So how have I been doing lately, I hear you ask – don’t I?
Well, I still have problems getting off to sleep, and getting up in the mornings, so I’m not really myself until around 11:00 am. Or that’s my story. Marie’s is that if there is something I want to do or have to do, I’m up and functional within three quarters of an hour of taking my morning pills. I guess the discussion really is about what ‘functional’ means, but let’s leave that thorny little issue for another day.
My back ache is still there in the background (ha ha) which also affects my quality of sleep. I take a pain killer and have a lie down in the afternoon which helps some. I’m trying to get to a stage where I can stay awake and involved past 9:00 pm – it’s just so anti-social, but come 9 pm all I want is to climb into bed (I was going to say curl up in bed, but PD doesn’t allow curling).
There’s possible movement on the symptom front: Am I becoming more impulsive? Or merely more repulsive?
Well, we took the trip to Egypt at very short notice and I bought a new and rather expensive camera in duty-free, but the holiday had been talked about for months, and I’d been reading reviews of the camera for a long time, only waiting until I could see it in the flesh – which I did and promptly fell in love. And I have no regrets it a wonderful toy, and if I’m honest it’s also a bit of male jewelry, as in my lens is bigger than your lens.
About getting more repulsive...well, I used to the new camera to take macro pictures of my ear, which clearly show the parkinsonian ear wax (cerumen) that I produce by the kilo. Yeeech... I can’t say it has much of an impact on my quality of life, though sometimes I can hear the stuff rolling about inside my ear which is pretty horrid, and now I kind of wish I hadn’t taken the photos but could live on in happy ignorance of its appearance. It’s really very different from my pre-parkinsoniann ear wax. How do I know? Because I devoted several pages of my thesis to the fracture mechanics of (my) ear wax. Trust me, I’m a doctor.
Further on repulsiveness: I computed my BMI at 29.8 – just a few peanuts shy of obesity. My trousers are getting tighter, in a high-pitched-voice sort of way, or it could be a hernia developing. Anyway, Marie has decided it’s time for both of us to Make an Effort so the past week has been characterized by too much vegetarian food and too little pudding. I hate it when she’s right.
Lastly, the work–life balance. My book writing progresses slowly, and I’ve taken on the task of assisting in supervising an American PhD student who will visit our lab to do some work with the large intestine simulator (it’s a long story, and if you thought the ear wax was gross, well, this involves buckets of fermented poo). It’s an international collaboration: the student comes from the USA, the food samples are being prepared in Hong Kong, and we will use thin Dutch people’s poo and fat English people’s poo. Fascinating stuff, and it’s good to be involved. I’m also reading more, though nowhere near as much as I used to – the tiredness gets in the way, and even more so the back that makes it uncomfortable to sit in the same position for long, as one does when engrossed in a good book. Ho hum, you gets what you’re given.
Final interesting tidbit is news from my sister, who has persuaded BBC radio to do a 30 minute biographical programme about my father who was one the pioneers of computing at Manchester university in the 1950s. Cool, eh? So if there is any one out there with anecdotes or the like, get in touch.
15 March 2009
09 March 2009
Success and reward
I did it! I gave the lecture and it was, well, sort of OK. I didn’t freeze, turn to jelly or have a panic attack. I didn’t get a round of applause either, nor any questions from the students, but no one fell asleep and I think they actually absorbed some information, and I count that as a pretty decent achievement for 8:30 on a Monday morning.
I hadn’t realized how much giving the lecture would take out of me. I was ratty for days before giving the lecture and drained for days afterwards. It was good to prove (mainly to myself) that I could do it, but considering the effort involved I’m not sure I’ll volunteer to do it again.
A few days later I had an appointment with My Neurologist. What to tell her? What to ask? Things have been on a more or less even keel for the past month or two. The L-dopa is not quite as effective as it was, sleeping is still less than perfect, but generally I am content enough. We adjusted the medication a bit so I now take a controlled release Sinemet (L-Dopa) at night which stops me waking myself up by twitching, and I still take a sleeping pill to combat the mild REM-sleep disorder. The combination seems to work fairly well for me.
Marie is more sceptical. I don’t leap out of bed in the morning, bright-eyed and bushy-tailed, and I go to bed earlier and earlier, plus I take naps during the day - so I suppose I’m not that much fun to be around. Apathy, I think, or is it lethargy? One would be down to me, the other a common symptom of the disease. The jury remains out.
I have managed to work up some enthusiasm for the book I am writing, though. I’ve been rummaging around the internet for data on the fluid dynamics of the large intestine - no really, it’s fascinating stuff and there does not seem to have been much work done on it, although the basic physics seem to be fairly simple(ish). Anyhow, I’ve now got an interesting set of equations and suspect that if I torture them for long enough they might yield something useful.
In the much shorter term, we had been thinking of taking a short last-minute holiday – partly to see if this would agree with us as we have never taken a charter holiday together before, and generally expect and enjoy rather different things holiday-wise. In principle, I’d be happy to turn up at the airport some day and see what is on offer, but we decided to be a bit more conventional. Egypt’s Red Sea coast and snorkeling appealed to both of us – sun, beaches, warm(ish) water, and on the all inclusive packages even the drinks are free. There was a time when this would have been very attractive to me, but my total consumption of alcohol for the year to departure date was one beer, which was 100% more than Marie (oh, we are such fun-loving people to hang with...)
In the end, we booked using a method called hotel bingo. The deal was we did not get told which hotel we would be at BUT we were guaranteed a 5-star week for the price of a 4-star holiday. It worked well. We were met at the airport, shepherded onto a bus, and when we got to the hotel were fitted with a plastic bracelet which gave us free access copious quantities of food and drink. Two surprises: I took far more advantage of the latter than I had expected, and the other guests took far less, which together made for rather an idyllic time.
We had worried that we might get bored stiff sitting round the pool all day doing nothing, but we weren’t and we didn’t. We booked 3 trips: an outing in a ‘submarine’ to look at the spectacular coral reefs, a boat trip to the nearby marine national park Ras Mohammed where we snorkeled at three sites, and a jeep trip across the desert to another great snorkeling site.
I restricted myself to two episodes of snorkeling. It was spectacular, and our guide took pity on me and appointed himself my outboard motor. So I held on to a rubber ring while he swam ahead dragging me though the water at impressive speeds – I could have water skied behind the bloke. Anyhow, after the first two dives I decided enough was enough. While gravity made getting into the water ever so easy, the reverse was a bit more challenging...
Anyhow, we are now back in the flat land where it is damp and chilly, but where the cat was ecstatically happy to see us. Ahhh.
I hadn’t realized how much giving the lecture would take out of me. I was ratty for days before giving the lecture and drained for days afterwards. It was good to prove (mainly to myself) that I could do it, but considering the effort involved I’m not sure I’ll volunteer to do it again.
A few days later I had an appointment with My Neurologist. What to tell her? What to ask? Things have been on a more or less even keel for the past month or two. The L-dopa is not quite as effective as it was, sleeping is still less than perfect, but generally I am content enough. We adjusted the medication a bit so I now take a controlled release Sinemet (L-Dopa) at night which stops me waking myself up by twitching, and I still take a sleeping pill to combat the mild REM-sleep disorder. The combination seems to work fairly well for me.
Marie is more sceptical. I don’t leap out of bed in the morning, bright-eyed and bushy-tailed, and I go to bed earlier and earlier, plus I take naps during the day - so I suppose I’m not that much fun to be around. Apathy, I think, or is it lethargy? One would be down to me, the other a common symptom of the disease. The jury remains out.
I have managed to work up some enthusiasm for the book I am writing, though. I’ve been rummaging around the internet for data on the fluid dynamics of the large intestine - no really, it’s fascinating stuff and there does not seem to have been much work done on it, although the basic physics seem to be fairly simple(ish). Anyhow, I’ve now got an interesting set of equations and suspect that if I torture them for long enough they might yield something useful.
In the much shorter term, we had been thinking of taking a short last-minute holiday – partly to see if this would agree with us as we have never taken a charter holiday together before, and generally expect and enjoy rather different things holiday-wise. In principle, I’d be happy to turn up at the airport some day and see what is on offer, but we decided to be a bit more conventional. Egypt’s Red Sea coast and snorkeling appealed to both of us – sun, beaches, warm(ish) water, and on the all inclusive packages even the drinks are free. There was a time when this would have been very attractive to me, but my total consumption of alcohol for the year to departure date was one beer, which was 100% more than Marie (oh, we are such fun-loving people to hang with...)
In the end, we booked using a method called hotel bingo. The deal was we did not get told which hotel we would be at BUT we were guaranteed a 5-star week for the price of a 4-star holiday. It worked well. We were met at the airport, shepherded onto a bus, and when we got to the hotel were fitted with a plastic bracelet which gave us free access copious quantities of food and drink. Two surprises: I took far more advantage of the latter than I had expected, and the other guests took far less, which together made for rather an idyllic time.
We had worried that we might get bored stiff sitting round the pool all day doing nothing, but we weren’t and we didn’t. We booked 3 trips: an outing in a ‘submarine’ to look at the spectacular coral reefs, a boat trip to the nearby marine national park Ras Mohammed where we snorkeled at three sites, and a jeep trip across the desert to another great snorkeling site.
I restricted myself to two episodes of snorkeling. It was spectacular, and our guide took pity on me and appointed himself my outboard motor. So I held on to a rubber ring while he swam ahead dragging me though the water at impressive speeds – I could have water skied behind the bloke. Anyhow, after the first two dives I decided enough was enough. While gravity made getting into the water ever so easy, the reverse was a bit more challenging...
Anyhow, we are now back in the flat land where it is damp and chilly, but where the cat was ecstatically happy to see us. Ahhh.
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