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.

09 February 2009

One-way conversations

Jon has had a hard week preparing for the lecture he gave this morning (which he will probably talk about in his next post), so this time I, me, Marie get to write.

We’ve both talked before in these blogs about the sense of isolation that is entirely of our making and comes from living in a country (Holland) where we don’t speak the language. That is to say, this is not something that has ever bothered us before since we know plenty of people who speak excellent English, but now that Parkinson’s is part of the mix, I for one would wish that I spoke Dutch well enough to go to some kind of support group. But instead of meeting others in the same situation face to face, I use the net – other people’s blogs, for instance. Trouble is that I don’t (yet?) feel comfortable responding to some blogger I have never met in the public sphere of blog comments. So, instead of posting to the author, why don’t I just tell you about this post I read the other day which set me thinking.

It was in the one blog I have been able to find that is written by another wife of a fairly-early-onset Parkinsonian, so many of the posts speak about concerns I have too – such as asking how other people will understand what is wrong with Jon when only I see him early in the mornings before his first dose of L-dopa has kicked in, and wondering when I get annoyed whether I am actually upset with some essential Jon-ness or with an aspect of Parkinson’s that isn't under his control, and fretting about how the disease will affect our future in practical, financial and emotional terms. For more, the address is http://lifewithshaky.blogspot.com/

Anyway, among all the good stuff was one post I didn’t agree with, where the blogger listed the various things she sacrifices to (her husband with) Parkinson’s:

I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my emotional and spiritual well being, etc.

See, I don’t think I’m sacrificing one little bit to Parkinson’s. “Sacrifice” implies an active decision to give something up for some higher purpose, personal or general – deciding to sacrifice your career prospects to have many children, or choosing to sacrifice your own comfort to perform good deeds for others. But I have had no choice in the matter whatsoever: I love Jon, not by choice but by some primal serendipity, so I share my life with him, and so anything that happens to him also happens to me. I have made no conscious sacrifices to PD, but I certainly have suffered losses to the disease. I have lost peace of mind, lost the innocent belief that good things will last, lost a lot of time and a lot of sleep, lost a range of previously possible futures, and I have regularly lost my temper in frustration and self-pity. (But really, what is that against everything Jon has lost?)

Inevitable losses come to us all and one just has to live with them as a condition of life, like being short-sighted or too old for a career in football. But I refuse to make sacrifices to Parkinson’s. It’s all words, of course, but I think what struck me was that (to me at least) someone who sacrifices is somehow inherently admirable, and that doesn’t feel right. If anything we do is to be admired, let it be how we cope rather than what we may be thought to sacrifice. Nor do we hanker to be pitied, although I admit that does somehow feel more appropriate.

Okay, enough about that now. There was a TV programme recently in the US that is being recommended by lots of PD blogs, called My Father, My Brother and Me because the journalist behind it comes from a family with these three PD sufferers. Well worth watching, I thought, as it is serious and informative, and also gives an inkling of what life with PD can be like. The full programme can be seen at http://www.pbs.org/wgbh/pages/frontline/parkinsons/

One of the points discussed is research into how exercise might affect the development of the disease. Jon and I aren’t great at sticking to any kind of exercise regime – I mean, we both kept smoking long after anyone with any sense had stopped, so it’s not as if we’re into looking after ourselves. However, we got ourselves a basic Wii console some months ago and have both been playing regularly, and last week we added a Wii Fit foot board. It is the greatest fun! We both have addictive personalities, so there has been some fighting over the controls. Jon is not normally very competitive – or, at least, he normally only competes against himself and the memory of his dad – but I am, so Jon gets a very satisfying reaction out of me when he beats me. I try a bit of everything, but Jon has quickly specialized in slalom skiing where he is way ahead of me.

So the Wii gives both of us a bit of much-needed exercise (while the outdoors remains uninvitingly Februarish), and because most of the games are about quick reactions and controlling your balance, I think it might actually be pretty appropriate for Parkinson’s. At least, that’s our excuse.

23 January 2009

Once more, with feeling

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.

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.

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.