Friday, 16 March 2012

A week of contrasts

And I'm not talking about the weather, although here we've had foggy and overcast grey days, but also bright sun of the sort which makes you want to go on holiday, or at least have a picnic by the river. No, I'm sorry, I'm talking about the NHS again, because of course with two of us being under the doctors that's what quite a bit of our life is taken up with.

I was booked in with the GP on Monday to follow up the spasticity clinic visit. As it happened, Lesley, the physio, turned up a couple of hours before, which was helpful as I could discuss things like muscle weakness with her. I still don't quite understand but apparently the point of treatment is to reduce the "tone" of the muscles, i.e. their tightness, and that shouldn't affect things like the strength of my grip, which is important in my survival from falls! The plan would be to increase the dose from a very low base gradually, until they started to have a beneficial effect and to stop before the muscles become so relaxed my legs just give way.

So then it was off to the Doc. The big question for her was about Gabapentin, the prescribed drug, and what would happen should I need to come off it: would it increase the chance of my fitting? To which the answer was "No", provided I came off as gradually as I went on to it. A lesser question was whether it would break the practice's budget, to which the answer was also "No" as it's a generic drug which costs a sniff. Normally it's prescribed for neural pain and for epilepsy; but it also works as a muscle relaxant. So now I'm on the the gentle slope of the Gabapentine, which sounds like the eighth hill of Rome! We'll see what the view's like from the top!

Our next sally was to the wheelchair clinic at the Oxford Centre of Enablement on Wednesday. This was a most odd experience. After someone was picked up by the patient transport service, we sat alone in the waiting room for 25 minutes. Admittedly it was around 1 o'clock; but who's heard of a hospital department that's not busy? It transpired that I was the only patient the OT was seeing that afternoon. Which may explain the whole peculiar experience, which felt like wading through sand. The OT was very nice, but had no background notes, no record of my old wheelchair; come to think of it, I'm not sure she even knew I had MND. All she had was a spiral-bound notebook, a biro and a tape measure ("Ah, just like the good old days.") The appointment had been made routinely after one of the motors on my original much-loved electric wheelchair had stopped working and couldn't be replaced. In its place I'd been supplied, very speedily, with an emergency replacement. Sadly neither Jane nor I knew what the make was. The OT was right - it's a Spectra Plus (the Oxfordshire standard issue); but I was right, it has no tilt mechanism. I suppose we spent about half an hour as she dug out one control panel after another to prove that somewhere was the tilting button. Meanwhile Jane and I sat in this windowless cream room, a bit like Huis Clos. And the right console never appeared. We looked at different backs, which might stop my rightward list. In the end, we broke the deadlock by agreeing that we would go home and look at the wheelchair, while she would phone the repair people who'd supplied it in the first place. She recommended the tilting mechanism and a rather ugly (potentially helpful) back. So after an hour and a half we emerged into the sunlight - and Jane took some shopping therapy in Lidls nearby.

On Thursday I went for the ride with Jane to her trauma clinic at the John Radcliffe. Well, it might have helped her get a disabled parking space! In fact, it didn't. So the desk had the interesting spectacle of the patient pushing a man in the wheelchair. We forgave them for thinking it was the other way round. Jane had been advised to get there early, and it proved good advice. This was quite a different experience. The waiting room was large and patients were sitting scattered around, but the turn-over was slick. Check in. Sit down. Wait for 10 minutes. Called for x-ray. Sit down for 5 minutes. Called for consultation (for Jane with the consultant who admitted her) and out in 5 minutes. Next appointment made at the desk. Appointment: 12.30. Back in the car: 12.50. That's impressive, and more importantly the news about Jane's collar-bone is good. It was a nasty fracture, but now it's 90% healed and, although there'll still be some associated pain, it's now strong enough not to damage.

It was beautifully sunny in the hospital car park and we toyed with the idea of a pub lunch. However we decided against - just as well as the fog rolled in again as we hit the ring road.

Today I have to report that we've been in touch with my wheelchair OT and have agreed that I'll have a replacement tilting wheelchair with a special supportive back. So in due course it will be back to the OCE and then, thanks to the NHS, I'll be installed in a new chair (no, not the soon to be vacant seat in Canterbury!). In that connection I have to say, I think Rowan Williams, whose coming resignation was straightforwardly announced today, will be greatly missed by the Church. I liked and agreed with Archbishop John Sentamu's comment: "Despite his courageous, tireless and holy endeavour, he has been much maligned by people who should have known better. For my part he has been God's apostle for our time." I also enjoyed his reply when asked whether he "fancied" the job, "You can't be serious." I think anyone who did fancy it would be eminently unsuitable. However, I don't begrudge the Archbishop his change of responsibility in Cambridge.


  1. Dear Michael,

    Thanks for your blog. You're an example to us all!

    God bless.

    - Stephen