ON and OFF

JON: Since my last post, I’ve been soldering on – no, not a typo: I’ve actually done some soldering which has come out OK, or more than OK if I say so myself. Of course these things are binary, it either works or it doesn’t, and this time it worked at the first attempt. So my fine motor skills seem to be OK as do my cognitive skills (to me, at least…).

I’ve also done some painting and photography. I’m rather pleased with the photographs, less so with the painting. But I’ve only done a short course on painting this winter and my work compared fairly favourably with that of the other students. Actually, my paintings weren’t great by any measure, but I have the excuse that while each lesson ran from 6:30 pm to 9:00 pm, my medication effect rarely lasted much beyond 8:00 pm. The photography, however, is a long-standing interest, so I feel more competent with that. Attached are a couple of my pictures – it may not be high art, but I like them.

Admittedly, though, the last week or so has been on the unpleasant side. I take my drugs at the correct time, but some times they don’t work. With increasing frequency they fail to take effect at all and I’m reduced to shuffling along like an old man (OK, maybe I am an old man). Thinking becomes hard, muscles become weak, I ache and find it hard to remember that I will feel better soon.

My brain let my body down twice last week. On Monday morning I was fine when I got on the bus to the Oak House day centre, but (expletive of you choice here) felt utterly shattered when we arrived. I took an extra dose of L-dopa, slept for over an hour, and eventually started to feel better.

On Friday afternoon, things were reversed. I had a good day at the Oak House and got on the bus to go home feeling fine, but after being bumped around for what seemed like several hours but was in fact less than 20 minutes, I almost had to crawl to get to the front door. Once inside, I just flopped, took some quick release L-dopa, went straight to bed and just lay there waiting for the pills to kick in – repeating my little mantra of ‘it will get better’ and as always it did get better. But the waiting is the worst.

It turns out that it’s not uncommon for the effect of the Parkinson’s drugs to become erratic. So now I’ve been offered to have a duodopa pump fitted that will deliver the L-dopa more smoothly. It seems to have some pros and cons. On the plus side it allows a fine control of the L-dopa, but on the minus side as far as I can tell a PEG tube would be inserted through my skin and directly into my stomach and left there. I’ll presumably get a switch, or possibly a knob, to control the dosage. Marie seems quite taken with the concept of gaining an extra appendage, though the maintenance is a slight worry.

We’re going to an information day with lots of people who have lived with the pump for years, so I’ll know much more before it’s decision time. Watch this space.

Safe hands

MARIE: Today Jon had his second neurology appointment after moving to Denmark. You may recall that at his first appointment, the neurologist concluded that he is a complicated case and decided to send him Upstairs. Not to meet celestial management, but to see the real experts at the day hospital specializing in Parkinson’s.

So Jon was seen today by one of the very top people in the country when it comes to PD. We recently heard her speak at a research meeting arranged by the Parkinson’s association and were greatly impressed. I had hoped, but not expected, to see her again so am very pleased indeed that she will be Jon’s neurologist. Okay, pleased and also concerned, because this evidently means that Jon really is a complicated case. Which is shitty, but having it confirmed doesn’t change the facts of his condition. The main thing is that we both feel confident that if anyone can sort Jon out, she’s the one.

We have returned home with yet more medication changes, and are now waiting for Jon to be called in for a new MRI scan (his last was in 2007 and was used to diagnose the PD) and a neuro-psychiatric evaluation because Jon feels that cognitive changes are the most bothersome symptoms right now – that includes his poor short-term memory, difficulty concentrating, reduced analytical abilities, and trouble finding the right words (spoken and written, which is why I tend to write more blog posts these days).

In terms of the medication changes, we had been trying hard to discern a pattern to Jon’s day and match his medication intake to his wellbeing at different times. Without success as his condition seems to fluctuate pretty randomly, to the extent that at times he has symptoms of Parkinson’s, i.e. too little dopamine in the brain, at the exact same time as he has dyskinesias, which indicate too much dopamine in the brain.

We just couldn’t understand it. But the neurologist could: Jon’s recent DAT scan shows that one side of his brain is more affected by the disease than the other, so he’s been getting too much dopa on one side and not enough on the other! This is related to the quick release tablets he’s been taking, so the plan is to shift him almost entirely on to normal release tablets which should even out his condition considerably.

I so hope that works, because I don’t mind telling you these last few weeks have been pretty miserable. And wouldn’t it be wonderful if there’s also something that can be done to treat the cognitive problems?

All change

MARIE: Jon meant to write a blog post last weekend, and he’s continued to mean to write one all week, but as you see: you’ll have to make do with me.

Why? Because he’s in the middle of a pretty sweeping drugs review. As you know, levodopa (L-dopa) is the main medication for Parkinson’s, and the brand Jon takes is Madopar. This comes in three versions: normal, quick release and slow release. For various reasons, perhaps not all of them good, when we left Holland last year Jon was getting only the quick release version. This worked well for him at the time, but there are indications that this may no longer be the case.

Because over the last few months, Jon has started to experience dyskinesias, or excessive, unintentional movements. This is a pretty common side effect of levodopa medication and indicates that there is too much dopamine in the brain – or in other words, that your medication dose may be too high. (Later on in the disease, the line between ‘too much’ and ‘not enough’ can get ridiculously fine, as in the case of Michael J. Fox.) Jon’s dyskinesias are mainly expressed as head bopping and an inability to sit still, which is annoying but not worrying, and wobbling and gyrating when standing, which scares us both as he’s come quite close to falling several times.

Admittedly, one rather more benign side effect is that Jon also gets pretty, shall we say, ‘frisky’ when he’s got lots of D in his system. We can live with that.

Jon’s new Danish neurologist found it surprising that he got only quick release levodopa and apparently suspects this may be one cause of the dyskinesias. It’s like the quick release tablets give him these frequent highs of dopamine, bam-bam-bam, while what he really needs is perhaps a steady background level of the normal tablets with perhaps an occasional quick release pill for a pick-me-up.

So, lots of changes are happening, to medication types, quantities and timings. It would have taken ages to make the changes gradually, so instead the hospital recommended that Jon should make all changes at once, and accept that this could give him some grief for upwards of a week until his brain gets used to the new regime.

As predicted, Jon went from hyper to hypo in no time. Several difficult days ensued, including an unhappy day when he needed help for everything, also getting to the toilet (he now claims to be an expert on humiliation, if not on humility), and one really bad day when he was quite out of it, both physically and mentally – very frightening, until we realized that he simply had a cold on top of everything else. He’s still a bit snuffly, but much better.

Now our task is to find a pattern in how Jon functions on the new drug schedule as compared to the old schedule, so that we can report, contrast and compare at the next neurology appointment in two weeks’ time. So far, the picture is still confused, but people are hardwired to discern patterns – even where none exist, finding landscapes in clouds, wild horses in crashing waves, and images of Jesus on burnt toast – so I’m sure we’ll have something to say when the time comes.

Off on tour

My daughter and baby grandson visited last week (hence too much excitement to find time to blog – sorreee). It gave me a real boost to have them here. Not that we actually did much as such, other than a few walks and meals, but that is how I like it best: behaving like we have all the time in the world even if we live hundreds of miles apart. It was particularly good to be able to demonstrate that although Parkinson’s is obviously not going to go away, I am a lot better now than I was last time I saw my daughter.

Drugswise, I have now been Sifrol-free for three weeks and have, I think, just about found the right dose of Sinemet (proper L-dopa). And the change has worked wonders both physically and cognitively. I’m not back to my old self from before the disease set in, but I am at a level that can deliver a perfectly acceptable quality of life. And it’s not just me saying that, either. I had another of my regular assessments by the works doctor, who saw a great deal of improvement. He suggested occupational therapy might be a good idea, and I agree absolutely. Although the idea of retirement at 55 has its temptations, I suspect that doing something useful is actually better for the soul.

Somewhat disappointingly, though, it turns out that the doctor thinks the various tasks I have already devised for myself to do at home constitute sufficient occupational therapy for now. Oh well – I guess the only thing work would be able to suggest would be editing scientific papers for colleagues who need their English checking, which would be neither particularly interesting nor stressful. BTW, since I was in the building anyway, I poked my head round my old door and found that my desk has already been reassigned to someone else. Is that some kind of heavy hint?

Anyway, I am in fact pretty busy at home this week. We’re off on a 3-week holiday this weekend and there is a whole list of things to do before we leave. I promised to write some simple software and have just one last bug to fix before I can deliver (which will be a small triumph, considering my failure with another simple programming task earlier this year). It’s for a study where we measure reaction times with and without a background aroma which is a bit too close to aromatherapy for my comfort, actually. I mean, how open a mind can you keep before your brain falls out?

Also, I foolishly agreed to review a scientific paper. This is normally a simple task: either respond that YES, this is quality work that should be published forthwith or NO, this is derivative rubbish. Unfortunately, while the paper I’ve been given appears to be okay scientifically, the English is so abysmal that it is backbreaking work to suss out exactly what the authors mean. Until I’ve translated the thing into something more readily comprehensible I cannot be sure which way my thumb should point.

And I have to write a 4-page potted autobiography for our shrink, who we saw for the first time two weeks ago. The referral we had from our GP stated that the aim was to make life with PD liveable, and that strikes me as a fine ambition. One early hurdle – or perhaps the major, or even only hurdle – is to reconcile the diametrically opposite ways that Marie and I each deal with and react to my PD. To which end he has asked us each for a short history of how we became the people we are today. How does one fit a life onto 4 pages? My work CV alone runs to 18 pages. Well, I suppose I could leave out the dull bits, but then how would I fill the other 3 pages? No seriously, there must be 4 pages worth of almost interesting stuff in 55 years of life – ‘your mother did what?!? No wonder you’re messed up!’

Last but by no means least, I have to pack. We’ll be travelling through Cambodia, Vietnam and Singapore. Now, according to CNN’s weather forecast, most of Southeast Asia is under water, suffering the worst floods for many years, so I expect humid and muddy and frequent changes of clothes. We’ll be on a tour with up to 10 other tourists and I also can’t help but worry that I might hold everyone up as I struggle in and out of car seats or delay morning departures because the drugs haven’t kicked in enough to allow me to get dressed. However, I suspect this could be my basic glass-half-empty approach kicking in and that in fact I will have rather a brilliant time. I’ll be back again to tell you about it in the beginning of December.

Taking stock

In the long term we are all dead. Another safe prediction is that tomorrow is very likely to be much the same as today, so in the short term we seem to be OK – it’s the medium term we need to watch out for. As progressive neurological diseases go, PD is less nasty than some: not fatal of itself, but not a recipe for a bright future either.

A gloomy start, perhaps, since in fact I’m feeling slightly upbeat today. The new pill regime is taking effect at last. I am almost 100% weaned from the Sifrol (dopamine agonist) and onto Sinemet (levodopa). My tremor has improved, I’m sleeping almost normally, I walk significantly better, my muscles are a lot less stiff, my posture is much improved, and as a surprising last effect my appetite is back to normal proportions. There’s still 10 kg to go before my weight is back to where it should be, but I am already down one trouser size.

I’ve even done some driving. I keep it slow and steady, but that’s really just paranoia. My reaction times seem normal (I’ve been using the pencil grasp test), and the only lingering issue is that I find the level of concentration needed for driving rather stressful so am best on short journeys. Which is enough to set me free to go, if not where-ever I wish, then many places I wish. And it sets Marie free to not go where-ever I wish which clearly makes her daily schedule rather easier.

(Speaking of Marie, I am happy to report that we are doing a lot better than we were a week ago when she posted her somewhat pained text. I don’t know what did it, but after an immense amount of talking – mostly on her part – we finally seemed to hear each other, and have been getting on very much better since.)

Am I back now to where I was before my diagnosis? I think not. For instance, I have a scientific paper to review, and I’m finding it hard work (even though it’s based on work I did a few years back, which is flattering).

So the big inquisitive elephant in the corner is asking: is it time to start thinking about a return to work?? My feeling is that full time would be overly ambitious. My concentration flags after a while, and I still feel I need a nap most afternoons. My short term memory is also a problem. Stuff I did 2-3 years ago is crystal clear, but I can read the same recent article over and over again without the information sticking. Will I ever learn new stuff, or am I doomed to repeating the same Sisyfean learning task over and over again?

In the medium term the only direction is down, so do I go back to work part-time for a bit before throwing in the towel, or do I (and my employer) accept the inevitable and give up now? If the latter, I should try to find some less demanding, less academic work to do. Software writing (99% repeated from prior work and 1% demandingly original)? Freelance journal editor (stay up-to-date with science without actually having to do any myself)? Write the great Anglo-Dutch novel? Blog obsessively?

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!