Good news and bad news

MARIE: We're back from hospital, now with the duodopa pump. It went well, on the whole. The specialist nurse is an absolute marvel, very knowledgeable and personable and magically available. Most of the others were kind and efficient, though rushed.

On the first day, Jon got a tube stuck up his nose, down his throat and into his stomach. That was, as promised, the nastiest part of the entire experience (especially since the procedure had to be repeated twice for technical reasons). That done, a few days were spent teaching us to work the buttons on the pump and fiddling with the dosages, which can be very finely tuned. There is a morning dose to get Jon started, a background dose throughout the day and evening, and an extra dose that can be taken as needed in anticipation or reaction to anything stressful or strenuous (such as having a shower or going shopping).

That settled, everything when quiet over the weekend, with surgery set for Monday morning. As lots of people were sent home or sent on for the weekend, I managed to get Jon moved to a window slot for an excellent 6th floor view of snowstorms over Copenhagen.

Surgery was to insert the PEG tube through which runs the inner tube delivering drugs direct into the duodenum, which is where L-dopa is absorbed. All went well and Jon was soon back in his room. He was fine a first, but when the local anesthetic wore off, it got pretty uncomfortable. So they gave him morphine for the pain and left a sleeping pill on his bedside table, just in case. The trouble was, he woke up about 3:30 am and took the sleeping pill - far too late, of course. So that first morning was quite scary. His blood pressure was ridiculously low so his legs simply gave way several times, and he talked the most complete nonsense. I was very glad to have both the specialist nurse and my sister, who is also a nurse, there to deal with the situation and assure me it was a passing problem. Indeed, after a very long nap, Jon was entirely himself again.

So after a few more days of pump training, now focused on maintenance and cleaning, Jon was discharged. We were perhaps a bit nervous the first day or two at home, but now begin to feel really quite comfortable about the workings and effects of the pump. It is definitely a relief to just have to handle it mornings and evenings (it comes off at night) instead of having to deal with pills every two hours. And although the dosages may need to be adjusted slightly, the symptom relief is clearly very much better and especially very much more reliable than what Jon got from the pills.

So that's the good news. The bad news is that sorting out the biggest problem, i.e. the physical symptoms of Parkinson's, allows the second-biggest problem, the cognitive symptoms, to be seen more clearly. They've been a big concern for me for some time, and I believe Jon is now getting an inkling of the extent of his impairment. That must be frightening, frustrating, infuriating, intolerable. And what is he to do with those emotions, where is he to direct them? My way, is the answer.

He's been really quite unpleasant to me recently (but fortunately not to anyone else). It's been mostly verbal and mostly of a passive-aggressive nature, but earlier today he actually shook his fist in my face as if to punch me. I didn't think he actually would, but it’s an escalation of frustration and the inability to express it which could conceivably in time lead to worse.

What with the pre-treatment stress, the ten days in hospital and now the holidays coming up, we have spent far to much time grating on each other. I hope that a bit of physical distance in the new year will put us on a more even keel. To that end, I have arranged to borrow an office nearby two days a week for a writing project. With the three days Jon is out at the Oak House or with his "butler" that means we'll get several hours apart every weekday. I hope that's enough.

PS: Jon has seen this post and accepted that I upload it, but does not want to comment.

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.

A complicated guy

MARIE: Monday was a big day for us: Jon’s first visit to the neurologist in the morning, and a talk by a physiotherapist at our local Parkinson’s Disease association in the evening.

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?

Typical Parkinson's

I saw my personal shrink for the first time a few weeks ago. He specializes in Parkinson’s – not the physical manifestations, but the mental ones. He described me to myself quite accurately (i.e. I am typical for a Parkinsonian). And although I claimed to be apathetic, and he argued that I suffered from a lack of drive (typical P). And much as I hate to say it he could be right, so my next claim is that it’s just a matter of semantics.

I’m also mildly offended to be described as typical – I’m special, me. I want the phrase “when you have seen one case of Parkinson’s, you have seen one case of Parkinson’s” to be true. Although I can now spot a fellow Parkinsonian from 50 paces – the slow shuffle, the stiff arms, the sticky feet etc. – I am still sure each and every one of us has our own idiosyncrasies.

I seem to oscillate between on the one hand claiming that I’m very, very sick, as if I’m not going to be believed, and on the other hand shrugging it off as “just one of those things” and trying to pretend there are no problems – but if I’m that healthy in mind and body what am I doing seeing my own personal shrink? (Actually the plan is to have part of the session as a couple and part to each ourselves, but I suspect the couple stuff will also be focused on me.)

The pills also have a large effect on my mood; I bounce from lethargic couch potato to pacing panther when I endlessly walk from one end of the living room to the other in the same way that animals in zoos trace out stereotypical behaviours. Shrink is on holiday so there will be a month between first and second visit, more than enough time to ponder my mental condition.

My physiotherapist is also on holiday, but to make sure I got no rest I had an appointment with the speech therapist, the first in 3 months. The good news is that she saw no change. I, on the other hand, have started having minor difficulties swallowing, and some cheek and tongue biting. Minor symptoms, I know, but worrying nonetheless – and I probably focus on them particularly because of background in dentistry and research on the mechanics of eating.

Last week we saw my neurologist who had the report from the evaluation at ParkNet. We mainly discussed drugs, dosage, timing, etc. It feels to me that we now have the correct drug cocktail, all the right ingredients, so all we have to do now is fine tune the dosage(s) and timing(s). We also had an appointment with the Parkinson’s specialist nurse, though it turned out she didn’t know why she was seeing me and neither did I. But we had a nice chat, and it was reassuring in a way – she was the first person to imply that I was doing OK and that she didn’t see any major deterioration.

It’s been hot and humid again. Marie was away for a week in Korea which I spent sweating and ignoring the blog, computer and cat. The cat, however, makes its wishes known with sharp claws, mainly demanding food, but sometimes angling for affection (a bit like me, really).
My next task is to organize the itinerary for our holiday – a week of random driving through the French country-side and a week in a remote cottage. I plan to keep this as unplanned and random as possible, but Marie has other ideas – though I think we can come to some kind of compromise (i.e. we may be spontaneous on Tuesdays and Thursdays, and for the other days we will have a detailed route map plotted into Mrs Tomtom – “At the roundabout, turn left”).

And now as I write I notice my typing is getting a bit blurry, so it’s pill time again ...

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.

A good moan

Hello, it’s Marie again. We promised in one of the early blogs to give a bit of background to what came before the blog started. Since this has been a praticularly horrid week, we thought I should take the opportunity to give you a whistle-stop tour of our private Hades, taking it up to date with the latest set-back.

When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.

First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).

When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.

This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.

We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.

There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.

And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.

This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.

Big boys' drugs

My appointments with my speech therapist appear soon to be coming to an end – because, to my surprise, the therapy has worked. I admit that when the therapist asked me during my first appointment with her what I expected to get out of the treatment, I told her that my expectations were very low and that I predicted she would have a problem getting me to do the exercises she prescribed. Her answer then was both startling and honest: she would have no problem at all, but I might have one. Out of the mouthes of babes and therapists, eh? Somewhat uncharacteristically, I took this to heart, and with a wife nagging in the background have in fact been reasonably good (though far from perfect) about doing my exercises.

The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.

As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.

As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.

This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!

Mea culpa

Writing a blog has an element of the confessional about it: “forgive me, for I have sinned (against my own unwritten rules of blogging frequency)”. While it may not warrant 200 Hail Maries and a spot of flagellation, the guilt trip is certainly there – and more interestingly (to me, anyway), I find that I have missed my weekly session of catching up and reviewing the events of the past seven or so days. So, it is two weeks since my last confession ... and some stuff has happened.

My last blog was pretty downcast, really, as I was frankly scared out of my meagre wits that I was on the not-so-slow road to dementia. Now, though, although life is by no means back to normal (and what is “normal” anyway with a progressive disease?), it has I think been proven that most – perhaps all – my cognitive problems stem from side effects and combined effects of my drugs. I’ve talked to my neurologist twice when she has adjusted various medications to see what effect that would have on my mental state, and joy of joys: my brain is starting to work again. The relief!!

The trouble is, of course, that while my medication may be doing me some harm, I also cannot live without it, so I expect I am now in for an extended period of experimentation with drug doses and brands. For now, I’m physically at that exasperating stop/go crossroads between shaking and sticking to the floor, but to be honest I was probably under-medicated for the shakes before, so the difference is not that huge. I also still can’t sleep more than a few hours each night – BUT the mental change on reduced drug levels is just wonderful. Ask me what 4 times 4 is and I will confidently tell you 16 – and did you know that 16 times 2 is 32 – and 32 times 2 is ...mmm... 43? I clearly still have some work to do, but it is grand to know that there is light at the end of the tunnel, and the faint whiff of hope in the wind.

It also helps to talk. That is partly what writing this blog does for me, but it is also really good when we have an opportunity to sit down with others in the know and have a good moan. We know a number of people who are in a similar, but not identical, position to us. There is multiple schlerosis (MS), a bad case of rheumatoid arthritis, an unusual combination of degenerative spinal problems, and a case of un-diagnosable severe malaise among our nearest friends and family. These are all progressive diseases, and all can of course be miserable at times, and bloody miserable at other times. Many of the issues, concerns, fears and coping strategies are similar, so it is good to share our war stories, collect helpful thoughts and advice (we’re still too new at this game to dispense advice), and just occasionally have a full-blown moan – all stuff that would probably bore the pants of anyone else, but which becomes fascinating when it applies to YOU.

On a more amusing note, I’ve become stuck in toilets not once but on four separate occasions this week. The problem stems from being in Denmark (family visit and Marie's work), where people seem to be smaller (well, at least narrower) than me. I can get into the loo no problem, but then on attempting to leave I find myself with frozen muscles, stuck staring at a blank wall and unable in the tight space to turn round towards the door. With some considerable effort I have managed each time to force my growing bulk round and out, but will I always be able to? In fact, when I went during a ferry trip, Marie who was waiting with increasing apprehension outside the men’s room ended up sending in some hapless tourist to check for “a guy in a black T-shirt who might need help”. Fortunately half the men in there were wearing black shirts, so I narrowly escaped embarrassment. I know she means well, but honestly! On the trip back in a few days’ time I plan to stick strictly to a dry diet of peanuts and saltines.