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.
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 …
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.
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