Testing times

JON: Now that I am sat here poised to write about the last few weeks, it seems to me we’ve been very busy. We have done a load of stuff, and it might even be said that we have achieved one or two things along the way. So let’s play catch-up and see what I've been doing with myself these past few weeks, when I should have been blogging.

First and foremost, I spent two days in hospital for the last tests before a final decision about fitting me up to the much-mentioned Duodpa pump. The purpose was to rule out a less invasive solution, the apomorphine injection pen, which everyone suspected would give me nasty side effects.

Now, there are good tests (like "fill in this form") and bad tests (like "please bend over so we tap a pint of you spinal fluid"). This latest test was really quite simple, and fell firmly into the category of bad tests. First, my drugs were stopped at 8 pm, so overnight I suffered the joys of going cold turkey. I have to tell you that cold turkey is not nice, really not nice at all. Then at 8 am the next morning, I was tested on the apomorphine, which soon gave me the predicted side effects of nausea and dizziness, without giving anything much in the way of symptom relief. So that was fun too. Eventually, joyfully, I got a massive dose of L-dopa and started to feel halfway human, although I wasn’t fully myself again until the next day.

Anyway, the good news out of my 24 hours in hell is that I am indeed suitable for the pump, have been approved for the pump, and will hopefully have the pump fitted before the end of the year. As far as I’m concerned, it can’t come too soon. OK, it involves a permanent hole in my stomach, a shed load of electronics, and the loss of any remaining shreds of dignity, but it’s preferable to continuing as I am, ruled by the tyranny of pill times and pill cravings, increasingly drunk-looking in my wobbliness, and increasingly worried about falling over hard.

That was the big news. Let me rush you through the rest of our goings-on.

The book Marie has edited “for and by” carers for Parkies has been printed and delivered. You’d have thought that meant she’d finally have time to concentrate utterly on the complex requirements of my well-being, but you’d be wrong. She claims there is now much marketing and promotion work to be done. Excellent though it undoubtedly is, the book is in Danish, so only a few of you will benefit from visiting www.parkinson.dk/publikationer to buy it. And yes, that's us on the cover.

My hospital experience was lightened by the acquisition of a new friend in the bed next to mine, with a shaved head and excellent English. It turned out the close shave was because he’d just had the DBS (deep brain stimulation) operation, which means he now has a couple of electrodes in his brain connected subcutaneously to a little computer on his chest that controls the electrical stimulation. We have only slept together once, but I think we’ll stay in touch. He came down to visit us when the doctors finally let him out – just a brief pit stop before he went off to Thailand, where I expect he is now lounging on some sunny beach, the lucky sod.

Marie and I only got to go as far as Amsterdam, where we joined several hundred other Parkies in the first European Parkinson’s Unity Walk through the centre of town. It was a great day out, we got talking to old and new friends, helped make Parkinson’s visible, and enjoyed the party atmosphere at the end of the walk with speeches, music, and a salsa class which Marie enthusiastically joined. I didn’t, I have more sense than that.

Back in Copenhagen, we attended the annual presentation of research grants from the Danish PD association, during with event Marie chatted for a long time with the Duchess who is patron of the association and was later encouraged through an improvised exhibition folk dance with a random bloke who wanted to demonstrate the healing power of the musical entertainment. (Do I see a pattern forming with all this public dancing? What did I marry?)

Yesterday, Marie had a 5 am start to go up to town to help make a presentation to two Danish MPs about some subtle changes to local disability pension laws which I am happily not to be affected by. More of these political meetings are likely to follow as she hits her old activist stride.

Lastly, I have just had my first outing with my part-time butler. We went to one of my favourite photo-haunts where I spent an age getting the right shot – because I didn’t have to worry about him getting bored and fed up. He’s paid to be bored. I think this relationship can work.

Pinball man

MARIE: Before you even think to ask: no, we still don’t know when Jon will get the Duodopa pump, but we’re getting impatient. I guess I’ll have to call the hospital next week – we have decided that our patience officially runs out on the 1 of September.

Since Jon got offered the pump almost three months ago (see, we have been pretty good about waiting), his hyperkinesias have got quite a bit worse, and now he suspects he may have had his first Parkinsonian fall. We expect both these problems to get a lot better with the pump, which will even out drug delivery and which can be much more finely controlled than pills.

The hyperkinesias, which are incessant involuntary movements, are a side effect of the L-dopa. Basically, Jon now has hardly any window of “normality” between too little medication (when he is slow and frozen) and too much (when he gets hyperkinetic). It’s thoroughly miserable being under-medicated, whereas being over-medicated is like being a little bit high. Guess what he prefers.

So once the drugs have kicked in sometime before midday, Jon spends the rest of the day in constant movement. He never sits entirely still, he’s always tapping a foot and nodding his head and gently gyrating from side to side on his chair. Standing up is worse, he weaves and ducks (like fellow Parky Muhammad Ali before PD) and his head wobbles like one of those dashboard toys. Sometimes its so dizzy-making, I have to grasp his face in my hands to keep it still while we’re talking – I pretend I do it to be affectionate, but we both know the real reason. At its worst, walking from one end of the house to another is a game of pinball as Jon spins and bounces off the furniture, walls and door frames.

A bonus problem is that Jon draws a great deal of attention now. It used to be that his walking stick was enough to indicate to people that he had leg issues rather than a drink issue. But now the hyperkinesias affect much more than merely his balance, I have again noticed people staring – or almost worse: very deliberately not staring – at him and wondering how it’s possible to be that drunk that early.

I’m not sure Jon’s suspected fall was caused by the hyperkinesias, it could equally well be a direct symptom of PD. Balance is very often affected, and if you move slowly you may not have time to reach out and stop the fall. Also, he fell backwards, which is very characteristic of Parky falls. At least it wasn’t dramatic. He had knelt down to take a photo of my Dahlias (or what’s left of the after the ravages of snails and slugs), and from a squatting position gently tumbled backwards to find himself “turned turtle” on the lawn, camera pointing at clear blue skies. It would be very funny, if it wasn’t also quite sad.

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.

The kindness of strangers

JON: It happened again, Marie left me to go Holland to do something professional and hopefully well-paid This time only for 4 days, but that’s enough time for things to go wrong. Marie left me with a full fridge, a list of dos and don’ts and a handful of phone numbers. I felt prepared for the nuclear winter that is Denmark, and things were going well until I tried to use the microwave and the kettle at the same time. A fuse blew (come to think of it, I think the seller may have predicted that something along those lines would happen). I tried saying “Let there be light” a few times, but it stayed resolutely dark. Very, very dark, although there was sufficient light to get me into bed – and in the morning there was enough light for me to see that I didn’t understand the 40 year old foreign fuse system at all.

Our next-door neigbour had said she would be happy to help out with any problems (although she speaks no English). Lots of people are happy to offer help feeling that it is very un-likely that the help will ever need to be given, but I had to take her on her word, and she was fantastic! A cursory look revealed that she too was out of her depth, but out came her mobile and within minutes her father appeared, diagnosed the problem and went off to the nearest shop (several miles away) to buy fuses, then returned and made light.

So what has all this got to do with PD? Well, had I been my old self, I would have worked out the fuse system and solved the problem myself somehow. Failing that, I would have been able to think of an alternative solution without ringing Marie in the middle of a meeting. I could have confidently strolled across the frozen tundra that is our driveway without falling and having to turn back. Indeed, I could have driven Marie to the station and therefore have had the car so been able to do my own fuse-shopping. But with PD, I now have to rely on the kindness of others. I am pretty sure that had we been new neighbours in the city (any city), I would have sat in darkness and waited for Marie to return to a fully defrosted freezer. We’ve picked a good place to live.

PS: I have now seen a doctor (as a private patient since I am still waiting for the magical CPR number that will throw open the doors to national health care) who has referred me for a X-ray of my hip and for physiotherapy while we wait. I have my first physio appointment in two days. I hope for pain relief, Marie hopes for a set of exercises she can taunt me with. I know she means well…

PPS: When I fell over in our icy driveway, to my surprise it didn’t hurt at all. Maybe the jolt of adrenalin helped, and also prevented a panic attack. Anyhow, I just stood up, no fuss, no mess, and went back to the house. With PD there will be many falls in the future, and although there was obviously some climate input involved, I’m wondering if this counts as PD fall #1?