JON: Everything seemed to be going in the right direction, I was beginning to see the first tender green shoots of several trite metaphors, etc. But then I had to go and do the obligatory sick man’s shuffle of one step forward and two steps back.
Marie and I were away from home for a few nights and were forced to share a bed – which is allowed, we’re married with bits of paper and joint bank accounts and everything. But to return to the point: as is my wont I went to bed early, about 9:30, took my pills and was asleep within minutes. Mare came later at a more grown-up time.
Some time later, in the small wee hours of the night, I woke Marie by shaking her vigorously and lecturing her loudly on how she should join the feminist revolution. Several well-placed kicks from Marie calmed me down – until I was at it again, this time demanding equal rights to education for women. This time, though, I woke myself up to and I can distinctly remember saying out loud: “OH SHIT, it’s just Discworld, isn’t it” (which, for the uneducated / un-medicated amongst you, means Terry Pratchett’s series of comic fantasy/SF, with 60 million books sold so far).
The rest of the night was blissfully un-eventful for Marie, although I was kept awake (I thought) by noises off. “So“, I hear you ask, “is that an auditory hallucination or are you just pleased to hear me?” Well, some of it just sounded like someone walking around upstairs – but I should point out that we were in a bungalow. Spooky.
The whole experience felt like a return to the bad old days of constant sleepwalking and scary night-time hallucinations which I thought I’d put behind me when I came off Sifrol over a year ago. So why did it happen again, and why now? It’s possible that I missed one of my nightly muscle relaxants, but when I have missed one before I have just stayed awake, not gone under and acted out my dreams. Or is it quite simply that we disturb eachother so much that it has become physically impossible for us to share a bed (for the purpose of sleep, at least)? The worst-possible-case scenario is that the Ritalin, which does me so much good during the day, is beginning to cause problems at night.
So the next night I experimented by not taking my muscle relaxant, which caused the usual insomniac misery (although much less shouting). So it wasn’t a missed pill. Nor has there been any recurrence (that we know of) since we came home to each our separate beds, which there should probably have been if it was the Ritalin playing up. So it was most likely just the situation that caused it. Not great, but that at least we can live with and work around.
And back in Flatland under the thumbs of my many and varied health professionals, my neurologist treated me to an interpretation of the results of my sleep clinic registration (see the post of 24 January 2010). The results, not very helpfully, were inconclusive: it might be REM sleep disorder, and then again it might not. What the tests did show was considerable activity in various muscle groups during sleep, particularly in my muscles of mastication. Better known as bruxing, this is so common it's almost normal.
In a nutshell: I have slightly disturbed sleep, REM sleep disorder in quite common in Parkinson’s, I have Parkinson’s, so my disturbed sleep is probably caused by REM sleep disorder. The most common treatment is more of the muscle relaxants I’m already taking, so we’ll go with that for now.
One good point is that the neurologist explained that although REM-SD and PD are related in occurrence, they are not necessarily related in severity. Which means that as the PD gets worse, the REM-SD may well stay exactly the same. I am also pleased that the sleep clinic didn’t diagnose some other, unrelated unpleasantness such as obstructive sleep apnoea which I was rather worried they might leap on. So I guess that although I am unfit for work, I am at least reasonably fit to go to sleep.
26 February 2010
21 February 2010
Officially 100% useless
JON: Well, now it’s official. I said last week that all that remained of my assessment for disability pension was for some untranslatable expert to ring me to discuss my future. As it happened, I was in the shower when he rang, so instead he spoke to Marie. In fact, he had decided that he didn’t need to speak to me at all as I was such an evidently hopeless case, and that he was closing my case with a recommendation for full disability benefits without any future labour market reintegration efforts. All that now remains is for a third department to calculate the exact amount they will pay me, and then I have a mass of bureaucracy to wade through with a couple of insurance companies who should top up my benefits on the basis of this assessment.
But the decision is made, so essentially that’s it. Marie and I both feel kind of ambivalent about it. It’s a great relief that the long wait is over, and that no public servant miser is going to demand that I supplement a smaller pension by working as a part-time car park attendant or break-dance instructor. On the other hand, it is a mixed blessing to know the experts agree that there is not a single thing I can do that anyone could possibly want to pay for.
My psychologist reckons I shouldn’t feel like a reject but be satisfied that it’s much easier for the experts to award benefits to someone with a recognized disease such as Parkinson’s (expert diagnosis and crystal-clear prognosis) than to more common and more amorphous complaints such as stress or back pain.
Anyway, fuelled by Ritalin and in the spirit of working to discover what I shall enjoy doing for the rest of my life, I have taken up art with a decidedly lower-case a. A very early result is this composition of teabag splats. It may need more work…
And my buy of the week is an electric back massager (from OBH-Nordica) which is wonderful, viciously painful and very effective. It was also fairly expensive, but after a free grab pole and tricycle from the local authority, I reckoned I could afford it – and I’ve always thought I was worth it.
The massager works by slowly moving a set of large steel balls up and down (or round and round) the spine while another set massage the neck. It’s a good imitation of the sort of movement a masseuse would make, but not as gentle and with the added advantage that her fingers don’t get fatigued.
I’ve discovered that one can overdo it, though, so at the moment my back feels battered and bruised, but even that is better than the chronic pain I had before. On the whole I’m pretty pleased with my purchase and recommend it to anyone with back pain and a busy wife.
But the decision is made, so essentially that’s it. Marie and I both feel kind of ambivalent about it. It’s a great relief that the long wait is over, and that no public servant miser is going to demand that I supplement a smaller pension by working as a part-time car park attendant or break-dance instructor. On the other hand, it is a mixed blessing to know the experts agree that there is not a single thing I can do that anyone could possibly want to pay for.
My psychologist reckons I shouldn’t feel like a reject but be satisfied that it’s much easier for the experts to award benefits to someone with a recognized disease such as Parkinson’s (expert diagnosis and crystal-clear prognosis) than to more common and more amorphous complaints such as stress or back pain.Anyway, fuelled by Ritalin and in the spirit of working to discover what I shall enjoy doing for the rest of my life, I have taken up art with a decidedly lower-case a. A very early result is this composition of teabag splats. It may need more work…
And my buy of the week is an electric back massager (from OBH-Nordica) which is wonderful, viciously painful and very effective. It was also fairly expensive, but after a free grab pole and tricycle from the local authority, I reckoned I could afford it – and I’ve always thought I was worth it.The massager works by slowly moving a set of large steel balls up and down (or round and round) the spine while another set massage the neck. It’s a good imitation of the sort of movement a masseuse would make, but not as gentle and with the added advantage that her fingers don’t get fatigued.
I’ve discovered that one can overdo it, though, so at the moment my back feels battered and bruised, but even that is better than the chronic pain I had before. On the whole I’m pretty pleased with my purchase and recommend it to anyone with back pain and a busy wife.
12 February 2010
Benefits assessment
JON: The benefits department of the Dutch government will soon rate my level of disability, which in turn will determine my income for the next decade, so it’s a big deal. Normally you get assessed after two years off sick from work, but hopeless cases can apply earlier. And wouldn’t you know, my employer suggested that I apply early…
Plan A is to be rated 100% disabled and thus get the maximum benefit amount possible. The Dutch have an interesting system: if you are completely unable to hold down a normal job (what they charmingly call 70-100% unsuitable for work), you get a full pension and the system is very nice to you. However, if you are less that 30% useless, the state basically washes its hands of you and you’re entirely on your own financially. The middle ground is taken up by people who get a bit of benefit but not enough to live on.
The evaluation has been hanging over us like a rather dark cloud, so given the pretty hope-free prognoses from the many medics we have seen, it seemed sensible to start the ball rolling. That way, we will soon know what income we can expect, and whether I need to start a new career as a rent boy in Amsterdam (I wish I knew where that goat got to…)
I sent in the paperwork for my application some time ago, but nothing happened, not even a ‘thank you for your letter, we may get around to reading it some day’-letter. So we rang again, and again, and eventually we got an appointment. The delay was apparently caused by a shortage of doctors able to evaluate academics – which strikes me as odd since doctors are themselves academics so should all know what that involves.
Anyway, a few days ago we saw a rather nice doctor who (surprising for the Dutch) claimed to speak poor English. But she could understand it just fine, and as that exactly mirrors Marie’s abilities in Dutch (i.e. she understands, but doesn’t speak), we could set up a short chain of Chinese whispers: Doctor spoke to Marie in Dutch, Marie translated for me into English, and I replied in English. Well, in fact I got left out much of the time since Marie knows my medical history (and can remember it better than I can).
Since we’d had loads of time while waiting for the appointment to be made, we were compulsively well prepared for this interview. We had filled in forms supplied by the UK Parkinson’s association and in books, and had made up our own spreadsheets to list my motor and non-motor symptoms, medication use, appointments etc. The only thing missing was the brass band.
Using the forms is a kind if ‘symptoms bingo’ where I score quite high as there are few symptoms I don’t have to some degree (right down to the Parkinsonian earwax – and I have the photos to prove it). Not surprisingly, the doctor seemed to regard me as 100% disabled and said she would report that to the last evaluator, an untranslatable kind of labour market advisor. This leaves just one final hurdle where I have to talk to [untranslatable] who decides what work, if any, I am suited to doing.
Normally I would be invited to their office for this interview, but the doctor thought the result was more or less a foregone conclusion so that there was little point in me schlepping all the way to their office. Instead, she would recommend that [untranslatable] assesses my level of disability / inability over the phone. I expect the conversation will go something like this:
Me: Hello.
[untranslatable]: Hello, I am [untranslatable]. Do you think you are able to work at all?
Me: No.
[untranslatable]: OK, fair enough, that’s also what the doctor thought. Bye-bye.
Well, we shall soon know. It will be a major relief if we can finally put this hurdle behind us.
Plan A is to be rated 100% disabled and thus get the maximum benefit amount possible. The Dutch have an interesting system: if you are completely unable to hold down a normal job (what they charmingly call 70-100% unsuitable for work), you get a full pension and the system is very nice to you. However, if you are less that 30% useless, the state basically washes its hands of you and you’re entirely on your own financially. The middle ground is taken up by people who get a bit of benefit but not enough to live on.
The evaluation has been hanging over us like a rather dark cloud, so given the pretty hope-free prognoses from the many medics we have seen, it seemed sensible to start the ball rolling. That way, we will soon know what income we can expect, and whether I need to start a new career as a rent boy in Amsterdam (I wish I knew where that goat got to…)
I sent in the paperwork for my application some time ago, but nothing happened, not even a ‘thank you for your letter, we may get around to reading it some day’-letter. So we rang again, and again, and eventually we got an appointment. The delay was apparently caused by a shortage of doctors able to evaluate academics – which strikes me as odd since doctors are themselves academics so should all know what that involves.
Anyway, a few days ago we saw a rather nice doctor who (surprising for the Dutch) claimed to speak poor English. But she could understand it just fine, and as that exactly mirrors Marie’s abilities in Dutch (i.e. she understands, but doesn’t speak), we could set up a short chain of Chinese whispers: Doctor spoke to Marie in Dutch, Marie translated for me into English, and I replied in English. Well, in fact I got left out much of the time since Marie knows my medical history (and can remember it better than I can).
Since we’d had loads of time while waiting for the appointment to be made, we were compulsively well prepared for this interview. We had filled in forms supplied by the UK Parkinson’s association and in books, and had made up our own spreadsheets to list my motor and non-motor symptoms, medication use, appointments etc. The only thing missing was the brass band.
Using the forms is a kind if ‘symptoms bingo’ where I score quite high as there are few symptoms I don’t have to some degree (right down to the Parkinsonian earwax – and I have the photos to prove it). Not surprisingly, the doctor seemed to regard me as 100% disabled and said she would report that to the last evaluator, an untranslatable kind of labour market advisor. This leaves just one final hurdle where I have to talk to [untranslatable] who decides what work, if any, I am suited to doing.
Normally I would be invited to their office for this interview, but the doctor thought the result was more or less a foregone conclusion so that there was little point in me schlepping all the way to their office. Instead, she would recommend that [untranslatable] assesses my level of disability / inability over the phone. I expect the conversation will go something like this:
Me: Hello.
[untranslatable]: Hello, I am [untranslatable]. Do you think you are able to work at all?
Me: No.
[untranslatable]: OK, fair enough, that’s also what the doctor thought. Bye-bye.
Well, we shall soon know. It will be a major relief if we can finally put this hurdle behind us.
05 February 2010
The trike has arrived!
MARIE: Great news: the tricycle which Jon is getting on indefinite loan from the local authority arrived a few days ago, and (I think) because he’s now on Ritalin Jon immediately got on it and rode down to the local sports centre car park to practice, and has been out biking every day since. Not wanting me along, not wanting to wait for the snow to melt, not wanting to have a practice session first with his occupational therapist. I am so happy to see him back in the saddle, as it were.
I had a go too, and discovered that it’s surprisingly different from riding a two-wheeler. On two wheels, you use your bodyweight to balance on uneven ground and in turns, whereas on three stable wheels you can only adjust through steering. Both Jon and I lean madly into turns on the trike, to absolutely no effect – an automatic response that must be consciously unlearnt.
And there are other differences to get used to, such as that walking and pushing the thing next to you as you would a two-wheeler just means the wide-backed three-wheeler skins your ankles, that streets not totally flat (as most aren’t, to encourage rainwater to run off) tilt you and trike so you must actively steer for the middle of the road, and that with three wheels you feel any unevenness in the road surface much more keenly than on two wheels.
It’s a bit like learning to bike all over again, but very importantly: this time without any danger of falling off. Brilliant.
JON: Suddenly, a phone call came from the bike shop: can we deliver your tricycle today? Well, I said OK, though we are thick with snow once more – but it’s a tricycle, right, so there should be no risk of falling off, and so far I have indeed not fallen. What happens instead is that I drive into things. Apparently, the thing has a differential gearing which has the effect of exasperating any turns I might foolishly try to make, while lumps, bumps and pot holes also change my direction.
It was snowing at the weekend so I bought a hat. The initial plan was to get a knitted bobble hat of the sort village idiots wear, but what I ended up with was a rather expensive Australian hat made from waxed cattle hide. It does nothing to keep my ears warm, but it does keep my head dry, and Marie claims it makes me look very stylish and outdoorsy. We also have a proper cycle helmet that Marie used when she was practicing for her triathlon a few years ago. So I now have a choice for my bike rides: wear no hat = look normal + get cold, or wear Aussie hat = look cool + have a dry head, or wear helmet = look a total fool + be safe. All is vanity…
BTW, I fitted an invisible counter to the blog which means that I can now see how many people read this blog, which is really quite interesting and encouraging. The good news for all you blog readers is that you are not alone. In its first month, the counter has reported 39 readers, and you are from all over the place USA, UK, Netherlands, Denmark, Germany, and even Russia. I have a good idea of who some of you are (Hi Alice, says Jon, and Hej Annie, says Marie), but other readers are from places where we have no contacts (yet?). The software also shows that you return, which is very nice to know as I am possibly a bit too old for that many one night stands.
I had a go too, and discovered that it’s surprisingly different from riding a two-wheeler. On two wheels, you use your bodyweight to balance on uneven ground and in turns, whereas on three stable wheels you can only adjust through steering. Both Jon and I lean madly into turns on the trike, to absolutely no effect – an automatic response that must be consciously unlearnt.
And there are other differences to get used to, such as that walking and pushing the thing next to you as you would a two-wheeler just means the wide-backed three-wheeler skins your ankles, that streets not totally flat (as most aren’t, to encourage rainwater to run off) tilt you and trike so you must actively steer for the middle of the road, and that with three wheels you feel any unevenness in the road surface much more keenly than on two wheels.It’s a bit like learning to bike all over again, but very importantly: this time without any danger of falling off. Brilliant.
JON: Suddenly, a phone call came from the bike shop: can we deliver your tricycle today? Well, I said OK, though we are thick with snow once more – but it’s a tricycle, right, so there should be no risk of falling off, and so far I have indeed not fallen. What happens instead is that I drive into things. Apparently, the thing has a differential gearing which has the effect of exasperating any turns I might foolishly try to make, while lumps, bumps and pot holes also change my direction.
It was snowing at the weekend so I bought a hat. The initial plan was to get a knitted bobble hat of the sort village idiots wear, but what I ended up with was a rather expensive Australian hat made from waxed cattle hide. It does nothing to keep my ears warm, but it does keep my head dry, and Marie claims it makes me look very stylish and outdoorsy. We also have a proper cycle helmet that Marie used when she was practicing for her triathlon a few years ago. So I now have a choice for my bike rides: wear no hat = look normal + get cold, or wear Aussie hat = look cool + have a dry head, or wear helmet = look a total fool + be safe. All is vanity…
BTW, I fitted an invisible counter to the blog which means that I can now see how many people read this blog, which is really quite interesting and encouraging. The good news for all you blog readers is that you are not alone. In its first month, the counter has reported 39 readers, and you are from all over the place USA, UK, Netherlands, Denmark, Germany, and even Russia. I have a good idea of who some of you are (Hi Alice, says Jon, and Hej Annie, says Marie), but other readers are from places where we have no contacts (yet?). The software also shows that you return, which is very nice to know as I am possibly a bit too old for that many one night stands.
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