Perhaps it's not so bad after all

JON: A number of readers took the trouble to comment on one of my recent postings. They both(!) wanted to know if my not hearing what Marie says isn’t simply a bloke thing, i.e. pretty annoying, but something you can live with. With PD, however, there is always the nagging fear that these cognitive lapses could be the precursors of something debilitating. I think I just proved that I can handle big words – but is that enough to demonstrate my cognitive health? It’s well established that short attention span and poor short-term memory can be symptoms of PD, but since they’re also established symptoms of being a bloke, I don’t suppose I can ever know for sure.

The great news of the week is that it really seems as if we have sold our old house! A contract has been signed, the cooling-off period is over, and all that now remains is for the buyers to secure a mortgage, which they claim to be confident of doing. They want the house rather sooner than we had planned on leaving it, but these days the buyer is definitely king so we’re shifting our plans to suit them. I expect much chaos and confusion will descend on us, but at least this cognitive challenge is temporary.

As it happens, the contract was signed the day before we went off to the World Parkinson’s conference in Glasgow. I’d been slightly apprehensive about going, because I didn’t really want to see people in late-stage Parkinson’s, and they were rather difficult to ignore at the WPC. But although some were in wheelchairs and others very stiff or dyskinetic, they seemed to be OK with it which was reassuring. After a while I was seeing the person and not the chair – and whilst these people represent my future, I no longer think it’s going to be too bad. I reckon I could get used to driving an electric chair – the ride-on lawn mover in the new house will be excellent practice.

Due to regulations which prevent drug companies from marketing directly to patients, we non-medic delegates were not allowed into some of the sessions which were restricted to medics, nor were we permitted in the area where medical gear was on display. Of course it was a simple matter to borrow a badge from a friendly medic and get in that way, which of course I did – but was disappointed to find the medics-only stuff stunningly dull (which may have been down to the complexity of the topic or, more likely, the poor presentation skills of the clinicians). The lectures directed at non-medics were much better.

Of course, I actually spent most of my time outside the lecture halls chatting to fellow Parkinsonians and having a fine time. What was great was that it was possible to feel completely normal. We could shake, rattle and roll and no-one batted an eye-lid – though on second thoughts, batting an eyelid is perhaps not the best metaphor…

Quiz time

JON: Marie and I have had a bit of a row this week. It’s a pretty childish on both our parts but still miserable while it goes on.

The problem has two parts. The first part is that “we have a plan” for the processes and work involved in our up-coming house move. We have apparently discussed this at great length and depth. The second part is that I keep asking for details of the plan. Marie finds this very annoying as I keep asking about things that she claims we have already discussed to bits, and I can’t say I blame her.

However, rather than telling me that we have had the same conversation five times already and please (for god’s sake) will I pay attention this time – which would seem to me a reasonable strategy – what happens instead is that she starts to quiz me: “We’ve agreed this already, you know perfectly well what was decided, so you tell me the answer to your question”. Put under stress like this, my mind goes blank, my mouth dries up entirely and I may even start to shake. If she keeps pushing, I get angry and start to sulk. You don’t need to be a rocket (lettuce) scientist to predict that this doesn’t help.

We seem to be prone to this kind of problem where my memory causes grief. For example, I recently got the title of Marie’s book wrong, a small but emotionally significant error. And annoyingly I can remember a similar recent argument, but I can’t remember any of the details (and this is not a joke).

My psychologist has told me that this sort of thing is quite possibly not actually a memory issue but a question of not paying attention. The problem is that Parkinson’s makes it hard to multitask, so if I’ve been told something during a walk in the woods, I may not remember what was said as I was too focused on the task of walking. Which is of course annoying for Marie, who may feel that she talked to me at a time with few distractions as we were all alone in the woods.

Anyway, the latest row has passed and we are now friends again, just in time for me to bugger off to the UK tomorrow for a boys-only weekend. We used to be able to keep a row going for days, sometimes weeks, but (like erections) they just don’t seem to last as long these days.

Memories

JON: I’ve been meaning to write about my memory problems – but I keep forgetting. OK, when you have picked yourself off the floor laughing, try to imagine what it’s like to have no recollection of the recent past. It can make you quite paranoid at times – having no recollection of what happened last week, and no idea what plans have been laid for this week. And people (well, Marie) keep claiming that I have participated in discussions and agreed to sweeping decisions of which I have absolutely no recollection.

As a practical example: it was Marie’s birthday a few days ago. I had bought her a pendant in the shape of a string of DNA (you know: a bit of double helix – which happens to be the symbol adopted by Brights (born-again atheists)). Actually, when I say “I bought”, I actually mean she scoured the web for a version she liked, then ordered it and paid for it on my credit card – but it was my idea! It arrived in the post weeks ago and I hid it away somewhere safe.

After being prompted the night before, I managed to remember the birthday the next morning, but despite extensive poking around the deep recesses of my memory: could I remember where I hid the pendant? Not a chance, absolutely no recollection at all. Fortunately Marie had spotted it herself, hidden in plain view on a shelf in the garage, so was able to guide me to the bag – though I was still not one hundred percent sure of the contents when I gave it to her.

MARIE: We last wrote about memory issues in the post from 28 June, when the Parkinson Centre neurologist had just explained to us that Jon’s problems with remembering things were most likely related not to his memory going bad but to issues with paying attention. As I understand it, this is caused by an unfortunate interplay of two common symptoms. One is the erosion of ‘automatic’ patterns of movement so, for instance, unlocking a door or getting into a car is no longer something that happens with mindless ease, but something that must be planned and broken into its constituent parts of small, separate movements that can be done in sequence rather than simultaneously. The other is difficulty with multi-tasking, which means that Parkinsonians really do find it difficult to walk and chew gum at the same time.

What it boils down to is that Jon is easily distracted by the need to focus his attention on small physical tasks and thus does not pay sufficient attention to what goes on around him to be able to store it in memory. Even during dinner, where one might think he would be able to zero in on a discussion of next week’s programme, he may instead be grappling with the difficult wrist-twisting movements necessary to load a fork with spaghetti, or could be concentrating on chewing his food without biting his tongue, or planning how to reach for the pepper grinder.

This is a bloody nuisance, and a rather unexpected one. We obviously know better than to equate Parkinson’s with shaking (in fact, Jon has very little tremor), but much of what we heard and read initially about the disease lead us to think of it as a movement disorder with stiffness, slowness, etc. (of which Jon has much). It is becoming clear now that this is far from the full story. The movement issues may be more noticeable at first, but with them come a slew of related effects on mood and mentition – which may, for someone as sedentary as Jon, turn out to be the more troublesome symptoms.

Jon’s social life (and by extension, mine too) is also much affected by the disease, but that is a subject for another post – soon.

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.