Hello, it’s Marie writing again. Is that because Jon is too busy to blog this week? Well, that’s exactly what he has agreed to let me talk about.
Jon has been on sick leave since early August, so getting on for 5 months. By law, he has been seen about every six weeks by a doctor appointed by his employer. This is Holland, though, so the doctor is not just there to catch out malingerers but also to assess whether people with long-term conditions, such as Jon, can somehow be eased back into some level of structured work. So far, the doctor has deemed at each visit that Jon is totally unfit for work and has apparently not felt there was any point in the employer making any special concessions since, presumably, this would be unlikely to have much effect.
At the same time, both Jon and I and the neurologist believe that Jon is now just about as well as he is ever going to be, physically and cognitively. He struggles with stiffness and difficulty bending and twisting (he said in an early blog that he now eats like a hobbit, but he sure moves more like an Ent), he tires easily both physically and mentally, and he still has some issues with short-term memory – though it is vastly better than on the previous PD meds.
So does that mean Jon will in fact never work again? We suspect that may in fact be the case. Whether or not you can continue in normal paid employment with Parkinson’s obviously depends to some extent on what your job is. So Jon has been able to continue working longer as a research scientist than he would have managed had he been a dentist in need of fine motor skills. On the other hand, with a less cognitively demanding job better suited to part-time working he might still have been able to carry on for some time longer. Hard to say, and I guess you just have to go with the hand you are dealt.
Let’s leave the mildly terrifying issue of what that means for our finances to one side – whatever happens, we will still be vastly better off than most people on the globe, so no whining (yet). Much more importantly right now is the question of what Jon is in fact supposed to do with himself and his time.
What does he want to do, what is he able to do, how much can he commit to doing? He has said in earlier blogs that there are many interesting and rewarding things he would like to do, and that he probably could do now although at a much reduced pace. He has several ideas for books he would like to write alone or with old colleagues, he continues to act as peer reviewer for several scientific journals, and he is kind of keen on the idea of taking up artsy photography, and he likes the idea of frequent holidays to interesting places. In the good old days before Parkinson’s, Jon was a complete monomaniac, totally obsessed with his work, so in a way I welcome these slightly broader interests.
BUT: what does Jon actually get done, then? Very little indeed, as far as I can see. And it’s hard, you know. Anyone who has had an extended period of unemployment knows how time just crumbles away to no purpose when you have too much of it. And even when you have something you want to do, a fairly clear goal, having too much time in which to achieve it – indeed, having no deadlines except those you set for yourself, and no colleagues or customers waiting for you to finish the task – can mean that nothing much gets achieved at all.
When you have all the time in the world, everything can wait until tomorrow, and nothing much matters anyway. So you end up sleeping late, wandering around the house in your dressing gown until midday, filling empty hours with pointless day-time TV. I know, I have been there, and now Jon is there. It’s not a happy, satisfying place to be – a break is only a break when it is a break from something; alone it cannot fill your life with any degree of satisfaction. And I can see that it is harder for Jon to find the motivation to dig himself out of this hole than it might be for most, because whatever task or hobby he takes on, he cannot be sure that the disease will allow him to continue or to finish it.
So what can one do? Well, we talk (some) and I try not to be too moralistic and prescriptive. We have also talked to our psychologist about it, and I should think we will again – he does ask some really incisive questions that we both spend quite some time mulling over. One area we both have to work on is sharing household responsibilities, partly as a way of giving some structure and purpose to Jon’s days. And now one of Jon’s co-authors on the book he has not been writing has set them both the challenge of finishing a draft chapter each by next weekend. Maybe that will kick-start something.
I just so wish that Jon could get really excited about something, the way he used to do. I miss the Jon who was so deeply engaged in whatever he was doing that the outside world (and me with it) just disappeared into insignificance. I don’t suppose that Jon exists anymore, but some approximation would be so very good
30 December 2008
22 December 2008
What we did on holiday
I have no intention of showing you all (or indeed any) of our 2000+ slides or of going into great detail, so suffice it to say we went on a guided tour through Cambodia, Vietnam and Singapore, and we had a great time.
We booked the trip earlier in the year when we were pretty optimistic about my health, and had some worrying months while I went downhill, so my improvement on the new PD meds came in the nick of time. In fact, having the new sleeping pills meant that I suffered much less jet lag than others in our group because I could control my sleep. And bliss, oh bliss, I was (and still am) sleeping normally – or what passes for normal when you have Parkinson’s and jerk about when you dream.
Going as part of a group (of 12) meant that I didn’t feel guilty about opting out of a few activities as that would not leave Marie with no-one to share with. So, instead of climbing about temples or crawling through Vietcong tunnels, I could take a nap in the bus and wait for the others (including an overweight and hyper-energetic 75-year-old grandmother) to get back. It also helped that everyone we travelled with, both tourists and guides, were really helpful and understanding. My bags were carried for me, I had first choice of seats, and was expertly handed in and out of numerous boats.
Another thing is that one of the symptoms that has had me most worried was my sudden aversion to coffee starting about 18 months ago. I used to drink gallons of the stuff, but suddenly it had a powerful acrid/burning smell. But I noted to my great delight that Vietnamese coffee smelt like coffee used to do. The difference, I think, is that the Viet coffee is sweetened with condensed milk (8% fat) and I suspect the high fat content absorbs whatever unpleasant component it is that I have become sensitized to. Oh, yes, and after very thorough testing I can also confirm that I now appear to tolerate beer really rather well again…
The last two days of the trip were interesting. Marie sprained her ankle getting onto the bus from the airport to the hotel. It looked painful and she said it was painful, but after sleeping with her foot in a bag of ice and borrowing a crutch from the concierge she was keen to do the night safari at Singapore zoo. I found it exhausting jogging to keep up with the woman. But seriously, you should have seen us when we first arrived at the hotel: she hobbled painfully straight to bed whence she directed me to ring for ice and fetch towels and pillows and dig out the painkillers and get the door and put the kettle on – and I performed a perfect pantomime of rushing around in slow motion. But it was good to be the one doing for once, rather than being done for.
So was the trip worth it? Yes, definitely – we got to spend a lot of time together in a stress-free environment, we got to feel immensely lucky and privileged compared to the locals, and we got to see and do and eat a lot of new and interesting stuff.
Back home, I have noticed that I am not doing so well on memory issues. Other people my age joke about senior moments, like when I forgot the name of the Prime Minister. Embarrassing at least, somewhat worrying at worst – I retrieved the name after 10-15 seconds, but they were a long few seconds. With Parkinson's, you know there’s a greater risk of dementia, so it’s harder to laugh off the lapses in memory. Do these lapses affect my ability to work? Well, I had another of my regular assessments with the work doctor who claimed to detect a slight improvement since he last saw me two months ago. He may be right, although I’m tempted to put my apparent improvement down to the mild sun tan I picked up whilst away. Anyhow, I’m still assessed as 0% fit for work, it just may be a slightly smaller zero this time.
We booked the trip earlier in the year when we were pretty optimistic about my health, and had some worrying months while I went downhill, so my improvement on the new PD meds came in the nick of time. In fact, having the new sleeping pills meant that I suffered much less jet lag than others in our group because I could control my sleep. And bliss, oh bliss, I was (and still am) sleeping normally – or what passes for normal when you have Parkinson’s and jerk about when you dream.
Going as part of a group (of 12) meant that I didn’t feel guilty about opting out of a few activities as that would not leave Marie with no-one to share with. So, instead of climbing about temples or crawling through Vietcong tunnels, I could take a nap in the bus and wait for the others (including an overweight and hyper-energetic 75-year-old grandmother) to get back. It also helped that everyone we travelled with, both tourists and guides, were really helpful and understanding. My bags were carried for me, I had first choice of seats, and was expertly handed in and out of numerous boats.
Another thing is that one of the symptoms that has had me most worried was my sudden aversion to coffee starting about 18 months ago. I used to drink gallons of the stuff, but suddenly it had a powerful acrid/burning smell. But I noted to my great delight that Vietnamese coffee smelt like coffee used to do. The difference, I think, is that the Viet coffee is sweetened with condensed milk (8% fat) and I suspect the high fat content absorbs whatever unpleasant component it is that I have become sensitized to. Oh, yes, and after very thorough testing I can also confirm that I now appear to tolerate beer really rather well again…
The last two days of the trip were interesting. Marie sprained her ankle getting onto the bus from the airport to the hotel. It looked painful and she said it was painful, but after sleeping with her foot in a bag of ice and borrowing a crutch from the concierge she was keen to do the night safari at Singapore zoo. I found it exhausting jogging to keep up with the woman. But seriously, you should have seen us when we first arrived at the hotel: she hobbled painfully straight to bed whence she directed me to ring for ice and fetch towels and pillows and dig out the painkillers and get the door and put the kettle on – and I performed a perfect pantomime of rushing around in slow motion. But it was good to be the one doing for once, rather than being done for.
So was the trip worth it? Yes, definitely – we got to spend a lot of time together in a stress-free environment, we got to feel immensely lucky and privileged compared to the locals, and we got to see and do and eat a lot of new and interesting stuff.
Back home, I have noticed that I am not doing so well on memory issues. Other people my age joke about senior moments, like when I forgot the name of the Prime Minister. Embarrassing at least, somewhat worrying at worst – I retrieved the name after 10-15 seconds, but they were a long few seconds. With Parkinson's, you know there’s a greater risk of dementia, so it’s harder to laugh off the lapses in memory. Do these lapses affect my ability to work? Well, I had another of my regular assessments with the work doctor who claimed to detect a slight improvement since he last saw me two months ago. He may be right, although I’m tempted to put my apparent improvement down to the mild sun tan I picked up whilst away. Anyhow, I’m still assessed as 0% fit for work, it just may be a slightly smaller zero this time.
06 November 2008
Off on tour
My daughter and baby grandson visited last week (hence too much excitement to find time to blog – sorreee). It gave me a real boost to have them here. Not that we actually did much as such, other than a few walks and meals, but that is how I like it best: behaving like we have all the time in the world even if we live hundreds of miles apart. It was particularly good to be able to demonstrate that although Parkinson’s is obviously not going to go away, I am a lot better now than I was last time I saw my daughter.
Drugswise, I have now been Sifrol-free for three weeks and have, I think, just about found the right dose of Sinemet (proper L-dopa). And the change has worked wonders both physically and cognitively. I’m not back to my old self from before the disease set in, but I am at a level that can deliver a perfectly acceptable quality of life. And it’s not just me saying that, either. I had another of my regular assessments by the works doctor, who saw a great deal of improvement. He suggested occupational therapy might be a good idea, and I agree absolutely. Although the idea of retirement at 55 has its temptations, I suspect that doing something useful is actually better for the soul.
Somewhat disappointingly, though, it turns out that the doctor thinks the various tasks I have already devised for myself to do at home constitute sufficient occupational therapy for now. Oh well – I guess the only thing work would be able to suggest would be editing scientific papers for colleagues who need their English checking, which would be neither particularly interesting nor stressful. BTW, since I was in the building anyway, I poked my head round my old door and found that my desk has already been reassigned to someone else. Is that some kind of heavy hint?
Anyway, I am in fact pretty busy at home this week. We’re off on a 3-week holiday this weekend and there is a whole list of things to do before we leave. I promised to write some simple software and have just one last bug to fix before I can deliver (which will be a small triumph, considering my failure with another simple programming task earlier this year). It’s for a study where we measure reaction times with and without a background aroma which is a bit too close to aromatherapy for my comfort, actually. I mean, how open a mind can you keep before your brain falls out?
Also, I foolishly agreed to review a scientific paper. This is normally a simple task: either respond that YES, this is quality work that should be published forthwith or NO, this is derivative rubbish. Unfortunately, while the paper I’ve been given appears to be okay scientifically, the English is so abysmal that it is backbreaking work to suss out exactly what the authors mean. Until I’ve translated the thing into something more readily comprehensible I cannot be sure which way my thumb should point.
And I have to write a 4-page potted autobiography for our shrink, who we saw for the first time two weeks ago. The referral we had from our GP stated that the aim was to make life with PD liveable, and that strikes me as a fine ambition. One early hurdle – or perhaps the major, or even only hurdle – is to reconcile the diametrically opposite ways that Marie and I each deal with and react to my PD. To which end he has asked us each for a short history of how we became the people we are today. How does one fit a life onto 4 pages? My work CV alone runs to 18 pages. Well, I suppose I could leave out the dull bits, but then how would I fill the other 3 pages? No seriously, there must be 4 pages worth of almost interesting stuff in 55 years of life – ‘your mother did what?!? No wonder you’re messed up!’
Last but by no means least, I have to pack. We’ll be travelling through Cambodia, Vietnam and Singapore. Now, according to CNN’s weather forecast, most of Southeast Asia is under water, suffering the worst floods for many years, so I expect humid and muddy and frequent changes of clothes. We’ll be on a tour with up to 10 other tourists and I also can’t help but worry that I might hold everyone up as I struggle in and out of car seats or delay morning departures because the drugs haven’t kicked in enough to allow me to get dressed. However, I suspect this could be my basic glass-half-empty approach kicking in and that in fact I will have rather a brilliant time. I’ll be back again to tell you about it in the beginning of December.
Drugswise, I have now been Sifrol-free for three weeks and have, I think, just about found the right dose of Sinemet (proper L-dopa). And the change has worked wonders both physically and cognitively. I’m not back to my old self from before the disease set in, but I am at a level that can deliver a perfectly acceptable quality of life. And it’s not just me saying that, either. I had another of my regular assessments by the works doctor, who saw a great deal of improvement. He suggested occupational therapy might be a good idea, and I agree absolutely. Although the idea of retirement at 55 has its temptations, I suspect that doing something useful is actually better for the soul.
Somewhat disappointingly, though, it turns out that the doctor thinks the various tasks I have already devised for myself to do at home constitute sufficient occupational therapy for now. Oh well – I guess the only thing work would be able to suggest would be editing scientific papers for colleagues who need their English checking, which would be neither particularly interesting nor stressful. BTW, since I was in the building anyway, I poked my head round my old door and found that my desk has already been reassigned to someone else. Is that some kind of heavy hint?
Anyway, I am in fact pretty busy at home this week. We’re off on a 3-week holiday this weekend and there is a whole list of things to do before we leave. I promised to write some simple software and have just one last bug to fix before I can deliver (which will be a small triumph, considering my failure with another simple programming task earlier this year). It’s for a study where we measure reaction times with and without a background aroma which is a bit too close to aromatherapy for my comfort, actually. I mean, how open a mind can you keep before your brain falls out?
Also, I foolishly agreed to review a scientific paper. This is normally a simple task: either respond that YES, this is quality work that should be published forthwith or NO, this is derivative rubbish. Unfortunately, while the paper I’ve been given appears to be okay scientifically, the English is so abysmal that it is backbreaking work to suss out exactly what the authors mean. Until I’ve translated the thing into something more readily comprehensible I cannot be sure which way my thumb should point.
And I have to write a 4-page potted autobiography for our shrink, who we saw for the first time two weeks ago. The referral we had from our GP stated that the aim was to make life with PD liveable, and that strikes me as a fine ambition. One early hurdle – or perhaps the major, or even only hurdle – is to reconcile the diametrically opposite ways that Marie and I each deal with and react to my PD. To which end he has asked us each for a short history of how we became the people we are today. How does one fit a life onto 4 pages? My work CV alone runs to 18 pages. Well, I suppose I could leave out the dull bits, but then how would I fill the other 3 pages? No seriously, there must be 4 pages worth of almost interesting stuff in 55 years of life – ‘your mother did what?!? No wonder you’re messed up!’
Last but by no means least, I have to pack. We’ll be travelling through Cambodia, Vietnam and Singapore. Now, according to CNN’s weather forecast, most of Southeast Asia is under water, suffering the worst floods for many years, so I expect humid and muddy and frequent changes of clothes. We’ll be on a tour with up to 10 other tourists and I also can’t help but worry that I might hold everyone up as I struggle in and out of car seats or delay morning departures because the drugs haven’t kicked in enough to allow me to get dressed. However, I suspect this could be my basic glass-half-empty approach kicking in and that in fact I will have rather a brilliant time. I’ll be back again to tell you about it in the beginning of December.
19 October 2008
Taking stock
In the long term we are all dead. Another safe prediction is that tomorrow is very likely to be much the same as today, so in the short term we seem to be OK – it’s the medium term we need to watch out for. As progressive neurological diseases go, PD is less nasty than some: not fatal of itself, but not a recipe for a bright future either.
A gloomy start, perhaps, since in fact I’m feeling slightly upbeat today. The new pill regime is taking effect at last. I am almost 100% weaned from the Sifrol (dopamine agonist) and onto Sinemet (levodopa). My tremor has improved, I’m sleeping almost normally, I walk significantly better, my muscles are a lot less stiff, my posture is much improved, and as a surprising last effect my appetite is back to normal proportions. There’s still 10 kg to go before my weight is back to where it should be, but I am already down one trouser size.
I’ve even done some driving. I keep it slow and steady, but that’s really just paranoia. My reaction times seem normal (I’ve been using the pencil grasp test), and the only lingering issue is that I find the level of concentration needed for driving rather stressful so am best on short journeys. Which is enough to set me free to go, if not where-ever I wish, then many places I wish. And it sets Marie free to not go where-ever I wish which clearly makes her daily schedule rather easier.
(Speaking of Marie, I am happy to report that we are doing a lot better than we were a week ago when she posted her somewhat pained text. I don’t know what did it, but after an immense amount of talking – mostly on her part – we finally seemed to hear each other, and have been getting on very much better since.)
Am I back now to where I was before my diagnosis? I think not. For instance, I have a scientific paper to review, and I’m finding it hard work (even though it’s based on work I did a few years back, which is flattering).
So the big inquisitive elephant in the corner is asking: is it time to start thinking about a return to work?? My feeling is that full time would be overly ambitious. My concentration flags after a while, and I still feel I need a nap most afternoons. My short term memory is also a problem. Stuff I did 2-3 years ago is crystal clear, but I can read the same recent article over and over again without the information sticking. Will I ever learn new stuff, or am I doomed to repeating the same Sisyfean learning task over and over again?
In the medium term the only direction is down, so do I go back to work part-time for a bit before throwing in the towel, or do I (and my employer) accept the inevitable and give up now? If the latter, I should try to find some less demanding, less academic work to do. Software writing (99% repeated from prior work and 1% demandingly original)? Freelance journal editor (stay up-to-date with science without actually having to do any myself)? Write the great Anglo-Dutch novel? Blog obsessively?
A gloomy start, perhaps, since in fact I’m feeling slightly upbeat today. The new pill regime is taking effect at last. I am almost 100% weaned from the Sifrol (dopamine agonist) and onto Sinemet (levodopa). My tremor has improved, I’m sleeping almost normally, I walk significantly better, my muscles are a lot less stiff, my posture is much improved, and as a surprising last effect my appetite is back to normal proportions. There’s still 10 kg to go before my weight is back to where it should be, but I am already down one trouser size.
I’ve even done some driving. I keep it slow and steady, but that’s really just paranoia. My reaction times seem normal (I’ve been using the pencil grasp test), and the only lingering issue is that I find the level of concentration needed for driving rather stressful so am best on short journeys. Which is enough to set me free to go, if not where-ever I wish, then many places I wish. And it sets Marie free to not go where-ever I wish which clearly makes her daily schedule rather easier.
(Speaking of Marie, I am happy to report that we are doing a lot better than we were a week ago when she posted her somewhat pained text. I don’t know what did it, but after an immense amount of talking – mostly on her part – we finally seemed to hear each other, and have been getting on very much better since.)
Am I back now to where I was before my diagnosis? I think not. For instance, I have a scientific paper to review, and I’m finding it hard work (even though it’s based on work I did a few years back, which is flattering).
So the big inquisitive elephant in the corner is asking: is it time to start thinking about a return to work?? My feeling is that full time would be overly ambitious. My concentration flags after a while, and I still feel I need a nap most afternoons. My short term memory is also a problem. Stuff I did 2-3 years ago is crystal clear, but I can read the same recent article over and over again without the information sticking. Will I ever learn new stuff, or am I doomed to repeating the same Sisyfean learning task over and over again?
In the medium term the only direction is down, so do I go back to work part-time for a bit before throwing in the towel, or do I (and my employer) accept the inevitable and give up now? If the latter, I should try to find some less demanding, less academic work to do. Software writing (99% repeated from prior work and 1% demandingly original)? Freelance journal editor (stay up-to-date with science without actually having to do any myself)? Write the great Anglo-Dutch novel? Blog obsessively?
12 October 2008
A good moan
Hello, it’s Marie again. We promised in one of the early blogs to give a bit of background to what came before the blog started. Since this has been a praticularly horrid week, we thought I should take the opportunity to give you a whistle-stop tour of our private Hades, taking it up to date with the latest set-back.
When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.
First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).
When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.
This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.
We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.
There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.
And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.
This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.
When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.
First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).
When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.
This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.
We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.
There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.
And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.
This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.
09 October 2008
Inspections
We live in interesting times, they say, and that is probably true for some outlandish value of ‘interesting’.
A number of people have indicated their desire to inspect me to ascertain that I am indeed as ill as I claim to be. Thus, I saw my employers’ tame doctor the other day. This involves a 50 minute drive, a 5 minute visit to confirm my condition (that’s 1 minute for Doc to say ‘how are you’ and me to say ‘poor’ and him to say ‘yes, I can see that’, and then 4 minutes to work my way out of the visitors’ chair), and a 50 minute drive home. On the up side, I still don’t feel safe to drive, so this translates into two 49 minute naps for me and a waste of time for Marie.
Coming up soon is a similar visit to my new boss, which I expect to be an almost exact rerun of the work doc visits. Oh well, it gets me out of the house. Seriously, though, work has a legal obligation to do their bestest to rehabilitate me into some form of gainful activity, so maybe New Boss wants to chat about that. I don’t see much scope at the moment, but live in hope.
Interesting event of the week: New Boss is of course much to grand to make his own appointments, so a lady minion rang me. After arranging a time, she was kind enough to express the wish that I ‘get well soon’. Oh yes right – they just discovered PD isn’t incurable and degenerative after all, didn’t they? Actually, this ‘get well soon’ is particularly funny coming from a woman I happen to know is confined to a wheelchair. The power of social convention is surpassing strong!
A number of people have indicated their desire to inspect me to ascertain that I am indeed as ill as I claim to be. Thus, I saw my employers’ tame doctor the other day. This involves a 50 minute drive, a 5 minute visit to confirm my condition (that’s 1 minute for Doc to say ‘how are you’ and me to say ‘poor’ and him to say ‘yes, I can see that’, and then 4 minutes to work my way out of the visitors’ chair), and a 50 minute drive home. On the up side, I still don’t feel safe to drive, so this translates into two 49 minute naps for me and a waste of time for Marie.
Coming up soon is a similar visit to my new boss, which I expect to be an almost exact rerun of the work doc visits. Oh well, it gets me out of the house. Seriously, though, work has a legal obligation to do their bestest to rehabilitate me into some form of gainful activity, so maybe New Boss wants to chat about that. I don’t see much scope at the moment, but live in hope.
Interesting event of the week: New Boss is of course much to grand to make his own appointments, so a lady minion rang me. After arranging a time, she was kind enough to express the wish that I ‘get well soon’. Oh yes right – they just discovered PD isn’t incurable and degenerative after all, didn’t they? Actually, this ‘get well soon’ is particularly funny coming from a woman I happen to know is confined to a wheelchair. The power of social convention is surpassing strong!
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.
22 September 2008
Big boys' drugs
My appointments with my speech therapist appear soon to be coming to an end – because, to my surprise, the therapy has worked. I admit that when the therapist asked me during my first appointment with her what I expected to get out of the treatment, I told her that my expectations were very low and that I predicted she would have a problem getting me to do the exercises she prescribed. Her answer then was both startling and honest: she would have no problem at all, but I might have one. Out of the mouthes of babes and therapists, eh? Somewhat uncharacteristically, I took this to heart, and with a wife nagging in the background have in fact been reasonably good (though far from perfect) about doing my exercises.
The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.
As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.
As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.
This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!
The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.
As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.
As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.
This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!
16 September 2008
Driving (me nuts)
Right. I’ve just come back from spending rather a lot longer with my in-laws than either I or they had planned (though to everyone’s great credit, without any actual physical or mental damage being done to me, them – or indeed to my wife).
Plan A was for Marie to go to Denmark on her own a fortnight ago so that I could enjoy a quiet week home alone with one cat and several family-sized packs of English bacon while she did whatever it is she does for money. I would then fly up to join her for a long weekend of socializing before returning home together at the sort of leisurely pace generally set on the German motorways.
However. This was before we started reducing my medication and bringing back some semblance of a sane mind, and we had to agree that it was not, at that time, safe to leave me alone. So Plan B was set in motion, involving extended cat minding, a long and lonely drive for Marie while I snored and fidgeted in the passenger seat, and writing off the cost of my plane ticket which was of course much too cheap to be refundable. Plus, I should think, a certain amount of scurrying about in the ancestral home where they had not reckoned on my delightful presence quite so soon.
And when I got to Denmark, what did I do but … sleep some more. This insomnia stuff really is ridiculous: I can’t sleep at night, and can’t stay awake during the day. In a nutshell, the trouble is that once I fall asleep, I can’t stay asleep. Ten, maybe fifteen minutes under is all I get before some twitch or spasm wakes me up again. Many short naps makes the night feel like I have hardly slept at all, and the day feel like I hardly do anything but sleep, neither of which are the least bit satisfactory. For the record, my neurologist is supposed to be making me an appointment with the hospital’s sleep clinic – I am looking forward to an interesting night and hopefully a useful analysis.
Driving for myself has also become an issue. I was tested sometime in the spring and pronounced fit to drive anything with an automatic gear box. But I felt a lot better when I took that test than I do now, even with my mental faculties (largely) recouped. It’s an issue of independence, though, and of some practicality. For instance, Marie was unwell the other day when we had a birthday party to go to, so I decided to go alone. By car. Happily, going out was no problem – but coming back was much more … interesting. My driving foot had seized up, so I had terrible trouble getting my foot to the gas pedal, and even when I succeeded at that, there was not much I could do with it – the thing was just like a lump of dead wood. Salvation lay in taking shoes and socks off (with some help from the host who may have invited me for the last time). Once I could touch my feet with my hands, I regained feeling in them and all went well on my barefooted drive home.
The episode freaked me some, I must admit, and my first reaction was that I should leave off driving for a little while longer. Marie, however, does not deal well with such timidity, so despite my best efforts and some really rather creative excuses, I have spent much of the day practicing my driving with her looming in the passenger seat. Which is just as well, really, because she is off on some other work jaunt in a few days so if I can’t drive myself I’ll miss three lovely therapy sessions and most likely get cabin fever into the bargain. But now, freaking and anxiety behind me, I can spend the days pootling along at the safest of paces and watching in the mirror as the workaholic in the car behind me gets furiouser and furiouser. Could be worse.
Plan A was for Marie to go to Denmark on her own a fortnight ago so that I could enjoy a quiet week home alone with one cat and several family-sized packs of English bacon while she did whatever it is she does for money. I would then fly up to join her for a long weekend of socializing before returning home together at the sort of leisurely pace generally set on the German motorways.
However. This was before we started reducing my medication and bringing back some semblance of a sane mind, and we had to agree that it was not, at that time, safe to leave me alone. So Plan B was set in motion, involving extended cat minding, a long and lonely drive for Marie while I snored and fidgeted in the passenger seat, and writing off the cost of my plane ticket which was of course much too cheap to be refundable. Plus, I should think, a certain amount of scurrying about in the ancestral home where they had not reckoned on my delightful presence quite so soon.
And when I got to Denmark, what did I do but … sleep some more. This insomnia stuff really is ridiculous: I can’t sleep at night, and can’t stay awake during the day. In a nutshell, the trouble is that once I fall asleep, I can’t stay asleep. Ten, maybe fifteen minutes under is all I get before some twitch or spasm wakes me up again. Many short naps makes the night feel like I have hardly slept at all, and the day feel like I hardly do anything but sleep, neither of which are the least bit satisfactory. For the record, my neurologist is supposed to be making me an appointment with the hospital’s sleep clinic – I am looking forward to an interesting night and hopefully a useful analysis.
Driving for myself has also become an issue. I was tested sometime in the spring and pronounced fit to drive anything with an automatic gear box. But I felt a lot better when I took that test than I do now, even with my mental faculties (largely) recouped. It’s an issue of independence, though, and of some practicality. For instance, Marie was unwell the other day when we had a birthday party to go to, so I decided to go alone. By car. Happily, going out was no problem – but coming back was much more … interesting. My driving foot had seized up, so I had terrible trouble getting my foot to the gas pedal, and even when I succeeded at that, there was not much I could do with it – the thing was just like a lump of dead wood. Salvation lay in taking shoes and socks off (with some help from the host who may have invited me for the last time). Once I could touch my feet with my hands, I regained feeling in them and all went well on my barefooted drive home.
The episode freaked me some, I must admit, and my first reaction was that I should leave off driving for a little while longer. Marie, however, does not deal well with such timidity, so despite my best efforts and some really rather creative excuses, I have spent much of the day practicing my driving with her looming in the passenger seat. Which is just as well, really, because she is off on some other work jaunt in a few days so if I can’t drive myself I’ll miss three lovely therapy sessions and most likely get cabin fever into the bargain. But now, freaking and anxiety behind me, I can spend the days pootling along at the safest of paces and watching in the mirror as the workaholic in the car behind me gets furiouser and furiouser. Could be worse.
08 September 2008
Mea culpa
Writing a blog has an element of the confessional about it: “forgive me, for I have sinned (against my own unwritten rules of blogging frequency)”. While it may not warrant 200 Hail Maries and a spot of flagellation, the guilt trip is certainly there – and more interestingly (to me, anyway), I find that I have missed my weekly session of catching up and reviewing the events of the past seven or so days. So, it is two weeks since my last confession ... and some stuff has happened.
My last blog was pretty downcast, really, as I was frankly scared out of my meagre wits that I was on the not-so-slow road to dementia. Now, though, although life is by no means back to normal (and what is “normal” anyway with a progressive disease?), it has I think been proven that most – perhaps all – my cognitive problems stem from side effects and combined effects of my drugs. I’ve talked to my neurologist twice when she has adjusted various medications to see what effect that would have on my mental state, and joy of joys: my brain is starting to work again. The relief!!
The trouble is, of course, that while my medication may be doing me some harm, I also cannot live without it, so I expect I am now in for an extended period of experimentation with drug doses and brands. For now, I’m physically at that exasperating stop/go crossroads between shaking and sticking to the floor, but to be honest I was probably under-medicated for the shakes before, so the difference is not that huge. I also still can’t sleep more than a few hours each night – BUT the mental change on reduced drug levels is just wonderful. Ask me what 4 times 4 is and I will confidently tell you 16 – and did you know that 16 times 2 is 32 – and 32 times 2 is ...mmm... 43? I clearly still have some work to do, but it is grand to know that there is light at the end of the tunnel, and the faint whiff of hope in the wind.
It also helps to talk. That is partly what writing this blog does for me, but it is also really good when we have an opportunity to sit down with others in the know and have a good moan. We know a number of people who are in a similar, but not identical, position to us. There is multiple schlerosis (MS), a bad case of rheumatoid arthritis, an unusual combination of degenerative spinal problems, and a case of un-diagnosable severe malaise among our nearest friends and family. These are all progressive diseases, and all can of course be miserable at times, and bloody miserable at other times. Many of the issues, concerns, fears and coping strategies are similar, so it is good to share our war stories, collect helpful thoughts and advice (we’re still too new at this game to dispense advice), and just occasionally have a full-blown moan – all stuff that would probably bore the pants of anyone else, but which becomes fascinating when it applies to YOU.
On a more amusing note, I’ve become stuck in toilets not once but on four separate occasions this week. The problem stems from being in Denmark (family visit and Marie's work), where people seem to be smaller (well, at least narrower) than me. I can get into the loo no problem, but then on attempting to leave I find myself with frozen muscles, stuck staring at a blank wall and unable in the tight space to turn round towards the door. With some considerable effort I have managed each time to force my growing bulk round and out, but will I always be able to? In fact, when I went during a ferry trip, Marie who was waiting with increasing apprehension outside the men’s room ended up sending in some hapless tourist to check for “a guy in a black T-shirt who might need help”. Fortunately half the men in there were wearing black shirts, so I narrowly escaped embarrassment. I know she means well, but honestly! On the trip back in a few days’ time I plan to stick strictly to a dry diet of peanuts and saltines.
My last blog was pretty downcast, really, as I was frankly scared out of my meagre wits that I was on the not-so-slow road to dementia. Now, though, although life is by no means back to normal (and what is “normal” anyway with a progressive disease?), it has I think been proven that most – perhaps all – my cognitive problems stem from side effects and combined effects of my drugs. I’ve talked to my neurologist twice when she has adjusted various medications to see what effect that would have on my mental state, and joy of joys: my brain is starting to work again. The relief!!
The trouble is, of course, that while my medication may be doing me some harm, I also cannot live without it, so I expect I am now in for an extended period of experimentation with drug doses and brands. For now, I’m physically at that exasperating stop/go crossroads between shaking and sticking to the floor, but to be honest I was probably under-medicated for the shakes before, so the difference is not that huge. I also still can’t sleep more than a few hours each night – BUT the mental change on reduced drug levels is just wonderful. Ask me what 4 times 4 is and I will confidently tell you 16 – and did you know that 16 times 2 is 32 – and 32 times 2 is ...mmm... 43? I clearly still have some work to do, but it is grand to know that there is light at the end of the tunnel, and the faint whiff of hope in the wind.
It also helps to talk. That is partly what writing this blog does for me, but it is also really good when we have an opportunity to sit down with others in the know and have a good moan. We know a number of people who are in a similar, but not identical, position to us. There is multiple schlerosis (MS), a bad case of rheumatoid arthritis, an unusual combination of degenerative spinal problems, and a case of un-diagnosable severe malaise among our nearest friends and family. These are all progressive diseases, and all can of course be miserable at times, and bloody miserable at other times. Many of the issues, concerns, fears and coping strategies are similar, so it is good to share our war stories, collect helpful thoughts and advice (we’re still too new at this game to dispense advice), and just occasionally have a full-blown moan – all stuff that would probably bore the pants of anyone else, but which becomes fascinating when it applies to YOU.
On a more amusing note, I’ve become stuck in toilets not once but on four separate occasions this week. The problem stems from being in Denmark (family visit and Marie's work), where people seem to be smaller (well, at least narrower) than me. I can get into the loo no problem, but then on attempting to leave I find myself with frozen muscles, stuck staring at a blank wall and unable in the tight space to turn round towards the door. With some considerable effort I have managed each time to force my growing bulk round and out, but will I always be able to? In fact, when I went during a ferry trip, Marie who was waiting with increasing apprehension outside the men’s room ended up sending in some hapless tourist to check for “a guy in a black T-shirt who might need help”. Fortunately half the men in there were wearing black shirts, so I narrowly escaped embarrassment. I know she means well, but honestly! On the trip back in a few days’ time I plan to stick strictly to a dry diet of peanuts and saltines.
25 August 2008
Disappointment
I said last week that I had at last been given a magically wonderful drug that had the power to get me to sleep and keep me asleep for more than the usual hour or two at a stretch. Well, that didn’t last, and I’m now if not quite as bad as I ever was, then not a whole lot better off either. The height of your hopes is of course directly related to the depths of your disappointment, so you can imagine how I feel about that.
My body is falling apart around me. It is beginning to give me symptoms that really do not, repeat not, belong this early on in the disease. I’ve got the shakes really bad on my right side, feet stubbornly sticking to the floor, I’m hoarse and dry mouthed, my short-term memory is pitiful and I get confused over the simplest things, I have absolutely no energy whatsoever but can’t sit or lie still for long enough to get the sleep I so desperately need. Some of this might be side effects of drugs, some might be plain ageing, and some might be PD symptoms that are or aren't treatable – I just really, really wish someone would work it out and help get me on a more even keel. Right now would not be a moment too soon.
Also somewhat storm-tossed this week is my relationship with my wife. Before PD I was an uncommunicative soul. ‘G’morning’ and ‘g’night’ might be all I said to her or anyone else all day, and perhaps ‘what’s for pudding?’ on weekends. Much of the time I lived inside my own obsessive world of work and science, failing to hear phones and door bells ringing, and indeed failing to hear much of what Marie might choose to say. This state of bliss was apparently preferable to the situation now, where I follow her around like a wet dog, demonstrating my affection at every opportunity and expecting confirmation in return. Her worst nightmare: a demonstrative husband. Okay, I can see that if she chose to marry me as I was before, then she too must have been busy with her own life and this new me is perhaps not what she wanted. But honestly: females, eh? There’s no pleasing them (and apparently no shooting them either).
It all relates, though, to a question Marie asked me the other day: how do I want to spend the rest of my life? What gives me pleasure, what gives meaning and content to my life, what is realistically achievable now with PD? This is not a simple question. I always used to think I’d keep working until they barred the doors to the lab, so I am not taking that easily to the idea of early (semi?)-retirement.
Answers range from ‘If it stays like this I'm jumping of a cliff ASAP’ (though perhaps a slightly empty threat seeing that we live in The aptly-named Netherlands), via ‘Doing some good somewhere’ (as if, Miss Idaho!), to ‘Having a good time’ (but what is ‘a good time’, and can pretending life is one long weekend really have meaning?). Seriously, there are things I want to do, but I am still unsure whether mind and body will hold up to doing them. I want to write Books of Learned Science, I want to write books of lighter learning to show that science is fun and relevant to daily life. I could also see myself taking up angling – first collecting the gear and getting anoraky about flies, then the Zen of sitting quietly and waiting for something to bite. I’m quite keen on nature photography (no, the other kind of nature photography), and #2 wants me to build chicken runs and rabbit hutches for all the livestock she plans to keep and eat when we move to a larger garden.
But meanwhile, what really gets done around here? Well, I dutifully go for my walk every day, but I often “forget” to do my voice exercises and my stretches. I just about manage to stay on level terms with my e-mail intray, but there have been two articles following me around like a bad smell for weeks now, one that I am supposed to proof-read and one where I am supposed to respond to editorial critique. Well, at least I manage to get this blog done.
Which leads to my last point today. The comment has been made: if you can write this blog, things can’t be quite as bad as you say, can they? Well now, I never thought real men bothered with spelling and punctuation – that was for nit-picking, train-spotting stamp collectors (and Lynne Truss). Getting the message across was what mattered, function over form for me every time. But now my typing is so abysmal that Marie has to fix it if anyone is understand a word I write, and by mutual agreement that means she also adds in various bits of fact and background, and allows her own perspective to shine through here and there. For instance, my input for part of the above read:
You can see the kind of issues of impartiality this can also throw up… That’s a big part of the point of this blog, though, to provide a weekly opportunity for me and her to talk about what has happened, what we think about it, and why the other is wrong. Well, it works for us.
My body is falling apart around me. It is beginning to give me symptoms that really do not, repeat not, belong this early on in the disease. I’ve got the shakes really bad on my right side, feet stubbornly sticking to the floor, I’m hoarse and dry mouthed, my short-term memory is pitiful and I get confused over the simplest things, I have absolutely no energy whatsoever but can’t sit or lie still for long enough to get the sleep I so desperately need. Some of this might be side effects of drugs, some might be plain ageing, and some might be PD symptoms that are or aren't treatable – I just really, really wish someone would work it out and help get me on a more even keel. Right now would not be a moment too soon.
Also somewhat storm-tossed this week is my relationship with my wife. Before PD I was an uncommunicative soul. ‘G’morning’ and ‘g’night’ might be all I said to her or anyone else all day, and perhaps ‘what’s for pudding?’ on weekends. Much of the time I lived inside my own obsessive world of work and science, failing to hear phones and door bells ringing, and indeed failing to hear much of what Marie might choose to say. This state of bliss was apparently preferable to the situation now, where I follow her around like a wet dog, demonstrating my affection at every opportunity and expecting confirmation in return. Her worst nightmare: a demonstrative husband. Okay, I can see that if she chose to marry me as I was before, then she too must have been busy with her own life and this new me is perhaps not what she wanted. But honestly: females, eh? There’s no pleasing them (and apparently no shooting them either).
It all relates, though, to a question Marie asked me the other day: how do I want to spend the rest of my life? What gives me pleasure, what gives meaning and content to my life, what is realistically achievable now with PD? This is not a simple question. I always used to think I’d keep working until they barred the doors to the lab, so I am not taking that easily to the idea of early (semi?)-retirement.
Answers range from ‘If it stays like this I'm jumping of a cliff ASAP’ (though perhaps a slightly empty threat seeing that we live in The aptly-named Netherlands), via ‘Doing some good somewhere’ (as if, Miss Idaho!), to ‘Having a good time’ (but what is ‘a good time’, and can pretending life is one long weekend really have meaning?). Seriously, there are things I want to do, but I am still unsure whether mind and body will hold up to doing them. I want to write Books of Learned Science, I want to write books of lighter learning to show that science is fun and relevant to daily life. I could also see myself taking up angling – first collecting the gear and getting anoraky about flies, then the Zen of sitting quietly and waiting for something to bite. I’m quite keen on nature photography (no, the other kind of nature photography), and #2 wants me to build chicken runs and rabbit hutches for all the livestock she plans to keep and eat when we move to a larger garden.
But meanwhile, what really gets done around here? Well, I dutifully go for my walk every day, but I often “forget” to do my voice exercises and my stretches. I just about manage to stay on level terms with my e-mail intray, but there have been two articles following me around like a bad smell for weeks now, one that I am supposed to proof-read and one where I am supposed to respond to editorial critique. Well, at least I manage to get this blog done.
Which leads to my last point today. The comment has been made: if you can write this blog, things can’t be quite as bad as you say, can they? Well now, I never thought real men bothered with spelling and punctuation – that was for nit-picking, train-spotting stamp collectors (and Lynne Truss). Getting the message across was what mattered, function over form for me every time. But now my typing is so abysmal that Marie has to fix it if anyone is understand a word I write, and by mutual agreement that means she also adds in various bits of fact and background, and allows her own perspective to shine through here and there. For instance, my input for part of the above read:
I'ev become her own worst nightmare – a husand who cares, and os demostrativ e with his before the PD I was an ncomunacitive soul, g'm mornong and perhahs were the only things I'd SAYY AALL DAY, But is turns out this is preferablt to being ffolowed round like a lapdog,, ho hum females eh there is no pleasing trhem … '
You can see the kind of issues of impartiality this can also throw up… That’s a big part of the point of this blog, though, to provide a weekly opportunity for me and her to talk about what has happened, what we think about it, and why the other is wrong. Well, it works for us.
17 August 2008
I slept!
You might remember that I saw my neurologist a few weeks ago and begged her to do something about my insomnia, sleepwalking and night-time hallucinations. She diagnosed a probable REM sleep disorder. “Great”, thought the wife and I. “diagnosis precedes treatment which precedes cure (or at least improvement)”. The neurologist would consult the resident expert on REM sleep and post a prescription to me forthwith.
Well, forthwith wasn’t as quick as I expected, and time passes slowly when your head feels like a medical emergency. A week and a bit went by, then Marie rang the hospital and left a message of some desperation. Another couple of days passed, before I took things into my own hands and went to see my GP, armed with the neurologist’s tentative diagnosis. The GP happily dispensed drug A (he’s quite keen on drugs for a Dutch doctor). It was wonderful! I slept that night for the first time in months, just slept and slept and slept, almost 12 hours straight. It was absolutely glorious! Marie tells me she kept creeping into the bedroom just to enjoy the sound of my snoring.
And wouldn’t you know: the following day, as if by magic, a prescription arrives from the neurologist for drug B, a rather less powerful version of the same class of drug the GP gave me (without the benefit of expert advice). I don’t sleep like a teenager with drug B, and I feel alert enough to drive … but ooh, do I miss drug A and its lovely sledgehammer effect!
The other development of the week is that I have stopped seeing the nice physiotherapist round the corner who did the best he could for me but who I think was beginning to feel that his bag of tricks was getting rather empty. Instead, I will now go to the neighbouring town twice a week to see a specialist in movement disorders (Mensendieck therapy, if that means anything to you).
It’s early days yet, but I am feeling hopeful about this. Ms Mensendieck seems quite unfazed by my many complaints and inabilities, and she focuses on treating the causes of my problems with exercises that I can also do at home, rather than focusing (as did my previous physiotherapist) on treating the symptoms with massages and other muscle stimulation. I guess Marie will just have to take over the massages, and she is already used to giving me frequent short buzzes with the domestic sander (yes, sander) that physio #1 suggested might give some immediate relief from my back pain.
The nice Ms Mensendieck has already given me a present, a rather peculiar CD with advice on how to carry out daily activities despite having Parkinson’s. There is the slight issue with this CD that (a) it is in Dutch which I don’t speak and (b) it has been organized by a stamp collector into minute and repetitive sections, but nevertheless (c) it appears to contain valuable advice that Marie can help me decipher (not being English, she has no phobia about foreign languages).
Now I am just hoping – so very hard – that the next few weeks will prove that all my fears about aggressive forms of Parkinson’s are quite mistaken, and that many good nights’ sleep (and a lot of well-placed naps) will set me right again.
Well, forthwith wasn’t as quick as I expected, and time passes slowly when your head feels like a medical emergency. A week and a bit went by, then Marie rang the hospital and left a message of some desperation. Another couple of days passed, before I took things into my own hands and went to see my GP, armed with the neurologist’s tentative diagnosis. The GP happily dispensed drug A (he’s quite keen on drugs for a Dutch doctor). It was wonderful! I slept that night for the first time in months, just slept and slept and slept, almost 12 hours straight. It was absolutely glorious! Marie tells me she kept creeping into the bedroom just to enjoy the sound of my snoring.
And wouldn’t you know: the following day, as if by magic, a prescription arrives from the neurologist for drug B, a rather less powerful version of the same class of drug the GP gave me (without the benefit of expert advice). I don’t sleep like a teenager with drug B, and I feel alert enough to drive … but ooh, do I miss drug A and its lovely sledgehammer effect!
The other development of the week is that I have stopped seeing the nice physiotherapist round the corner who did the best he could for me but who I think was beginning to feel that his bag of tricks was getting rather empty. Instead, I will now go to the neighbouring town twice a week to see a specialist in movement disorders (Mensendieck therapy, if that means anything to you).
It’s early days yet, but I am feeling hopeful about this. Ms Mensendieck seems quite unfazed by my many complaints and inabilities, and she focuses on treating the causes of my problems with exercises that I can also do at home, rather than focusing (as did my previous physiotherapist) on treating the symptoms with massages and other muscle stimulation. I guess Marie will just have to take over the massages, and she is already used to giving me frequent short buzzes with the domestic sander (yes, sander) that physio #1 suggested might give some immediate relief from my back pain.
The nice Ms Mensendieck has already given me a present, a rather peculiar CD with advice on how to carry out daily activities despite having Parkinson’s. There is the slight issue with this CD that (a) it is in Dutch which I don’t speak and (b) it has been organized by a stamp collector into minute and repetitive sections, but nevertheless (c) it appears to contain valuable advice that Marie can help me decipher (not being English, she has no phobia about foreign languages).
Now I am just hoping – so very hard – that the next few weeks will prove that all my fears about aggressive forms of Parkinson’s are quite mistaken, and that many good nights’ sleep (and a lot of well-placed naps) will set me right again.
11 August 2008
Frustrations
Another week spent all on my own while Marie earns her keep selling books at a conference somewhere. It has its downsides, and its upsides, but apparently it has no side sides.
So how did I cope? Well, we actually both rather enjoy it when the other goes away for a few days and we get to indulge our various foibles and anti-social tendencies in peace. Thus, with my quiet-loving wife away, I got to keep the radio on at all times, and loud. Likewise, the entire place was one glorious mess with that seriously lived-in feeling I (and the fruit flies) like so much, until about one hectic half-hour before Mrs Neatfreak was about to turn up again. This time, I also got to nap when and where and as often as I wanted.
But perhaps most significantly I went into work on Monday morning on the first day back after my four-week holiday at home. I might as well have stayed home for all the use I was in my insomnia-addled state. As it turns out, I must have looked exactly like I felt, because taking one look at me my boss suggested (and I agreed) that I’d be better off going straight home again on sick leave. OK, I have been unable to function properly for several weeks now, but that was on my own time. But now it’s official, and although this is neither the best job nor the best employers I have ever had, the very real possibility that I may never be able to work again looms rather large. Being officially sick somehow feels much worse than just being sick – it’s got that whiff of the scrap heap about it.
As it is, I am in such a state that I can’t even pretend to ‘keep my hand in' by reading the latest papers, staying in touch with close colleagues, putting in the odd appearance. I had quite a few plans for what I wanted to do last week without Marie here to distract me with fripperies like mealtimes and fresh air. I had great plans to make progress on this book I am supposed to be writing with two good former colleagues, aiming to finish one chapter at the minimum. I was also going to look into a bit of Java script for a website I am building. And I had a good book waiting for me, and I was going to call my kids, etc etc etc. As it turned out, I failed on all counts and got very close to zero – zilch – nada done on any of these plans. Did I feel bad about this? You bet I did. Sure, I am still sleeping badly (see earlier posts), but I didn’t feel so sick that I could expect to achieve nothing at all. A big disappointment, and perhaps the beginning of some kind of learning curve involving the adjustment of expectations so that I can set myself an achievable goal and get to feel good about accomplishing something, rather than asking too much of myself and failing miserably and depressingly.
From everything I've read so far, I'm supposed to be in a kind of honeymoon period with drugs working at peak efficiency and all things running smoothly. When I got the diagnosis of Parkinson’s, I thought ‘okay, I'll take my pills and that will be that for years and years. I'll drive – work – run marathons – be normal.’ Instead, I'm a complete wreck. Where am I going wrong? On general health, I’m better than ever: I’ve quit smoking, hardly drink at all, take gentle exercise almost daily, but that appears to make little or no difference.
My huge worry is that I have been misdiagnosed and that I have in fact got one of the ‘Parkinson’s Plus’ conditions (a fear not helped by me recently reading Life in the Balance by Thomas Graboys, an admirably honest autobiography about Parkinson’s with Lewy body disease which causes dementia). Honestly, I’m crawling up the walls with anxiety. On the other hand, it is also entirely possible that all my present troubles stem from not sleeping – but I’m still stuck up here near the ceiling waiting for a prescription for new sleeping drugs. No matter what, PD is a progressive disease, so I can predict with some considerable degree of confidence that next year will be worse than this year. Ho hum. I wonder what other little jokes the universe has in store for me ….
So how did I cope? Well, we actually both rather enjoy it when the other goes away for a few days and we get to indulge our various foibles and anti-social tendencies in peace. Thus, with my quiet-loving wife away, I got to keep the radio on at all times, and loud. Likewise, the entire place was one glorious mess with that seriously lived-in feeling I (and the fruit flies) like so much, until about one hectic half-hour before Mrs Neatfreak was about to turn up again. This time, I also got to nap when and where and as often as I wanted.
But perhaps most significantly I went into work on Monday morning on the first day back after my four-week holiday at home. I might as well have stayed home for all the use I was in my insomnia-addled state. As it turns out, I must have looked exactly like I felt, because taking one look at me my boss suggested (and I agreed) that I’d be better off going straight home again on sick leave. OK, I have been unable to function properly for several weeks now, but that was on my own time. But now it’s official, and although this is neither the best job nor the best employers I have ever had, the very real possibility that I may never be able to work again looms rather large. Being officially sick somehow feels much worse than just being sick – it’s got that whiff of the scrap heap about it.
As it is, I am in such a state that I can’t even pretend to ‘keep my hand in' by reading the latest papers, staying in touch with close colleagues, putting in the odd appearance. I had quite a few plans for what I wanted to do last week without Marie here to distract me with fripperies like mealtimes and fresh air. I had great plans to make progress on this book I am supposed to be writing with two good former colleagues, aiming to finish one chapter at the minimum. I was also going to look into a bit of Java script for a website I am building. And I had a good book waiting for me, and I was going to call my kids, etc etc etc. As it turned out, I failed on all counts and got very close to zero – zilch – nada done on any of these plans. Did I feel bad about this? You bet I did. Sure, I am still sleeping badly (see earlier posts), but I didn’t feel so sick that I could expect to achieve nothing at all. A big disappointment, and perhaps the beginning of some kind of learning curve involving the adjustment of expectations so that I can set myself an achievable goal and get to feel good about accomplishing something, rather than asking too much of myself and failing miserably and depressingly.
From everything I've read so far, I'm supposed to be in a kind of honeymoon period with drugs working at peak efficiency and all things running smoothly. When I got the diagnosis of Parkinson’s, I thought ‘okay, I'll take my pills and that will be that for years and years. I'll drive – work – run marathons – be normal.’ Instead, I'm a complete wreck. Where am I going wrong? On general health, I’m better than ever: I’ve quit smoking, hardly drink at all, take gentle exercise almost daily, but that appears to make little or no difference.
My huge worry is that I have been misdiagnosed and that I have in fact got one of the ‘Parkinson’s Plus’ conditions (a fear not helped by me recently reading Life in the Balance by Thomas Graboys, an admirably honest autobiography about Parkinson’s with Lewy body disease which causes dementia). Honestly, I’m crawling up the walls with anxiety. On the other hand, it is also entirely possible that all my present troubles stem from not sleeping – but I’m still stuck up here near the ceiling waiting for a prescription for new sleeping drugs. No matter what, PD is a progressive disease, so I can predict with some considerable degree of confidence that next year will be worse than this year. Ho hum. I wonder what other little jokes the universe has in store for me ….
03 August 2008
Bah, humbug!
It seems that once you let them into your life, there is no escape possible. What did I have before? A bit of back pain and a slight twitch. And what do I have now? A bit of (slightly different) back pain and a bit more of a twitch – plus a medical team consisting of
1. GP
2. Neurologist
3. Physiotherapist
4. Speech therapist
5. Pain clinic specialist
6. REM sleep expert
with each their opinion of how to solve my problems. Well, nobody is saying it ain’t Parkinson’s, but the ideas for treating the symptoms and improving my daily quality of life vary. A number of things get tried, and if any change occurs it is hard to say afterwards what exactly caused it.
As I said two weeks ago, I’ve been worried about my cognitive skills (and still am), but unsure whether my slow descent into a forgetful multi-napper is caused by Parkinson’s, by serious sleep deprivation, by side effects of my medication, or by some as yet undiscovered issues. When I saw the neurologist a few days ago she was surprised that I was functioning so much worse than at my last visit and agreed something must be done. Insomnia and disturbed sleep are quite common in Parkinson’s, and since I am lucky enough to be treated by one of the national PD centers, they have a resident REM sleep expert whom the neurologist will consult as to what sleeping pills might best avoid the ultra-vivid dreams and sleep-walking episodes that I have been getting from all the other meds I have tried so far. Fingers crossed! The life I have been leading the last few weeks – unable to stay awake for more than half an hour at a time, attention span of a concussed lemming, ridiculously dependent on my poor wife, gobbling down pills by the fistful – is just not acceptable.
And another thing: we’ve had a bit of a heat wave (in my present mood, I blame the doctors) which finally appears to have broken today – and just as well, since I have been at real risk of running out of clean laundry. I’m not sure about this, but it seems like my internal temperature gauge may be faulty. I get extravagantly warm and sweaty over 95% of my body, but at the same time have some weird chilly spots, such as cold knees (silly) and cold back of the neck (more unpleasant). Marie confirms that my skin feels a bit cooler in these places. So on the one hand I sweat through one T-shirt after another and have to take frequent showers – somewhat problematic because it takes me so frustratingly long to get in and out of my clothes that by the time I’ve got dried off and dressed again, it is time for my next nap. And on the other hand I am constantly having to warm up my bag of cherry pips to apply heat to my cold bits. There really are days when I think my body is just out to get me.
1. GP
2. Neurologist
3. Physiotherapist
4. Speech therapist
5. Pain clinic specialist
6. REM sleep expert
with each their opinion of how to solve my problems. Well, nobody is saying it ain’t Parkinson’s, but the ideas for treating the symptoms and improving my daily quality of life vary. A number of things get tried, and if any change occurs it is hard to say afterwards what exactly caused it.
As I said two weeks ago, I’ve been worried about my cognitive skills (and still am), but unsure whether my slow descent into a forgetful multi-napper is caused by Parkinson’s, by serious sleep deprivation, by side effects of my medication, or by some as yet undiscovered issues. When I saw the neurologist a few days ago she was surprised that I was functioning so much worse than at my last visit and agreed something must be done. Insomnia and disturbed sleep are quite common in Parkinson’s, and since I am lucky enough to be treated by one of the national PD centers, they have a resident REM sleep expert whom the neurologist will consult as to what sleeping pills might best avoid the ultra-vivid dreams and sleep-walking episodes that I have been getting from all the other meds I have tried so far. Fingers crossed! The life I have been leading the last few weeks – unable to stay awake for more than half an hour at a time, attention span of a concussed lemming, ridiculously dependent on my poor wife, gobbling down pills by the fistful – is just not acceptable.
And another thing: we’ve had a bit of a heat wave (in my present mood, I blame the doctors) which finally appears to have broken today – and just as well, since I have been at real risk of running out of clean laundry. I’m not sure about this, but it seems like my internal temperature gauge may be faulty. I get extravagantly warm and sweaty over 95% of my body, but at the same time have some weird chilly spots, such as cold knees (silly) and cold back of the neck (more unpleasant). Marie confirms that my skin feels a bit cooler in these places. So on the one hand I sweat through one T-shirt after another and have to take frequent showers – somewhat problematic because it takes me so frustratingly long to get in and out of my clothes that by the time I’ve got dried off and dressed again, it is time for my next nap. And on the other hand I am constantly having to warm up my bag of cherry pips to apply heat to my cold bits. There really are days when I think my body is just out to get me.
31 July 2008
Intermittent faults
We bought a new computer at the start of last week, and life has never been better – NOT. My sister-in-law is quite scathing about the state of new computers, pointing out that no other industry would get away with selling products in such a shoddy state of half-finished mess. Who would buy a shirt with half the seams still to be sown, a collar that only works if worn with an expensive scarf, and all the buttons provided in a separate bag? That, she claims, is the state of most new computers, and it is hard to disagree.
Most of my week was spent fighting our home network, trying to coax various bits of the machine into communicating, rooting around to locate old software install disks, etc. An absolute nightmare, and not even over yet as we have had to conclude that some problems can only be down to hardware failure (a non-responsive USB port and a network card with that hateful thing, an intermittent fault). In fact, this is a pretty good metaphor for Parkinson’s. On good days, most of your body works with only minor patience and jollying along needed, while on bad days parts of the body system just refuse to respond at all. At times the shifts can be really sudden. You’re walking along fairly happily and BANG your legs stop working and your feet stick to the ground (so moments later it starts to rain). Such fun.
Positive development of the week, though, is that I have started to see a speech therapist, and that much to my surprise her suggestions seem to be rather helpful. Okay, the first session was spent teaching me how to breathe, a task that I have successfully accomplished without outside help for the last 50+ years, but it now appears that I have been doing it wrong, breathing in when I should have been breathing out, or possibly vice versa. That didn’t impress me too much, but subsequent sessions (3 per week, so this woman really has a lot of time for me) have focused on getting me to speak louder and slower, and on getting rid of my Parkinsonian tendency towards a pre-pubescent pitch. I can do it, but not for long (yet), so much of the work involves recognizing the problem, becoming aware of when my speech slips, and training to make clearer speech more like second nature. By the way, when Ms Therapist took my history, she asked if I thought my wife was going deaf as apparently lots of Parkinson’s patients simply refuse to believe that the problem is with their speech. I don’t think Marie is going deaf – lots of people have been asking me to repeat things for years – but in a show of loyalty she had been wondering about it herself.
My speech problems also involve my mouth being generally rather dry and going completely, spectacularly arid when I am stressed – my tongue sticks to my palate, my lips stick together, I can’t swallow, and pretty bloody miserable it is too. The general dryness may well be a side effect of drugs, although I manage also to suffer from the more common Parkinsonian dribble (which is not actually caused by too much saliva, but by ‘forgetting’ to swallow).
Dry mouth is annoying, arid mouth debilitating, and dribbling rather embarrassing. Sipping water gives some instant relief but is of little long-term help as water is too wet – basically, what you want instead is something slightly slimy like saliva that will coat the surfaces of the mouth and stay there. Thus, if I weren’t already straining against my belt, I could perhaps solve the problem by sipping cream or constantly sucking lemony sweets. As it is, the only other option is fake saliva made, somehow, from pigs’ intestines. I have tried it, and believe you me: I’m not going there again!
Most of my week was spent fighting our home network, trying to coax various bits of the machine into communicating, rooting around to locate old software install disks, etc. An absolute nightmare, and not even over yet as we have had to conclude that some problems can only be down to hardware failure (a non-responsive USB port and a network card with that hateful thing, an intermittent fault). In fact, this is a pretty good metaphor for Parkinson’s. On good days, most of your body works with only minor patience and jollying along needed, while on bad days parts of the body system just refuse to respond at all. At times the shifts can be really sudden. You’re walking along fairly happily and BANG your legs stop working and your feet stick to the ground (so moments later it starts to rain). Such fun.
Positive development of the week, though, is that I have started to see a speech therapist, and that much to my surprise her suggestions seem to be rather helpful. Okay, the first session was spent teaching me how to breathe, a task that I have successfully accomplished without outside help for the last 50+ years, but it now appears that I have been doing it wrong, breathing in when I should have been breathing out, or possibly vice versa. That didn’t impress me too much, but subsequent sessions (3 per week, so this woman really has a lot of time for me) have focused on getting me to speak louder and slower, and on getting rid of my Parkinsonian tendency towards a pre-pubescent pitch. I can do it, but not for long (yet), so much of the work involves recognizing the problem, becoming aware of when my speech slips, and training to make clearer speech more like second nature. By the way, when Ms Therapist took my history, she asked if I thought my wife was going deaf as apparently lots of Parkinson’s patients simply refuse to believe that the problem is with their speech. I don’t think Marie is going deaf – lots of people have been asking me to repeat things for years – but in a show of loyalty she had been wondering about it herself.
My speech problems also involve my mouth being generally rather dry and going completely, spectacularly arid when I am stressed – my tongue sticks to my palate, my lips stick together, I can’t swallow, and pretty bloody miserable it is too. The general dryness may well be a side effect of drugs, although I manage also to suffer from the more common Parkinsonian dribble (which is not actually caused by too much saliva, but by ‘forgetting’ to swallow).
Dry mouth is annoying, arid mouth debilitating, and dribbling rather embarrassing. Sipping water gives some instant relief but is of little long-term help as water is too wet – basically, what you want instead is something slightly slimy like saliva that will coat the surfaces of the mouth and stay there. Thus, if I weren’t already straining against my belt, I could perhaps solve the problem by sipping cream or constantly sucking lemony sweets. As it is, the only other option is fake saliva made, somehow, from pigs’ intestines. I have tried it, and believe you me: I’m not going there again!
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.
15 July 2008
Soft spots
I’ve just been in the UK again – one last dental appointment, and another opportunity to see the kids and grandkids. This time I travelled alone, and although I think Marie and I were perhaps both a little apprehensive about how that would go (will he fall asleep on the airport train, will he be able to get his shoes on and off for security control, will he lose his way in the maze that is Schiphol airport), once I got into it I was just fine.
The grandchildren were wonderful. I have been over often enough this year that they really know me now so we can cut out the coy/shy stage. My granddaughter of 2 ½ was sweetness and light and wrapping me round her little finger. She really brings out the best in me, had me crawling around under the table chasing lost crayons and playing silly games. I was amazed that I managed – but it was OK, somehow the medicinal effect of those big dark eyes just melted my stiff joints (or more likely produced a useful flood of endorphines). Just the thought of her makes me feel better.
My grandson of 4 months is still to small to demand much of me besides a soft lap to nap on (which I am exceedingly well equipped to provide). I think he will grow up to be a smart kid, already showing native intelligence in the way he examines everything in great detail (I know, I’ve gone granddad-soft-in-the-head).
Having been down to 75 kg in my morphine addict days, I am now at a record-breaking 93kg. All my trousers are too tight and I suspect the beginning of man breasts, worrying that chest hair can hide only so much underlying porkiness. I also have some knee pain, but whether that is related to Parkinson’s (bad posture and poor walking) or caused by me becoming a fat bastard is anyone’s guess. Anyway, the upshot was that my daughter took me out to buy new trousers from my life-long suppliers at M&S. I decided to go super-comfy and bought three new trousers with some room for growth.
When wife #1 saw me strutting my new style later that day, she asked if wife #2 had approved this purchase. When I answered no, #1 smirked knowingly. Numbers 1 & 2 get on frighteningly well, so #1 was of course entirely right about the reaction I got from #2 (who also wasn’t impressed by my braces and claimed that [braces + trousers 3 sizes too big = Bozo the Clown]). As I write, my wonderful new trousers are being boiled in an attempt to reduce their size and my braces are sulking at the back of the cupboard. So much for my attempt at hobo chic.
The grandchildren were wonderful. I have been over often enough this year that they really know me now so we can cut out the coy/shy stage. My granddaughter of 2 ½ was sweetness and light and wrapping me round her little finger. She really brings out the best in me, had me crawling around under the table chasing lost crayons and playing silly games. I was amazed that I managed – but it was OK, somehow the medicinal effect of those big dark eyes just melted my stiff joints (or more likely produced a useful flood of endorphines). Just the thought of her makes me feel better.
My grandson of 4 months is still to small to demand much of me besides a soft lap to nap on (which I am exceedingly well equipped to provide). I think he will grow up to be a smart kid, already showing native intelligence in the way he examines everything in great detail (I know, I’ve gone granddad-soft-in-the-head).
Having been down to 75 kg in my morphine addict days, I am now at a record-breaking 93kg. All my trousers are too tight and I suspect the beginning of man breasts, worrying that chest hair can hide only so much underlying porkiness. I also have some knee pain, but whether that is related to Parkinson’s (bad posture and poor walking) or caused by me becoming a fat bastard is anyone’s guess. Anyway, the upshot was that my daughter took me out to buy new trousers from my life-long suppliers at M&S. I decided to go super-comfy and bought three new trousers with some room for growth.
When wife #1 saw me strutting my new style later that day, she asked if wife #2 had approved this purchase. When I answered no, #1 smirked knowingly. Numbers 1 & 2 get on frighteningly well, so #1 was of course entirely right about the reaction I got from #2 (who also wasn’t impressed by my braces and claimed that [braces + trousers 3 sizes too big = Bozo the Clown]). As I write, my wonderful new trousers are being boiled in an attempt to reduce their size and my braces are sulking at the back of the cupboard. So much for my attempt at hobo chic.
07 July 2008
Walkies
I continue to wake very early, between 4 and 5am, but I’ve agreed a kind of ceasefire with my insomnia: I won’t try to get rid of it so long as it leaves my sanity (largely) intact. And lonely though 4am is, that seems to be working for now.
By the time early dog-walkers begin to stir, I’m also ready for a walk. My physiotherapist says that’s the best kind of exercise for the Parkinson’s as it helps maintain balance (and confidence in balance). Does nothing for my growing pouch, but there we are. I often take my MP3 player because music with a strong beat helps me walk faster and more ‘normally’, i.e. swinging the arms and striking down with the heels, rather than shuffling along with hands in pockets to hide the stiffness. (I particularly recommend Leonard Cohen's Sisters of Mercy.) I think this effect of the beat is quite common for PD and similar to the effect of patterned floors – it is as if the clear rhythm releases some blockage in the motor system.
Mostly I walk alone, but at weekends and sometimes if I walk in the afternoon or evening, Marie comes too. She follows from the front, marching out with almost military pace and rhythm, while I limp and hobble along behind – like some chubby, middle-aged Igor. Almost invariably, she makes me go further, or faster, or more uphill, or over rougher terrain than I would have if alone. She claims this is good for me – well, she would. In some desperation, I brought my small camera along one day to give me an excuse to stop and catch my breath while pretending to admire this or that manifestation of Nature (of which Marie approves). It turned out to be rather interesting, though, and I am now building quite a collection of close-ups of bark and gnarled roots and contrasting leaves. In fact, I have punished Marie for her annoying enthusiasm by spending too much money on a new and better camera, and making her carry around a large sheet of coloured cardboard on walks in the woods so that I always have a monochrome background to hand. Serves her right, and distracts the attention of other walkers from any oddness in my gait.
I’ve even started to enjoy the walking for its own sake. It helps me reclaim body and mind when either is at risk of seizing up, and if nothing else, it makes me happy when its over. The trick to mimicking normal movement seems to be to pretend to myself that all is well and normal, but to keep my eyes firmly focused on the ground directly in front of me – because I fear that if I lose sight of where the feet go, I might fall To give the system some credit, I have never fallen yet (though there is always a first time…).
By the time early dog-walkers begin to stir, I’m also ready for a walk. My physiotherapist says that’s the best kind of exercise for the Parkinson’s as it helps maintain balance (and confidence in balance). Does nothing for my growing pouch, but there we are. I often take my MP3 player because music with a strong beat helps me walk faster and more ‘normally’, i.e. swinging the arms and striking down with the heels, rather than shuffling along with hands in pockets to hide the stiffness. (I particularly recommend Leonard Cohen's Sisters of Mercy.) I think this effect of the beat is quite common for PD and similar to the effect of patterned floors – it is as if the clear rhythm releases some blockage in the motor system.
Mostly I walk alone, but at weekends and sometimes if I walk in the afternoon or evening, Marie comes too. She follows from the front, marching out with almost military pace and rhythm, while I limp and hobble along behind – like some chubby, middle-aged Igor. Almost invariably, she makes me go further, or faster, or more uphill, or over rougher terrain than I would have if alone. She claims this is good for me – well, she would. In some desperation, I brought my small camera along one day to give me an excuse to stop and catch my breath while pretending to admire this or that manifestation of Nature (of which Marie approves). It turned out to be rather interesting, though, and I am now building quite a collection of close-ups of bark and gnarled roots and contrasting leaves. In fact, I have punished Marie for her annoying enthusiasm by spending too much money on a new and better camera, and making her carry around a large sheet of coloured cardboard on walks in the woods so that I always have a monochrome background to hand. Serves her right, and distracts the attention of other walkers from any oddness in my gait.
I’ve even started to enjoy the walking for its own sake. It helps me reclaim body and mind when either is at risk of seizing up, and if nothing else, it makes me happy when its over. The trick to mimicking normal movement seems to be to pretend to myself that all is well and normal, but to keep my eyes firmly focused on the ground directly in front of me – because I fear that if I lose sight of where the feet go, I might fall To give the system some credit, I have never fallen yet (though there is always a first time…).
30 June 2008
Home alone
Here I thought we were getting along rather well, and then Marie ups and leaves me. Okay, it was a work trip and only for a few days, but what’s a bloke to do? Pine, panic or procrastinate? Anyway, she left me with steaks to fry, English goodies to eat, and instructions for all emergencies and eventualities. The goodies are never quite as good as the mind imagines (NEVER let on I said that), but at least they are plentiful, and the cat enjoys sharing them with me.
But bugger it, I miss her. She’s supposed to be here to jolly me along and pester me into doing things, and to rub my aching back and bolster my flagging mood, and to help me tie shoelaces and put on belts and find keys – and also to hug me and hold me. Anyway, I soldier on. Strange pains go unreported (not to be mentioned at work, as who knows if they are still waiting to pounce and push me out), insomnia goes unacknowledged (okay, the cat knows I’m up at 4am, but is supremely unsympathetic), odd sleeping/waking dreams are not retold and laughed at (I hate it when she does that, but miss it when she doesn’t).
I avoid going out over the weekend. I feel I am beginning to twitch, and though I realize this is probably not visible to others, it feels so obvious to me I can’t believe nobody would notice. My speech is also affected, with a dry mouth and rough throat not helping any – I have been given a referral to see a speech therapist, and I realize I should not put it off much longer. I’ll tell you about it when I’ve pulled myself together and been for an appointment.
Anyway, the big question is: has Marie left me with enough food? You would think so, but I have an impressive appetite these days (it must be the pills). I root around and find various hidden treasures – the ginger nuts secreted for some dark and rhubarby purpose, a forgotten scrabble game made of bad chocolate, the microwave popcorn put away as insurance in case of nuclear winter. I could of course pick as much fresh veg as I like in the garden, but I’m a man for whom VEG means ‘Von Ebner’s glands’ (tiny things to do with saliva).
We never used to call each other every day from trips away, but now Marie calls daily and we talk for much longer than we used to when I was well and she would call only once or twice in a week away. Of course, the unspoken issue for both of us is: am I at risk of doing something stupid or dangerous, forgetting to feed the cat or setting fire to the house, or will I go psycho with lack of sleep and hurt myself? Of course not, no way – but as the Parkinson’s progresses, I can feel myself becoming more careful and timid, avoiding what I fear might be risky situations. Since when was I like that? How dare this disease take away my carelessly accident-prone self?
But bugger it, I miss her. She’s supposed to be here to jolly me along and pester me into doing things, and to rub my aching back and bolster my flagging mood, and to help me tie shoelaces and put on belts and find keys – and also to hug me and hold me. Anyway, I soldier on. Strange pains go unreported (not to be mentioned at work, as who knows if they are still waiting to pounce and push me out), insomnia goes unacknowledged (okay, the cat knows I’m up at 4am, but is supremely unsympathetic), odd sleeping/waking dreams are not retold and laughed at (I hate it when she does that, but miss it when she doesn’t).
I avoid going out over the weekend. I feel I am beginning to twitch, and though I realize this is probably not visible to others, it feels so obvious to me I can’t believe nobody would notice. My speech is also affected, with a dry mouth and rough throat not helping any – I have been given a referral to see a speech therapist, and I realize I should not put it off much longer. I’ll tell you about it when I’ve pulled myself together and been for an appointment.
Anyway, the big question is: has Marie left me with enough food? You would think so, but I have an impressive appetite these days (it must be the pills). I root around and find various hidden treasures – the ginger nuts secreted for some dark and rhubarby purpose, a forgotten scrabble game made of bad chocolate, the microwave popcorn put away as insurance in case of nuclear winter. I could of course pick as much fresh veg as I like in the garden, but I’m a man for whom VEG means ‘Von Ebner’s glands’ (tiny things to do with saliva).
We never used to call each other every day from trips away, but now Marie calls daily and we talk for much longer than we used to when I was well and she would call only once or twice in a week away. Of course, the unspoken issue for both of us is: am I at risk of doing something stupid or dangerous, forgetting to feed the cat or setting fire to the house, or will I go psycho with lack of sleep and hurt myself? Of course not, no way – but as the Parkinson’s progresses, I can feel myself becoming more careful and timid, avoiding what I fear might be risky situations. Since when was I like that? How dare this disease take away my carelessly accident-prone self?
22 June 2008
Out and about
We attended a rather formal do this week, in the shape of a lecture at the university with reception at a fancy hotel afterwards. It was a chance for me to see a bunch of old colleagues, and Marie tagged along to keep me out of mischief. I thought I’d dress up for the occasion so wore my best black socks with the velcro-strappy sandals that are by far the easiest shoes for me to get into. My dear wife (and her gaggle of sisters) have a down on men with socks and sandals, but nobody at the do commented on my choice of footwear, so there!
I was rather concerned about having to sit through about 90 minutes of speeches and lecturing first. The thing is that when I have sat for a bit I get this uncontrollable urge to stand up – sometimes after just a few minutes, other times I can sit like a normal person for an hour or more. Of course, when the urge grabs me I can’t just stand up quietly and unobtrusively. Oh no, I need to get a firm handhold, preferably on the chairback and ponytail of the person in the row in front of me, so I can lift-push myself upwards (with a forceful primeval grunt) and then start urgent pacing to loosen up my joints. Fortunately, the gods of something or other were with me – no urges to jump up, no twitching. My only problem was staying awake…
About the urge to move, I’ve been reading Oliver Sacks’ book Awakenings (the book behind the documentary behind the film) where he tells the stories of his patients who had an ultra-severe form of Parkinson’s brought on by the late effects of a particular type of encephalitis. The book is hardly a jolly romp (and is sadly lacking in car chases) but there are a lot of things I recognize, even at my fairly early stage. These patients are so extravagantly ill that it’s like looking at (some of) my symptoms blown up 1,000 times so they become really obvious and clear. And Sacks talks about the urge to move as something quite common, matched almost exactly and horribly unfairly by the inability to move of his ‘frozen’ patients. It’s as if the muscles that have been quietly spasming along with their barely noticeable tremors suddenly need to release all the pent-up energy in big and urgent exercise. An excellent way to draw attention to yourself in a large lecture hall, so I was very relieved to get through to the reception without making a spectacle of myself.
At the reception many people that I haven’t seen since shortly after my diagnosis last year came up to me and asked how I was doing. I tried out several answers that I thought might be socially acceptable (since few people want to stand in the middle of wine and nibbles with somebody else’s truth dripping all down their shirt fronts). I had a go with ‘Much better, thank you’ – a blatant lie in view of the progressive nature of PD. But since I have developed an uncharacteristic light suntan that was generally interpreted as signalling some miracle cure, no-one called me on my lie. I also tried out ‘Much better now that the medication is working’, which is a nice little half-truth since this ‘much better’ relies on me taking 26 pills per day at various times and in various combinations, with a catalogue of interesting side effects as I’ve talked about in earlier posts. My last variation was totally truthful, yet again manages to throw a sociable veil over daily life: ‘Thank you, much better than I was this time last year’, which is when I was sky-high on far too much morphine and not yet on PD meds. But it was nice of them all to ask, and I did enjoy myself.
After an hour or so of this I felt I’d done enough and talked to all those I wanted to catch up with, so I looked round for Marie to drag me away. And bugger me, she was nowhere to be seen. I checked inside the reception room – not there. Checked the outdoor area – not there. Started to panic, festinating my way with tiny, rapid steps round the main room again like some little lost boy – and then suddenly she was there again, having just been to the loo. I was so relieved I bought her flowers on the way home (an occurrence so rare its precedents can be counted on the fingers of a mountaineer with severe frostbite). This dependence thing has the potential to get quite disturbing for both of us, but I may just save that worry for another day.
I was rather concerned about having to sit through about 90 minutes of speeches and lecturing first. The thing is that when I have sat for a bit I get this uncontrollable urge to stand up – sometimes after just a few minutes, other times I can sit like a normal person for an hour or more. Of course, when the urge grabs me I can’t just stand up quietly and unobtrusively. Oh no, I need to get a firm handhold, preferably on the chairback and ponytail of the person in the row in front of me, so I can lift-push myself upwards (with a forceful primeval grunt) and then start urgent pacing to loosen up my joints. Fortunately, the gods of something or other were with me – no urges to jump up, no twitching. My only problem was staying awake…
About the urge to move, I’ve been reading Oliver Sacks’ book Awakenings (the book behind the documentary behind the film) where he tells the stories of his patients who had an ultra-severe form of Parkinson’s brought on by the late effects of a particular type of encephalitis. The book is hardly a jolly romp (and is sadly lacking in car chases) but there are a lot of things I recognize, even at my fairly early stage. These patients are so extravagantly ill that it’s like looking at (some of) my symptoms blown up 1,000 times so they become really obvious and clear. And Sacks talks about the urge to move as something quite common, matched almost exactly and horribly unfairly by the inability to move of his ‘frozen’ patients. It’s as if the muscles that have been quietly spasming along with their barely noticeable tremors suddenly need to release all the pent-up energy in big and urgent exercise. An excellent way to draw attention to yourself in a large lecture hall, so I was very relieved to get through to the reception without making a spectacle of myself.
At the reception many people that I haven’t seen since shortly after my diagnosis last year came up to me and asked how I was doing. I tried out several answers that I thought might be socially acceptable (since few people want to stand in the middle of wine and nibbles with somebody else’s truth dripping all down their shirt fronts). I had a go with ‘Much better, thank you’ – a blatant lie in view of the progressive nature of PD. But since I have developed an uncharacteristic light suntan that was generally interpreted as signalling some miracle cure, no-one called me on my lie. I also tried out ‘Much better now that the medication is working’, which is a nice little half-truth since this ‘much better’ relies on me taking 26 pills per day at various times and in various combinations, with a catalogue of interesting side effects as I’ve talked about in earlier posts. My last variation was totally truthful, yet again manages to throw a sociable veil over daily life: ‘Thank you, much better than I was this time last year’, which is when I was sky-high on far too much morphine and not yet on PD meds. But it was nice of them all to ask, and I did enjoy myself.
After an hour or so of this I felt I’d done enough and talked to all those I wanted to catch up with, so I looked round for Marie to drag me away. And bugger me, she was nowhere to be seen. I checked inside the reception room – not there. Checked the outdoor area – not there. Started to panic, festinating my way with tiny, rapid steps round the main room again like some little lost boy – and then suddenly she was there again, having just been to the loo. I was so relieved I bought her flowers on the way home (an occurrence so rare its precedents can be counted on the fingers of a mountaineer with severe frostbite). This dependence thing has the potential to get quite disturbing for both of us, but I may just save that worry for another day.
16 June 2008
Seize the day
A few days ago Marie and I went up in hot air balloon for our wedding anniversary. That’s 14 years together (7 before and 7 after getting married), and amazingly neither one of us is fed up yet. Anyway, I’d worried for weeks that I wouldn’t be able to get into the basket, and my fears were not allayed when I saw it: sides about chest high, with only three small footholds going up. As it happened, getting in was okay since everyone scrambled madly together, it was getting out at the end that proved the problem as that was done carefully one person at a time to avoid the thing taking off again. I know probably few people notice it, but when you’re stiff and feeble and can’t swing your bloody leg high enough to get it over the top, you just feel that the whole world is looking at you and wondering what your problem is. But it was worth it, I have to admit. The air was clear and there was a good wind so we got to go quite a long way, and before we landed the pilot (as they insisted on calling him) did some trick flying and dipped the bottom of the basket in the middle of a large lake!
Which leads me to revisit the carbon footprint issue: Marie objects to me leaving my PC on stand by when I’m not in the room, thinks it is quite unnecessary to flush unless there is ‘matter’ in the bowl and would prefer me to turn the lights out when I blink, but is happy to book a completely frivolous balloon flight and tickets for a round-trip through much of Southeast Asia. There seems to be a logical disconnect there, but she argues the plan is to do things (what ever they might be) sooner rather than later, before the disease potentially stops me from going along. Not a bad plan, but it does seem to ignore the need for sitting about and staring at the wall – one of my favourite activities (also before PD), and there do happen to be several walls around the house that need close examination before I’m done.
It is a question, I guess, of where quality of life comes from. Last week I mentioned good food, which reminds me of my stepfather – my mother consumed two husbands, and I use the term 'consumed' deliberately – who always said that as long as he could enjoy a cup of tea, life was worth living. I, on the other hand, lost my sense of smell many years ago, so to me tea is just a warm, sweet drink. In fact, there’s little need for a tea bag at all. Not really worth hanging around in this mortal coil for. I would have pork pie over tea any day if only Marie would let me, the evil harridan.
BTW, I’m dropping the sleeping pills because the side effects are just too miserable. These may become a source of future jokes (‘remember back when I could walk – oh, the things I got up to’), but right now I’m not looking forward to the return of sleepless nights. Ho hum. Is there honey left for tea?
Which leads me to revisit the carbon footprint issue: Marie objects to me leaving my PC on stand by when I’m not in the room, thinks it is quite unnecessary to flush unless there is ‘matter’ in the bowl and would prefer me to turn the lights out when I blink, but is happy to book a completely frivolous balloon flight and tickets for a round-trip through much of Southeast Asia. There seems to be a logical disconnect there, but she argues the plan is to do things (what ever they might be) sooner rather than later, before the disease potentially stops me from going along. Not a bad plan, but it does seem to ignore the need for sitting about and staring at the wall – one of my favourite activities (also before PD), and there do happen to be several walls around the house that need close examination before I’m done.
It is a question, I guess, of where quality of life comes from. Last week I mentioned good food, which reminds me of my stepfather – my mother consumed two husbands, and I use the term 'consumed' deliberately – who always said that as long as he could enjoy a cup of tea, life was worth living. I, on the other hand, lost my sense of smell many years ago, so to me tea is just a warm, sweet drink. In fact, there’s little need for a tea bag at all. Not really worth hanging around in this mortal coil for. I would have pork pie over tea any day if only Marie would let me, the evil harridan.
BTW, I’m dropping the sleeping pills because the side effects are just too miserable. These may become a source of future jokes (‘remember back when I could walk – oh, the things I got up to’), but right now I’m not looking forward to the return of sleepless nights. Ho hum. Is there honey left for tea?
09 June 2008
Insomnia
As I said last week, I have been suffering from insomnia recently. It sounds such a trivial problem, not sleeping. All of us have stayed up way into the small hours for one reason or another – a party, travelling to a holiday destination, even just a midnight film – all good things and associated with fun. But insomnia is very different: lying in the dark with your mind left to roam, and knowing that the hours until it’s time to get up are ticking away without you getting any rest. It gets really horrible when my drug-induced distortions of reality come calling. Marie found it hard to keep a straight face when I told her about my night-time episode smearing shaving cream into my hair, but from where I’m standing (sitting, slumping) it’s not actually that great waking up with head and pillow coated in goo. Last night, at least, my spill-over from dream to reality was calmer and more pleasant in that I got a visit from one of my favourite authors, Terry Pratchett – though unfortunately he couldn’t work out how to get up the stairs and I couldn’t get down them, so we never had a chance to talk. I’d have liked a chat about his Alz and my Parky, though. Anyway, if you read the blog last week, then you know all about it – I just didn't want anyone thinking it had gone away. I still feel grim before taking pills and a bit better after, but the difference ain’t as great as I would like.
The other issue I talked about in the last blog was my worry that I could no longer program. Well it turns out I can, it’s just my typing that’s full of errors, plus being given the wrong information about the job to start with didn’t help none. A simple human mistake that in a previous life I might have forgiven after a few scathing remarks. Now, though, I shall plan his painful demise in my copious (nocturnal) free time. But seriously, I think I'm getting slower on the keyboard – stiff, slow fingers mean maybe it’s time to cut down to two-finger typing. I spent some time this weekend rearranging my study so I now have mice in stereo. I seem to favour the left for now – time will tell if I have truly become left-handed (I was right-handed before PD struck).
So what else is new? Well, t’was hot as Hades last night which didn’t help my sleeping, so I got up at 5 am and had two breakfasts (am turning into a Hobbit: breakfast, second breakfast, elevenses, etc. – I feel my feet getting hairier as my belly expands). Tonight is guinea fowl, orange sauce and roast veg followed by a glass of ‘stuff’ made with vanilla yoghurt and strawberries straight from the garden. Cooking gives Marie something to do (in between writing two books, setting up a business and holding down a small day job), and anyway it’s food like this that helps makes life worth living (even with PD).
The other issue I talked about in the last blog was my worry that I could no longer program. Well it turns out I can, it’s just my typing that’s full of errors, plus being given the wrong information about the job to start with didn’t help none. A simple human mistake that in a previous life I might have forgiven after a few scathing remarks. Now, though, I shall plan his painful demise in my copious (nocturnal) free time. But seriously, I think I'm getting slower on the keyboard – stiff, slow fingers mean maybe it’s time to cut down to two-finger typing. I spent some time this weekend rearranging my study so I now have mice in stereo. I seem to favour the left for now – time will tell if I have truly become left-handed (I was right-handed before PD struck).
So what else is new? Well, t’was hot as Hades last night which didn’t help my sleeping, so I got up at 5 am and had two breakfasts (am turning into a Hobbit: breakfast, second breakfast, elevenses, etc. – I feel my feet getting hairier as my belly expands). Tonight is guinea fowl, orange sauce and roast veg followed by a glass of ‘stuff’ made with vanilla yoghurt and strawberries straight from the garden. Cooking gives Marie something to do (in between writing two books, setting up a business and holding down a small day job), and anyway it’s food like this that helps makes life worth living (even with PD).
01 June 2008
Big questions
Back from my trip to the UK to see my daughter, son, daughter-in-law, son-in-law, granddaughter and grandson – one of each and all bases covered. The family is a veritable melting pot of multicultural diversity: my first wife, mother of my children, is the only English person in the room. I’m half German and half German-Jewish, one in-law is Scandinavian (as is my wife) the other is second-generation Indian, partly via Kenya. This makes my grandchildren Indian/German/Hindu/Jewish/CofE/British – apparently a perfect and harmonious mix, but their DNA must be very tightly coiled.
The point of all this, though, is the depressing question of whether PD is genetic. PD that is not caused by an identifiable outside influence such as drugs or encephalitis is called idiopathic (from Greek idios=own and pathos=disease). That indicates a totally random eeny-meeny-MEAN kind of personal bad luck, but many doctors and sufferers believe that there is also an element of genetics involved (and of environmental influence too). I actually have an uncle with PD, which is worrying – because if there is any truth in the idea that PD is partly genetically determined, that means I may have passed on dud genes to my kids and grandkids. I don’t want to think about that (so I do).
I’m carrying on with my new pill regime for the second week, i.e. more Sifrol plus also one small anti-depressant each night to help me sleep. I need the help, but I’m also getting quite worrying side effects. Thus, before we left for the UK Marie had to prevent me going for walk in garden – naked at 3:00 am, after attempting to lift the garden door off its hinges. Another night I freaked out the cat when I went on a search for “air bears” in living room. I also have vivid dreams, for instance of buying a new house and having to piss in sink because there is no loo there – so vivid that I checked the sink next time I woke. It looked wet but not yellow, but I rinsed it anyway …
I’m told that these side effects will wear off after a week or three. And they better bloody had, because an unpleasant scenario is unfolding at work. Monday Boss asks me to write a simple bit of software. I confidently say OK, I will have it done for him by Thursday, because it really was a trivial bit of coding. But the snag is I am hung over from the new pills, so Friday rolls round and I have to admit to Boss and myself that I have failed to come up with the code. Together we decide to send me home sick until mind and body have improved. Boss understands the difference between health problems that are caused directly by the PD progressing, and health problems that are secondary or unrelated, and therefore potentially curable/reversible. My reaction to the new drugs is in the second category.
But for me, THE BIG QUESTION is: can I actually still write a simple program? I feel my head clearing somewhat, but the world seems to be seen through a dark glass. I used to do this work all the time, and I’m starting to panic that perhaps now I can’t (and the panic obviously isn’t making the task any easier). The books say that about 30% of PD sufferers develop some cognitive impairment, but how can you tell? What is PD and what is a normal process of getting older and slower and less able to learn new skills? A good friend of mine who was at least as good at programming as I stopped years ago because he just found it harder and harder to learn each new version of software. Is that what is happening to me, or is it something more sinister? If I look on the bleakly black side then
* I’m not reading as much or to the level I used to
* Driving has become a nerve-wracking task – though I’m safe because I’m scared
* Senior moments are getting more frequent and my short term memory is rubbish
* I could not sort out setting up this blog but needed help from #2, and before it has always been her who needed help from me with IT
* Finding the correct word is getting difficult – apparently a very common symptom of PD, but worrying nonetheless. It gives a sensation of time dilation where it seems like half a minute ticks by before the word comes to me, whereas others say it is really just a brief pause. Often I cope by walking away, and Marie pretends to ignore the pauses.
Have you seen Flowers for Algernon? A fine (SF) book and later film in which our hero starts out stupid, achieves a high level of intelligence helped by drugs, and then while fully aware of his plight looses it all, reverting to stupid. It always makes me cry.
Anyway, what this probably is, is a clear demonstration that a little learning is a dangerous thing. Between us, Marie and I have five degrees and every book on PD we could find on Amazon. I can tell you with some confidence that it is not a good idea to read all of them in one go, it will set off severe hypochondria in the most well-adjusted person – which I am not, so there’s my excuse.
The point of all this, though, is the depressing question of whether PD is genetic. PD that is not caused by an identifiable outside influence such as drugs or encephalitis is called idiopathic (from Greek idios=own and pathos=disease). That indicates a totally random eeny-meeny-MEAN kind of personal bad luck, but many doctors and sufferers believe that there is also an element of genetics involved (and of environmental influence too). I actually have an uncle with PD, which is worrying – because if there is any truth in the idea that PD is partly genetically determined, that means I may have passed on dud genes to my kids and grandkids. I don’t want to think about that (so I do).
I’m carrying on with my new pill regime for the second week, i.e. more Sifrol plus also one small anti-depressant each night to help me sleep. I need the help, but I’m also getting quite worrying side effects. Thus, before we left for the UK Marie had to prevent me going for walk in garden – naked at 3:00 am, after attempting to lift the garden door off its hinges. Another night I freaked out the cat when I went on a search for “air bears” in living room. I also have vivid dreams, for instance of buying a new house and having to piss in sink because there is no loo there – so vivid that I checked the sink next time I woke. It looked wet but not yellow, but I rinsed it anyway …
I’m told that these side effects will wear off after a week or three. And they better bloody had, because an unpleasant scenario is unfolding at work. Monday Boss asks me to write a simple bit of software. I confidently say OK, I will have it done for him by Thursday, because it really was a trivial bit of coding. But the snag is I am hung over from the new pills, so Friday rolls round and I have to admit to Boss and myself that I have failed to come up with the code. Together we decide to send me home sick until mind and body have improved. Boss understands the difference between health problems that are caused directly by the PD progressing, and health problems that are secondary or unrelated, and therefore potentially curable/reversible. My reaction to the new drugs is in the second category.
But for me, THE BIG QUESTION is: can I actually still write a simple program? I feel my head clearing somewhat, but the world seems to be seen through a dark glass. I used to do this work all the time, and I’m starting to panic that perhaps now I can’t (and the panic obviously isn’t making the task any easier). The books say that about 30% of PD sufferers develop some cognitive impairment, but how can you tell? What is PD and what is a normal process of getting older and slower and less able to learn new skills? A good friend of mine who was at least as good at programming as I stopped years ago because he just found it harder and harder to learn each new version of software. Is that what is happening to me, or is it something more sinister? If I look on the bleakly black side then
* I’m not reading as much or to the level I used to
* Driving has become a nerve-wracking task – though I’m safe because I’m scared
* Senior moments are getting more frequent and my short term memory is rubbish
* I could not sort out setting up this blog but needed help from #2, and before it has always been her who needed help from me with IT
* Finding the correct word is getting difficult – apparently a very common symptom of PD, but worrying nonetheless. It gives a sensation of time dilation where it seems like half a minute ticks by before the word comes to me, whereas others say it is really just a brief pause. Often I cope by walking away, and Marie pretends to ignore the pauses.
Have you seen Flowers for Algernon? A fine (SF) book and later film in which our hero starts out stupid, achieves a high level of intelligence helped by drugs, and then while fully aware of his plight looses it all, reverting to stupid. It always makes me cry.
Anyway, what this probably is, is a clear demonstration that a little learning is a dangerous thing. Between us, Marie and I have five degrees and every book on PD we could find on Amazon. I can tell you with some confidence that it is not a good idea to read all of them in one go, it will set off severe hypochondria in the most well-adjusted person – which I am not, so there’s my excuse.
25 May 2008
Fun with pills
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.
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.
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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