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.

Fun with pills

Last week I visited my neurologist – who looks like she’s 17, but that’s probably just because I’m an old fart. I complained that my Parkinson’s disease has progressed a bit so I now have ‘sticky’ hands and feet (and have accused my poor wife of coating the floors in treacle), so she upped my dosage of Sifrol to 16 pills per day – from three lots of four to four lots of four pills. Plus I’m taking up to six pain pills per day as three lots of two. It’s almost impossible to keep track of what to take when – I’ve set the alarms on my mobile phone, but as the phone sits either at home in the charger (which, handily, is two floors away from my study) or at work in my jacket pocket (i.e. slung over a chair in a different room), either no one hears it OR it goes off directly in my ear – and bloody loud that can be. Marie keeps trudging up the stairs with the phone for me to sort out (because it might have been a call) which tends to annoy both of us.

We are both going a bit crazy with lack of sleep. We’ve got separate bedrooms now or neither of us would ever sleep at all, but with the doors open so we can still wake each other up when getting up for a wee, or to let the cat in and out (and in and out and in and out), or when my insomnia wins and I switch on night-time radio. On top, I’m going a bit mad with the back pain (again!) and, if I’m honest, with life. So what am I doing to fight the PD? Nothing much, just having a therapeutic moan – it’s a carbon-neutral thing to do.

Slightly less good for the old carbon footprint is living in a different country from my children and grandchildren. We’re off to the UK next week to see them, and to get one of my teeth fixed (we have a serious down on the local dentist, so we try to go when abroad). I’m almost certain that more than one visit is needed, which will give me another excuse to see the offspring. Although we’re only staying for one night this visit, we have booked our luggage in as hold baggage to make life easier, and are paying extra for the priviledge (cash-rich, health-poor). So a trip to the supermarket is in order to fill up the bag for the return journey. We’ll stock up on the necessities of expat life: crumpets, pork pie, bacon, bisto and marmite (the marmite is there mainly to annoy Marie who thinks its is disgusting, but I like it). We’re taking the kids a book from our by now extensive library about PD – hopefully it will do more good than harm.