Last week I visited my neurologist – who looks like she’s 17, but that’s probably just because I’m an old fart. I complained that my Parkinson’s disease has progressed a bit so I now have ‘sticky’ hands and feet (and have accused my poor wife of coating the floors in treacle), so she upped my dosage of Sifrol to 16 pills per day – from three lots of four to four lots of four pills. Plus I’m taking up to six pain pills per day as three lots of two. It’s almost impossible to keep track of what to take when – I’ve set the alarms on my mobile phone, but as the phone sits either at home in the charger (which, handily, is two floors away from my study) or at work in my jacket pocket (i.e. slung over a chair in a different room), either no one hears it OR it goes off directly in my ear – and bloody loud that can be. Marie keeps trudging up the stairs with the phone for me to sort out (because it might have been a call) which tends to annoy both of us.
We are both going a bit crazy with lack of sleep. We’ve got separate bedrooms now or neither of us would ever sleep at all, but with the doors open so we can still wake each other up when getting up for a wee, or to let the cat in and out (and in and out and in and out), or when my insomnia wins and I switch on night-time radio. On top, I’m going a bit mad with the back pain (again!) and, if I’m honest, with life. So what am I doing to fight the PD? Nothing much, just having a therapeutic moan – it’s a carbon-neutral thing to do.
Slightly less good for the old carbon footprint is living in a different country from my children and grandchildren. We’re off to the UK next week to see them, and to get one of my teeth fixed (we have a serious down on the local dentist, so we try to go when abroad). I’m almost certain that more than one visit is needed, which will give me another excuse to see the offspring. Although we’re only staying for one night this visit, we have booked our luggage in as hold baggage to make life easier, and are paying extra for the priviledge (cash-rich, health-poor). So a trip to the supermarket is in order to fill up the bag for the return journey. We’ll stock up on the necessities of expat life: crumpets, pork pie, bacon, bisto and marmite (the marmite is there mainly to annoy Marie who thinks its is disgusting, but I like it). We’re taking the kids a book from our by now extensive library about PD – hopefully it will do more good than harm.
25 May 2008
Introduction
My name is Jon and I’ve got Parkinson’s Disease. These (cue music) are the journeys of the Spaceship Jon with the mission to boldly go etc. Parkinson’s is many things, and they say that when you’ve seen one case of Parkinson’s, you’ve seen one case of Parkinson’s. Well, this is my case, for what it’s worth, and this blog is aimed at you who have PD, and your partner, and anyone else with the time to read. I’m calling this PD unplugged because I aim to tell the truth – uncut, unadorned, unplugged – without all that pluckiness and good cheer in the face of adversity that you often get when people write about their chronic diseases.
Who am I? Well, I’m 55, I used to have a good job in England, two kids, one wife and one degree, but that was then. Now in my second life I have a second wife, three degrees and work as a food scientist in Holland (I happen to be THE world expert on custard) … it’s a long story, and I might tell it some day. My co-author on this blog is Marie who I have been known to refer to as "my current wife" and who both edits and adds to my draft posts, and who is likely occasionally to bypass me and write posts from scratch.
I started to get back pain mid 2006. No-one could tell why, the pain kept getting worse, and with each visit to my GP the stakes got raised until I was taking absurd doses of morphine, anti-depressants and sleeping pills to no effect. Or should I say, to the effect that I was seriously and permanently smashed. In January 2007 I went to a conference in Canada and by then I couldn’t sit for more than a few minutes at a time – standing up most of the way across the Atlantic and through the sessions I went to was fun fun fun, and I didn’t take in much of what was going on around me anyway. An epidural injection on my return managed to make things worse, much much worse. If my back was smouldering before the epidural, then after it was a forest fire. Within days, I had to go for a job interview in UK – a disaster as apart from having to stand up throughout, the morphine was giving me major thirst so I drank water constantly and had to have toilet breaks every five minutes, plus probably talked complete gibberish. One day it will become a funny tale, but not yet. (Fortunuately, as it turned out, the job would have been totally wrong for me anyway.)
While all this back stuff was going on, I was getting quite shaky, especially in my right hand (I’m right-handed – yes, god hates me). Also I was getting stiffer, particularly in my back. The trouble was that the back pain was so bad it was obscuring everything else, and nobody seemed able to come up with a diagnosis that covered all my complaints, probably because it was difficult to work out what was the original, underlying problem.
But at last, after a year of X-rays and MRI scans and EMG, countless visits to my GP and physiotherapist and the pain clinic and two neurologists, after four months off sick from work driving both me and Marie mad with anxiety and irritation, finally:
DIAGNOSIS
followed quickly by the right pills to control the back pain (epilepsy drugs, if that makes any sense) and Symmetrel to start treating the PD.
For me the diagnosis came as a relief – it seemed so much better than the things I had by then convinced myself that I had, like multiple sclerosis or a brain tumor. It took some time to realize that the diagnosis was not actually all that much of a good thing. On the scale of afflictions, a sprained ankle would have been nice, but no: it has to be an incurable progressive bloody disease. It seems I need to prepare for a slow descent. I have some symptoms now, and PD being a progressive disease these will get worse – and every now and then I’ll get a new symptom for my collection. Ho bloody ho.
So, I was 54 when diagnosed. Most people are over 60 when they get the diagnosis, but usually you only call it early-onset if you are diagnosed before you are 40. So I’m stuck in the middle, with bloody-inconvenient-onset PD.
Anyway, the neurologist who diagnosed me suggested I should take another month or so of sick leave to adjust to the medicaion and the idea of PD, which I did. And then I went back to work. Most people were kind, if often uncomprehending, some were helpful – and the personnel department launched what felt like an all-out attack to get rid of me. But that too is a long story, which I will tell you later when I'm feeling up to it.
As for right now, almost a year after diagnosis? Well, nose over knees – remembering to walk with big steps – cleared to drive for at least another two years – gaining weight at a rate of knots – back at work but left to my own devices – casting about for something sensible to do long-term, and blogging could be one answer.
Who am I? Well, I’m 55, I used to have a good job in England, two kids, one wife and one degree, but that was then. Now in my second life I have a second wife, three degrees and work as a food scientist in Holland (I happen to be THE world expert on custard) … it’s a long story, and I might tell it some day. My co-author on this blog is Marie who I have been known to refer to as "my current wife" and who both edits and adds to my draft posts, and who is likely occasionally to bypass me and write posts from scratch.
I started to get back pain mid 2006. No-one could tell why, the pain kept getting worse, and with each visit to my GP the stakes got raised until I was taking absurd doses of morphine, anti-depressants and sleeping pills to no effect. Or should I say, to the effect that I was seriously and permanently smashed. In January 2007 I went to a conference in Canada and by then I couldn’t sit for more than a few minutes at a time – standing up most of the way across the Atlantic and through the sessions I went to was fun fun fun, and I didn’t take in much of what was going on around me anyway. An epidural injection on my return managed to make things worse, much much worse. If my back was smouldering before the epidural, then after it was a forest fire. Within days, I had to go for a job interview in UK – a disaster as apart from having to stand up throughout, the morphine was giving me major thirst so I drank water constantly and had to have toilet breaks every five minutes, plus probably talked complete gibberish. One day it will become a funny tale, but not yet. (Fortunuately, as it turned out, the job would have been totally wrong for me anyway.)
While all this back stuff was going on, I was getting quite shaky, especially in my right hand (I’m right-handed – yes, god hates me). Also I was getting stiffer, particularly in my back. The trouble was that the back pain was so bad it was obscuring everything else, and nobody seemed able to come up with a diagnosis that covered all my complaints, probably because it was difficult to work out what was the original, underlying problem.
But at last, after a year of X-rays and MRI scans and EMG, countless visits to my GP and physiotherapist and the pain clinic and two neurologists, after four months off sick from work driving both me and Marie mad with anxiety and irritation, finally:
DIAGNOSIS
followed quickly by the right pills to control the back pain (epilepsy drugs, if that makes any sense) and Symmetrel to start treating the PD.
For me the diagnosis came as a relief – it seemed so much better than the things I had by then convinced myself that I had, like multiple sclerosis or a brain tumor. It took some time to realize that the diagnosis was not actually all that much of a good thing. On the scale of afflictions, a sprained ankle would have been nice, but no: it has to be an incurable progressive bloody disease. It seems I need to prepare for a slow descent. I have some symptoms now, and PD being a progressive disease these will get worse – and every now and then I’ll get a new symptom for my collection. Ho bloody ho.
So, I was 54 when diagnosed. Most people are over 60 when they get the diagnosis, but usually you only call it early-onset if you are diagnosed before you are 40. So I’m stuck in the middle, with bloody-inconvenient-onset PD.
Anyway, the neurologist who diagnosed me suggested I should take another month or so of sick leave to adjust to the medicaion and the idea of PD, which I did. And then I went back to work. Most people were kind, if often uncomprehending, some were helpful – and the personnel department launched what felt like an all-out attack to get rid of me. But that too is a long story, which I will tell you later when I'm feeling up to it.
As for right now, almost a year after diagnosis? Well, nose over knees – remembering to walk with big steps – cleared to drive for at least another two years – gaining weight at a rate of knots – back at work but left to my own devices – casting about for something sensible to do long-term, and blogging could be one answer.
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