Floods with a silver lining

I forgot to mention yesterday that when we arrived in the rain at The Horse and Jockey pub in Stanford, we were greeted by a chipper Charles. We were having lunch with his wife, Mandy, and himself. They live in Grove in an former flour mill on the Letcombe Brook. They now generate green electricity with a turbine there (though at the moment the turbine is out of action). I mentioned them in My Donkeybody, as their mill was badly flooded in July 2007 - and more importantly they came to be our guardian angels when I was diagnosed with MND.

Anyway, they were both excited as they had earlier that morning seen an otter in the brook - first time ever. "Must have got lost," said Charles. It was a bit of compensation for their and their neighbours' shock at the wholesale and unannounced uprooting of a screen of trees on the opposite bank. I hope the otter returns to delight them and even creates a holt in the area. I don't think they took a photo. But sometimes, when you do fuss over getting a snap, I think you miss the magic of the moment. After all a photograph never captures the real thing. However, I guess this Guardian photo is something like what Charles and Mandy witnessed.

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?

Mama's 95th, or Money can't buy everything

I enjoyed this, which my friend, Jeannie, sent me from New York. A pleasant change from many of the sentimental stories like this which I often get sent. I don't know its source. Gives a new slant to "read, mark, learn, and inwardly digest"!

MAMA'S BIBLE.
Four brothers left home for college, and they became successful doctors and lawyers.

One evening, they chatted after having dinner together. They discussed the 95th birthday gifts they were able to give their elderly mother who'd moved to Florida .

The first said, "You know I had a big house built for Mama."

The second said, "And I had a large theater built in the house."

The third said, "And I had my Mercedes dealer deliver an SL600 to her."

The fourth said, "You know how Mama loved reading the Bible and you know
she can't read anymore because she can't see very well. I met this
preacher who told me about a parrot who could recite the entire Bible. It took
ten preachers almost 8 years to teach him. I had to pledge to contribute
$50,000 a year for five years to the church, but it was worth it.
Mama only has to name the chapter and verse, and the parrot will recite it."

The other brothers were impressed. After the celebration Mama sent out
her "Thank You" notes.

She wrote: Milton , the house you built is so huge that I live in only one
room, but I have to clean the whole house. Thanks anyway."

"Marvin, I am too old to travel. I stay home; I have my groceries
delivered, so I never use the Mercedes. The thought was good. Thanks."

"Michael, you gave me an expensive theater with Dolby sound and it can
hold 50 people, but all of my friends are dead, I've lost my hearing,
and I'm nearly blind. I'll never use it. Thank you for the gesture just the
same."

"Dearest Melvin, you were the only son to have the good sense to give
a little thought to your gift. The chicken was delicious. Thank you so much."

Love, Mama.

How soon will we forget?

Just to finish off my mild protest yesterday, here's what Cancel Bahrain F1 Grand Prix 2011 Facebook group (which I "Like") posted yesterday. It's more passionate and better informed than me, and almost elegaic in its disappointment. It was also accompanied by the shocking photo of the head of Ali Jawad Ahmad al-Shaikh. It's too gruesome to copy here.

"So the race went ahead today, contrary to all common sense and the precedent F1 had set in South Africa in 1985. We feel it is a betrayal of each and every one of the brave people of Bahrain who have risked everything for political reform – with far too many losing their lives, freedom, jobs, and the sense of well-being that comes with the expectation that one’s government will not use torture and collective punishment to trample on human rights. It is a temporary victory for a despotic family and its minions, who chose to embark on a campaign of terror to seek to remain in power, oblivious to the fact that in doing so, it forfeited any claim to legitimacy it may once have had. 

"Time after time, the Al Khalifa family has promised reform, only to deliver half-measures, bogus reform and nothing that anyone in a “civilized” western nation would accept and recognize as genuine democracy. The vast majority of Bahrain’s people have made their intention to live as citizens in their country – not as subjects – loud and clear.

"Although we expect some people will turn away from this subject now that the 2012 race was run, we feel there is still a great deal to do. There is ABSOLUTELY no reason to expect that the Bahrain government will free its many remaining political prisoners, cease its terror campaign that prevents peaceful demonstrations and even funeral processions from taking place without enormous amounts of tear gas being fired, create genuine political representative bodies, take serious reconstruction of destroyed religious shrines, end discrimination in employment for members of the majority Shia community, end the use of propaganda firms wasting money that could be used to better conditions in many villages, etc. We think it’s time for the Prime Minister to leave, after 42 years in power, but that, like all of the reforms mentioned, is a subject for the people of Bahrain to decide with or without the ruling government, which, lest anyone forget, has run Bahrain for over two centuries.

"Our focus turns in a laser-like fashion to F1. Its drivers have been an enormous disappointment. We’ve analogized them to sheep, calmly following the herd and refusing to step out of line and express what everyone who has opposed this race has felt – that human rights DO MATTER, and that the world system which enriches the F1 circus does not operate in a vacuum. People were killed, jailed, tortured, sacked from their job, expelled from university, and subjected to night after night of teargas, stun grenades, sound bombs, and the uncertainty if the sanctity of one’s one home would be violated and a loved one spirited away in the middle of the night, so that this race could be run. We are OUTRAGED by that knowledge, and we aim to make sure that F1 learns from this egregious mistake, and we never see it repeated.

"The governments of nations where human rights are thought to be valued have been disappointingly silent on events in Bahrain, for reasons well-known to most people who follow events there, none of which are good reasons. They are complicit in the sell-out of Bahrain’s democracy protesters, and we denounce the facilitating role they played in the staging of the 2012 Bahrain Grand Prix.

"The teams, the sponsors, the suppliers, and the FIA, have all bitterly disappointed, and we aim to continue to express our disapproval, especially with sponsors, who were in a unique position to prevent this terrible error of a race from happening, but chose to hide behind “contractual obligations” and leave the decision to race up to the incestuously self-interested Jean Todt, who is connected by business arrangements with his son Nicolas to the despotic Bahrain government. 

"But we are especially disappointed by Bernie Ecclestone, the enigmatic octogenarian who so brilliantly and methodically built the F1 series into the global marketing mammoth that it is today, but who has been breathtakingly blind to real events in Bahrain, has puzzingly employed a double-standard when comparing South Africa to Bahrain, and has in the process said, let’s be clear, things that are either chilling in their flippancy or the signs of a man who has started down the road of losing his mental faculties. His performance in running the 2012 Bahrain Grand Prix is cause for alarm for every man, woman and child who has even the most casual, passing interest in F1 and its future. Many of us who love the sport dearly have come to realize it won’t be the same after this weekend, and it had damn well better change, for a repeat of this enormous tragedy could be the straw that breaks the camel’s back, transforming our sport from the beautiful contest of design, engineering, construction, strategizing, maintenance, and of course driving ability, into a mere plaything to be used by ruthless dictators, unfazed by the killing of even 14-year-old young men (like Ali Jawad Ahmad al-Shaikh, pictured) en route to another enormous payday. 

"In the final analysis, the sport belongs to its fans. Without us, people like Crown Prince Salman bin Hamad bin Isa Al Khalifa would have to look elsewhere for financing to buy teargas and pay torturers, public relations firms and police “reformers” to keep his family in power in coming years. As the clock starts counting down to the day of the 2013 Bahrain Grand Prix, we commit to working to save the sport we love from all those responsible for the 2012 Gulf Air Bahrain Grand Prix. Please join us, as there is plenty of work yet to be done. --- Tom Rizzo (for the Cancel Bahrain F1 Grand Prix 2011 group)"

I wonder how much coverage Bahrain will receive in the news from now on. I wonder whether we'll ever hear about the "enquiry" into the death of Salah Abbas Habib, the 39-year old democracy campaigner, shot on Friday night by the Bahraini security forces.

Grand Prix disgrace

I'm doing fine. However I'm a bit wrapped up in my book at the moment, and so I'm afraid I'll have to resort to short bulletins, or borrow from other sources. (What's new?) Good news and bad news this weekend as far as I'm concerned. Good - Bristol City escaped relegation from the Championship, and, the bad - Formula 1 Grand Prix took place in Bahrain despite the violent suppression of the Shiite majority by the ruling Sunni élite. All the local majority want is to be given the vote, and yet civil rights campaigners are arrested and shot in their "Arab Spring" and the doctors who treated them banged up in jail after sham trials.

Bernie Ecclestone, Jean Todt and their millionaire pals claim that F1 is merely a sport and nothing to do with politics. They show a strangely short memory of history and a blinkered view of reality. They seem to have forgotten the part that the cricket and rugby boycotts played in bringing apartheid to an end in South Africa. I'm proud of the lead that David Sheppard gave. Of course sport and politics are intimately bound up. Why were we so keen to land the Olympics? And so annoyed at not hosting the World Cup? Because they're a source of prestige and, we hope, income for the country. And that's exactly why the Bahraini government wanted to stage the Grand Prix again - in spite of their grisly human rights record. The one good thing is that it seems to have backfired in their face somewhat, as the world has suddenly become aware of the unrest and human rights abuses in their country to a degree which wouldn't otherwise have happened. No one can be under the illusion that life is back to normal now - and hopefully no one will forget, and even more it is to be hoped that the Formula 1 circus won't return there next year, unless they have put their civil rights' house in order.

I know it's a gesture which made no difference except to me, but I boycotted the BBC broadcast race highlights and I don't even know the results order. Probably they were contracted to broadcast it, but personally I think they should have starved the race of the oxygen of publicity. I admit my boycott was silly but still it was satisfying in a sedentary way.

"Untold possibilities"

Last time I wrote about Bram Harrison, the DJ with Locked-in Syndrome. A bit of the I article I omitted was this: "Harrison is cognitively sharp, funny and mischievous; a technology geek who holds faith in medical progress, stem cell advances in particular, to perhaps unlock him one day." 
Browsing the MND Association website this afternoon I came across this article: Association-funded stem cell research achieves milestone. I remember talking to Tom Isaacs, with Parkinson's, who walked 4500 miles round the British coast raising funds for research into that disease, about ten years ago. He had great faith that research would see a cure even within his lifetime. He founded The Cure Parkinson's Trust, whose watchword is "Hope". Neither he nor I could have foreseen the exponential acceleration of research into neurological conditions over that time. What particularly excites me about the research described below is that it doesn't use embryonic stem cells (i.e. obtained from fertility-treatment excess embryos) but induced pluripotent stem cells (iPS cells) obtained from adult skin cells. For me it poses less of an ethical problem. Predictably this news didn't hit the national headlines, in contrast to embryonic stem cells - which seems to with strange regularity.


However, this is a really good news story for the reasons the article explains.

A cutting-edge stem cell research programme funded by the MND Association has produced a key development that could have a powerful impact on the search for treatments for MND.

The international research team, led by world-class scientists from the University of Edinburgh, King’s College London and Columbia University (New York), has for the first time used stem cells derived from adult skin to generate living human motor neurones that display key characteristics of MND.

These diseased neurones offer huge potential. As a uniquely realistic laboratory model of the disease they could allow for rapid screening of thousands of drugs, as well as furthering understanding of underlying disease mechanisms.

What did the researchers do?

Researchers started with skin cells donated by a 56 year old man with the rare, inherited form of MND caused by mistakes in the TDP-43 gene. Although abnormalities in this gene are uncommon, the protein produced by the TDP-43 gene has been implicated as a pivotal player in the majority of cases of MND.

Scientists used a special cocktail of chemicals to ‘reprogramme’ the donated skin cells, turning them first into stem cells similar to those derived from embryos and then into motor neurones.

Compared to motor neurones generated from the skin cells of healthy individuals, the neurones with the abnormal TDP-43 demonstrated decreased survival and increased vulnerability to damage.

The TDP-43 protein also displayed a greater tendency towards clumping together, or aggregating. This is a recognised hallmark of diseased neurones in MND and for the first time provides scientists with the opportunity to see the direct effect of abnormal TDP-43 on living human cells.

“Untold possibilities”

The team’s results, published as a ‘free to access’ article in the journal PNAS, provide proof of principle that skin cells can be successfully turned into diseased motor neurones.

At the same time they represent significant progress towards the key aim of this groundbreaking £800,000 programme: to develop and characterise a robust human cell model of MND that can be made available to scientists across the world.

Dr Brian Dickie, director of research development at the MND Association, said: “This advance is a significant milestone on the road to developing a laboratory model of MND that faithfully reflects the cellular events happening in the patient. It is also a testament to the importance of international collaboration, with eminent scientists from leading institutions around the world focused on the common goal of understanding and, ultimately, defeating this devastating disease”.

Prof Siddharthan Chandran of the University of Edinburgh, who is leading the programme, said: “Using patient stem cells to model MND in a dish offers untold possibilities for how we study the cause of this terrible disease as well as accelerating drug discovery by providing a cost effective way to test many thousands of potential treatments.”

How much better is it to cherish hope than to abandon it. Wasn't it Dante's Hell that had the sign over it, "Abandon Hope, all ye who enter here"? Well, here's a reason for hope, maybe not for my generation, or just maybe so....

Why can't we have more of this in the media?

We really like the i newspaper. For one thing it doesn't cost an arm and a leg (20p weekdays, 30p Saturdays); for another it doesn't weigh a ton or represent a small forest, just a small tabloid format; for a third, its editorial approach is "independent"; for a fourth, it has a good page of puzzles, like crosswords, sodukos, codewords to keep our minds active. I don't think it makes a profit for its owner. It deserves to, and deserves to be better known. After all, the other newspapers from The Times downwards are increasingly full of rubbish.

Anyway, on Saturday, Jane pointed out a major article to me:

Bram Harrison, with i journalist Nina Lakhani (Independent photo)

Locked in but still lost in music: UK's bravest DJ. It's about Bram Harrison, a chap who had a mountain bike accident 14 years ago, suffering a severe head injury which left him "locked in", able only to communicate by eye-movement. He is known as DJ Eye Tech on his own radio show, Eye Life Radio. Here's part of the article: "Several years ago a doctor asked him what they should do if, for whatever reason, his heart stopped. In other words, would he want to be resuscitated or should they let him die? He looked up immediately. He wanted to live then, just as he wants to live now.

His desire for a long, healthy, meaningful life may strike some as surprising. Another man with locked-in syndrome, Tony Nicklinson, 57 – stricken since a 2005 stroke – has made headlines in recent weeks as he took his fight for the right to die to the High Court.

Nicklinson's plight has attracted a lot of empathy as many people assume they would feel the same way: that a locked-in life is not worth living.

This makes Harrison angry. 'In the early days two nurses that I overheard talking said that I would not last long and that I would kill myself, but I knew that would never happen.'

In an email a few days before we meet, Harrison said: 'I've definitely not got the same view as Tony Nicklinson. I don't want people to think that locked-in syndrome is unbearable. I enjoy my rather limited life.'" The article ends: "There have been many low points but he has never felt hopeless. 'I don't want my relatives to see Tony Nicklinson and think that's how I feel,' he says."

The article is worth reading, because it isn't the picture projected by most of the media. About a year ago, BBC's Radio 5 broadcast the whole of the Victoria Derbyshire programme from Tony Nicklinson's home. And the Beeb have been back several times since, including with me. No one would want to be in his situation and I don't in the least blame him for his desire to die. Admittedly he's gone to the High Court since then to ask if someone can be allowed to end his life without it being murder. But that wasn't in the news a year ago.

My question is where was, and is, the national coverage of Michelle Wheatley, the young mum whom I mentioned in I Choose Everything, and Gary Parkinson, who scouts for Middlesborough FC, and now Bram Harrison, all of whom have locked-in syndrome and want to live. I don't have the resources of the BBC, but I've come across them and written about them. Why do we not hear from the national broadcaster about them? As a friend of mine commented, "Hope other news sources run this too - to prove they're not biased!" I don't think they have - as yet. I've found three positives to one negative. Even the worst of disabilities can be, and is, lived positively. So I say, good for The i! And for goodness' sake prove your independence, BBC! Let's hear about them. Let's see them.

Sunny days in Devon

I have to apologise, not least to the friend who wondered whether my blogging silence meant something was wrong. I'm sorry to say it means approximately the opposite - that I've been having rather a good time, partly because I've been in the book-writing "zone" and partly because we went away for a long sunny weekend to South Devon coming back a week ago.

We stayed in Newton Poppleford for two reasons: a) it's near Jane's revered and lovely parents, and b) it's where I found a promising disabled friendly bed and breakfast. Brookfields proved to be better than I'd dared hope. It's run by a couple, David and Rosemary, who'd previously owned a nursing home and therefore understood my needs well. Our bedroom had a wetroom en suite which, of course, is ideal. There was plenty of room both sides of the bed. And the breakfasts were amazing. David and Rosemary seek out the best from every source, working on the principle that they give their guests what they themselves would like. And they are excellent and generous cooks. When we eating out with Jane's parents at midday, we had the continental option - well, you can't do much with that, can you? It was fine, but not as extraordinarily yummy as the full English.

I suppose what was best about Brookfields was the hospitality. It isn't the hotel-type B&B; it's a home. Even Axy, the dog, is friendly and welcoming.

Friday was Sport Relief day. We'd decided to make use of our National Trust card and visit Killerton House, just on the other side of the M5. It's an impressive house, built originally as a stop-gap, for the Acland family. Happily they decided to stick with it rather than build a grandiose permanent house on top of the hill. It's grand enough as it is, with beautiful grounds (not that wheelchair friendly) and an accessible ground floor. Jane indulged one of my vices at lunchtime with a packet of quavers, which was kind of her.

About midday there was an influx, a torrent of primary school children, 200 of them in blue, yellow, green and red tops. They were, we realised, marking Sport Relief, competing in ages round different distances, including a course of up to a mile. It was beautiful sunny afternoon; parents and peers shouted encouragement. What better way to end the week - pupils and for teachers! And for us it proved diverting entertainment.

St Luke's, Newton Poppleford

Our Italian evening was, I'd say, average, although the service was excellent - as were the quite different services we attended on the Sunday. The first was in St Luke's, Newton Poppleford, which Rosemary took us to in the morning. A delightful friendly relaxed yet reverent Communion service. It reminded somewhat of Stanford, which is quite high praise! After a cream tea in the afternoon we headed off to see the sea and then to join our friends at Christ Church, Exmouth. Here we had excellent worship music, and a memorable sermon on Psalm 1 and pee charts! On the way back we sampled Krispies' award-winning fish and chips, which I have to say were just as good as their reputation. Back at the B&B we were plied with sloe gin and red wine - "and so to bed" after a great day.

Christ Church, Exmouth

Jane returning with the clotted golden treasure!

Before coming home on Monday, we had to pick up some clotted cream for a member of our family (and ourselves, to be fair) from what is agreed to be the best supplier in Sidmouth. We spent another couple of mellow hours with Jane's parents, this time in Sidmouth Garden Centre's remarkably good and reasonably priced restaurant. Our progress was almost brought to a halt by an accident blocking both directions of the A303. However instead of following the official diversion we successfully circumvented it and were home in time to feed the dog. Although physically taxing, as all changes from routine inevitably are, with a disabled body to look after, we both returned stimulated and ready to enjoy the week of unbroken sunshine which followed. Breaks are physically tiring and take a bit of recovery time, but mentally they are essential for riding the stresses of disability - which is the reason why funding which makes them possible must not be cut. The alternative, carers being unable to carry on, would cost the tax-payer much more, with two casualties to deal with. I await with some trepidation the government's proposals for creating a viable care system.