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?
30 June 2008
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.
Subscribe to:
Posts (Atom)
