JON: You’d think I’d be getting bored, stuck here in flatland with what appears to be very little to do, taking my very short walks and (when he lets me) stroking the cat.. But I seem to keep busy. A major activity is taking pills, I’m forever checking the clock and waiting for the next set of tablets to become due. In between bouts of drug taking, though, I’ve been developing ways of measuring my tremor, twitches, general Parkiness, and abnormal nocturnal activities.
I’ve been told that I have a tendency to go on a bit, so I’ll restrict myself to describing my latest big-boy toy. Some might call it a watch, but I call it a development and measurement system. The device has a 3-axis accelerometer, a pedometer, a voltage sensor, and it measures temperature, heart-rate, air pressure – oh, and tells the time. Best of all, it communicates via wi-fi with a laptop and is fully programmable.
Have I worked out how it functions? No. Have I even managed to set the time? No (but my son-in-law set it in moments – I’m starting to hate young people). Also supplied is a shed-load of software. My aim is to program the watch so I can use it to monitor my activities during that day and my behaviour (particularly during REM sleep) at night.
While I was working I would probably not have attempted anything as ambitious as this, although I might have employed someone to set it up for me Now time stretches out into the distant horizon, and spending a great deal of it playing with my toys kind of gives me a sense of purpose because it
a) might just work
b) maintains my sense of identity (I’m a scientist, damn it!)
LATER: I wrote the text above yesterday afternoon when I was ON. You can tell because it’s upbeat, the spelling is mostly correct and there was no shortage of ideas or logic. After dinner I started to feel bad and shortly after 9pm I gave in and went to bed. This morning I woke up still feeling bad, and only now at midday do I again feel anything close to normal. My back hurts, my joints hurt, even my hair hurts, and I find myself holding on to my head because it feels loose (I know that sounds odd, but it’s the closest I can get to a description).
Last week at the conference was great, though this week I seem to be paying rather heavily for it. But I’m big and strong and it was worth it. One theory that has been floating round the on-line PD community is that heat (and its been hot as Hades here) could make PD symptoms worse. I don’t know why, but it fits with the kind of week I’ve had. Even when I’ve been ON, I’ve been slow and clumsy, and when I’ve been OFF, well, it’s not been good. I’ve had bad weeks before and I’ll have them again, I’m just hoping that the weather cools down soon so I can get me some proper ON time again. The forecast is promising, as is the prospect of moving north soon.
Showing posts with label self-esteem. Show all posts
Showing posts with label self-esteem. Show all posts
26 July 2010
Measurements
21 November 2009
To do or not to do, that is the question
JON: It’s been an odd sort of a week. The good news is that the local authority has decided to pay for my grab pole – and not just for loan, as my occupational therapist had told me was most likely, but to have and to hold onto forever. Even better, it is proving very useful for getting into and out of bed. I suspect that I’m rather slower than the average Olympic athlete but I think I would now stand a decent chance of getting out of bed in case of a fire. Is there an Olympic getting-out-of-bed event?
Less good, I’ve been accused of becoming dull – ME! Who’d have thought it? OK, snoring on the couch whilst holding a book may not count as multi-tasking, but it is a pleasant way of passing the time. In my defense, it was a rather dull book, and I had at least got out of bed.
To try to become less boring, I have decided to take up my interest in photography again. I’ve been trying for some time to get pictures of fluids mixing, such as the swirling patterns created when you add milk to coffee. I’ve had a go using ambient light and with flashgun(s), but so far the perfect shot eludes me. So a quick trip to the local DIY store to buy halogen lights and a good rummage in my room to find suitable cables should soon see me sorted out soon. I think I might even be getting a little bit excited about the project. Watch this space.
MARIE: As the intelligent reader might have surmised, it was indeed I who accused Jon of becoming boring. All his pastimes are passive – reading, listening to the radio, watching TV. While they may be good books and intelligent programmes, I don’t think that’s enough to feed a mind. Particularly since much of it seems to go in one ear and out another so Jon often can’t actually remember enough detail to have a worthwhile conversation afterwards.
Jon’s lack of energy and lack of initiative has been a recurring subject in this blog. Our psychologist says these issues are common in Parkinson’s and has tried to give Jon / us various tools and ideas to overcome the inertia, but to little effect. He now believes medication may be the way forward, so in two weeks’ time we are seeing a psychiatrist colleague of the psychologist (who cannot himself prescribe drugs).
I hope this will help. I suspect the issues are partly direct effects of Parkinson’s and partly to do with the extremely fraught way in which Jon exited the world of paid work. This left him with a dented self-image and self-confidence that makes withdrawal into the soft armchair of geriatric decline seem like a comfortable solution. But he has the capacity for so much more, and it would be entirely wonderful if the two psychos between them can bring that out again.
Less good, I’ve been accused of becoming dull – ME! Who’d have thought it? OK, snoring on the couch whilst holding a book may not count as multi-tasking, but it is a pleasant way of passing the time. In my defense, it was a rather dull book, and I had at least got out of bed.
To try to become less boring, I have decided to take up my interest in photography again. I’ve been trying for some time to get pictures of fluids mixing, such as the swirling patterns created when you add milk to coffee. I’ve had a go using ambient light and with flashgun(s), but so far the perfect shot eludes me. So a quick trip to the local DIY store to buy halogen lights and a good rummage in my room to find suitable cables should soon see me sorted out soon. I think I might even be getting a little bit excited about the project. Watch this space.
MARIE: As the intelligent reader might have surmised, it was indeed I who accused Jon of becoming boring. All his pastimes are passive – reading, listening to the radio, watching TV. While they may be good books and intelligent programmes, I don’t think that’s enough to feed a mind. Particularly since much of it seems to go in one ear and out another so Jon often can’t actually remember enough detail to have a worthwhile conversation afterwards.
Jon’s lack of energy and lack of initiative has been a recurring subject in this blog. Our psychologist says these issues are common in Parkinson’s and has tried to give Jon / us various tools and ideas to overcome the inertia, but to little effect. He now believes medication may be the way forward, so in two weeks’ time we are seeing a psychiatrist colleague of the psychologist (who cannot himself prescribe drugs).
I hope this will help. I suspect the issues are partly direct effects of Parkinson’s and partly to do with the extremely fraught way in which Jon exited the world of paid work. This left him with a dented self-image and self-confidence that makes withdrawal into the soft armchair of geriatric decline seem like a comfortable solution. But he has the capacity for so much more, and it would be entirely wonderful if the two psychos between them can bring that out again.
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.
21 July 2008
Troubles small and large
The trouble with Parkinson’s is that it throws up such a large array of attacks on one’s abilities and self-esteem, some attacks tiny and annoying like those of gnats, some large and painful like African killer bees, with a few really serious rattlesnakes thrown in for 'good' measure.
In the gnat-department, I have developed a skin rash on my upper lip and around my nostrils. It looks like an ultra-bad attack of moustache-dandruff, and both books and neurologist inform me this is not unusual as an effect of PD. I have been attacking it first with normal dandruff shampoo, using an old toothbrush to scrape away at the deposits. That was getting a bit painful, though, and wasn’t having any long-term effect. So now that my official holidays have started, I have shaved off the moustache entirely and purchased the hardest-hitting anti-dandruff cream available without prescription. I now walk around with a semi-permanent cream-moustache, with an understory of my own re-growth that I hope will be reasonably established by the time I have to go back to work. It is a small indignity, but one of many. (Marie claims it is like having an affair with a bald-lipped man …)
The killer bee department, meanwhile, weighs in with a new owie: severe neck stiffness to add to my back pain. Almost any movement of my head or trunk hurts – sometimes just a little, sometimes a whole lot. It is as if muscles that have been OFF and just slightly bothersome suddenly switch ON to great and unpleasant effect. I’m still on prescription pain relief, weekly physiotherapy sessions, daily walks to loosen up the joints, and I have an array of aids such as my bag of microwaveable cherry pips for warmth, a DIY sander that Marie buzzes my back with at regular intervals (to the great detriment of my T-shirts, but so what), and a TENS system that applies electricity direct to the muscles. All of which provide fleeting or temporary relief only. Although my neurologist seems to disagree (though does not say so outright), I think it is the PD causing my neck and back muscles to go wild, but when I mentioned this to my GP a few days ago, all I got back was commiserations (‘oh, that must be nasty’ kind of comment). To be fair, though, he had just referred me to the hospital pain clinic, so what more could he do – refer me twice? I have been to this pain clinic before. First they made my life a living hell after a spinal injection, then they rescued me from the brink of despair by coming up with the first effective pain medication I'd had in a year. It will be interesting to see what they suggest this time.
At least I am still doing okay with my insomnia. That is to say, it is still there, but without the sleeping pills and antidepressants I was taking against the insomnia, I am now sleeping a little less but making a lot more sense. No way do I want to go back to those scary nights (and days) of drug-induced weirdness. Instead, I have prescribed for myself a largish drink to be taken when (not if) I wake in the middle of the night and have trouble getting back to sleep. It kind of works, and since Marie and I are by now almost tee-total during normal drinking hours, I don’t think it will hurt me.
And in the rattlesnake department lives the elephant in the corner (with an extended family of mixed metaphors). This elephant is pink, and answers to the ugly name of cognitive impairment. As I have mentioned before, I do not feel up to my old mental standards, for instance finding it harder to complete work tasks that used to be a matter of course. Is this Parkinson’s, or sleep deprivation, or normal aging? Marie and I have been studiously avoiding the subject until recently, and it’s been playing some havoc with our interaction. Basically, we have both been unusually quick to anger, which has served to mask the fear we both have but that is much more painful to articulate, that I may no longer be quite the intellectual giant I was. But this weekend at last we talked, and decided that what we need is an expert opinion – about whether I am actually impaired (could we have made the whole thing up?), if so what might be the cause, and what can be done about it. We were supposed to see my neurologist next in two months’ time, but have now moved the appoint up so we are going next week. In the meantime, I’ll try to stuff this particular elephant very firmly back into its cage.
In the gnat-department, I have developed a skin rash on my upper lip and around my nostrils. It looks like an ultra-bad attack of moustache-dandruff, and both books and neurologist inform me this is not unusual as an effect of PD. I have been attacking it first with normal dandruff shampoo, using an old toothbrush to scrape away at the deposits. That was getting a bit painful, though, and wasn’t having any long-term effect. So now that my official holidays have started, I have shaved off the moustache entirely and purchased the hardest-hitting anti-dandruff cream available without prescription. I now walk around with a semi-permanent cream-moustache, with an understory of my own re-growth that I hope will be reasonably established by the time I have to go back to work. It is a small indignity, but one of many. (Marie claims it is like having an affair with a bald-lipped man …)
The killer bee department, meanwhile, weighs in with a new owie: severe neck stiffness to add to my back pain. Almost any movement of my head or trunk hurts – sometimes just a little, sometimes a whole lot. It is as if muscles that have been OFF and just slightly bothersome suddenly switch ON to great and unpleasant effect. I’m still on prescription pain relief, weekly physiotherapy sessions, daily walks to loosen up the joints, and I have an array of aids such as my bag of microwaveable cherry pips for warmth, a DIY sander that Marie buzzes my back with at regular intervals (to the great detriment of my T-shirts, but so what), and a TENS system that applies electricity direct to the muscles. All of which provide fleeting or temporary relief only. Although my neurologist seems to disagree (though does not say so outright), I think it is the PD causing my neck and back muscles to go wild, but when I mentioned this to my GP a few days ago, all I got back was commiserations (‘oh, that must be nasty’ kind of comment). To be fair, though, he had just referred me to the hospital pain clinic, so what more could he do – refer me twice? I have been to this pain clinic before. First they made my life a living hell after a spinal injection, then they rescued me from the brink of despair by coming up with the first effective pain medication I'd had in a year. It will be interesting to see what they suggest this time.
At least I am still doing okay with my insomnia. That is to say, it is still there, but without the sleeping pills and antidepressants I was taking against the insomnia, I am now sleeping a little less but making a lot more sense. No way do I want to go back to those scary nights (and days) of drug-induced weirdness. Instead, I have prescribed for myself a largish drink to be taken when (not if) I wake in the middle of the night and have trouble getting back to sleep. It kind of works, and since Marie and I are by now almost tee-total during normal drinking hours, I don’t think it will hurt me.
And in the rattlesnake department lives the elephant in the corner (with an extended family of mixed metaphors). This elephant is pink, and answers to the ugly name of cognitive impairment. As I have mentioned before, I do not feel up to my old mental standards, for instance finding it harder to complete work tasks that used to be a matter of course. Is this Parkinson’s, or sleep deprivation, or normal aging? Marie and I have been studiously avoiding the subject until recently, and it’s been playing some havoc with our interaction. Basically, we have both been unusually quick to anger, which has served to mask the fear we both have but that is much more painful to articulate, that I may no longer be quite the intellectual giant I was. But this weekend at last we talked, and decided that what we need is an expert opinion – about whether I am actually impaired (could we have made the whole thing up?), if so what might be the cause, and what can be done about it. We were supposed to see my neurologist next in two months’ time, but have now moved the appoint up so we are going next week. In the meantime, I’ll try to stuff this particular elephant very firmly back into its cage.
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