Marie was saying last week how I don’t perhaps get as much out of my time as I could, and in the right mood I can be persuaded to agree that this may contain a grain of truth. So let’s have a look at my day and see what time and energy Parkinson’s leaves me for doing things I want to do (or that she wants me to want to do).
3 am. Well, a typical day now starts rather early with me waking up around 3 am. Sometimes I fall asleep again unaided, but usually I have to give in and take a sleeping pill or I would remain awake, fully awake which is not a whole heap of fun in the middle of the night. With the pill, though, I wake again at 7 am – but the price is that I stay drowsy until mid-morning.
7 am. On waking up I take my Sinemet (L-dopa) pills and wait for them to take effect, which anything from 30 to 60 min for the stiffness to ease. I still have some twitching throughout the day, but the L-dopa reduces it some, and I guess I am also just getting used to it. So that at least is a good thing. I also take a high dose of Q10 as we have read somewhere that this may have a slight delaying effect on the progress of the disease. I don’t generally believe in alternative medicine, but hope can make you willfully gullible.
8 am. My breakfast is Wheatabix, not by choice but because the bowels also suffer from Parkinson’s and I now tend towards constipation. Such fun. Anyway, I cheat the health brigade by having lots of sugar on it.
8:30 am. And then for the challenge of the shower and of getting dressed. Actually, the shower itself is okay, and the L-dopa has given me back the pleasure of a wet shave, but it is getting more difficult to dry myself off now because I am too stiff to reach round my back or lift up my legs high enough. For the same reason, I find underpants/ trousers / socks tricky, while t-shirts are still okay, as are shirts so long as they come ready-buttoned. A sweater over a shirt is almost impossible without help, though – if I try on my own, I invariably end up looking like Quasimodo’s uglier cousin. All in all, the whole process, which used to be over in 15 minutes or less, now takes upwards of an hour, and I need a little rest at the end of it.
9:30 am. Twice a week I go for a physiotherapy session in the morning which involves a ten minute drive each way, plus a ten-minute struggle at each end to get into or out of the car. If I need to see my GP I can walk to his surgery, while my other less regular health appointments – neurologist, psychologist, works doctor etc. – are all so far away that Marie always comes with me as driver. Most weeks there is at least one such ‘extra’ appointment.
And otherwise I spend my time reading – both the newspaper, books (usually non-fiction and often work-related), and articles (always work-stuff) – checking e-mail pretty regularly, trying to work on writing this book we keep talking about, editing my collection of photos, searching and surfing the net.
Noon. I take the next batch of L-dopa at noon (if I forget, my trembling starts to get noticeable again pretty quickly).
I don’t eat an organized lunch, so day-time food is mainly grazing on bread and fruit and that sort of thing. In the afternoon I do much the same as in the morning. A couple of times a week I also find a reason to walk down to the centre of our village where the shops and post office and health centre are. And in between these things I probably watch 1-2 hours of TV in little bits of ten minutes here and 15 minutes there.
3 pm. I usually take a half-hour nap (or fall asleep where I sit) mid-afternoon, followed by more of the same as above. I must admit, though, that even though on paper it looks like I spend a lot of time reading and writing, at the end of the day I have disappointingly little to show for it. I always enjoyed finding things out more than I enjoyed writing about what I had found out, but as things stand now I don’t have access to a lab so am kind of forced by circumstances to spend more time than I would prefer on that part of my job that I enjoy the least.
5 pm. I take my last portion of L-dopa at 5 pm. After that I am frankly tired out, whether from having done stuff or, to be honest, from having struggled and not done stuff, so the rest of the time until dinner I spend mainly on staring vacantly at the telly. Twice a week I cook dinner, and although the meals I produce are usually fairly simple, it takes me a while. I enjoy it a lot, though, both the cooking and the eating.
7 pm is our normal dinnertime. Afterwards I wash up. Recently, I have also started to spend 15-20 minutes every day trying to learn my strange wife’s strange native tongue with a self-study book and her there to practice on. We have had several false starts at this, but I think this idea of a short time every day will work – it’s enough to feel that actual progress is being made, yet not so much that it becomes a dull chore.
8 pm. Afterwards, I might watch some more telly, or go and check e-mail again, or read a bit more. Because my sleep is not perfect (though far, far better than it has been), I get tired pretty early in the evening and regularly drop off. But I aim to stay up until at least 10 pm when I’m beginning to twitch again.
10 pm. I usually go to bed around 10 pm, so that is when I take my first sleeping tablets. I have experimented with taking more pills early at night to avoid the 3am pill and thus avoid the morning drowsiness, but that does not seem to work.
So, is this the active and rewarding life Marie would like me to have? Certainly not. Is it the productive yet leisurely life I hope for? Not really that either, there’s too much frustration at the lack of progress for that. How can it be improved? Answers on the back of a postcard, please! If I don’t get myself sorted out soon, I fear Marie may well have another go at ‘organizing’ me, and that is best avoided for both our sakes …
Showing posts with label sleeping pills. Show all posts
Showing posts with label sleeping pills. Show all posts
04 January 2009
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.
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 ….
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.
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