This Humpty Dumpty life

We had one of those excellent lunches which occasionally happen on Tuesday. It was with our friends, Peter and Ann. Peter, like me, has PLS. Like me, he was a teacher. He seems to have an endless supply of jokes - which is good medicine. We met in the coffee-shop at Bicester Garden Centre (not up to Cornerstone in Grove, of course, but not at all bad).

We had a merry time comparing notes.We have very similar stories, we realised, although Peter was diagnosed about 5 years before me and has only just stopped driving. He tells me 1 in 5 million have PLS. We certainly agree that our wives are 1 in 5M! He and Ann had a lovely way of describing PLS - which was something like "Not an end of life, but a change of life."

Peter, like his namesake, has a lot more physical courage than me - and so he's had a lot more falls. And he seems to bounce better. Whereas I go rigid when I fall, I think he has mastered the art of relaxing, which, as horseriders know, makes all the difference.

Last week I had an email from my friend in New York who has ALS (as they call MND). She lives in an apartment on her own - and of course there's no free National Health Service in the States. Her rollator (zimmer on wheels) was faulty. So she rang the ALSA repair man, but he failed to return her call. "I was ironically going to my desk to call ALS to see if someone else could set up the exchange, and the rollator was in front of desk - I'd been using it as a tray around my apt..... I'd sat on it before just to see what that's like. I decided to sit on it to make phonecall... and down I go!
"Hit my butt, arm and then my head went back to the wall, a part where two sides come to a point! Shocked and alone, I put my hand to my head, and all blood..., then sat on my bed thinking I could just put some vaseline on it and no biggie, but, exploring the wound, I knew it meant stitches, small but deep.... All day in the ER, CT scan and waiting for neurosurgery to attend!  Actually treatment just two staples, five minutes, and they discharged me OK...." She ended with a three-day stonking headache, and of course the worry over medical insurance - as well as a useless rollator.

Peter told me that one year he fell 255 times. I don't think he was joking.... I imagine it was when he could pick himself up. Otherwise the paramedics would have had him on their blacklist! However, such are the hazards of MND/ALS. As my friend aptly puts it, this Humpty Dumpty life. By the way, apart from stiffness first thing, my back is pretty much as it was. Thanks for your concern.

And also, by the way, my remarkable and courageous friend and fellow-author, Jozanne Moss, celebrated her birthday on Monday - what an achievement!

An afternoon with friends

On Wednesday afternoon the local MND Association branch visited Aston Pottery for a demonstration and then for tea. These are really good afternoons when those of us with MND and friends and families spend time together.

Watching the demonstration

Although it was windy, the rain held off and from time to time the sun came out. Aston Pottery is near Witney and produces its unique brand of tableware, and also has an Aladdin's cave of a gift shop and a big beautiful café. The 18 of us started with the pottery (I believe it's technically known as slipware) demonstration given by Marian, one of the potters. She showed us the processes from pouring to completion - well, not all of them, I seem to remember that there are 27 separate processes in all, taking over two days. She was, I must say, an excellent teacher - well organised, expert and enthusiastic about her subject. I certainly ended with a great appreciation for the skill of the potters and decorators and the vision behind the whole enterprise.

Marian at work

It's amazing how split-second some of the timings need to be: for example, too short and the teapot handle is hollow, too long and the spout is solid. And there's no mass-production here. It all depends on the human factor. I was especially impressed by the glazing process, which is dipping the article into a suspension of four minerals for a few seconds. As it dries the design is completely covered in the creamy deposit. Only after the final firing at 1100+˚C does the deposited suspension melt into a micro-layer of glass.

After the wonders of potting, we proceeded to the joys of eating some of the locally made cakes and having tea from, of course, Aston pottery.

This is always the best part of such afternoons, when you sit and talk (or just smile) with your friends, and enjoy what you might call fellowship. In one way it's tinged with sadness, as you're aware of friends who have died since we began going. But there's also that great optimism and humour which is oddly a mark of the Association members. Anyway the slabs of cake were vast - and delicious.

Anne and Rachael facing us, with the Durkins

In the café

I forgot to mention that I'd been to the MND Clinic in Oxford on Monday morning, to see my new consultant, Kevin Talbot. There I'd been greeted by Anne, the Association visitor, and then was seen by Rachael Marsden, the clinic coordinator, who gave me a peak-flow

breath test and a quick interview, before I went in to see Professor Talbot. He agreed with Dr Donaghy's diagnosis of PLS (where the upper motor neurones are affected). He had a student there, which was interesting as he explained my symptoms to her. It's an excellent set-up.

It was nice seeing Anne and Rachael again at Aston on Wednesday afternoon. It feels like integrated care.