Experts, experts everywhere

A few days ago Jon had the first of his three appointments with the Parkinson centre who are doing a thorough review of his situation and treatment. First almost an hour with a coordinator who went through the various main problems Jon is experiencing and on this basis discussed with us which specialists it would be most helpful to see at the next appointment. We settled on a social worker to help clarify the situation surrounding work and pension, a speech therapist to assess speech and also review issues Jon is beginning to have with excess saliva, a psychiatrist to weigh in on whether Jon’s mood is perfectly reasonable in view of his health or whether he could be cheered up with chemicals or therapy, an ergotherapist to further discuss the work situation and coping strategies both at work and at home, and lastly a dietician to explain to us how to drop some weight (as if we didn’t know, but it could still be interesting to hear what she has to say).

Next came three quarters of an hour with a neurologist who confirmed the diagnosis, discussed its progression and reviewed Jon’s medication. The first major thing to come out of that was a new medication strategy to counter issues Jon has had with the effect of the medication taking a lo-o-ong time to kick in and not working at full effect for very long. He now has instead some quick release medication (Madopar dispers) and it already appears that this is a clear improvement. It will probably also be necessary to up either the dosage or the frequency (we think the latter might be best), but as the neurologist said, we should only change one thing at a time so we can see what the effect is before making the next change. (Yes well, the neurologist probably feels fine all day so may find methodical patience easier than Jon does.)

The other big thing was that we discussed what Jon and I thought were his memory problems, which have concerned us greatly since it’s one thing to get shaky and clumsy, but quite another for Jon to start losing his cognitive muscle. There have been two distinct issues: Jon is getting slower at retrieving stored information (as in TV quizzes where he knows the answer but can’t search the memory files quickly enough), and we also feared that his short-term memory was going, which could be the start of something really very nasty. But the neurologist said he thought there was very little likelihood that Jon’s problems are related to the quality of his memory. PD slows down not just the body but also the brain, so the information retrieval issues are to be expected but do not signify problems with the quality of Jon’s memory. And nor are the short-term memory problems a question of quality but much more likely to be a case of wandering attention, which is apparently also common in Parkinson’s (partly because of difficulty with multi-tasking). I find that the most enormous relief. Defective memory is scary, but wandering attention is easily dealt with. I now know not to expect Jon to remember what we have talked about on a walk unless we stop walking and concentrate on talking, and I know that if I want to be sure he stores something in memory I should simply ask him to repeat it thus confirming that he was paying attention. Easy-peasy.

The last appointment this week was with a physiotherapist. Jon has been seeing a one of those weekly for quite a while with little obvious effect – but since we cannot know whether perhaps she has been busy keeping deterioration at bay, there has been no talk of quitting. To be honest, Jon has been somewhat resistant to taking advice. For instance, when shown a ‘better and easier’ way of getting in and out of the car, he has tried a few times but then soon reverted to his own laborious method. The physiotherapist at the Parkinson Centre demonstrated exactly the same method but with one huge difference: he explained why this is a better and easier way for those with Parkinson’s – to do with breaking complex movements into smaller chunks to get around the difficulties with multi-tasking. Jon has always been immensely skeptical of unsubstantiated claims that something is ‘better’ (honestly, it’s the sort of thing a homeopath might say), so I am hoping perhaps the reasoned explanations will be the missing link that makes him take his normal physiotherapist’s advice more seriously.

The whole day was really brilliant, everyone was impressively professional and insightful and helpful, and we just can’t wait to go back for more next week.