Archive for the ‘life’ Category
I think it’s time for another annual update, though I doubt that this one will be shorter than the last. The “shock of the new” has worn off, somewhat, and there have been fewer surprises. It hasn’t been a boring year, however.
The second year at University College Dublin (UCD) did not go quite as well as the first, but I’m still on track for a solid 2.1 degree, a.k.a. “Second Class Honours, Grade I” in B.Sc Structural Engineering with Architecture. A “First” is a little beyond me, since it requires excellent results on all subjects, and I don’t see that happening. In some subjects – not all – I’m running in to problems with the teaching and assessment methods.
My grade point average (GPA) was dragged down by two subjects in the second semester: in one, Theory of Structures, I enjoyed the lectures very much, and did well in tutorials etc., but when it came to the exam, I found that I could not remember every procedure and every formula. So much of it was empirical in nature, derived from experiment and not from first principles, so there was nothing “behind” most formulae for me to hang on to.
In another subject, Statistics, the problem was that the lecturing was frankly poor, with the lecturer often late and wasting time on silly things. He seemed to expect the students to be computers, remembering random pieces of information from his and other subjects. When no-one gave an instant answer to an integration problem (from calculus), the result was a 20-minute rant on how we were not trying hard enough. As if that was not bad enough, I found that Statistics affected me like no other subject ever has: an overwhelming, enervating, sense of “I don’t care”. I know that some of it is relevant to my future – I was already aware of some parts – but I could not help thinking that most of it was not, and I may never see any of it ever again.
In particular, I’m getting more frustrated with examinations. For most courses in my programme, I think it does not make sense to have the whole course depend on what I can cram in to my head and regurgitate on to paper, by hand, in a room filled with students, in a two-hour period. You end up studying to pass the exam, not to further your understanding of the subject – though you would expect those two goals to overlap. The degree to which this applied depended on the subject, an in one subject in particular, there was no exam, and the entire course was based on continuous assessment, i.e. assignments.
If this was happening in every subject, I would start to suspect that the problems lay primarily with me, but a few other subjects showed me just how good it can be. In Mechanics of Solids, the lecturer was excellent, focusing primarily on actual problems and not on abstract theory. The assignments were challenging but doable, and the exam fell in to place nicely, leaving me with a solid A-.
In my past work experience, the standard of work we had to produce meant that it was always necessary to check sources, and use whatever resources and tools were available to us, and not try to do it all from our heads with pen and paper. I do not expect my future to be much different: rather than using my head to store information, it will be used to process information in to knowledge, and (hopefully) wisdom. I thought about drawing a “wisdom pyramid” to illustrate what I mean, but a quick internet search shows that many are thinking along the same lines. The diagram to the right is courtesy of the Institute for Innovation & Information Productivity (IIIP).
At this stage in my degree programme, UCD seems to be expecting me to operate at the lower levels, wasting energy that could be better spent on a deeper understanding of the subject. It looks as if I that will have to wait for the Master’s years – if I can afford them.
The only thing to report on this front is that I’ve passed the end of the two year trial of FTY720, and am now on the extension phase of the trial. In this phase, I’m definitely on the drug – no more placebos – but I’m not being told what the actual dose is. I should soon be told what I was on in the first two years of the trial.
With multiple sclerosis (MS), the symptoms can be highly variable, and dependent on factors other than the MS itself. It changes how your body reacts to certain stimuli and situations; for example, I have been warned against extreme heat, a warning I definitely violated this past summer (which I will say more about later). In general, though, I can consider the situation well under control.
There are certain constants in my case: the L’Hermitte’s Sign in my neck can be considered a marker of permanent spinal cord damage: I can not bend my head forward without tingles shooting down to my feet. The severity varies: it’s worse when I am tired, but also first thing in the morning, after my spine stretches during sleep.
Some things vary, such as my memory performance, which partly let me down during the last university exams. I do experience fatigue, but it doesn’t just happen: I don’t get tired if I don’t do anything, but when I do things, I get more tired than I used to, and more quickly. I can still walk miles a day, but I feel the effects more. Still, this is turning out to be a very manageable condition.
After a few attempts at finding work, I could see that the employment situation here in Ireland is such that I need not bother. Where there are openings, they are being bombarded with applications, with the result that you need to be a perfect match to the position, complete with plenty of relevant experience. (I saw reports of a thousand applications being received for one simple temporary teaching post.) At this in-between stage in my study, with only summers free, I am not a fit to any job at all.
May was largely taken up by university exams; June by preparations to move house – again – and the move itself. My new place is closer to the university in general, and much closer to the parts of the university I will be visiting the most, specifically the Civil Engineering department. July was a quiet month of settling in, with several hospital visits associated with switch to the FTY720 extension trial. Finally, August arrived.
On the last day of July I flew to Houston, Texas, to visit old friends of mine, staying in their house about 50km north for four weeks. The daytime temperatures rarely went below 30°C, usually exceeding 35°C, which explains why everything is air-conditioned. I think the kids were pleased to see me: there are photos of me, on the couch, with all three of them on top of me (a classic dogpile). We visited Johnson Space Centre, including Mission Control, had a good steak dinner, and even got to go to a baseball game. (The Houston Astros beat the Florida Marlins 4-1.)
My interests in architecture and cities meant that I really wanted to see downtown Houston too, which took some doing. My friends live in a different county, out where the Houston Metro buses don’t run, so the best way to do it was to travel to my friend’s office, which was closer, and get the buses from there. The service was surprisingly good: the buses weren’t that regular, but they did run to schedule, so you could plan the trip. best of all: a trip costs just $1.25, including a free 2-hour transfer if you use a smart card, which I did.
The scale of Houston made it slightly daunting to someone on foot, in that heat, but after a little research and familiarization, I found Houston scored highly on my “friendly city” criteria: you could tell where you were and where you were going, things worked as advertised, and it was possible to leave the map in the pocket and navigate by intelligent guesswork. The downtown area features a network of tunnels linking the various buildings, complete with coffee shops and restaurants; these cater to office workers, mostly closing by 3PM. Up on the street, though, the locals suffering the heat presented the other side of Houston: largely Hispanic or African-American, and clearly impoverished, some apparently refugees from New Orleans.
One pleasant surprise: it was possible to walk straight in to the tallest building in Houston, the Chase Tower, and take an elevator to the Sky Lobby on the 60th floor: no cost, no formalities of any sort, just an elevator that makes your ears pop. I also paid a visit to the Museum of Fine Art, wandered through a wall-to-wall Who’s Who of Impressionism, and found myself standing in a room holding seven Picasso pieces. The place was nearly empty, even though it was Free Thursday.
Back in Dublin, I’m preparing to start university again on Monday, though I’ve already been back there several times. I’m involved with the Mature Student Society there, and helped out on the orientation day last weekend, giving a short speech about my experiences and motivations. I still find it easier to speak in public than in private, for some strange reason.
The Asus eee PC 1000 is still going strong, running the Ubuntu Linux Netbook Remix. It survived the trip to the USA with flying colours, and over the last year, about the only problems it’s experienced have been those I caused myself. In the university library it’s kept me typing for over five hours at a stretch.
My Houston friends gave me a parting gift, in the form of an Apple iPod Touch (8GB). I wouldn’t normally buy any Apple products, due to their corporate policies (DRM, lock-in, the walled garden, etc.), but this is turning out to be extremely interesting. It’s a very good MP3 player, but I didn’t know it had wireless networking, email capability, and more. It’s basically an iPhone without the phone, which coincides nicely with my current plans to cancel my current mobile phone account. (I’ve been overcharged by my current provider, and I’ve had enough.)
The applications are also very interesting. For example, I’ve found a version of the Ilium eWallet software I’ve used for years, for storing passwords and other sensitive information. There’s also a version of Skype, as well as some interesting games, such as Jelly Car and iMafia III. It’s only been about ten days at this time, so I’m still getting used to the iPod.
Another year, another birthday, another 60 credits, another step closer to … what? I ended the previous annual report with a hope that the world wouldn’t fall apart under my feet, and look at what happened. I was expecting a housing market crash, but I was not expecting such a monumental balls-up. Never mind sub-prime mortgages, I had much more to learn about insurance, derivatives, and the dreaded Credit Default Swap. Still, it could be worse: I seem to have picked a good time to be absent from the job market and living a low-income, low-expenditure lifestyle. I’m having health checks and receiving MS therapy at no cost to me, and I even had enough slack, financially, to afford a trip to the USA, so I have to say that life is pretty good. I think it’s time to put this report to bed, and follow it there. Until next year, good night.
Hello again. It’s exactly a year since I wound up the blogging, and a good thing too. What few readers I had would have been bored senseless, had I tried to describe the few events of the past year. I can probably summarize everything that actually happened in a few paragraphs – so let’s see how that goes, shall we?
I finished First Year with only minor problems, passing all 12 courses I had: six exams in December, and six in May, for 60 credits and 1/3 of a B.Sc degree. Each involved sitting in a shed, usually with over two thousand other students, all fighting to keep their brains oxygenated. However, I have noticed that there’s an awful lot of rote memorisation involved, which I am having some difficulty with. I had to cram like crazy for the Architecture exam, which was basically a case of dumping my brain on to the paper. I’m amazed I scored a B- on that one, with the amount of nonsense I spouted. (I now know where the Monadnock Building got its name - as if I care.)
It was even true of Maths, which I was not expecting: we’re being expected to memorise long algorithmic sequences of operations, going in to far too much detail for an Engineering curriculum (in my opinion). Where are the Engineering applications that we were promised? Still, I didn’t help matters by skipping all tutorials in the second semester: I got very little out of those in the first semester, and attending the ones in the second semester would have required me to hang around the campus for six hours of nothing.
Second year starts in just over a week, and I’m raring to go, even more so than last year. It’s partly because more of the work is relevant to the degree, unlike the first semester. As for the Maths… well, at least I can see the hill I have to climb. This semester it’s Partial Differential Equations mixed with more Matrices, so I’ll have the pleasure of learning how to calculate the Curl of a Vector Field and more. I can actually see how those relate to Engineering, which is a change for the better.
My new-found enthusiasm is also related to boredom, since summer has been a dead loss here. It’s been one long procession of apathy; not mine, but that of others towards me: job applications going unanswered, and silence from people who’d normally keep me updated on how they’re doing, including former work colleagues. I’m still looking for a flatmate, and replied to a dozen “room wanted” ads: nearly all fell on dead keyboards.
You know you’re turning in to a grumpy old man when you find yourself saying “it wasn’t like that when I was young”: it is common courtesy to reply to correspondence with something, even if it’s a “no”. It’s doubly annoying when you consider how trivial it is, these days: if you receive 100 applications for a job, it’s the work of a few minutes to paste 99 email addresses in the BCC field, and add a few lines of “get bent” boilerplate. Right?
So, I’ve been spending the time reading, computing, writing a bit, got a provisional driving license, and I even did my taxes. As on the previous occasions I tackled the full tax returns, I expected difficulties or disagreement about my figures, and on this occasion the result was also the same as before: no problems at all. This time around it meant a fairly hefty refund, and I received a cheque in the post.
That refund was very welcome to a student with no job, and part of it went on a new laptop, my first for six years, which I can also call a belated 40th birthday present. (My birthday fell in the middle of the May “cram week”, just before the exams.) I plumped for a black ASUS eee PC 1000, the slightly larger version of the ground-breaking “netbook” that took the computing world by storm in 2007. This one is larger externally and internally, with a 10-inch screen, 40GB solid state hard drive (compared to the original 4GB), and a keyboard more suited to adult hands. It’s still much lighter than a typical textbook.
The power-efficient Intel Atom processor and larger battery have already given me over five hours of continuous use, which I know how to improve on by turning things off. It’s not as powerful as the commodity 15-inch laptop I could have had for the same price, but more than powerful enough as long as I don’t try to run Windows Vista on it. Solid state drives are still more expensive, but more reliable and quicker to respond (if not necessarily faster on bulk data transfers). This netbook is more suited to use in lectures or in the library: small, discreet, and dead quiet.
Not much else has happened in the technology area. My HTC S620 cellphone is heading for the two-year mark, still working perfectly, and even looks almost as good as new. Even the battery, the part that is expected to degrade over time, is failing to give me any trouble whatsoever, and synchronisation is still painless compared to the Nokia I had before this.
Another “highlight” of my July was a repeat of a “highlight” from January: the six- and twelve-month checkups in the FTY720 trial. These were full workups, including the usual pulmonary function tests (PFTs), optical coherence tomography (OCT), and magnetic resonance imaging (MRI) scans. I’m definitely getting better at the last mentioned, which came in handy in July when I was called back for additional scans. The drug company asked for some specific protocols that forced the MRI technicians to get the manuals out, swap bits around on the machine, and call a doctor down to inject me with some non-standard contrast-enhancing gunk. I just zoned out, lay back, and thought of Scotland, as Tesla’s Tumble-dryer tossed me around and spat me out.
Halfway through the two years, it’s hard to say whether I’m on the trial medication or not, which is a good thing, since I am supposed to be “blinded” to counteract he placebo effect. One danger is that the other supplements I’m taking – including Vitamin D – are a factor in my generally good health. Oh well. I mustn’t get cocky, and think I have the MS totally under control; if I do, it might come back and bite me on the bum, just as it did 18 months ago, after I returned from Denver.
OK: it took more than a few paragraphs; this report is now well over a thousand words long. I’ll have another thousand words next year, give-or-take a thousand. I may also publish a 900-word short story I wrote a month ago, for the Writer’s Weekly 24-hour contest: if I win or place, they’ll publish it themselves, of course; that’s not likely to happen, even though this one was a substantial improvement on my first attempt.
While not much is happening here, plenty is going on outside: back in 2006 I commented on how house prices were soaring far beyond the ability of people to pay for them, and predicted “this can’t go on”: it hasn’t gone on. I hate to say “I told you so”… who am I kidding? I told you so. I’m looking forward to the day when houses and flats are no longer investments you can use to make money off other people, and revert to their traditional status: homes for people to live in.
Tonight, however, homes are under threat, but not just any random homes: the same New Orleans homes that felt Katrina’s hangover, almost exactly three years ago, might be side-swiped by Gustav in about twelve hours time. With just over two months to go before the US Elections, that country looks like a packed bus heading for a brick wall: the rest of the world can only observe, in morbid fascination, while two lousy drivers fight each other for the wheel.
Elsewhere… never mind. Between Russia, religious nutters, energy crises, terrorism, Ludditism, an Internet full of crap, poverty and overpopulation: this world is not one I recognise, or would want to. Nothing new there, then: I have plenty to do in the next two years, which may stretch to four (if I can do a Master’s degree); I’m not asking much, just that the world doesn’t collapse under my feet, while I take some time out of the rat race, and try and build myself a life I can live with.
Earlier this evening, I walked out of the office after my last day as an employee in the IT industry. For now, at least, and for good if I have any control over my future. We had our “official” send-off in the pub two weeks ago, so today there was no fanfare, no send-off beyond a few handshakes, and electronic well-wishes from half-a-dozen time zones. That was how I wanted it; in most senses but the physical, I left long ago.
Tomorrow is the first day of orientation at University College Dublin, a day dedicated to we “mature students”. The main orientation starts on Monday, but I will not be involved until Thursday and Friday next week. The few days off were a welcome surprise that will come in handy. On the Monday after that, the real work starts; in the first year, my main worry is the Maths, since in my last years of school, the introduction of Calculus sent my marks in to a downward trend from A+ to B-. The same was not true of Physics and Chemistry, which I enjoyed all the way to my final A, and which forms a smaller part of my course.
The other side of the course is creative; it is a mixture of Engineering and Design, with the prospect of something more than mere numbers at the end of it. Outside the class, I’m looking for creativity in other fields too, and intend to get back in to playing music after too long away. I ordered a new Tune 4-string bass from Germany, earlier this week, a demo model at a knockdown price: I guess an amplifier is next: something portable.
I don’t expect to escape computers altogether, and I would not want to: I know they will be part of my future studies and work. If anything, not having to deal with a multitude of computer problems may rekindle some of my old enthusiasm for using them in creative ways, but I want and intend to live and work in the real world, once the studies are done. What I am leaving behind is the idea of computing for computing’s sake. Blogging is one example: it used to mean something, to me at least, but those days are over.
If a hunter shoots his gun in the forest, but there’s no-one there to hear it, did it really go off? In the real world, you can go and look at the hole in the
squirrel tree, and you have the evidence that the gunshot really happened, and there were consequences. In writing this blog, I’ve been a poor hunter in a virtual forest, taking potshots at tempting targets, and never knowing if I actually hit anything. Today’s bloggers are more focused on a particular target; they know what they are doing out here, and wear better-fitting armour, but they are not much better at leaving holes in the real world.
As a hunting season ends when the majority of the hunter’s prey has migrated to warmer climes, my blogging season is now over; my reasons to be out here, in the chilly virtual evening, have flown away, so I am packing up my weapons and taking them home. There’s not much in my swag bag, but I did not go hungry. My pantry is well-stocked for the winter, and that will suffice. If a new season comes, will I step outside again, blunderbuss over my shoulder? I don’t know; that, too, must suffice.
No, it’s not real: the Gematriculator is a spoof Numerology analyser for web pages or text. Well, if this says good things about the site, I can’t take much of the credit: it’s analysing the underlying HTML code too, and most of that is generated by wordpress.com and the Theme I use.
My two years of pill-popping have started: so far I have three bottles of capsules from America, complete with Federal warning labels, each with about a month’s supply of… a lot, a little, or nothing. The capsules are the smallest I’ve ever seen, so small it’s hard to imagine anyone having trouble taking them. Since I have to take one a day, I’ve set up alarm reminders, which means I won’t be forgetting to take my vitamins, either.
I spent most of the day just sitting around, and was able to write a few thousand words of… well, that’s for another day. There was no internet access, so no normal work was possible, but I could take coffee breaks. The worst parts of yesterday’s hospital visit were the ECG exams. (Electrocardiogram, also known as EKG.) I had one in the morning, before the first dose of medicine, and another later in the evening.
If you know about the ECG, you might be asking: what’s the problem? It’s quick, non-invasive, and all you need to do is lie still. Well, all that is true, but in my case the problem is preparation. I’m male, so I don’t get the luxury of modesty: I’m lying on a trolley with my shirt off, while everyone and their sister walks past, or pokes their noses in to say Hi! to the nurse. A pretty female nurse, who has to repeatedly reattach electrodes that refuse to stick to my hairy chest. It took alcohol swabs, surgical tape, and a threat to break out the razor and shaving cream, before they held still long enough for a minute’s data.
What I said before about being patient number one turned out to be untrue: I was the first going in, true, but the last going out with a bottle of pills. Well, not quite the last, because I made a new friend yesterday: Cathy, who stayed a little longer than me, and whom I will hopefully see again, on my next visit in two weeks’ time. After the first hour, during which we both failed to present any symptoms whatsoever, we went out for lunch. We also hung out during the day – but not while she was having her ECG: she, at least, got to enjoy a little modesty.
Since I moved to Ireland, just in time for the Millennium celebrations, I haven’t quite settled here. I’ve considered my move temporary, one that might be reversed at any time. I have even kept a couple of UK credit card accounts open, with small credit balances costing me nothing, in case I moved back there.
I must write and close those accounts: this year, for the first time since moving to Ireland, I’m making a commitment of sorts to living here. More than one commitment, actually: at the beginning of September I will be starting a three-year university course, but this week I start a two-year drug trial. Neither of these commitments are irrevocably tied to Ireland, strictly speaking, since they could be continued in another country, but such a move is not in my plans.
The FTY720 (fingolimod) drug trial is a go; the drug company (Novartis) thinks I’m a match, but asked me back for an additional MRI last Friday, since they thought too much time had elapsed since the last one. That takes my tally of spins in Tesla’s tumble-dryer up to four. This time I asked for extra padding behind my head, which made the experience much less painful than before.
The first dose of the drug (real or placebo) will be this coming Thursday: a day of mostly sitting around, so I’ll have the Tablet PC with me. If there’s an Internet connection, I may be able to get some office work done: if not, I have offline writing I can do more on, and I’ll carry a book or two.
I’ve been warned that there’s a small chance that I will be admitted to hospital as a patient, so I can be observed overnight: I suppose that depends on how many beds are free, in one of the biggest and busiest hospitals in Ireland. The chances of this happening will be increased for the same reason I’ve experienced delays and repeat tests: in this current study I am patient number one, the one they are testing all the procedures on.
If I survive that I have a detailed two-year schedule to follow, currently on paper with dates that I need to enter in to my work computer. From there it will be synchronised to my phone, so that I’ll be reminded. Twelve medical examinations will include six eye scans (OCTs), six lung tests (PFTs), and three more MRI scans.
Hey, it could be worse… I could be paying for all this.
We’re almost at the end of the day after Independence Day, and I’m finally getting the opportunity to sit down and write a little about my own Independence Day, 2007. I’m not American, but I had one, nevertheless.
July 4, 2007, was the day I started quitting my job, at a major IT company. I say “started” because I haven’t actually resigned yet: it’s too soon for that. I need to give four weeks’ notice; I gave eight weeks of actual working time, or ten weeks if you factor in holidays that I won’t be taking. What I did was inform my manager that I was leaving, with the rest of the team here being told soon afterwards.
Where am I going? Not another job, at least not yet: in early September I will start full-time study at University College Dublin (UCD). The course is Structural Engineering with Architecture, straddling two disciplines. A lot of mathematics, a lot of looking at the “designed environment”, some graphic design, even some materials and construction.
I thought it was a good all-rounder course: while I enjoy architecture and design, I have no illusions of becoming an Architect with a capital A; it would take a certain level of Arrogance that I don’t have or want (I hope). More details to follow as I get them.
That is not the only change around here: not long after the meeting where I made the announcement, a former colleague of ours came calling. He still works for the same company, but in a different area, and he needed a place to stay for a few days, possibly longer. He’s not Irish, but married an Irish lady, whom (he says) is no longer a Lady. As a result, my place is now his “halfway house” on his way to the divorce courts and out of the country. Good thing I have that spare bedroom.
The last change will take the next eight weeks to engineer: the end of this blog. The reasons are complex, and will be the subject of further entries, but the most straightforward is that this blog is out of step with the way things are done today. Blogging is no longer an end in itself, but a means to an end: an end that I have little interest in achieving.
Sometimes, or so it seems to me, I can be a bit slow on the uptake. I blame my job: troubleshooting computers and storage systems is a job for a literal-minded pedant, whose day can revolve around the tiniest of details that make or break a customer’s installation. The procedures for doing things tend to be linear, with individual steps that you must complete successfully before moving on to the next one. I don’t like what this job has done to me, to be blunt, and while some of my bloody-mindedness may be MS-related, I think I have a need for some mental liberation.
A domestic vignette should give you some idea of the current state of affairs. At work, this afternoon, while in the middle of something else, I hit on a solution to a nagging domestic problem; the lack of a desk. I don’t want to buy one, because I may have to move some day, and every item I have is an item that needs moving. There’s also the problem of quality; the cheapest desks are tiny and not very well-built, so I would need to spend more than I want to, just to be happy with my purchase.
Here at home I have four plastic crates, filled with various bits and pieces, cables, books and CDs. I’ve tried laying my dart board cabinet over the top and using that, but it’s too narrow, and has a knee-skewering screw sticking out its back. (The dart board is just one of the odd items I’ve had handed-down from the various housemates I’ve had here in Dublin, but it’ll be staying behind when I eventually leave this place.)
I needed a long and narrow board to lay on top of the crates; could I buy one, or find one in someone’s shed? The answer was simpler: ten minutes with a screwdriver, this evening, and I had one of my bedroom closet doors off, and over the crates. The noisy desktop PC is to one side, but my 5-year-old Compaq laptop (running Ubuntu Linux) is fine for writing work. As for ergonomics: my “director’s chair” is almost the right height, and I have the old & heavy keyboard out, which suits my heavy typing. A wrist rest, maybe a cushion on the chair, and many words will be written here.
Just as long as I don’t need to get anything out any of the crates, that is…
The screening process, for the FTY720 (fingolimod) drug trial I’ve applied for, has started. It’s not off to a good start: after being told that I had to take a whole day off work, then arranging a day off work, I went in to the Neurology department at St. Vincent’s University Hospital the day before to sign the papers and have a last chat with The Professor. The schedule for the next day, last Thursday? A MRI scan, a chest CT scan, and… that was it. The whole day off is going to come later, with another half-day of eye scans before that, and it might not be a whole day after all. Business as usual in Ireland, then.
It was the first time I’d ever had a CT (CAT) scan), or even seen a modern machine, and it was as quick, painless and cheerful a procedure as one could wish for. The machine itself wasn’t even the “tunnel” I’d seen pictures of, but more of a “ring”, like something out of 50s science fiction. Three minutes and a massive dose of X-Rays later, I was done, without even taking my shoes off.
That was a relief after the MRI, a procedure I’ve undergone twice before, and hardly enjoyed either time. It’s not painful, at least not directly, but halfway through I was brought out for an injection of gadolinium, which enhances the contrast. They were comparing scans from before and after the injection, so I was implored to keep my head still, in an uncomfortable position, for over half an hour in total, including the part where I was injected with a heavy metal.
My head was locked in place anyway, with pads at the sides ensuring that the earplugs did not fit snugly. There is no movement visible from inside the machine’s claustrophobic confines, but I was left under no illusion that huge superconducting magnets were flying around, inches from my nose, with enough liquid helium to turn me into a meat popsicle in seconds. The noise… it was as if HAL9000, Metallica and the Aphex Twin had co-designed a nuclear-powered washing machine that went up to 11.
Did I complain? Well, I am British, and it’s not as if my situation was worse than that of anyone else who needs to lie in a powerful magnetic field and have their protons resonated by a powerful radio transmitter. Never mind that I’ll be back in there every six months for the next two years, at least, and I suspect radiologists might have long memories. Zap.
Today saw the first time, since I was diagnosed with multiple sclerosis, that I had the chance to discuss my condition with specialists on the condition. After being told that I had MS back in January 2006, I walked out of my neurologist’s office, went home, and heard nothing for over a year. This despite being told that I would be contacted by a MS specialist nurse to discuss treatment options, and that I would be scheduled for follow-up exams. Some one dropped the ball on that one.
Of course, I was in no hurry to go looking for more medical treatment; I was just getting on with life, and work, without any significant disability. I described my symptoms as “annoying”, and no real problem to live with. After my business/vacation trip to the USA in March, however, I was hit by a combination of symptoms that left me feeling I’d aged fifty years while coming down with the flu. I bounced back after about ten days, most of it working from home. It looked suspiciously like a MS relapse, thus confirming the diagnosis, so I called up the hospital, who scheduled me for the MS Review clinic I had heard about.
The first order of business today was to confirm that what happened last month; was it a MS relapse or not? The consensus was that it was; the fatigue and loss of motor control were classic signs. The way I’d recovered so quickly was odd to me, but not to the specialists, who were quite used to it.
The hospital I go to, St. Vincent’s in South Dublin, is affiliated with the nearby University College Dublin, where they are doing research into MS, so you can probably guess what happened next: they wanted my blood, and a lot of it. Ten 5ml vials in total, going to various places, for various forms of analysis; the usual general health screens, plus some extra tests, including DNA sequencing.
So I’m back on the track regarding MS treatment, and I have some options for treatment. At the time of my initial diagnosis, my neurologist and I agreed that I did not need to start any treatment at that time. Now that I’ve had a relapse, the picture is different, and it’s time to start thinking about future relapses, and how drugs can reduce their frequency and ameliorate their severity. (Do I get bonus points for finding a use for the ten-dollar word ameliorate?)
The most interesting treatment option, by far, is an invitation to join the Phase III double-blind trial of an upcoming MS therapy called FTY720. Some details about the drug and its current status can be found at the following link. This is the last phase of trials, designed to generate the data that the manufacturer needs before they can submit the drug for approval.
The “unique selling point” for this drug is that it’s the first made-for-MS treatment that comes in capsule form, to be taken orally; all the other current therapies are administered by injection. That would not be a show-stopper for me, I suppose, but their efficacy in reducing the incidence of relapses – about 30% – means that I’d think carefully before accepting such a treatment regime. I’d have to start one of those straight away, and it would take years of injections before anyone could say whether it’s doing me any good.
So, I think I will volunteer for the FTY720 trial. Not only do I have an interest in furthering research and helping it to market; I have the luxury of a mild MS condition that means I can experiment with treatments. The double-blind nature of the trial means that I could conceivably be given a placebo, and effectively have no treatment for the two-year duration of the trial. I can afford to take that risk.
A Saturday at home, with my energy levels back to normal. I’ve been taking advantage of the fine weather to stay indoors, giving my bedroom a top-to-bottom cleaning. Windows and walls first, cleaning off a strange black dust that may be fungal. It might be a sign of damp, which would be odd considering I’m on the top of a 3-floor building that doesn’t leak. It’s only happening on the inside of the external wall in that room, and it may have something to do with its construction; under the flaking wallpaper is a layer of galvanized steel, and I have no idea why.
While cleaning the wall I had my Bluetooth headphones on, catching up on podcasts, but anyone watching me would have been bemused by some of my odd expressions and exclamations as I was on my knees with brush and cloth. You can share the experience I had; head off to Neil Gaiman’s web site, and enjoy Neil’s reading of his short story How To Talk To Girls At Parties. The story is included in his Fragile Things anthology, which I bought last weekend but haven’t started yet. Hilariously surreal, it follows a couple of teenage boys as they blag their way in to a party with some most unusual guests.
With the curtains washed, rehung, and closed to dry, and parts of the carpet wet, I’ve been doing more laundry, making lunch, and have settled down with coffee to watch the Grand National at Aintree. One false start, struggles to get the riders lined up, but … They’re Off!
all fools’ day, the belated spring
twitched his moist nose over the crest
of the brown earth bordering the hole
in which he had overslept
the winter that had held him unconscious
beyond his regularly scheduled waking
what it lacked in depth it offered as length
not as bluntly cold as years before, but sullenly
clinging to the clammy walls of his emerald den
far from the sun behind high cloud
in shades of monochromatic grey
stretches its legs
shakes out the knots in its sinews
and pauses in consternation
is it safe to stay outside, today?
… and I ain’t got much of it. It’s Friday evening, and I’m testing my ability to write and post a full blog entry without using the keyboard at all.
To do the bulk of the writing, I’m using a program called Dasher, which lets you select characters and words by controlling a cursor. When you select a character, that affects the following selections, which seem to unfold in an organic manner. It’s context sensitive, and allows me to enter text very quickly with a minimum of practice. For editing I have an on-screen virtual keyboard, and the rest is done in Firefox.
Sounds like fun, and it’s not the first time I’ve tried this, but today it’s a little more serious. Sometime on Monday this week, my body decided to remind me that I was diagnosed with Multiple Sclerosis just over a year ago, and to disabuse me of the notion that my neurologist might have read the MRI films incorrectly. I was at work on Tuesday, thinking I might have caught the Flu on the plane from Denver, but when I tried to sign a form, and could barely hold the pen, my situation needed a rethink.
The main symptoms are fatigue and some loss of fine motor control, which go together. I worked from home today, and did a fair amount of typing, but by the end of the day it was a struggle to lift my hands to type, and my fingers would not hit keys on demand.
It’s a good thing I’ve made a few preparations, I suppose. I belong to a virtual team at work, with the ability to get work done from remote locations, and the main obstacles to working from home on a regular basis are more procedural than technical, with regulations about ergonomics getting in the way.
So I will still have to go in to the office, but not for a few days yet. One particularly nasty MS symptom hit me on Thursday night; a massive cramp has has left me with a torn calf muscle that has me hobbling around like an extra from a low budget Dickens production. Just to add injury to insult, you know.
Now my wrist is getting sore, and I’ve done enough whining for one day. If it wasn’t for the physical problems I would be fine, actually, and I know I’ll be better in a few days. I will NOT start using txtspk, with Dasher making it easier to use good English than bad. I just need to take it easy for a bit.