nearest neighbour to avoid isolation – e.g. if I am away and Jon needs urgent help. Ideally also with some kind of shop in walking or triking distance.
- A good condition that does not require much in the way of DIY which is now mostly beyond Jon and which was never in my reach in the first place. This means we are wary of older properties.
- Because of our limited future income from benefits, ideally something we can afford to buy without a mortgage and that does not cost a fortune to insure, heat or pay tax on.
- And then we want a very large garden, good outbuildings, easy access to the capital which holds most of our local social life and the national PD centre of excellence, and no road noise.
This somewhat uninspiring 60s bungalow seems to tick all these many boxes, plus has fantastic views of the sea and nearby islands (as you can see). We liked it when we first saw it under a blanket of snow, and now that we have seen it with the garden and surroundings revealed, we like it very much. There is still a structural report to be obtained, estimates on a new bathroom to be collected, the price to be negotiated, and the small matter of selling our current house. But I wouldn’t be at all surprised if this is where we end up.03 April 2010
Feeling good
JON: I mentioned a while ago that I had added a “hit counter” to this blog and as you can see from the map below, our fame begins to spread far and wide. Since January we have had 160 unique hits (that is 160 different people) of which about 90% have made return visits – which seems fairly good to me. So thanks for reading the blog, it makes a big difference to know that there is someone out there who likes it enough to spend time on it (repeatedly).
Last week, Marie and I went on separate trips, hers involved working for a living, while mine involved having a good time. And much to my amazement I did. At home I get very, very tired, sometimes as early as 8 pm, and am regularly in bed by 9 pm. On this trip, however, I stayed up past midnight and woke at my normal 7:00 – even better, I woke with no hangover.
I’m not entirely sure what I was doing right. At the first sign of fatigue, I gave myself booster doses of L-dopa (in half tab increments) and added an extra Ritalin tablet per day. In addition to the drugs, I drank beer. Not in excess – less than a pint per hour, but that’s still much more than I’ve had in a long time.
So the question is, what was it that made me feel so good? Just the fact of seeing old friends (and having a very good time)? Increasing the dosage of L-dopa? Increasing the Ritalin? Drinking beer? My guess is that it was a combination of factors. This is clearly an experiment that needs to be repeated under completely uncontrolled conditions, so I am already thinking about my next trip.
Last week, Marie and I went on separate trips, hers involved working for a living, while mine involved having a good time. And much to my amazement I did. At home I get very, very tired, sometimes as early as 8 pm, and am regularly in bed by 9 pm. On this trip, however, I stayed up past midnight and woke at my normal 7:00 – even better, I woke with no hangover.I’m not entirely sure what I was doing right. At the first sign of fatigue, I gave myself booster doses of L-dopa (in half tab increments) and added an extra Ritalin tablet per day. In addition to the drugs, I drank beer. Not in excess – less than a pint per hour, but that’s still much more than I’ve had in a long time.
So the question is, what was it that made me feel so good? Just the fact of seeing old friends (and having a very good time)? Increasing the dosage of L-dopa? Increasing the Ritalin? Drinking beer? My guess is that it was a combination of factors. This is clearly an experiment that needs to be repeated under completely uncontrolled conditions, so I am already thinking about my next trip.
31 March 2010
At the airport
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.
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.
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.
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