Jon had asked to be referred to Bispebjerg hospital as that is one of two centres in Denmark specializing in PD and we think Jon’s PD is a bit special. Unlike in Holland, Jon got a grown-up neurologist, and like in Holland he got a very thorough examination – we were there almost an hour and half and came away feeling that the neurologist had really taken her time and made sure she understood Jon’s case properly before making any recommendations. Very reassuring.
The upshot of it is that Jon does indeed present a somewhat complicated picture. He takes a lot of drugs in the mornings but still suffers from PD symptoms. He takes much less of the drugs in the afternoon but still ends up with side effects. Go figure! There’s also his REM sleep disorder, the apathy and off-label use of Ritalin, his dopamine agonist intolerance, and retirement from work very soon after diagnosis. All in all, not your garden variety case. So Jon is now being referred for a SPECT scan and for examination “upstairs” at the so-called day hospital which sounds rather like the excellent Dutch ParkNet centre: a place where several specialists come together to make a very thorough examination of the patient, possibly over several days of observing fluctuations in function and drug efficiency. Of course, Jon won’t actually get to go until after the summer holidays, but it’s good to be in the system at last.The neurologist was surprised that all Jon’s L-dopa comes as quick-release tablets which is apparently very unusual and could possibly be the cause of (some of) his difficulties. He is to try exchanging a few of the quick-release tablets for the standard type and then conferring with the PD nurse over any further changes. Sounds sensible to us, and today is the first day on the new regime.
However, there’s been a worrisome development with Jon repeatedly either forgetting to take his drugs at all or taking the wrong dose. This has happened at least half a dozen times over the last few weeks. The trouble seems to be that when a drug dose is due, he’s at a low level not just physically but also cognitively. He’s already got a drug alarm on his mobile phone and a pill box with the days doses measured out and the timings written on, but this hasn’t helped. Neither of us has been able to come up with any solution other than that I take responsibility for his drugs from now on. Not really a happy outcome, but better than the diseased misery that ensues within an hour of a missed dose.
On the upside, the physio talk was excellent, very well attended, and, as it happens, organized by yours truly. Of course the recommendation was for taking lots of exercise which is bound to cause Jon some grief over the next weeks until I give up on him again, but it also got him chatting to several of the other members. A social life in the making?
1 comment:
it seems to me that getting the right dosage of medication is a bit like playing Bingo.
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