Goodbye Piccadilly, Farewell Leicester Square

MARIE: We went to London last weekend. Jon’s been itching to go to see an exhibition about the computing pioneer (and WWII code breaker) Alan Türing. After the war Türing worked at the same university department as Jon’s dad – Türing was very much the theoretician, while Jon’s dad put theory into practice by writing the very first chess software. Consequently, Jon’s dad got a display case all to himself at the exhibition, which was well worth seeing. (Jon also believes to have briefly sat on Türing’s knee as a toddler, a gratifyingly eccentric claim to reflected fame.)

Anyway, encouraged by the success of our Amsterdam trip (see blog posts past), we set off for London. The old question of whether it is better to travel than to arrive has been decisively answered by the budget airlines. After a long day involving 5 modes of transport with much walking and lugging of luggage in between, we finally arrived Friday night at a hotel near where we used to live in East London.

Saturday morning we slept in, then ambled down the high street breathing the familiar big city fumes. Jon found it more difficult than ever before to deal with the pedestrian dance of sto

p – go – lurch sharply to avoid umbrella – go – run for green light – stop for pram. He was festinating away quite alarmingly, tripping himself up, feeling his feet stuck to the ground at the wrong time. If you don’t know what festination looks like, it’s as if the upper body moves forward as intended while the feet stay behind, and then when a fall is imminent, the feet suddenly come ‘unstuck’ from the ground and rush in many tiny steps to catch up with the body. A bit of a concern around the house, and bloody terrifying in the middle of London traffic.

Happily, though, Jon survived long enough to be reunited with his daughter, son-in-law and two lovely grandchildren. We had a long leisurely lunch, then Jon had a little nap while the rest of us played outside, then another meal together, and finally a drink in the hotel bar. A long day, but an intensely enjoyable one.

Sunday was the family excursion to see the exhibition. The Science Museum is right next door to the Natural History Museum, home to dinosaur fossils and stuffed whales, and so of enormous interest to the grandchildren. In we went – Jon’s walking stick and the look on his face got us whisked past the long queue – to a museum where the collection is as spectacular as the building is noisy. Hard surfaces and high ceilings plus thousands of over-excited children was a bit much for Jon, so he and I retired to the café with grandson, where we spent a pleasant half-hour drawing imaginary butterflies and setting them loose to flutter around people’s heads. Then on to the Türing exhibition, which was small and perfectly formed. Granddaughter and I made it a particular point to talk loudly throughout about how famous her great-granddad was.

Then, and this is where we perhaps pushed the boat out a bit far, we were joined by the in-laws who had traveled for hours to enjoy a late lunch with us before getting straight back on the train. Each individual element of the day was perfectly fine, but two exhibitions and a sociable meal out on the same day is just one event too many for Jon. At the end of the meal, we said our goodbyes in the restaurant because I could see that he was just too exhausted to come along and wave everyone off at the station.

And that was basically that. We had another two days in London, but although we spent some more time walking around the old neighbourhood, we never ventured into the centre again, and spent most of our time either in the hotel room or in the blissfully music-free pub across the street. There was just no energy whatsoever left in Jon. It was the combination of the stresses of air travel (by contrast, we drove to Amsterdam), too many activities in too short a time, and (especially, in my view) the relentless sensory onslaught of such a large and busy place.

I have a theory that if you never try something and fail at it, it’s because you’re being too timid. You have to stretch yourself, test your limits, and sometimes you end up over-stretching. We used to love London when we lived there 15 or so years ago, but now we have to accept that London is simply beyond us. Parkinson’s is turning us into small-town folk and nature lovers.

Home alone, again...

JON: It’s a long time since we’ve written anything for the blog. We have several good excuses, of course, but simply blaming it on moving into our new house and the associated traumas and tribulations pretty much sums it up.

We exchanged keys on November 1st, and Marie moved into high gear painting every available surface and directing a large team of burly workmen in the construction of a new bathroom and assorted other heave jobs. This was supposed to be a three month project but turned into a five-week one as buyers for our old house suddenly materialized. High gear was clearly called for.

Meanwhile, I went back to Holland. This was always the plan (cat-sitting, you know), but Marie and I were both rather horrified to discover how little energy and ability I now have in the DIY department. Basically, I can keep going like a semi-normal person for a day, but will then suffer grave consequences of exhaustion, cramps and back pain for the best part of a week afterwards. Which is perhaps okay under normal circumstances, but a house move is far from normal – and so, now, am I.

I may have called several previous posts “home alone”, but this time I was on my own for longer, further and much more miserable. It didn’t help at all that I developed sciatica pains and had put my back out because we were camping out on substandard beds in Denmark. At times I could hardly walk, and at one point I had a wee panic attack when I found myself standing completely immobile in a corner. All shall pass eventually, but it’s bloody unpleasant while it lasts.

My lonely vigil in Holland also came to an end at last, and (despite a small hiccup when the removal van carrying all our earthly possessions was stuck on the wrong side of a snow storm and unable to deliver for several days) I am now finally installed in this marvelous, PD-friendly home.

I’m tempted to upload a set of pictures of the house, but that would only make you jealous… I’ll just say that we have an uninterrupted view of the sea, and ample space to accommodate visits from my two children, their partners and offspring. The cat is a bit daunted by the new place, though – small animal, very wide, white world.

Next week I’ll tell you what fun we’ve had trying to get me the elusive CPR number which is the key to open all Danish healthcare locks. Don’t go away…

Panic on Dutch Street

JON: One of the minor irritations of being an expat is that I keep having to prove my identity to many and varied financial institutions all of whom require proof that I am me and that I live where I claim I do. They say this is to combat money laundering, which can apparently be prevented by the presentation of a utility bill. Annoyingly, different firms require different information: some want my passport, others are happy with a gas bill; some want originals, others will make do with a photocopy.

This week I had to go to the bank (again) to get a certified copy of my passport. I’ve done this several times before with no problem, but this time the clerk wanted to know why I needed the copy. I hadn’t expected this question so had no rehearsed script ready for this. Unfortunately, stress, surprises and snap decisions go very badly with Parkinson’s disease. So although I attempted to answer, my mouth just seized up and I simply could not get a word out. Fortunately Marie was with me and was able to “sort me out”, which basically involved getting the clerk to repeat himself and then attempting to make a dignified retreat. I don’t think anyone noticed (much).

Anyway, the following day we returned (same bank, different branch – I do have some pride left), but this time with the letter explaining why the foreign financial institution wanted the information. And of course the clerk in the second branch was perfectly happy to certify my passport, disdainfully waving away the letter that the first clerk had insisted on.

If you, first clerk, are reading this, you know who you are ... and just remember that you know where I live.

Here is the hole I hoped would open up to swallow me:

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.

Big boys' drugs

My appointments with my speech therapist appear soon to be coming to an end – because, to my surprise, the therapy has worked. I admit that when the therapist asked me during my first appointment with her what I expected to get out of the treatment, I told her that my expectations were very low and that I predicted she would have a problem getting me to do the exercises she prescribed. Her answer then was both startling and honest: she would have no problem at all, but I might have one. Out of the mouthes of babes and therapists, eh? Somewhat uncharacteristically, I took this to heart, and with a wife nagging in the background have in fact been reasonably good (though far from perfect) about doing my exercises.

The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.

As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.

As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.

This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!

Mea culpa

Writing a blog has an element of the confessional about it: “forgive me, for I have sinned (against my own unwritten rules of blogging frequency)”. While it may not warrant 200 Hail Maries and a spot of flagellation, the guilt trip is certainly there – and more interestingly (to me, anyway), I find that I have missed my weekly session of catching up and reviewing the events of the past seven or so days. So, it is two weeks since my last confession ... and some stuff has happened.

My last blog was pretty downcast, really, as I was frankly scared out of my meagre wits that I was on the not-so-slow road to dementia. Now, though, although life is by no means back to normal (and what is “normal” anyway with a progressive disease?), it has I think been proven that most – perhaps all – my cognitive problems stem from side effects and combined effects of my drugs. I’ve talked to my neurologist twice when she has adjusted various medications to see what effect that would have on my mental state, and joy of joys: my brain is starting to work again. The relief!!

The trouble is, of course, that while my medication may be doing me some harm, I also cannot live without it, so I expect I am now in for an extended period of experimentation with drug doses and brands. For now, I’m physically at that exasperating stop/go crossroads between shaking and sticking to the floor, but to be honest I was probably under-medicated for the shakes before, so the difference is not that huge. I also still can’t sleep more than a few hours each night – BUT the mental change on reduced drug levels is just wonderful. Ask me what 4 times 4 is and I will confidently tell you 16 – and did you know that 16 times 2 is 32 – and 32 times 2 is ...mmm... 43? I clearly still have some work to do, but it is grand to know that there is light at the end of the tunnel, and the faint whiff of hope in the wind.

It also helps to talk. That is partly what writing this blog does for me, but it is also really good when we have an opportunity to sit down with others in the know and have a good moan. We know a number of people who are in a similar, but not identical, position to us. There is multiple schlerosis (MS), a bad case of rheumatoid arthritis, an unusual combination of degenerative spinal problems, and a case of un-diagnosable severe malaise among our nearest friends and family. These are all progressive diseases, and all can of course be miserable at times, and bloody miserable at other times. Many of the issues, concerns, fears and coping strategies are similar, so it is good to share our war stories, collect helpful thoughts and advice (we’re still too new at this game to dispense advice), and just occasionally have a full-blown moan – all stuff that would probably bore the pants of anyone else, but which becomes fascinating when it applies to YOU.

On a more amusing note, I’ve become stuck in toilets not once but on four separate occasions this week. The problem stems from being in Denmark (family visit and Marie's work), where people seem to be smaller (well, at least narrower) than me. I can get into the loo no problem, but then on attempting to leave I find myself with frozen muscles, stuck staring at a blank wall and unable in the tight space to turn round towards the door. With some considerable effort I have managed each time to force my growing bulk round and out, but will I always be able to? In fact, when I went during a ferry trip, Marie who was waiting with increasing apprehension outside the men’s room ended up sending in some hapless tourist to check for “a guy in a black T-shirt who might need help”. Fortunately half the men in there were wearing black shirts, so I narrowly escaped embarrassment. I know she means well, but honestly! On the trip back in a few days’ time I plan to stick strictly to a dry diet of peanuts and saltines.