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.

Scanning for signs of life

JON: One of the advantages of finally getting my CPR number a few months ago is that it magically opens doors and lets me go places – not, sadly, places like fancy restaurants or exotic holiday locations, but places like hospitals and consulting rooms where the national experts on PD are said to reside.

This is why we spent all day Friday in pursuit of pictures of the inside of my head.

5:30 am: M wakes up, waddles in to pour a half dozen pills into J
6:00 am: M, now dressed and coffeed, wakes J
6:15 am: M wakes J again, forces J out of bed and into clothes
6:45-7:00 am: J brushes teeth v-e-r-y slowly
7:00 am: M & J hit the road

At that time of day, I am quite a ways from functional, so the best contribution I could make to the drive was to snooze quietly while the radio kept M awake. It’s an hour and a half drive to the hospital (not the nearest, but purportedly the best). Not even I can snooze that long straight on top of a bad night’s sleep, so I also got to do a bit of generalized suffering with my collection of aches and pains. I’ve been told that you get used to the pain after the first 25 years.

The reason my brain scan took a whole day is that I first had to get an injection of some kind of radioactive goo, wait three hours for this to make its way to the furthest reaches of my brain, and then come back for the scan itself.

The goo was delivered by a very large needle, and when I say large I mean HUGE (not that I’m a wimp, you understand). The nurse asked me where I wanted the shot, and I said “in my wife”. We settled on my upper arm, though.

The long wait while goo percolated through me was spent shopping for lamps (no luck) and for goodies at an Asian market. We’re quite ethnically challenged out in our lovely boondocks, but I’ve now stocked up on enough English tea and Indian curry mixes to last me through the next ice age.

Then back to the hospital for the actual imaging, a DatSCAN. All I had to do was keep my head still for half an hour while machines whirred and clicked around me. Last time I had a brain scan, shortly before my diagnosis some five years ago, I had a minor panic attack due to the unbearable pain in my back. Marie was worried this might happen again, but I am happy to report that a) my back no longer hurts anywhere near that badly and b) I’m now so used to being prodded and poked that I was perfectly relaxed throughout.

Now all we have to do is wait five weeks to get the result at my next appointment. I predict they’ll diagnose Parkinson’s disease.

BTW, I just got sent a form from the Dutch pension authorities asking me to confirm that I’m alive. Marie is fairly certain that I am, and she is often right about these things. As further proof, I may return the form with a photo of me wearing a silly hat and holding today’s newspaper.