JON: Marie wrote last week that we have had a minor domestic argument. We have more or less kissed and made-up, or more accurately we have agreed to disagree for now. So at the moment all is well, and long may that last.
Other good news is that I have been invited to chair a session at a conference on oral processing (yes, that is just as disgusting as it sounds). I will get to see lots of old friendly faces and talk about teeth, chewing, and swallowing into the small hours. This will be the first time I’ve been session chair, but I’m not worried, it mainly involves sitting through a couple of lectures without falling asleep, making sure the speakers keep to time, and handling the Q&A afterwards. I’ll also have to keep a few questions up my sleeve to fill in any embarrassing silences. Naturally, I plan to have a pocket full of assorted pills to cope with unexpected shakes, twitches or other problems.
I’ve also been in touch with some of my old colleagues, or rather I was called in to fix a piece of equipment (that I’d built) which had stopped working. I spent several hours trying to diagnose the problem and finally managed to make a diagnosis: it’s broken. Which was possibly not a lot help, but I was flattered to have been asked for my opinion, and did not feel too bad about the outcome as no-one else could fix it either.
Showing posts with label fighting. Show all posts
Showing posts with label fighting. Show all posts
25 April 2010
19 April 2010
Compliance
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 …
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 …
29 September 2008
Mind over matter
What we really need to talk about this week is emotions and stuff, which being a bit girlie is better left to the wife who thus gets her first chance to speak directly. And instead of blogging today, Jon gets a well-earned lie-down after huffing and puffing and bitterly complaining his way through a new set of physiotherapy exercises.
The thing is (in the interest of the kind of honesty we have promised in this blog): this past week we have expended an unreasonable amount of emotional energy on obstructing and frustrating each other. It is very natural that this should happen from time to time, seeing that we live under some considerable strain both from the direct effects of Parkinson's and from our fears for how the disease will affect and limit the future we had hoped for. But being natural and understandable doesn’t make it any easier to deal with.
I of course feel that I should be at all times the strong, capable, patient, loving, encouraging helpmeet Jon needs, and I suspect Jon thinks that in return he should be stoic, calm, supportive, resourceful, even fun in a sedentary sort of way. Easy pedestals to topple off. And we are each pressed also by factors outside our relationship that make it hard to keep our elevated balancing acts going. Jon is having an understandably hard time dealing with the loss of status and, more importantly, purpose and structure that comes from being unable to do the work that has formed the centre of his being for as long as I have known him. Meanwhile, I am feeling torn between too many conflicting demands of ramping up my breadwinning activities, acting as carer and enabler to Jon, and managing all the household chores in my spare time.
So the masks slip and our basic, very different, natures shine through. I have a tendency to react to all problems – fear, pressure, uncertainty – with anger, while Jon’s first instinct is to retreat into near-apathy while he waits for whatever hurts or troubles him to subside. So while I am spitting nails downstairs, he is hiding upstairs behind a blank computer monitor, neither of us able to help the other, each trapped in our own private bubble of misery. Normal people – like we were too a few years ago – will ask themselves in the heat of the moment if this is really how they want to spend the rest of their lives, and recklessly sling out threats that “if you’re going to be like that, then I’m leaving”. I know I’ve said it in the past, and I’d very surprised if Jon hasn't thought it. We’ve never meant it for long, but the sheer freedom of being allowed a moment’s angry dream of independence – that too is now lost to Parkinson’s. No exit.
As we’ve said in an earlier post, it helps to talk. We have people who care about us, and although most of them are international borders away, distance fortunately means little today (though hugs are, admittedly, not quite the same by e-mail). We also have very good friends who are unfortunate enough to understand only too well what sort of issues we are struggling with. This mixture of empathy and understanding is immensely helpful, but there is a limit to how much one can lay on friends and family. Jon and I have discussed it before, in the calm waters after one of our (okay, my) storms, but this time we mean it. This whole emotional mess is more than we can really deal with on our own, and since deal with it we must, we will now look to a therapist for help. With luck we will come away with some useful nuggets of self-knowledge and a few tools to help us keep things calm(er).
Another option is one of the self-help groups that all Parkinson’s associations seem to organize. We are a bit language-challenged – all the fault of the Dutch who are so good at English that we foreigners have little incentive to learn to speak their language – but I will at least have a go at finding a group. Jon is less keen on that idea, but could perhaps be converted if it proves a success for me. Whichever way it turns out, it feels right that we should now take the time to focus on improving our emotional health too.
The thing is (in the interest of the kind of honesty we have promised in this blog): this past week we have expended an unreasonable amount of emotional energy on obstructing and frustrating each other. It is very natural that this should happen from time to time, seeing that we live under some considerable strain both from the direct effects of Parkinson's and from our fears for how the disease will affect and limit the future we had hoped for. But being natural and understandable doesn’t make it any easier to deal with.
I of course feel that I should be at all times the strong, capable, patient, loving, encouraging helpmeet Jon needs, and I suspect Jon thinks that in return he should be stoic, calm, supportive, resourceful, even fun in a sedentary sort of way. Easy pedestals to topple off. And we are each pressed also by factors outside our relationship that make it hard to keep our elevated balancing acts going. Jon is having an understandably hard time dealing with the loss of status and, more importantly, purpose and structure that comes from being unable to do the work that has formed the centre of his being for as long as I have known him. Meanwhile, I am feeling torn between too many conflicting demands of ramping up my breadwinning activities, acting as carer and enabler to Jon, and managing all the household chores in my spare time.
So the masks slip and our basic, very different, natures shine through. I have a tendency to react to all problems – fear, pressure, uncertainty – with anger, while Jon’s first instinct is to retreat into near-apathy while he waits for whatever hurts or troubles him to subside. So while I am spitting nails downstairs, he is hiding upstairs behind a blank computer monitor, neither of us able to help the other, each trapped in our own private bubble of misery. Normal people – like we were too a few years ago – will ask themselves in the heat of the moment if this is really how they want to spend the rest of their lives, and recklessly sling out threats that “if you’re going to be like that, then I’m leaving”. I know I’ve said it in the past, and I’d very surprised if Jon hasn't thought it. We’ve never meant it for long, but the sheer freedom of being allowed a moment’s angry dream of independence – that too is now lost to Parkinson’s. No exit.
As we’ve said in an earlier post, it helps to talk. We have people who care about us, and although most of them are international borders away, distance fortunately means little today (though hugs are, admittedly, not quite the same by e-mail). We also have very good friends who are unfortunate enough to understand only too well what sort of issues we are struggling with. This mixture of empathy and understanding is immensely helpful, but there is a limit to how much one can lay on friends and family. Jon and I have discussed it before, in the calm waters after one of our (okay, my) storms, but this time we mean it. This whole emotional mess is more than we can really deal with on our own, and since deal with it we must, we will now look to a therapist for help. With luck we will come away with some useful nuggets of self-knowledge and a few tools to help us keep things calm(er).
Another option is one of the self-help groups that all Parkinson’s associations seem to organize. We are a bit language-challenged – all the fault of the Dutch who are so good at English that we foreigners have little incentive to learn to speak their language – but I will at least have a go at finding a group. Jon is less keen on that idea, but could perhaps be converted if it proves a success for me. Whichever way it turns out, it feels right that we should now take the time to focus on improving our emotional health too.
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