JON: I have a weekly subscription to New Scientist, my favorite magazine – it used to be that I just looked at the job vacancies, but now I actually read the text. One of my favorite columns is “Feedback” which is where the NS keeps its funnies. Feedback recently had a piece on acronyms. I responded by sending them my favorite homemade acronym which I’ve always been rather proud of, so I was very pleased to see it in print in the July 10th issue, wrapping up a long discussion of third-order multiply nested acronyms (don’t ask!). Here’s my bit:
“And that, surely, is that, we thought — but no, for here is Jon [...] telling us that some years ago he presented a paper at the 1995 Annual Scientific Meeting of the Faculty of Dentistry at the University of Hong Kong, which had the title ‘Average chewing rates on nut yoghurt mixtures". ‘As you will see immediately’, he says, ‘the acronym of this paper title is ACRONYM.’ He challenges Feedback readers to produce a similar title, one which is an acronym for "acronym", and then – this is the hard part - get it published in a reputable journal. Unless and until this happens, that’s enough on acronyms.”
17 August 2010
15 August 2010
ON and OFF
JON: With Parkinson’s you are either ON or OFF. Being ON means that you are basically normal. Being OFF takes more effort to describe. My muscles are stiff, my brain is slow (this is called bradyphrenia) and my balance is buggered. In fact, I’m now using my stick whenever I walk. I started off using it just as a badge so that people in the street would treat me as ‘normal’, whatever that means, rather than look at me sideways like I’m some early-morning drunk. But now I find I actually need the stick when I go out, a disappointing deterioration.
It’s been an ON and OFF kind of week, with sadly more OFF than ON. I take my pills at the prescribed intervals of 3 ½ hours, but my morning dose is having less and less effect and all the doses seem to take forever to kick in. Then they work for bit, I feel 100% normal (sometimes even euphoric), but all too soon the little round buggers wear off again, I stiffen up, my balance goes and I generally feel rotten.
Sometimes the OFF feeling sneaks up on me. I might be reading or writing and miss hearing one of the many alarms I have set up around the house. But where a mechanical alarm may fail to grab my attention, my internal clock will soon remind me – my muscles stiffen, my brain seizes up, my speech goes and I get a bad blast of OFFness.
If I could predict the effects I could just adjust the dose, but some days the drugs work well, and other days they don’t. If I’ve had a busy day, I am quite prepared for that to be followed by an OFF day, but the OFFs also come for no good reason at all. I’m told this is likely get worse as the disease progresses, and I will have days when the drugs just don’t (won’t?) work. So that’s something to look forwards to, not. At least the time scale is years rather than weeks.
Honestly, I’m just feeling a bit sorry for myself today. I made the mistake of reading the Parkinson’s UK forum, which is great on a good day but not always a good idea on a bad day. Sometimes ignorance is bliss. This PD thing is beginning to get boring, and I just want a day off – or, rather, a whole day ON would be nice for a change.
It’s been an ON and OFF kind of week, with sadly more OFF than ON. I take my pills at the prescribed intervals of 3 ½ hours, but my morning dose is having less and less effect and all the doses seem to take forever to kick in. Then they work for bit, I feel 100% normal (sometimes even euphoric), but all too soon the little round buggers wear off again, I stiffen up, my balance goes and I generally feel rotten.
Sometimes the OFF feeling sneaks up on me. I might be reading or writing and miss hearing one of the many alarms I have set up around the house. But where a mechanical alarm may fail to grab my attention, my internal clock will soon remind me – my muscles stiffen, my brain seizes up, my speech goes and I get a bad blast of OFFness.
If I could predict the effects I could just adjust the dose, but some days the drugs work well, and other days they don’t. If I’ve had a busy day, I am quite prepared for that to be followed by an OFF day, but the OFFs also come for no good reason at all. I’m told this is likely get worse as the disease progresses, and I will have days when the drugs just don’t (won’t?) work. So that’s something to look forwards to, not. At least the time scale is years rather than weeks.
Honestly, I’m just feeling a bit sorry for myself today. I made the mistake of reading the Parkinson’s UK forum, which is great on a good day but not always a good idea on a bad day. Sometimes ignorance is bliss. This PD thing is beginning to get boring, and I just want a day off – or, rather, a whole day ON would be nice for a change.
08 August 2010
My husband the drug addict
MARIE: Like anyone else with Parkinson‘s, Jon has become a drug addict in the truest sense of the word. He cannot live without his drugs. Not like a heroin addict who’d have a horrible time and might suffer life-long cravings if he stopped. Jon is a real drug addict and would have approximately zero quality of life without his drugs.
As he said here a few weeks ago, his daily schedule revolves around the drugs. First thing in the morning I go, like some wild-haired drug fairy, and wake him up by popping the first five tablets of the day into his mouth. Well, in actual fact he is often awake already and impatiently waiting for it to be drug time so he can start regaining control of his body and be able to get up.
The rest of the day is punctuated by drug taking (another 20 or so tablets in the course of the day) and defined by drug effects. Jon still gets quite predictable effects from his doses (unpredictable fluctuations are a hallmark of long-term dopamine addicts), so he/we can plan activities around his good times. We know not to plan a medical appointment for 11 am when he is at a low ebb, but make the most of the high tide between noon and 2 pm – etc., through the ups and downs of every day.
With his wellbeing so firmly in the grip of pharmaceuticals, it’s no wonder that a lot of Jon’s attention is focused on when the next dose is due. A lot of mental energy goes into waiting for drugs to take effect, or waiting out the dip before it’s time to take more. It’s a very inward-looking and, I sometimes think, a rather counter-productive focus – but understandable. Jon has alarms set up on his mobile to go off when his daily doses are due, but man and machine are not always in the same place, so he keeps asking me what time it is, and when he’s napping I get to play ‘hunt the phone’ and yell up to Jon that’s it’s now.
Being out and about requires drugs to be carried at all times, and preferably a drink to take them with. Jon usually has a bit of everything on him, and I carry emergency supplies of about a day’s worth of drugs in my handbag in case something should happen to keep us away from home for longer than expected – a puncture, an accidental meeting, a sudden desire to eat out. In fact, my small stash never leaves my handbag so I also carry it with me when I’m out on my own. Since Jon has started on the Ritalin, I think that makes me a criminal as I am now carrying a controlled substance not prescribed to me. Very edgy.
Speaking of edges, one place where I’ve put my foot down is the brinkmanship Jon used to practice with his prescription renewals which several times left him with less 24 hour’s supply in stock. That’s a bit too brave for my taste, and since the recent problems with the supply of a widely used L-dopa product, Sinemet, Jon now agrees. We try to have at least a week’s supply available at all times, although it does mean traipsing down the pharmacy on a very regular basis. Some drugs he gets 3 months’ supply at a time, others only four weeks, and of course we’ve not managed to synchronize any of it. Being ill takes a lot of time and effort.
As he said here a few weeks ago, his daily schedule revolves around the drugs. First thing in the morning I go, like some wild-haired drug fairy, and wake him up by popping the first five tablets of the day into his mouth. Well, in actual fact he is often awake already and impatiently waiting for it to be drug time so he can start regaining control of his body and be able to get up.
The rest of the day is punctuated by drug taking (another 20 or so tablets in the course of the day) and defined by drug effects. Jon still gets quite predictable effects from his doses (unpredictable fluctuations are a hallmark of long-term dopamine addicts), so he/we can plan activities around his good times. We know not to plan a medical appointment for 11 am when he is at a low ebb, but make the most of the high tide between noon and 2 pm – etc., through the ups and downs of every day.With his wellbeing so firmly in the grip of pharmaceuticals, it’s no wonder that a lot of Jon’s attention is focused on when the next dose is due. A lot of mental energy goes into waiting for drugs to take effect, or waiting out the dip before it’s time to take more. It’s a very inward-looking and, I sometimes think, a rather counter-productive focus – but understandable. Jon has alarms set up on his mobile to go off when his daily doses are due, but man and machine are not always in the same place, so he keeps asking me what time it is, and when he’s napping I get to play ‘hunt the phone’ and yell up to Jon that’s it’s now.
Being out and about requires drugs to be carried at all times, and preferably a drink to take them with. Jon usually has a bit of everything on him, and I carry emergency supplies of about a day’s worth of drugs in my handbag in case something should happen to keep us away from home for longer than expected – a puncture, an accidental meeting, a sudden desire to eat out. In fact, my small stash never leaves my handbag so I also carry it with me when I’m out on my own. Since Jon has started on the Ritalin, I think that makes me a criminal as I am now carrying a controlled substance not prescribed to me. Very edgy.
Speaking of edges, one place where I’ve put my foot down is the brinkmanship Jon used to practice with his prescription renewals which several times left him with less 24 hour’s supply in stock. That’s a bit too brave for my taste, and since the recent problems with the supply of a widely used L-dopa product, Sinemet, Jon now agrees. We try to have at least a week’s supply available at all times, although it does mean traipsing down the pharmacy on a very regular basis. Some drugs he gets 3 months’ supply at a time, others only four weeks, and of course we’ve not managed to synchronize any of it. Being ill takes a lot of time and effort.
01 August 2010
Who cares about carers?
MARIE: The ex-pat life may sound quite exciting and even, at times, glamorous, with all that jetting off to see foreign friends (strictly on budget airlines) and conducting daily life among the natives in little-known languages (and with appalling grammar). The reality, of course, is rather more pedestrian and involves far more hassle and incomprehension than it does cultural highlights and insights.
However, it does give you an excellent vantage point from which to discover what your home-pat culture is actually like. And I have discovered that, part from the pickled herring and consensus politics, Danish culture also involves a striking blindness to the position of the family carer – to the point where there isn’t even a word in Danish that matches English “carer” and American “care-giver”. And that’s where we’re moving to?
I have found several very useful books in English – chief among them Hugh Marriott’s book The Selfish Pig’s Guide to Caring – but find vanishingly little self-help literature for carers in Danish. As I wrote a few weeks ago, I get huge benefit from participating on the internet forum run by Parkinson’s UK, particularly the special section for carers. Again, nothing similar exists in Denmark. I’m glad I already have all these resources in English that I can turn to for help.
Then I read a book by a Danish journalist whose husband was diagnosed with aggressive ALS (motor neuron disease) shortly after their wedding and was dead within a year. Although ALS is very different from Parkinson’s, there was so much in this book that resonated with me and spoke to concerns and frustrations I had also had. A while later, I spoke to the daughter of a man who had a slow and difficult death from cancer, and she too had found a great deal in the same book that she had identified with and that had helped her understand and accept her thoughts and reactions. Okay, this is a really well-written and well-considered book, but there’s more to it.
I realized just how much carers and relatives of the long-term ill have to give each other – whether the disease or condition is chronic or terminal, mental or physical, the result of an accident or a slow progression. I reckon it’s therapeutic to tell your story, to make sense of what has happened in your life and to begin to take the sting out of it by structuring and retelling it in a way that slowly incorporates this story into the longer storyline of your whole life. And I reckon it’s equally therapeutic to read these stories, to learn how others have dealt with and overcome difficulties, and to realize that the feelings that pain you and shame you are common to many and can be survived.
So what I’d like to do when we’ve moved to Denmark is collect carers’ stories and publish them so other carers can learn and benefit. I’ve spoken to a few people already who seem to think this is a good and useful project and who have offered their help. I get lots of different ideas, most of which bob around for a few weeks and then sink without a trace, but I really hope this turns out to be one of the viable ones. To be continued …
However, it does give you an excellent vantage point from which to discover what your home-pat culture is actually like. And I have discovered that, part from the pickled herring and consensus politics, Danish culture also involves a striking blindness to the position of the family carer – to the point where there isn’t even a word in Danish that matches English “carer” and American “care-giver”. And that’s where we’re moving to?
I have found several very useful books in English – chief among them Hugh Marriott’s book The Selfish Pig’s Guide to Caring – but find vanishingly little self-help literature for carers in Danish. As I wrote a few weeks ago, I get huge benefit from participating on the internet forum run by Parkinson’s UK, particularly the special section for carers. Again, nothing similar exists in Denmark. I’m glad I already have all these resources in English that I can turn to for help.
Then I read a book by a Danish journalist whose husband was diagnosed with aggressive ALS (motor neuron disease) shortly after their wedding and was dead within a year. Although ALS is very different from Parkinson’s, there was so much in this book that resonated with me and spoke to concerns and frustrations I had also had. A while later, I spoke to the daughter of a man who had a slow and difficult death from cancer, and she too had found a great deal in the same book that she had identified with and that had helped her understand and accept her thoughts and reactions. Okay, this is a really well-written and well-considered book, but there’s more to it.
I realized just how much carers and relatives of the long-term ill have to give each other – whether the disease or condition is chronic or terminal, mental or physical, the result of an accident or a slow progression. I reckon it’s therapeutic to tell your story, to make sense of what has happened in your life and to begin to take the sting out of it by structuring and retelling it in a way that slowly incorporates this story into the longer storyline of your whole life. And I reckon it’s equally therapeutic to read these stories, to learn how others have dealt with and overcome difficulties, and to realize that the feelings that pain you and shame you are common to many and can be survived.
So what I’d like to do when we’ve moved to Denmark is collect carers’ stories and publish them so other carers can learn and benefit. I’ve spoken to a few people already who seem to think this is a good and useful project and who have offered their help. I get lots of different ideas, most of which bob around for a few weeks and then sink without a trace, but I really hope this turns out to be one of the viable ones. To be continued …
26 July 2010
Measurements
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.
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