Always look on the bright side - or count your blessings

Today has been a particularly good one. For one thing it's suited me being a tad cooler. I don't want the summer to end too soon. It would be nice to have a sunny holiday.

At the moment my lift is receiving its six-monthly health check from Ashley, our regular lift engineer and emergency doctor. He is such an expert even in Pollock lifts which aren’t his stock in trade. What's more, he's a lovely guy. These regular services are one of the benefits that I receive because of my incapacity.

 

Our old Yeti

Earlier in the day we drove to our nearest Volkswagen dealer as the time is coming to change my Motability vehicle. Sadly the fashionable Skoda Yeti is no longer being produced and so I’ve done my research and decided a Touran – which is a bit bigger - is my best bet. VWs have a delay in their production, I gather, as they’re working on their emissions…. So it looks as though we’ll have to wait for a few months to take delivery. But Motability are good and should allow us to keep our Yeti until the Touran is ready. The Motability scheme which provides cars, insurance, servicing etc using the mobility component of your PIP (Personal Independence Payment, the replacement of the old Disability Living Allowance) is great – as long as you receive it. However it’s far from a foregone conclusion, these days, that if you’re disabled you’ll be allowed it. A very helpful and efficient chap called Kit steered us through the process of ordering.

Then before that I had an appointment with the podiatrist. These happen every six weeks, and I have them free on the NHS after I almost pulled a nail off a toe with my rollator a couple of years ago. I never quite know who I’ll see as our local surgery is part of an area podiatry service. But today a new rather skilled podiatrist called Lottie dealt with me. My toenails are not a pleasant phenomenon, but she soon had them sorted out. I hope she treats me again.

As we returned home for lunch and considered how much help we received, we reflected that although having MND was not a choice we’d ever ever make, I am really well provided for and have a lot to be grateful for. To cap today off, Pete and Jane, two of our best friends will be coming round tonight to have supper.

Above all and beneath it all, of course, is Jane. I read this sentence while waiting for the podiatrist: “Caring for a loved one is among the most selfless acts that can be imagined.” Yes, spot on. I’m a lucky man.

Care - what's it worth?

Yesterday I happened to hear an interview conducted by Anna Magnusson on BBC Radio 4's Sunday Worship. It gave me an insight to the vocation of nursing:

 

Nursingtimes.nets

"One of my nieces is a newly-qualified Staff Nurse. Ellie’s 23, and works in a vast London hospital. She’s in the kind of job which gives her insight and maturity beyond her years. Every day, she looks after strangers. We sat down together one afternoon to talk about caring, and giving back what we receive. And what the story of Jesus washing the disciples’ feet means to her:

It’s the son of God; it is the most holy person saying, 'I don’t care if you’re homeless, I don’t care if you’re the scum of the earth, I am here to serve you.'  It’s just throwing every ideal we have out the window that you have to be the most rich, you have to be clean, you have to be good at your job – as long as you are a person, that’s what makes you valuable, and I am looking past anything other than you being a human – you are a human so I am going to serve you.

As a nurse you do have to do that, you have to say, I don’t care if you’re a drug-dealer, I don’t care if you’re a criminal, I don’t care if you’re a nun – I am going to treat you exactly the same because I have a duty to serve every person that comes through this door.

Tell me a bit about feet, though – what kind of feet do you encounter in your work?

Ooh … They come in all shapes and sizes, all lengths of toenails and smelliness and grottiness.  We’ve got patients who come off the streets, who are homeless.  And sometimes it can be quite horrible! 

But clearly you can’t allow yourself to be squeamish because that’s your job; it involves a lot of putting your hands on people, on giving intimate help?

Yeh, and I think over the years you do, you become a bit more immune to it.

I remember one of my patients, he had come off the street and he had this massive beard which he said he never used to have, and he was quite stinky, so I scrubbed him.  And you could just see the dirt all falling off.  And then goes, ‘Oh, I really want to have a shave!’.  So I chopped off all of his beard with some scissors and then I got the shaver out.  And I shaved his whole beard.  And he just couldn’t thank me enough, it was great.  And it was such a lovely bonding time between us, because I asked him about his life, I was able to find out what he was like when he was younger, and when he left he just couldn’t stop shaking my hand.  Because it’s one small thing that makes such a big difference, and I think everyone would want, I think people would want to do that, to give a tiny bit to someone and for them to receive so much from it...."

She added another insight into the folly of our policy of squeezing more and more out of the resource which we deliberately limit financially. We can't expect the time and level of compassion we'd like, when we understaff the NHS because we underfund. Time is money - and money provides time. 

"One of the main reasons I love nursing, and especially when I was a student – I was able to give more of myself to them because I wasn’t pressured by being a staff nurse; I had that little bit of extra time take the effort to make sure that it’s done in the most lovely way, to say, 'No, don’t rush this, this is someone, this is your grandma, this is your mum, take the time to make this as nice as it can be – even if it’s just 10 minutes, giving someone a little bed-bath in their hospital bed.' And then very quickly you’re getting a picture of their life.  So I never view them really as strangers."

In the same programme Anna Magnusson related,

"I’ve a friend in London who used to work for a home-care service.  

The allocated time for each visit was 15 minutes, and it was never enough.  She couldn’t allow herself to leave someone soiled or half-dressed, so she would over-run. Then she had to rush off to the next person, always behind schedule, always distressed over what she could not do to help. 

She was paid peanuts and, in the end, she couldn’t continue and care for her own family as well.

She trained as a bus driver instead, and was paid a decent wage."  

We know that's true - and yet it seems that as a society we are not willing to pay the price of providing care to those in need at their point of need. And then we, led by the media, have the gall to complain at waiting times or cursory treatment. And politicians find it convenient to collude in the blame game - to deflect our attention away from the fact that they don't have the courage to face themselves and us with the truth that care costs. Care is worth paying for. The NHS is worth paying for. And that means nurses and those in the care professions deserve rewarding.

How did you spend your day?

Peter, a good friend of mine, who’s had PLS (the same sort of Motor Neurone Disease as me) for five or so years longer than me, not unnaturally gets tired and fed up with it. We try to cheer each up with jokes and encouraging stories.

Last week he sent me this short conversation.

Wife: “So, what did you do today?”

Husband: “I changed a light bulb.”

Wife: “And that’s all?”

Husband: “Yes – and I had a drone film it.”

Then comes a YouTube clip. It’s a film taken by a drone of an engineer climbing a 1500 foot high communication tower to replace the light bulb at the top. 

It’s worth a viewing. Click here to see it.

It occurred to me that it is quite a good parable of what life is like with MND. A simple job becomes a massive task. Some tasks become impossible, despite your skilled support team of carers, physios, OTs, nurses and doctors. For example, getting to the toilet is a major and potentially hazardous operation. Eating a meal is hard concentrated work. Not that I’m looking for sympathy. Like the engineer at the top of his 1500 foot TV mast, a task completed brings great satisfaction, and sometimes a view can be breathtaking.

This of course is not only true for people with MND. I have friends with ME for whom any exertion comes at great cost. And I'm sure it's also true for those who suffer from depression. Climbing from the black pit is more than they can bear. Surely you deserve a celebratory video when you make what others might regard as a minor achievement, your own "light-bulb moment"! Perhaps we should share them as well.

(This post is dedicated to my friend, Peter.)

Euthanasia - there is a better way

I talked to a professional carer a few weeks ago. She had been caring for someone with terminal cancer to the end. After that she had been on holiday, and had met another carer, a nurse, who'd worked in Switzerland, where assisted suicide is legalised. He too had been caring for a cancer patient. The doctor had prescribed lethal drugs for his patient but would not administer them. (In Switzerland doctors aren't allowed to do the actual deed.) But the nurse was compelled to do it, although it ran counter to his conscience. I presume the patient had requested it.

However the effect on the nurse had been catastrophic. Can you imagine being forced to kill someone when your whole conscience and all your convictions forbade the taking of life? How would you live with yourself? The answer for that nurse was to abandon his vocation and to drown his guilt in a cocktail of drink and drugs. It was taking him a long time to rehabilitate himself, and the scars and nightmares will never leave him, I imagine.

Such is one seldom considered effect of legalising assisted suicide. There are always others involved. There is always some impact on their psyches. It might inure them to the event - which cannot be desirable. Or it might scar them as it did that French nurse.

A Labour MP, Rob Marris, has tabled a private member's bill in the House of Commons for 11th September after MPs return from holiday. It's basically the same old bill that Lord Falconer tried to introduce in the Lords last year, and will be fraught with the same old dangers which have restrained our legislators wisely from going down the same route as Switzerland, Belgium, Holland and a handful of US states. Open the door to "assisting" others to die and you open a Pandora's box of unforeseen consequences. My local MP rightly pointed out that, in Britain, we lead the world in palliative care. Our response to the physical and emotional pain of terminal illness must be to show compassion by extending and developing this further - not by letting people die when they most need encouragement and assistance to live. As evidence from other countries has shown, a right to die would for many be a duty to die. I hope other MPs will also fiercely resist this Bill for that reason.

There is a better way.

Being present at someone's deathbed is always momentous, but usually it is a necessary and healing part of grieving. It can't be that, if one is contributing to the death. But if one is there accompanying the dying person and sharing in their struggle to depart, there is no guilt in the memory, only a sense of a compassionate task well completed.

Two of my great friends have died within the last ten days. They were both men of faith. One died in a hospice and the other died at home. The passing to new life is never easy. It wasn't for them either, but it was peaceful. I suppose the body is very attached to physical life. Matt Redman's song Bless the Lord, O my soul was being sung as one friend died and will be sung at the other friend's funeral:

"Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name.

And on that day
When my strength is failing
The end draws near
And my time has come
Still my soul will
Sing Your praise unending
Ten thousand years
And then forevermore
Forevermore."

Whether you have faith, as my friends had, or not, a "natural death" is better than an unnatural one. Hard, but free of the dangers and peculiar consequences which accompany the intentional shortening of life. 

Our two minutes of "fame"!

I must say happy though I am for the predictable recognition that Eddie Redmayne received on Sunday night for best actor at the Oscars - and the dedication he made to people with MND/ALS in his acceptance speech, I am disappointed that no recognition was afforded to Felicity Jones for best actress, portraying Jane Hawking. As I've commented previously his was a bravura performance of a bravura role. Her role was far from bravura and demanded a subtle contained performance, and that was exactly what she gave it: beautifully nuanced, tracing the patterns of shade and light in the highly condensed account of a relationship of more than forty years. I would have dedicated her Oscar to all the unheralded carers of us who have the disease in one form or another. As one of our friends whose wife had a frighteningly fast type of MND said to me after watching the film, "I thought it was brilliant but, oh, how painful it was to be reminded of that journey!"

On Sunday the BBC Songs of Praise team decided to base their programme round the Oscars. They interviewed Jane Hawking in Cambridge and filmed her singing in their church choir conducted by her present husband, Jonathan. She was great, very articulate and clear about her faith. Someone in the BBC had seen my previous post about the film, and thought that an interview with my Jane and me might fit in as an added extra. I suppose the parallels of my having MND like Stephen Hawking and our both having wives/carers named Jane worked nicely. So nine days previously, before we went on a short break, the film crew arrived with the presenter, Claire McCollum - loved her Ulster accent! - , and all their equipment. They certainly knew what they were up to. While Nick, the cameraman, Lindsey, the researcher, and Karen, the producer, worked away at setting up the equipment, removing the ticking clock (!), and arranging the shots, we relaxed and chatted to Claire. I suppose the actual filming took under an hour, mostly in one take - for which I was grateful as it's never easy to repeat exactly what you said (unless you're an actor, I suppose).

Anyway they soon packed up and zoomed back off to Media City in Salford, and next day we went off for a break in Devon. I put Songs of Praise on to record - of course. But we were actually able to watch it live, but it wasn't until half way through the programme that we were sure we'd appear. In what was a rather good programme over all, ours was, I think you might say, a cameo performance - being a minute or two long - but I must say I thought Karen had edited all my waffle very skilfully. As I've said elsewhere, there always things you wish you had added. When Claire asked me something about my strong faith sustaining me. My answer was something like, "I'm not so sure about it being 'strong'. Sometimes it feels I'm hanging on by a thread…". That's when I wish I'd said, "But I've discovered that God keeps holding on to me firmly."  However our bit ended positively with Jane talking about hope and then an upbeat contemporary worship song.

Afterwards it was fun following the Facebook comments which dribbled in that evening and the next day. One of the nicest comments, on Twitter, was from Claire McCollum herself:

"Feb 22: @mwenham you and Jane were just brilliant! So glad u enjoyed it. A pleasure to work on this one! Take care. Btw really enjoyjng ur book. C" (Which reminds me, you can get discounted copies of My Donkeybody by contacting me on michaeltwenham@gmail.com!) 

So I'm happy on this occasion both to compliment the BBC for a job well done and to congratulate the Songs of Praise department on a nicely crafted programme. And finally I must say how good the film crew were and of course how lovely Claire the interviewer was!

Vulnerable AND valuable

The headline yesterday was: 

"Care home staff 'abused elderly': six arrests made

A former matron and five nurses who worked for a care home have been arrested over 'serious allegations' of mistreatment and neglect of 'very vulnerable' elderly residents."

You may remember I was writing about the importance of recognising that all, including disabled people, should be treated with respect (Do not resuscitate) and valued as persons. The Telegraph report illustrates the danger of abuse of the vulnerable, even in places where they are meant to be cared for. The nursing home in question specialises in caring for severe Alzheimer's sufferers, who are, in my view, in the front line for abuse - which, at its extreme, includes euthanasia.

"Chief Superintendent Richard Bayly, from Lancaster Constabulary, said the 'serious allegations' involved 'very vulnerable, elderly residents' and regarded 'a significant number of cases'.

"He said: 'These arrests are a culmination of a thorough investigation into serious allegations of mistreatment of residents at Hillcroft Slyne nursing home.

"'The inquiry is complicated and we have a team of specialist detectives working on this case who are also offering support to those families who may have had loved ones identified as being allegedly mistreated.'

"In May, Lancashire County Council's social care department made police aware of a complaint they had received about the level of care provided to some residents at the home."

After my "Do not resuscitate" post, a severely disabled friend wrote to me about her own experience
"I've been ill for most of the time for the last 3 years, and have spent all too much time in hospital.  The last time was in July 2012, and I came across a nurse with a sickly sweet voice, but who bullied me mercilessly.  She knew that if I swallowed tablets by mouth I would retch and/or be sick, but refused to use the canula, which had been put in (with much difficulty) on doctors' orders only the previous day.  She shouted at me, and refused to use the canula.  I became quite afraid of her.  I phoned my carer and he came immediately.  He managed to put her in her place while remaining entirely polite and calm, but it was a very unpleasant experience.  It made me think of the terrible predicament of those who have no one to stand up for them, or who cannot communicate, or are very elderly, perhaps with dementia. It is such a scary situation for all of us."

My friend is a lovely person who struggles with multiple disabling conditions with amazingly good grace. Yet even for her the sense of helplessness faced with insensitive caring was enough to scare her, and clearly not everyone is fortunate enough to have a competent advocate to call on in time of crisis. As a country, we really must heed the warning signs of a trend, despite Paralympic euphoria, of diminishing our regard for the disabled. Just over a month ago, there was great optimism that an irreversible change of attitude had taken place. If we are not vigilant, it will be more than reversed: disabled new borns and vulnerable elderly will be regarded as legitimately disposable. Then we will have entered a morally bankrupt "brave new world".

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)

 

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.

Vale, Maria

If you have a memory for such things, you may remember that in June last year our friends, Jean and John, put on a successful coffee morning in aid of the MNDA just down the road in Grove. It was a lovely sunny morning and a thoroughly cheerful time. I commented here, "As well as friends and neighbours, there were four of us there who had MND at various points of progression, Jean herself, David the herb farmer, Maria the shopper, and me. Three of us were out in the garden, and, yes, we did talk about our frustrations and the lessons we'd learned, but it wasn't a moany sort of conversation. It was companionable, and at times jokey."

David and Jean both died before Christmas. Last Wednesday night, Maria too died. Maria too was a delightful person - a devout Catholic with a sense of humour and hope. It's sad to realise I shan't be seeing her again, this side of the grave. The deaths of these three local friends and Jozanne thousands of miles away bring home to me the speed and harsh reality of the usual MND. I was talking about this recently with my physio and saying how I feel almost guilty to be among the "lucky" few with a very slow form. She gently pointed out the irrationality of the feeling! She also commented on the amazing qualities such as strength that the illness brings out in the family carers. That was certainly true of Eric, Maria's husband, and Camilla, her daughter. One of my other conclusions is that I would now put a "health warning" at the start of My Donkeybody, saying it's an account of PLS, a very gradual form of MND and far from typical, so that readers don't have unrealistic expectations raised for themselves or their relatives. (At the moment it's in the appendix.) So it's vale, Maria - farewell, till we meet again.