New year laughter and tears

For young people September marked the start of a new academic year, even career. Some universities even begin their "Michaelmas Term" on 9th October, on the presumption, I assume, that their students work much harder or are so much brighter than others that they need far less time to study. Anyway, best wishes to all students and their teachers launched into the most depressing of terms being the longest (16 weeks) term and the increasingly dark days of the year. However for the rest of us also the regular round grinds back into gear, including local MND Association events.

For us, it began a week ago with a meeting at the Holiday Inn with my physiotherapist, Lesley, talking about her work. I know I'm biased, but she was excellent. Clear, comprehensible, and not condescending. One thing she flagged up in response to a question was the possible dire consequence of commissioning. At the moment we have a small expert, if very hard-pressed, team of neuro physios. With competitive tendering there's a danger of going for the cheapest option, which won't be the experienced or the specialist one. If we lost Lesley and her team, it would be a tragedy for everyone with neuro conditions (like MS, Parkinsons, MND) in our area.


Then last night we drove to the Roses' Theatre in Tewkesbury - a long way, but it was for a reason. We were going to hear Pam Ayres giving a performance in aid of the MNDA. We'd had contact because of our shared connection with Stanford in the Vale. She was brought up there and many of her family still live there. As vicar there, I had met her on one or two family occasions. She's genuinely as nice as she seems. She's written a rather good memoir of her early life in the village and then in the WRAF and local firms until her career as a poet and comic raconteur took off after appearing on Opportunity Knocks, in which she was the people's choice. It's called The Necessary Aptitude - which she was repeatedly informed she lacked, up to the point that she uncovered her metier.

Photo ©Nicky Sadler

I don't think she would reckon herself one of Britain's great poets, but I think you could rate her as the ordinary people's poet. She is a winsome stand-up comic, interspersing her apparent stream-of-consciousness performance with poems and self-aware skill. She has great rapport with her audience. Her performance of Shakespeare was hilarious, and her account of her moment of shame in Singapore (you'll have to read the book!) was very moving. If I had to choose the comic highlights for me they'd probably be her new poetic form, poetry tweets, and her attempts at wearing contact lenses.

At the end, Pam gave a short clear explanation of MND and the purpose of the association, and encouraged everyone to sign the MND Charter *. She's given her fee all to the MNDA, which is a considerable donation. I'm not alone in being very grateful. Moreover I need to acknowledge that although the Oxfordshire branch made the initial contact, all the hard work for the evening was done by the Gloucestershire branch, some of whom you can see below.

So we're back in full swing - Next Saturday Jane will be pushing me round Blenheim Palace grounds on our annual sponsored walk "to dfeet MND" (You can find out about coming or sponsoring here.) We hope for the same beautiful weather we had last year. 

* The MND Charter is basically a plea to have even care of MND patients nationwide. Here in Oxfordshire the care and support is brilliant, partly thanks to the dedicated MND Centre at the John Radcliffe, but that's certainly not the case all over the country. 

For example, Pauline, a friend of mine with MND, has just put this on her Facebook page:

You couldn't make it up ......
Struggling with my mobility with regards to getting to the toilet and in and out of bed I contacted the OTs yet again for some assistance. Almost 2 years ago my then OT put forward to 'the panel' the possibility of me having a standing hoist. This was denied with no proper explanation or assessment despite my continued protestations. Now I am more in need of it than ever though still capable of standing using a 4 wheel walker for 1-2 minutes (performed for toileting, getting in and out of bed and on and off shower chair. The OT came and we discussed hoists, again! It was decided that due to my husband's age and frailty he shouldn't use a full hoist on his own but neither could I (still) have a standing hoist because (this is a new argument because it certainly wasn't the case 2 years ago) I can't sit myself up in bed! (WTF?). That's okay if I'm being put to bed by carers (this only happens 3x a week (at 8.30pm and I hate it)) but what about going to the toilet I asked. THIS IS WHAT YOU COULDN'T MAKE UP....A carer could come at a set time each day, she said and put you on the toilet! OMG, not only am I being 'put to bed' like a naughty girl, now, they're expecting me to 'poo to order'! When I started to cry both OT and physiotherapist just sat there whilst my aged mother tottered over to comfort me. When they qualify these people must enter a vacuum wherein they have compassion and empathy (oh yes and common sense) extracted. I await the outcome with bated breath....

I'm not greatly into the "rights'" culture, but I basically agree with the five aims of the Charter, which says:

1.People with MND have the right to an early diagnosis and information

2.People with MND have the right to access quality care and treatments

3.People with MND have the right to be treated as individuals and with dignity and respect

4.People with MND have the right to maximise their quality of life

5.Carers of people with MND have the right to be valued, respected, listened to and well-supported.

Obviously the more people who sign the charter the more weight it will carry with policy makers and purse-string holders. You can access it here. At the moment it's not that straightforward. Hopefully the MNDA will soon make it more accessible. (MND Charter on-line)

 

Watery reflections

I make no secret of it. My wife is amazing. Not only is she lovely, but she also makes things beautiful around me. I myself am pretty much of a lost cause. At the moment she is in the middle of redecorating our downstairs toilet, which I managed to spoil with blu-tac not long after moving here. It's already looking brighter. Meanwhile seedlings are popping up in the conservatory, ready to be planted out when the warm weather comes to stay.

The garden is experiencing its remarkable miracle of returning to life, with young shoots, and lime green leaves, and blossom. This year, despite being in a designated drought area (!), the bog garden is doing particularly well. The kingcup, or marsh marigold as Gardeners' World chose to call it, is in its element. It's never flowered so abundantly or been so luxuriant - hardly surprising since the bog water is overflowing onto the lawn!

I appreciate the reason that the authorities are so scared of ending the declaration of drought, but it must make us Brits look fairly ridiculous as traffic around here gets stranded in flood-water and the spring grass is as lush as ever - the expression "plashy meadows" springs to mind! This afternoon we were making for the admirable Horse and Jockey in Stanford, which is deservedly included in this year's 2012 Good Pub Guide. On the way we went through various section of running and standing water to and beyond Denchworth. Before long of course the floods will drain away, seeping down to replenish the depleted water-table. I reflected, as Jane navigated through the pools and streams, on the plans to build nearly 6,000 new houses around Grove. I'm in favour of providing people with homes, but to be frank I don't believe the council's and developers' undertakings about drainage. I don't doubt that they'll drain surface water effectively into gullies and culverts, from where it will rapidly flow into the brook, thence to the Thames - and out to sea. That leaves suppliers of the aquifers, such as the flood plain through which we drove and on which they plan to build more the majority of the housing, denuded of their modus operandi. I really don't believe this guff about porous tarmac and paving-stones.

Stanford Church: NOT railings outside the vicarage!

It was nice to be back in Stanford. Jane read to me yesterday a news item about Jeremy Clarkson losing a court case to close the coastal footpath going past his Isle of Man home (which happens to be a lighthouse). I mention it because millions of people of course have footpaths going close to their windows. Beyond the vicarage wall in Stanford there was the main spinal path from the houses in the north to the shops and school in the south. It gave a lovely view into our dining room, where we ate all our meals, twenty yards away - not that people bothered much. Many many homes, of course, face directly on to the street, so that the curious could press their noses against the windows. The absurdity of the Clarksons' attempted closing of a legal footpath is that it has now put the lighthouse into the news headlines and onto the tourist map. Maybe they'll have to resort to their Oxfordshire retreat for the privacy they crave. And anyway, have they never heard of net curtains?

Things are never THAT simple

Oxfordshire's in the middle of the television digital switch-over, which seemed to be designed to make a generation of sets redundant, and create a whole new market for freeview boxes and digital TVs. Anyway it began this week. Being disabled I was eligible for the government scheme for help to make the transfer including a digibox. However I declined, as we already have one, and, so they said, it was just a matter of retuning the box.

All I can say is it's a good thing the rugby World Cup's on ITV, as the BBC reception here has been rubbish with all the channels duplicating themselves and cutting out to a blank screen within seconds. But fortunately ITV got the rights and my viewing hasn't been subject to that awful frustration - except yesterday when Pam Ayres appeared on the One Show. She of course was born and bred in Stanford in the Vale, and has just produced the memoir of that time, The Necessary Aptitude. According to the publishers:

  

"Pam Ayres' early childhood in Stanford in the Vale was idyllic in many ways, and typical of that experienced by a great swathe of children born in rural areas in the immediate post-war years. Though her parents' generation was harrowed by war, better times were coming. Everything the family needed was within walking distance in the village, and life with four older brothers and a sister in their crowded council house was exceedingly lively.

"In her late teens, Pam grew dissatisfied with her life as a Civil Service clerk with only the local 'hop' for scintillating excitement. Having seen three of her brothers called up for National Service and sent off to exciting destinations, Pam felt desperate for travel and adventure. She joined the WRAF and soon found herself in the Far East. There she began to write in earnest, and develop the unique talent that would make her one of Britain's favourite comics...

"Written with Pam's much-loved combination of humour and poignancy, The Necessary Aptitude is a beautifully written memoir of her early years."

Fortunately, I've since been able to listen to the programme on iPlayer. She is genuinely nice and unspoiled by success. 


Eventually, having googled duplicating channels in digital switch-over, I discovered that I was one among many having problems. It wasn't as simple as we've been told - things never are. I think I may have solved it now - but I'm not counting my chickens.