Reasons to be cheerful. Part 3

It's a year since I started writing this blog and it feels right to end the year on a positive: Part three of the advantages of MS. At lunch today I was discussing the concept that there is too much "feel good" factor being attached to major illnesses. Too many people writing too many blogs saying "...it was the making of me"..."if it wasn't for the illness"..."I discovered myself for the first time when I was diagnosed"...etc.


I can't pretend to have made such life affirming discoveries. When all is said and done I'd rather not be writing this blog. I can however state that MS has meant that I can walk on hot paths between water slides in Spain with no pain.(Aug 18th) It has meant that I've met some people that I never would have passed the time of day with.(Aug 25th) And finally, continuing my Ian Dury title obsession, we get to "Reasons to be cheerful. Part 3"...London Town.
My monthly trips into a central London hospital have meant that I've discovered the great city all over again...and more. Buying a dodgy jumper at Whitechapel market, a stroll down Commercial Street towards St. Pauls, over the Millennium Bridge to the Tate Modern, strolling down the Thames past Gabriel's Wharf and on to the Southbank, taking in a play at the National. As I walk up to Waterloo I can enjoy the good humoured banter between bus drivers and cyclists.."Get out of the f***ing road you w****r". I can pass an unconscious drunk under the bridge, take the tube up to Piccadilly, discover an obscure gallery before walking up to Oxford Street for some mass Primark shopping. Experiences that remains resolutely London and have nothing to do with illness. Don't wait until you're ill. Whatever your city, whatever your life...go and grab it now.

Rhythm-n-ning

I've been feeling distinctly Thelonius Monk for the last couple of days. All stiff fingered and discordant. I can't play like him of course...It's just a good description of my health. I'd had a few weeks off from numb hands and pliered feet, which makes the return of it all the more unwelcome.

We're remounting a production of A Midsummer Night's Dream for which I wrote an annoyingly difficult piano treatment of Oberon's Take hands with me and rock the ground speech - all syncopated semi-quavers. When I tried to play the thing it was far more syncopated than originally intended and it sounded more of a quiver than a quaver. My fingers were not playing along, mainly I suspected, because my arms and legs weren't.

Me and the eldest child went for a long cycle ride in the hope of exercising my limbs into life. I was admirably impressed with her dedication to exercise when after about 100 yards she said...we must have been going for about 3 miles by now. Shall we get a hot chocolate and go home? That was my kind of exercise. When we got home she decided to practise her flute to which she demanded some piano accompaniment. Tune a day book one flute accompanied by hopelessly syncopated wrong notes. This was beyond Thelonius...this was Stockhausen meets Cage and gets a headache.

Still, I have a few weeks in which to re-discover my inner Monk...but until then here is something Thelonius made earlier...if I could be half as hip as this...


http://www.dailymotion.com/video/xb5v0r_rhythmnning-thelonius-monk-1961_music

There ain't half been some clever bastards

Like a weird sect we converged on Clinical research for a conference on MS for people with MS and their families. It was a research day about research...a re-research. Coffee, iced-buns and colour brochures. They were all there....Prof G, Neuro Bond, Miss Moneypenny, Dr. Hugh Grant, New Nurse...even the man that first thought " I know, Chinese hamsters...bound to help MS". This was like a coming together of all the great minds of Neurology, like an all star Jazz concert...no, this was bigger, this was Live Aid for Neurolgy...NeuroAid featuring the NeuroAllStars. One after the other they flaunted their brains...riff after riff of scientific nuerospeak bought the audience to their feet. "Hello Whitechappel...let me hear you say Oligodendrocytes"

Dr. Miles got the crowd laughing and roaring their approval at his "death is not a good result" routine. Nuero Bond slayed us with his dangers of PML lecture. And then the main man...Prof G, the G man, Super G, G to the max...let us know about the future of clinical trial research into MS. And then it hit me...all these clever bastards are working their collective neurons off to cure people like me. These people invent molecluar sized brains to deliver proton sized anti-inflamatory drugs to specific white blood cells to repair myelin on 180, 000 kms of my axoms. There ain't half been some lucky bastards...me.

Media watch

It's been a busy week in the media, even by MS standards

On Monday we had new oral tablets that will do what the injections do at the moment - Fingolimod and Cladribine Tablets  http://bit.ly/8ILSCT
Unfortunately Fox news reported a big BUT... http://bit.ly/4yRqA3

On Wednesday the Daily Mirror reported on a pioneering operation
"Many ­experts believe MS is caused by a faulty immune system, but a number of ­doctors now believe damage caused to the nervous system in MS is actually from poor blood flow in the chest, neck and head."
http://www.mirror.co.uk/news/top-stories/2010/01/17/have-doctors-found-a-cure-for-ms-115875-21973347/

On Thursday another new tablet (Amprya, generic name dalfampridine formerly known as fampridine SR) promised to do even more:-  http://bit.ly/55yneE 

On Friday, mice, obviously feeling outdone by the hamsters got involved: -
A mutation in a gene called ZFP191 causes central nervous system myelination problems in mice that are similar to what occurs in humans with multiple sclerosis, new research has found.  http://bit.ly/55yneE

By the weekend there was reports that plenty of sunshine will help:- http://bit.ly/6Xsfo2

And on Sunday we all decided to move to New Jersey :-
Trenton: Legal pot, for the sick:   http://bit.ly/7THsuY

8ve

Finally got to the end of the run...opened December 7th - closed Jan 16th - slept Jan 17th.
Everything held out pretty well. Lost my left hand in the last couple of shows. Normally I have a reasonable pianist span (type that one carefully)...about a 10th, in some positions an 11th...nothing like Oscar Peterson's alleged 15th...but no piano I've ever played has complained. But anyway, there I was looking forward to the final bars of act two and getting to the altogether more pleasurable bar front of house when my left hand faltered. When this happens it feels a little bit like someone elses left hand is trying to get out from inside my left hand and they're using an ice pick to do it. Unfortunately this sudden turn of events left me groping for a minor 6th let alone a strident octave. I spent several minutes of one of the "acting scenes" (what's the point eh? Just cut to the songs) trying to coax my fingers to full stretch which the sax player mistook for obscene gesturing at the audience, but to no avail. Then I remebered. Bank C, Preset 156 - Octave Piano. One finger, two notes perfectly spaced. Ha! Technology laughing in the face of MS.

Cat and Hamster

It turns out that I'm not the illest member of our household. There's been a bold attempt to steal my thunder. The cat is ill...She has a thyroid problem which is ironically a potential side effect of my oriental hamster ovary injections....Maybe she's been sneaking into the fridge when we to go to bed and stealing my pre-filled syringes. Can't blame her. Liquid hamsters to go. It must be the cat equivalent of a chinese take-away on tap. She now has little blue pills to combat the thyroid problem (her drugs are more expensive than mine it seems)and everytime she takes one she spends alot of time turning round and round and round whilst lying on the floor, manically chewing her paw. I should swap meds with her...that's roughly what little blue pills did to me on Friday nights in the 90's - except the paw bit obviously.

A right estate

This has nothing to do with MS really...but in the best tradition of the butterfly effect there is always a connection. So last Tuesday the snow came down. It had been fine until rush hour then, when traffic was at its heaviest, the snow from a Phillip Pullman novel fell, and fell and fell. Pretty soon the traffic ground to a halt. By the time the show was due to go up there were far more people stuck on the road outside the theatre than in the auditorium.


By the time the show came down travelling by road was like ice-skating for beginners. That night we nursed our car home and parked up outside our flat as usual...But that night someone, in a car much bigger than ours slid down, across and up the road simultaneously. Playing a human version of pinball they smashed into three cars leaving ours beyond the value of a worthwhile insurance claim. Very thoughtfully they forgot to leave their details.

And that is how we found ourselves on New Year’s Eve sat in a car show room. As bad luck would have it the heating in the show room had broken down and by the time we got to test drive the new (second hand) car I was frozen through. When you have MS it seems to take ten times longer to thaw out. Hands, feet and bum were numb as hell by the time we got in the car. And then I discovered probably the best cure for MS available...forget all these infusions, injections and this stem cell research, abandon DNA manipulated hamsters...just give me a heated driver’s seat in a second hand estate car. I'm quitting the trial and taking an HND in interior car design.