Thursday, 15 September 2011

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!

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