Indoor wheelies

I have been reminded indirectly by a lovely friend over the pond that I've not posted much about what I'm up to. So here first is something about my smart super wheelchair.

You may remember that before the summer at the MND Clinic I was enquiring about hoists in cars and the fab Jenny Rolfe exceeding my hopes. I don’t want to bore you with a long story, including my miscalculations.

With the help of our local MNDA, I eventually chose an Invacare TDX Neuro Chair, with the central drive wheels, for ease of manoeuvring round the tight corners in our house, and also with a riser. It’s actually not so good for reversing into my lift (it does wheel-spins - not good for the carpet!), but over all it’s a nifty machine, and the grandchildren enjoyed going up in the world. And it is a surprisingly useful facility, as I found on Friday 23rd October at the excellent PLS study day in Oxford (see next post).

Then it’s been a matter of choosing the car and the hoist. We’ve long liked Skodas and the Yeti looked as though its boot opening was high enough to take the wheelchair with its back tipped down. We supplied all the dimensions to the dealer and the hoist fitter who breezily confirmed that it would be fine. The full weight of the chair was 148 kg in all; the BrigAyd hoist was said to be man enough for 150 kg.  So all looked good. 

Well, it was – to a degree. When we got to the dealer’s to pick up the car complete with hoist, the fitter asked us how heavy the wheelchair was and he sucked his teeth and said, “You really need a 200 kg hoist. This is very slow.” Actually, to get the chair in you have to remove the footplates, the armrests and the headrest (which I guess come to about 15 kg), as only without them can you get it in – so it’s quite an operation both before loading and after unloading. That means it would be quite unsuitable if you’re on your own. I suspect another chair might be more streamlined and less complicated for embarking and disembarking.

The Yeti itself is a lovely vehicle. Ours is petrol; so no risk of the VW diesel wheeze! We’re a bit surprised how much room the hoist and wheelchair take up in the capacious boot. I suppose no solution is perfect. However we’ve already enjoyed the increased freedom that the imperfect has provided! So, all in all, we’re pleased and look forward to its coming into its own in the spring.

The Oxford MND Centre

I've often referred to our excellent MND Care Centre in Oxford. It's based in the West Wing of the JR Hospital and the Centre of Enablement at the Nuffield. About a month ago I had my annual check-up there, seeing both the consultant, Professor Kevin Talbot, and the OT, Jenny Rolfe. The beauty of the place is its humanity and its flexibility. Once you're signed in, you're met by a real person, rather like cabin crew on a plane, but it's someone who has first-hand experience in caring for a person with MND, and they keep you informed about who you are going to see, how long you might have to wait (usually not long), who you'll see next and so on. It's so much better than the impersonal announcement over a tannoy or that annoying digital pinging display summoning you to a consulting room. The MND Centre's air hostesses are all volunteers - so valuable.

Mark Stone in the sort of wheelchair I hope to get

Anyway there are two points to this story. One is that talking to Jenny about fitting hoists to get electric wheelchairs into the boot of our car, she was anxious for me not to have an unsuitable hand-me-on chair and recommended a proper neuro-wheelchair with a folding back, which are now being made. She subsequently came out with an engineer to show me the possibilities. I'm now in the process of choosing and looking forward to Jane not having to lug my manual wheelchair in and out - and not having to push me whenever we're away from home.

The cyclists with the reception party outside the hospital (Photos: Lesley Ogden)

The other point is that we then learned about the sponsored cycle ride being done by the Centre's nurse, Rachael, the two consultants and a physio. They started off from the MNDA headquarters in Northampton and went via the centres in Milton Keynes, Aylesbury, Reading, Swindon ending in Oxford - a total of 170 miles, including a gruelling section along the ancient drovers' road, the Ridgeway. Since we'd been the recipients of a generous gift of tickets to Wimbledon, we felt the least we could do was to sponsor them - apart from the fact that we are continually grateful for the care I receive from the MNDA and the NHS. So far they have exceeded their target but just in case here's the Just Giving link. In fact we joined a group to welcome them back at Sunday lunchtime in front of the JR's West Wing. Quite an achievement! And they'd be back in clinic the next day. "Dedication is what you need," as Mr Akabusi used to say.

A rather good meeting

Prof Kevin Talbot

This afternoon we went to our local MNDA meeting. It was in the Peartree Holiday Inn - and there were a lot of us there. The main meat of the afternoon was feedback from Professor Kevin Talbot, the boss of Oxford's MND Centre about the research going on there. As usual he was very clear for us lay folk about very technical matters. The thing that made me most sit up was the fact that now he is involved with the three largest pharmaceutical companies. As I understand it this is because he feels research has now reached the stage where the drug companies' vast libraries of experimental drugs might usefully be tried on MND-affected stem-cells. Members of his team are now producing sufficient of the latter to try "treating" them, the cells. He told us that, though he believed a cure would be found one day, there was a long way to go yet and it was impossible to predict.

Something else he told us was that the specialist nurse who runs the clinic, Rachel Marsden, and the specialist OT, Jenny Rolfe, the country's expert on wheelchairs for neurological patients, have been appointed to NICE's (National Institute for Health and Care Excellence) advisory panel on MND. I reflected again on how blessed I am to have this Care Centre monitoring my condition.

Jenny Rolfe

Jenny herself reported on the International MND Symposium of last December, which happened in Milan. She concentrated on the care side, such as improving non-invasive ventilation, the evidence of the pros and cons of different direct feeding methods, the devising of an optimum powered wheelchair for people with MND - the Neuro Powered Wheelchair. Judging from my experience there can be no one better than Jenny to know exactly what's needed. One thing she mentioned - which clearly appealed to a lot of others - was the Cuddle Chair, a riser-recliner sofa, designed so that the MND person could have two armrests, essential for standing up, but also can sit with someone, rather than always in isolation. I looked it up on the internet when I got home (Wealden Rehab Kent); ominously there's no price. But it would be nice....

More hospital visits

We began this week with my annual visit to the MND Clinic at the John Radcliffe in Oxford, followed by Jane going for a CT scan to check her collar-bone. In order to find where the latter was in the hospital, I looked on the hospital website - and who should I see smiling out at me, but our friends from Stanford, John and Jean Dudley. John last year died of cancer. Jean was a nurse. They were a lovely and brave couple, who had been through a lot in their lives. It was good to see that tribute to John in his latter days.

Once again our experience on Monday in both departments was excellent. At the MND Clinic, having checked in, we were greeted by a senior MNDA visitor who then went to tell the consultant. The personal touch was nice. Our wait for Dr Turner was negligible. It was my first visit to him. He, I think, is the PLS expert for the area. A good chat with him and some useful information, and then it was on to Rachael Marsden who is the coordinating MND nurse. She measured my puff - which I thought was pathetic - and we chatted again. Then came the trek through the malls of the West Wing and the corridors of the old hospital. When we found the CT department, they didn't have Jane clocked in on their computer, but no matter. We were ushered in to the small full waiting room. The CT assistant knew her stuff - and Jane was actually in and out before her appointment time. And so we were heading for the car. Not a bad morning courtesy of the NHS.

However, I have to admit, the previous week was another story - which wouldn't have mattered had we gone prepared with reading matter. Jane had her check-up at the fracture clinic. A couple of months earlier we'd been in and out in 20 minutes. This time, the x-ray was quick, but then came the wait, and the wait... which wouldn't have mattered had I not had an appointment two and a half hours later to see the OT about that wheelchair in Didcot. I have to say Jenny, the OT, was very forgiving about my being half an hour late - and also brilliant with her advice, which was that that particular variant was no good for me. She redeemed the NHS that afternoon. And to give the fracture clinic their due we gathered most of the doctors were in theatre. You can't control people's accidents.

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.

Inebriated?

Well, I wouldn't quite say that, although I did enjoy two small glasses of wine, thanks to Clare, our friend from Exmouth, and John and Ness, friends from Stanford, between Monday and Saturday. So I doubt whether it was the alcohol. We've just had an amazingly good week. Amazing, because we arrived at the Bath & West Showground each day for praise and Bible study by 9.15 in the morning, leaving for our peaceful cottage about 12 hours later. Amazing, because although I wasn't exactly comfortable, that time was spent in a manual wheelchair and the pain didn't bother me. Personally I tend to believe that it was more to do with people praying for us than mind over matter. (Those who know me will agree that my mind is rather feeble when it comes to controlling my matter!)

At Sleepy Hollow

I'm reflecting more about some of the things I've come home mulling over in my new blog, Room with a view. So I'll not go on about it here except to say what an amazing wife Jane is. She did everything for me, and I mean everything. Think of going to the loo, and I've probably said enough. The showground is not exactly flat, the marquees are not that wheelchair-friendly - although there were usually willing folk to help - and Jane pushed me everywhere.

So now it's back to overcast Grove, but I'm hoping that the clouds won't blow over my spirit for some time yet. I have things to do, books to write...! However, D.v., I suspect we'll be back to the winning combination of our haven, Sleepy Hollow Cottages, and our spiritual watering hole, New Wine! Sleepy Hollow, I must add, is three delightful cottages, well off the beaten track in the Somerset levels. Highly recommended - well, we've been returning for years.

Nooze, "our" pad at Sleepy Hollow

Retreat and advance

So Webber didn't win, but Button did, and our local man, Rubens Barrichello, held his 8th position.  Sadly I didn't see the race (which I gather was more eventful than Bahrain) mainly because of the time difference.  I'm blowed if I'm going to get up at 6 am to watch cars crashing, to say nothing of losing an hour's sleep with British Summertime beginning. (Did you know it's officially European Union Daylight Saving Time?)  Then we had a shared lunch at church to say goodbye to Laurie who's moving to Romania to set up a B&B - and so I missed the 1 pm repeat.  However some things are more important than even sport - of which people are one.

Meanwhile winter has returned, not with the ferocity of Scotland and Northern Ireland here, but I'm feeling fairly frazzled again. The parish church is open during the day this week in an 'Open Retreat' for Holy Week, which seems a good idea. Feebly, when it was pouring with rain on Monday, I chickened out of going down; there was a compensation in that a great friend turned up in the afternoon, while Jane was out.  She made me a cup of tea and passed on the Stanford latest. Then yesterday I managed to bash my wheelchair on the doorpost and the air promptly hissed out of the tyre. However Jane was made of sterner stuff and wheeled me down anyway. Afterwards we threaded our way through the estate via the greengrocer (one of the glories of Grove) to the Cornerstone Bookshop to have a cup of coffee. This time we met no less than six people we knew while there, including a couple who told us their granddaughter was going to have her wedding reception there in May. Now that's a good wheeze. This year I seem to have more connection with Holy Week than last year. Perhaps I'm not so drained.

This morning the engineer came round to mend the wheelchair - and fitted new solid tyres. So they'll never deflate and Jane won't have to pump them up ever again. Yippee! The engineer's not on call this weekend and was looking forward to spending time with his boys. He's a nice chap. This morning I've been working on my book. The editor, Tony, has just sent through the proposed cover. I like it. Utterly different from My Donkeybody!

Three, two, one

The three deacons

Or should that be beacons? Signals of light bringing good news to a frightened dark nation. The one on the left in soft focus (caused by a finger-print on the lens - sorry) is Big Al, centre, and right are Jo and James, the dynamic duo, a real bargain at two for the price of one. In all 17 deacons were ordained in Guildford (deacon comes from the Greek for servant, in case you wanted to know). I don't know why they are told to dress up in those peculiar clothes; it really doesn't do anything for them. Personally I don't think it does anything for the credibility of the Church either. But it's true, it wasn't so long ago that I was dressed something like that. I just wish they'd change the rules soon. Sometimes being in a wheelchair has its advantages and yesterday I enjoyed them: parking right next to the Cathedral, and a prime position to see the ceremony. To be honest, I didn't find the building as impressive as some people. It's tall and big and uncluttered, but it just didn't do it for me, I'm afraid. Not like the hotch-potch of humanity with whom Jesus intended to replace the Temple building.

Well, it was a long day, and Jane who drove both ways was tired when we got back, but at least Federer and Roddick were kind enough to extend their epic struggle in the Finals so that we could watch a good chunk of it. It was appropriate that breaking the record was achieved at such a cost, but I did feel sorry for Andy Roddick who had given everything and come so close to winning. But the hard fact is there could only be one winner - and congratulations to Mr Federer, who did not give up.

Bits and pieces

First a bit of good news and an apology. The wheelchair people arrived at 9.30 am on the day they said they would. So I take back my whinge (in practice if not in principle - I still think it's not beyond the wit of management to give SOME idea of time). However that pales into insignificance compared with what a friend has told me about her husband who's in a nursing home, with dementia. The wheelchair he went in with was used for all and sundry, and soon trashed - footplates gone, brakes broken. I well believe it. It's an all too common occurrence. So she ordered a comfortable replacement with footraising, head rest etc so that he wouldn't have to be confined in the home's rather hard chairs all day. That was last February. It's still not come, and when she rang recently she was told there'd be at least a 30-week wait. So I want to apologise for giving the impression that things are all rosy in the health service garden. If you read Al's last comment, you'll discover that's far from the truth. I must say it irks me that because I have MND I seem to get good and rapid attention, whereas people like my friend's husband, whose condition is just as acute as mine but without the 'terminal' tag, get treated as non-urgent. I know it's 'a matter of resources', but bailing out the banks, replacing Trident, paying MPs fat pensions... how many wheelchairs and technicians could you get for all that?

I had something of a bitty Sunday. It started off OK with the young people at our church leading worship, five long-haired teenagers (male and female), exploding the myth that churches are full of people aged 50 and above and cubs and brownies. It just ain't true.

Then in the afternoon I kept out of the sun and watched the test match between the British Lions and South Africa. Peter had recorded it for me on Saturday, but hadn't told me the result. What a game! Talk about hammer and tongs - and some other instruments of torture. It wasn't the fairest match, but was the firiest I've seen for a long time. And what an ending - heart-break! Watch the Lions hit back on Saturday. Compelling viewing.

Which is more than can be said for 'Songs of Praise' these days. What HAS happened to it? Is it sponsored by the British tourist boards? It seems a cross between scenic photography and the myth-making I was talking about just now. On Sunday it was from Belfast. Where was REAL church? The adults looked as though they were dressed for a funeral, all in black, or purple, or dark turquoise. I've NEVER seen a congregation like it. And as for their singing that great modern song of praise, In Christ alone (good choice!), it was like a dirge. And the kids, who looked considerably happier, from the junior choir of the year were all neatly posed beside the prettified Belfast dock. It seems the programme needs a consultant who really knows where it's at in the contemporary church. Even the interviews seem to have become rather banal too. Shame.

Then came 'Revelations' on Channel 4, which was about the Alpha course, the introduction to Christianity which has become a worldwide phenomenon. It was filmed in Oxford; in fact Jane and I were at St Aldates Church on the last day of filming. The result was a curate's egg, good in parts. It wasn't as dispassionate as it purported to be. There were odd inbalances, such as a long time filming a participant exploring the supermarket skips for bargains, and the curious incident of the unrecorded loss of temper, and the tangentially connected archive film from Toronto. I admired St Aldates for allowing the crew in, unlike 10 other churches, we were told. Whether they regret the final result I don't know. But you do put yourself at the broadcasters' mercy when agree, as we found, though I suspect we fared better. (Maybe it's the difference between the BBC and independent companies.)

The sublime and the ridiculous

On Saturday night I listened to the third of the Reith Lectures, given by the professor of government at Harvard, Michael Sandel. (Incidentally he's the model of Mr Burns of The Simpsons.) The over-all title is A New Citizenship, and he's looking at whether morality has a place in modern politics, now that religion is unfashionable. Saturday's was about genetic enhancement. He talked about 'the one-sided triumph of wilfulness over giftedness', if I remember right. And I was struck how apposite that was to the suicide debate. It's part of a culture which asserts the supremacy of choice over the fact that life is a gift. Clearly from a Christian perspective there are theological flaws in that view, but he was proposing general moral reasons why it's flawed. It's a symptom of the tendency to resist 'openness to the unbidden'. It will transform three key features of our moral landscape, humility, responsibility and solidarity. Far from choice bringing greater freedom, 'Changing our nature to fit the world is the ultimate in disempowerment'. He advocates the reverse: changing the world. Of course he was talking about liberal eugenics, but I was struck by the transfers to the end of life debate. (Lecture 3, about 20 minutes in.) And his analysis seemed to me to contain profound truths, which are often eclipsed by the more utilitarian arguments. Issues so fundamental, it seems to me, have to be discussed on this sort of level, even though it's not easy to package them for popular consumption - which is why TV sound-bite debate is so inadequate.

This morning Jane rang the wheelchair service about my manual chair. Its footplates keep falling down, which is a real nuisance when I'm trying to get into it, and its handgrips keep slipping off, which means Jane is in danger of losing me going downhill. There used to be a nice local firm, Keeps, which looked after the wheelchairs in Oxfordshire; but last year the Health Trust gave the contract to a London-based firm. Anyway, they were helpful when Jane rang, UNTIL she asked could they give us some idea of the time they might come tomorrow, because it helps plan the day. 'Oh yes, madam, anytime between 8 .30 and 5 pm.' Jane laughed. 'Thank you; most helpful!' It's not often, in our experience, that the NHS fails to live up to the Service part of its name, but this was one occasion.