I've been invited to give a lecture – it on a topic I've taught before, I already have a set of power-point slides that I can re-use, and I used to enjoy standing up and talking about my research. BUT – can I still do it?
The session is 8:30 to 10:15, which means rather a lot of talking. My speech therapist and I agreed some months ago that I was ‘cured’ in terms of our treatment goals, which were to get me to the stage where I could give a 20 minute talk without freezing, stuttering or losing the plot – and do so loudly enough for an audience to hear me, and clearly enough for them to understand me.
So, a check of the resources:
1. Do I know the topic? Well, yes, I’m quite the expert even if I say so myself. Check.
2. Am I good enough at public speaking? Again, yes. I have lectured for years, have spoken at many scientific conferences, and I managed to entertain a lay audience one year at the Cheltenham Science Festival. Check.
3. Is my body up to it? This may sound really lame, but even though I normally wake at 7:00 am and take my pills immediately, it is not until around 10:00 am that I begin to feel human – and, rather importantly, safe to drive. So to get to the university in time, I will need to take my pills around 5:00 am instead. But since the pills only give me 4-5 hours of peak functioning, the very early start will mean there is a risk that I might start exhibiting symptoms before the end of the lecture. But couldn’t I just take my next dose a bit early, I hear you ask (nothing wrong with my hearing, you know). Well, the snag there is that both under and over dosing give me similar symptoms of freezing, twitching, loss of speech and tremor. So there’s no confident check in this particular box.
Am I being an old woman? Maybe – but can I involve students as guinea pigs to test how much the PD has screwed up my ability to teach? Or am I scared of failure and therefore trying to avoid finding out by not even making the attempt? It seems somehow unethical to me to subject students to me when I’m off-peak – I mean, they will presumably turn up because they feel the need to hear about the subject, so who am I to deprive them of a more functional lecturer?
Or maybe I'm just having a bad day and there is in fact not a single problem that cannot be overcome:
Against quiet speech: use a MICROPHONE.
Against difficulty in remembering words: put the text on slides.
Against tremor: avoid using a laser pointer but go for a heavy stick (which damps out the tremor).
Against slurred speech: tell the students at the beginning that I have PD, and stress that I am neither drunk nor (particularly) nervous – and invite them to tell me if they find me hard to understand.
Against a 5am start: use wife as chauffeur (though a 6am start on meds is probably still inevitable).
I'll keep you posted as to how (and if) I do.
23 January 2009
18 January 2009
Me and my health centre
It’s that time of the week again when I sit down and attempt to make my life sound interesting. Not an easy task, as you will soon become aware...
Monday morning I went to my local health centre to make an appointment with my GP and to request a repeat prescription. Being in a rural area, they have a kind of sub-dispensary where you can order repeat drugs, have the order reviewed by your doctor without needing an appointment, and then collect said drugs some time later.
Monday afternoon we visited our Shrink. I'm a little ambivalent about these visits as it seems to me that we may be inventing things to complain about just to fill the time. But he’s a nice enough chap – and very good at what he does, which is somehow to put our various moans into greater perspective, so all in all it was a useful visit.
Tuesday morning I had my regular-appointment with my movement specialist. My biggest problem at the moment is picking things up from the floor. So we started with me repeatedly picking up a rubber ring from the floor. That was actually fairly easy as I can get my fingertips to within about 5 mm of the floor. The problem starts with thin things, paper money for example. I had a 50 euro note which I dropped onto the floor – now that was a real challenge to pick up, but as I'll do (almost) anything for money I kept at it.
Tuesday afternoon I went to collect my pills, and as it turns out they give me the wrong pills (an old brand instead of my current drug of choice). Being a highly efficient individual (not), I can’t remember what the right pills are called so I have to go home empty-handed and return Wednesday morning with name of medicine written down. Wednesday afternoon I trudge back go to the surgery to collect pills only to find that since I get them in bulk (900 tablets at a time, enough for 3 months), they have had to place a special order – so I need too come back again Thursday.
Friday morning I have my appointment with the GP. I've been having pains in my right hand. He reckons it could be carpal tunnel syndrome and suggests I see a neurologist. I’ve got one of those already, of course, so I'll bring up the hand at our next consultation. It’s just one more minor irritation to put up with. Oh well, I guess if I can cope with Marie for 14+ years, I can also cope with progressive neurological decay and the odd musculo-skeletal syndrome.
So the upshot is that I've been to the health center every single day his week. Exciting stuff, eh?
In between trudging back and forth I've done a fair bit of reading: What the Nose Knows, a pop science book about smells and smelling that Marie gave me for Christmas and that might actually prove useful for my own book on eating, The Fat Duck Cookbook of which I have gracefully accepted a free copy in return for writing a whole page and a half in the section on the science of cooking, and I've just started on Bonk: The Curious Coupling of Sex and Science which we bought on holiday, because we just had to.
Monday morning I went to my local health centre to make an appointment with my GP and to request a repeat prescription. Being in a rural area, they have a kind of sub-dispensary where you can order repeat drugs, have the order reviewed by your doctor without needing an appointment, and then collect said drugs some time later.
Monday afternoon we visited our Shrink. I'm a little ambivalent about these visits as it seems to me that we may be inventing things to complain about just to fill the time. But he’s a nice enough chap – and very good at what he does, which is somehow to put our various moans into greater perspective, so all in all it was a useful visit.
Tuesday morning I had my regular-appointment with my movement specialist. My biggest problem at the moment is picking things up from the floor. So we started with me repeatedly picking up a rubber ring from the floor. That was actually fairly easy as I can get my fingertips to within about 5 mm of the floor. The problem starts with thin things, paper money for example. I had a 50 euro note which I dropped onto the floor – now that was a real challenge to pick up, but as I'll do (almost) anything for money I kept at it.
Tuesday afternoon I went to collect my pills, and as it turns out they give me the wrong pills (an old brand instead of my current drug of choice). Being a highly efficient individual (not), I can’t remember what the right pills are called so I have to go home empty-handed and return Wednesday morning with name of medicine written down. Wednesday afternoon I trudge back go to the surgery to collect pills only to find that since I get them in bulk (900 tablets at a time, enough for 3 months), they have had to place a special order – so I need too come back again Thursday.
Friday morning I have my appointment with the GP. I've been having pains in my right hand. He reckons it could be carpal tunnel syndrome and suggests I see a neurologist. I’ve got one of those already, of course, so I'll bring up the hand at our next consultation. It’s just one more minor irritation to put up with. Oh well, I guess if I can cope with Marie for 14+ years, I can also cope with progressive neurological decay and the odd musculo-skeletal syndrome.
So the upshot is that I've been to the health center every single day his week. Exciting stuff, eh?
In between trudging back and forth I've done a fair bit of reading: What the Nose Knows, a pop science book about smells and smelling that Marie gave me for Christmas and that might actually prove useful for my own book on eating, The Fat Duck Cookbook of which I have gracefully accepted a free copy in return for writing a whole page and a half in the section on the science of cooking, and I've just started on Bonk: The Curious Coupling of Sex and Science which we bought on holiday, because we just had to.
11 January 2009
Do not go gently
It has been cold here, with ice and snow, so I went for a walk. Have I mentioned that I have a slight limp? Well, my right leg tends to drag, which in normal conditions is fairly unpleasant as it sets off a grating sensation in my whole right side. But walking on snow, I find that I glide smoothly over the surface. It was nice, that. Not nice enough to move to the Arctic circle for, but nice enough for me to go for another walk when I’ve finished this post.
Otherwise, I’ve been doing the three R’s this week: reading, (w)riting and resting, in roughly equal proportions. I am, at last, making progress on my joint writing project, and feeling quite virtuous and perhaps even a little bit fired up.
But it’s the reading that has been the most rewarding this week. Two things in particular. The first is a book about recovering from stroke, My Stroke of Insight by Jill Bolte Taylor, a stroke-stricken brain scientist who knows the subjects literally inside and out and who took 8 years to recover. Parkinson’s patients should probably read the book backwards as we travel in the opposite direction from the author, getting worse and worse. But there are interesting observations in there, also for PD.
Closer to home, Marie stumbled across a blog called Lab Rat’s Desk, written by a woman with one of the PD+ syndromes (the medics can’t decide what to call it). She writes very well indeed, illustrates the text with her own stunning art work, and is a prolific blogger. Somehow I find her blog reassuring. Her body is clearly letting her down very badly (and she apparently used to be a ballerina – one of God’s mean little jokes), and she is not being brave about it. Instead, and utterly reasonably, she complains bitterly and honestly. I wish her well. She represents my future, but the good news is, in her words:
“My life is no picnic. Like most persons with these diseases I cannot sleep, eat, walk, talk well. I have had to repeatedly teach myself toilet-ing to prevent incontinence. I have had the torments of being treated like a child by the well meaning, and the impatience of those unwilling to wait for my considered answers. Sometimes my food has to be liquid, and other times my stomach is a bottomless pit because my broken brain tells me I have to keep eating. I am in constant pain where my neck and face contort from spasms, as do my feet and legs and on bad days my hands also. – it goes on in similar vein, but then comes a but …..
But, it is not the worst disease, not by a long shot. I have had friends die from far more horrible diseases and at much younger ages. Unlike Huntington’s I have my ability to think. Unlike most cancers there are no awful, painful and frightening treatments, which may fail. I have had no body parts amputated. My mother had her breast amputated in her forties and she grieves the loss each and every day. A friend of mine has Scleroderma and has her body slowly turning into virtual stone until her lungs will no longer expand and contract. She is not old, and has not had a normal day with her children as she was ill from the time they were young. Mine is not the worst disease.”
For more, go to http://labratsdesk.wordpress.com/2009/01/
In fact, I have spent quite a bit of time in front of the computer this week, not just reading blogs, but also because I recently got invited to Facebook, which turns out to be a wonderful non-productivity tool. I haven’t amassed many ‘friends’ yet, but among them are people I went to school with who are suddenly crawling out of the woodwork. As it turns out, someone has even posted a picture of me aged 17, playing guitar for the band Simple Harmonic Motion. No, I’m not telling you how to find that... I’ve been uploading some of my own pictures too. It’s kind of fun and its nice to get feedback and to collect new (old) friends. Plus it makes me feel all plugged in and alive to be part of this global cyber-community.
Otherwise, I’ve been doing the three R’s this week: reading, (w)riting and resting, in roughly equal proportions. I am, at last, making progress on my joint writing project, and feeling quite virtuous and perhaps even a little bit fired up.
But it’s the reading that has been the most rewarding this week. Two things in particular. The first is a book about recovering from stroke, My Stroke of Insight by Jill Bolte Taylor, a stroke-stricken brain scientist who knows the subjects literally inside and out and who took 8 years to recover. Parkinson’s patients should probably read the book backwards as we travel in the opposite direction from the author, getting worse and worse. But there are interesting observations in there, also for PD.
Closer to home, Marie stumbled across a blog called Lab Rat’s Desk, written by a woman with one of the PD+ syndromes (the medics can’t decide what to call it). She writes very well indeed, illustrates the text with her own stunning art work, and is a prolific blogger. Somehow I find her blog reassuring. Her body is clearly letting her down very badly (and she apparently used to be a ballerina – one of God’s mean little jokes), and she is not being brave about it. Instead, and utterly reasonably, she complains bitterly and honestly. I wish her well. She represents my future, but the good news is, in her words:
“My life is no picnic. Like most persons with these diseases I cannot sleep, eat, walk, talk well. I have had to repeatedly teach myself toilet-ing to prevent incontinence. I have had the torments of being treated like a child by the well meaning, and the impatience of those unwilling to wait for my considered answers. Sometimes my food has to be liquid, and other times my stomach is a bottomless pit because my broken brain tells me I have to keep eating. I am in constant pain where my neck and face contort from spasms, as do my feet and legs and on bad days my hands also. – it goes on in similar vein, but then comes a but …..
But, it is not the worst disease, not by a long shot. I have had friends die from far more horrible diseases and at much younger ages. Unlike Huntington’s I have my ability to think. Unlike most cancers there are no awful, painful and frightening treatments, which may fail. I have had no body parts amputated. My mother had her breast amputated in her forties and she grieves the loss each and every day. A friend of mine has Scleroderma and has her body slowly turning into virtual stone until her lungs will no longer expand and contract. She is not old, and has not had a normal day with her children as she was ill from the time they were young. Mine is not the worst disease.”
For more, go to http://labratsdesk.wordpress.com/2009/01/
In fact, I have spent quite a bit of time in front of the computer this week, not just reading blogs, but also because I recently got invited to Facebook, which turns out to be a wonderful non-productivity tool. I haven’t amassed many ‘friends’ yet, but among them are people I went to school with who are suddenly crawling out of the woodwork. As it turns out, someone has even posted a picture of me aged 17, playing guitar for the band Simple Harmonic Motion. No, I’m not telling you how to find that... I’ve been uploading some of my own pictures too. It’s kind of fun and its nice to get feedback and to collect new (old) friends. Plus it makes me feel all plugged in and alive to be part of this global cyber-community.
04 January 2009
A day in the life
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 …
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 …
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