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)

 

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.