Writers block

I'm back. I haven't been anywhere. I merely fell off my blogging bicycle and the longer I left it the more difficult it was to get back on. But the truth is I fell off because I had nothing left to blog...better to say nothing than talk about nothing. Trial world has been a bit dull really. The highlight of November was an exploding blood spinning machine. All was ok until a sudden "BANG" and then my blood was splattered Tarantino like onto the top of the glass roof. A splurge of red. What looked very impressive at high speed spinning, like a Dali-an expression of my illness gradually became a blob as it slowed down. A bit like my attempts at a potters wheel....at high speed it's a vase, then as it slows down it's a bowl, it's an ashtray, it's a shapeless lump of clay. So my blood turned out to be less like a Monet and more akin to a Pollock. That brings me nicely to my Vasectomy. You're right. Too much information. Somethings should remain unblogged...well, unblocked.

let's fly away

I finally finished my 2010 tour schedule with a quick flight to and from Edinburgh before driving down to Wales for the week. My carbon footprint is not good this year. I've flown over 20, 000 miles in person but my blood has blown that away with its monthly journeys totalling up at over 65,000. Bloody Hell. I wonder if I can retrospectively claim airmiles for my blood.

Talking of blood the vampire lady rang me the other day to confirm our monthly blood letting. And then she casually threw in that it would be a longer appointment because the Americans wanted to "check something" so she needed to spin my blood.
Check what?
"Oh, nothing"
How are you going to check nothing?
"It's all quite routine" she said
Well I beg to differ. Routine is what happens every month. Centrafugally spinning my blood for fifteen minutes is not routine. It's occasional. It makes me dizzy at the thought of it. My blood has had quite enough adventure this year with out throwing in personalised fairground rides.

die-caffeinated

It's been a long week
.... down to Whitechappel for the quarterly neuroteaser checks...Made a good start -  only got two questions wrong in the maths marathon addition competition. Put in a good showing in the short corridor sprint, but nowhere near my personal best and the 1/2K walk to Commercial Street has been replaced by an indoor version - the walking machine - not as pleasant but that's scientific progress for you. Leg tickling and pushing me over when my eyes are shut and I'm standing on one leg all went according to plan. I do love it at clinical research. It's like a surreal day out in a 60's Doctor About The House film. NeuroBond thinks my lax right leg is not a sign of exacerbations but a continuation of March's relapse which is comforting (I'm not imagining it) and annoying (6 months is surely enough lapsing). The rest of my time is spent waiting for Moneypenny to extract enough blood to satisfy the American pharmacutical company's vampirical lust.

Sitting and waiting is the perfect time to log on (it's a Wifi hospital) and catch up on e-mails. There's one from the blog marketing company who aren't making it easy for me to earn the full meal and west end show experience. The last two "job opportunities" have been for funeral services and a coffee shop in Vancouver. Even with my lateral sense of thinking and even after a bottle of red wine I can't make my blog meander through the subjects of death and coffee drinking in Canada (they also offer a selection of panini's and wraps if you're in the area) whilst living in London. But, with $12 at stake....

"I'm dying for a coffee....thought I'd try this new place in Vancouver...6,000 mile round trip taking three days but boy the coffee was worth it...on the downside all that coffee, travel and jetlag has given me hypertension...a great incentive to plan for my funeral...."

bum

My poor old legs have had enough of injections. They've got the needle. Or more acurately too much needle. Injection fatigue. They've had enough of feeling a prick. Two red blotches have grown wider and redder. My hither too manly hairy thighs have gradually taken on the look of a well waxed male model. Only it's not the look for a middled aged balding man with a beer belly...and certainly not just one large bald circle on either thigh. The bald circles, alas, mirror my head - where I've never injected incedently - and now I'm beginning to feel a percecution that entails every limb collecting a bald patch. Three down, two to go...is the head a limb? Anyway, Neurobond, who was on particularly good form at our recent Neuroteaser session says I should try my bum....actually he said buttock, but bum feels less scientific...so I'm no longer a leg man. Me? I'm a bum man.

up on the roof

Such is the popularity and quality of this blog that I was contacted by a digital marketing company who offered me money to write the blog. It was all very simple and went something like this....They would match companies seeking blogs on their subject matter to my blog. So if Asda were hoping to increase interest in their new range of health insurance this comapny would let me know, I would include discussion of health insurance in my next posting, mention that Asda were great, Asda would pay the company and the company would pay me. Mine being a health blog meant I would be matched to companies interested in health issues. Easy. How much was the big question? How much? $6 a post was the life changing answer. But hell - despite the disingenuous nature of covertly using my real life blog to advertise products for my own financial reward - 52 posts a year at $6 a post would pay for a romantic meal and a West End show for me and the wife. Happy days.


The difficulty of having MS, I find is when you want to use interlocking roofing tiles. I guess it’s the numbess in my fingers that mean my choice of interlocking roofing tiles is a new company called Avernex. It’s reassuring to know that when I’m replacing the roof I can easily interlock the roof tiles and get off the roof quickly before I suffer a relapse or a dizzy spell. So if you’re suffering a long term illness and thinking of replacing your roof I suggest you consider interlocking roofing tiles. They really do interlock and go on the roof.

That’s a prawn cocktail in the bag.

no flies on me

The advantages of having MS just seem to expand all the time. Once again the hot Mediterranean country of Spain has shown the way forward. Not this time the joys of walking unhindered down red hot asphalt paths without feeling the burning sensation in my feet. (see post 18/08/2009) This was far more practical and handy. Flies. Yes, flies. It happened when we went to visit friends in Marbella. We took the coast road down from our regular haunt of Nerja down to the luxury resort arriving in time for a splendid bar-b-q and a large, thirst quenching cocktail. Bliss. "If it wasn't for those pesky flies" said everyone as they swatted the damn things every time they landed. Everyone except me. What flies? "The two walking up your right leg for a start". Sorry, my right legs an authentic registered spastic and does not recognise, feel or notice insects alighting on it. So there we have it. Spain is where MS sufferers should move to and enjoy the freedom of walking bare foot on hot roads and the pleasure of bar-b-q's without the annoyance of flies bothering you.

Still singing

Well shout it from the roof tops or whisper it quietly  - I feel good and have been for several days...this weird disease has dissappeared for a while...and while the cats away the hamster has fun...but should I  be shouting or whispering?....shouting feels like it will invite a problem...I always worry about this...you see, down at Tottenham, when we take the lead against another  team we start singing very loudly....”you’re not singing, you’re not singing, you’re not singing anymore” followed by “you’re shit , and you know you are”. Now I know that at some point later that afternoon 5000 away fans are going to enjoy rubbing our faces in that...so is it better to stay schtum and avoid the humiliation of reverse baracking or enjoy your moment in the sun?....Well in this case I’m reasonably sure that no one is going to revel in screaming “MS is back, and you know it is”....So whisper it loudly is today’s maxim....”I’m ok and you know I am”

Spaz and Edss

There is something in the MS trial world called “expanded disability status scale”. Edss for short (as though you have a lisp and a friend called Ed). In the world of EDSS a zero is absolutely fine, A OK, top of the world. The scale gets progressively worse until ten . You don’t wanna be a ten. Ten is dead. When the missing blinded assesor reappeared after his absence we set about testing my EDSS. We walked on the walking machine, we stabbed sharp and blunt instruments into my limbs and we generally scraped soles and banged knees with hammers, tuning forks and the like until he had a score.

Now, growing up in the 70’s, a world away from the political correctness of now we had an all purpose insult in the playground....spas, spaccy, spazoid, spastic. It covered all the ground from “Hey, spas pass the ball” to “Spaccy, give us a lug on your fag” and of course “Carey is a total spastic”. Now I know that’s deeply unkind but it didn’t seem so to 13 year old boys in 1977. A spastic was just a plastic boy with a gammy leg outside a charity shop. Besides, you couldn’t catch spastic, you couldn’t become a spastic. Now I know different. Blinded assesor tells me i have “significant spacicity” in my right leg. Are you telling me my right leg is spastic? Well he tells me I’m going to have to put you down as a one. So there we have it. I’ve still got nine lives left and Carey may not be a total spastic. But his right leg’s giving it a good go.

Pear Shaped

The highly efficient service that has characterised life in Clinical Research came spectacularly off the rails today. My 15 month appointment was set for 8am (that is apparently a legitimate time in the morning). To be at Clinical Research for 8am means leaving North London at 7am which requires getting up at 6am (in my books that is not a legitimate time. It's a bastard of a time). Then it turns out that the blinded assessing doctor who is due to make me hop, skip and jump before enquiring about my sex life is stuck in Colchester. Colchester is a Roman town. It's a straight road to London and he's very fond of making me prove I can walk in a straight line. But not today he isn't. Everyone is suitably embarrassed. NeuroBond can save the day. He is my unblinded doctor for the day. Due at 9am. Then it turns out NeuroBond 'doesn't like mornings'. So he'll be late. An hour late. What's going on? No blinded doctors, no sighted doctors. Even Moneypenny is missing. New nurse is offering me coffees and teas (probably an attempt to get me to wee in the sample jar). But it won't wear with me. She takes my blood, and eventually the piss before checking my blood pressure. It is apparently 'quite high'. Deep breath. Calm.

Fab 1

Sunday saw us hot footing it down to Hyde Park for 'Hard Rock Calling'...50,000 people (including me and Fi)...and some bloke called Paul McCartney. It was hot...hot beyond belief...the afternoon started with Elvis Costello. Unfortunately for Elvis he had to compete with England v Germany which in the wisdom of the organisers was shown on the big screen while Elvis worked his socks off....Now I've performed to many a disinterested audience...but none have roared with excitement in the middle of one of my biggest hits because England have scored...fortunately I've never had a biggest hit and fortunately for Elvis England only scored once.

Crowded House had the unenviable task of lifting the 20, 000 crowd who were now collectively 4 - 1 down and fed up. But let’s be honest - sun, beer and always take the weather is such a winning combination that Footie suddenly seems like a pointless kick about between 22 overpaid teenagers. (I'm not bitter about England crashing out of course)
Crosby Stills and Nash looked like we expected...but bless 'em, they sounded like heaven (bearing in mind we had consumed large quantities of beer by now - all in the name of staying cool and hydrated...yeah I know)
Then the man came on. The big Macca. Well if I had a back catalogue that included most of the 60's and 70's greatest hits I'd be confident...besides I've always been a Lennon and Harrison man...I mean they never wrote the Frog song....but eat my hat, sit on my hands, consume large quantities humble pie...he rocked, he rolled, he blew 20, 000 people away. He sang with a band, he sang on his own, he delivered hit after hit after hit after....after all, he was one of the f'ing Beatles...

Cats and Dogs

It rained cats and dogs on us when we arrived on the English Riviera, as it's called.  I'm sure when the sun shines it is like an English Riviera. When it's raining cats and dogs it just looks like the usual English seaside town...grey and dull. I should know - I was born in one. After we travelled to the English Riviera we travelled to Birmingham which is supposed to look grey and miserable but then the sun came out and cheered us up immensely. I should point out that I'm on tour again. Have mixing desk, Apple and needles - will travel. It seems odd that a year ago travelling with needles and injecting in dressing rooms and strange hotel rooms seemed worthy of concern. Perhaps it's a sign perhaps of how quickly we adapt to things. What once seemed new and intimidating is now second nature....Sling the meds in a bag and off we go. I travel alot all things considered...something which surprises people. Is that a good idea they will say....with your condition. I think it's a brilliant idea. I have two young children at home who fight like cats and dogs.

Light and Heavy

Dizzyness has continued on and off...there is something very disconcerting about waking up dizzy...inevitably Vic Reeves gets stuck in my head which makes a change from Bruce Springsteen but when all said and done I'd probably prefer the boss with his wooohoho I'm on fire sensation to feeling like I've fallen over in a drunken heap at 8 in the morning. I checked in with the GP (it's never the same GP twice) who on reading I was on a trial for MS drugs and that I was feeling light headed asked if the marijuana was helping the MS. Chance would be a fine thing. When I explained that it was just chinese hamsters via thrice weekly injection he seemed to lose all interest...Oh well, I shall stick with Vic Reeves until the good folk at clinical research can check me out at the end of the month...

On a lighter note we spent the weekend doing exactly what I shouldn't do...overdoing it. The family all went down to Greenwich for the Jazz and Beer festival. There wasn't much jazz but the beer made up for it. In fact the Brand New Heavies headlined and the girls insited on being up the front, leaning on the barriers. Security man - who Fiona said looked like Bruce Willis - was on hand to reassure us that if the crush got too much and we started to feel light headed...well that was all I needed, being manhandled over the barriers by John McCain having fainted at a 90's revival gig. It's hard bloody work this MS.

nothing

For the second week running I have nothing to say of any real importance, interest or relevance...so I could make up some spurious MS related stuff or I could say nowt...having said that I did have a new and slightly odd sensation that may have been nothing to do with MS.....I have had several episodes of what I can only describe as  light headed moments...as in...oh, I think I’m going to fall over...two of these ocurred whilst lying down in bed which certainly added a perplexing edge to the falling over feeling...it’s difficult even for me to fall over whilst lying down...but my usually unreliale balance is at these moments of light headedness completely and utterly abandoned...it’s the sort of thing I’d normally put down to vino rouge but as it occured without the use of vino rouge and continued to occur without such help, I guess it’s not wine or football related...which brings me neatly back to my opening statement that nothing of importance, interest or relevance has occured...

When Saturday Comes

I had to hold off writing this from my usual Sunday to the less popular Tuesday...here's why...Monday afternoon was my big chance, my big shout for a career as a pro footballer...I lie, I've always been rubbish at kicking anything except the cat who is so old she can't remember where her food tray is...but, through serendipity of job I was given the chance for a "kick-a-bout" on the hallowed turf of the great Tottenham Hotspurs. We've followed the Spurs in our family since my Father's father's father lived round the corner from the ground. My brother flirted briefly with West Ham we've forgiven him this peccadillo and generally stayed loyal to the lilywhites. And now this was my chance to come down from my seat in the stands and run on the pitch...maybe score a hatrick, glide gracefully over the right wing, shuffle a couple of dummies, deliver a defence slitting pass...I mean how difficult can it be?

We got changed in the first team changing room...given our kit like proper footballers...shin pads and everything and then we were out through the tunnel and on to the pitch to the deafening roar of silence. This was my moment. 4 teams playing a round robin tournament of 20 minute games which meant three lots of 20 minute games...how hard can that be?

It was the first three minutes that threw me...it's a sodding long way over the sods of White Hart Lane...really, it's miles...by the time I'd run over to the wing where I was starting I was out of breath. The manager spotted this and put me in goal for a bit...it was a half a mile run from the half way line to the goal. It's much closer on tele...then it turns out the goal is huge and I have to "cover the ground"...well sorry to the earnest defender who was taking it dead seriously..."bring it keeper, bring it, bring it, bring it" to a man who has lost control of his lungs, legs and liver (too much red wine the night before) will always be met with a feeble kick that travels barely 10 feet. We lost. Twice. I can't remember the other result. I was dead.

The day after I was aching more than I've ever ached before..and believe me I've ached...And so I have rung Capello and told him of my retirement from international football thus abandoning my dream of a late call up to South Africa...and I promise I will never again berate a player that runs the length of the pitch only to scuff his shot...When Saturday comes I’m watching.

R and R

Relapsing and Remitting or Rest and Recreation? Quite similar really. Lots of recreation during remission and lots of rest in relapse. And that remains both the nightmare and the godsend of this strange thing. Two years after diagnosis I still meet people that say oh, I hear you're ill and then look at the currently healthy me with a slightly suspicious expression. Well, you should have seen me from March 26th to April 2nd is what I want to say but it’s not a terribly convincing response. Not because it ain't so but because when in remission I really do begin to think I'm not ill at all and therefore I subconsciously start to show just how healthy I am. Not that I break in to star jumps and squat thrusts during the conversation but I do find myself telling people just how active I am at the gym, exactly how many minutes I spend on the rowing machine and how heavy the weights are. It's like a sort of health tourettes. I can't help it. I burned 400 calories during a spin class just pops out.

And that was my mood when I was requested to attend Clinical research for an "out of hours meeting". On my return from Africa last month I had felt obliged to tell them about my lack of legs in March and I was pretty sure I'd be in trouble with them. Mainly because the paperwork I signed at the beginning of the trial specifically says that when experiencing symptoms of relapse I should contact them...but...and this was my argument, it doesn't say anywhere that I shouldn't fly to Sub-Saharan Africa before telling them. I followed this line of argument with a detailed list of star jumps and squat thrusts undertaken and then my final coup d'gras...35 kilos.

Something about the way they laughed, shook their heads and sent me to the toilet with a jar didn't convince me I'd won the argument.

Ashes to Ashes

So the ash cloud from Iceland threatened to derail (surely deplane) my travel plans. By Tuesday night I should have finished a show at the Hard Rock Cafe in London and headed for a hotel in Heathrow ready for an early morning flight to Moscow. But at 8pm my flight was cancelled and British airspace was closed for the foreseeable future. At some point that evening I suspect a large amount of money changed hands because by 11pm British airspace was miraculously open and I was once again heading back to Moscow.

I landed at 9pm and by midnight I was back in the comfort zone that is Hotel Ermitage. Hotel Ermitage is Fawlty Towers transposed from Torquay to Moscow. The staff are so pissed off to see customers it becomes a sport to see..
a) How long it takes to make a member of staff smile
b) How many members of staff you can make smile in a 12 hour period
Of course the answer to a) normally exceeds the limit of b)

Naturally there are no lifts to the fourth floor which is where I am always placed...infact I have been placed in room 412 on four out of five visits. Floor 2 seems to be mysterious floor, accessible only through a large oak door, from behind which emanates the sound of muffled Euro-house music. One gets the distinct impression that the rest of the hotel is engaged in some extravagant party to which everyone except floor four is invited.
Well me and my colleague bucked the trend and started a floor four party on Thursday, leading to impossibly heavy drinking, wild music, games of Russian charades and games of Russian roulette involving Chili-Vodka. All of which in turn led to forgetting all about injections...I suspect this is the only connection (and tenuous at that) to MS and the reason for this blog. I apologise but when you’re having this much fun...

Breakthrough

Back in the drizzle of the UK and everything seems a little pale and colourless against the multi-coloured visceral thrill of Africa. My MS symptoms which caused my first outing with a walking stick have now been upgraded to a relapse by the good folks of clinical research. What's more, because I'm on drugs this is called a breakthrough relapse. The moment I learnt that I've been stuck with the Doors in my head....break on through to the other side...Now Jim Morrison never let anything break through his drugs.

Talking of breaking through, my intrepid brother has been busy breaking though the pain barrier in search of extra funds for MS. This morning he ran the Brighton marathon. If you wish to donate you can via...
www.justgiving.com/seemed-like-a-good-idea-at-the-time
And finally this week promises to be a new kind of breakthrough for me...If Icelandic volcanic ash can be persuaded to abate and allow some flying then I shall get a kind of Phil Collins type experience. Following two shows at London's Hard Rock on Monday and Tuesday I will hot foot it across to Russia to play keyboards in a show in Moscow on Wednesday.

 

Pictures of Malawi

When everything is this beautiful, joyous, sad, uplifting, mad, inspiring and memorable it's difficult to write about illness...

Malawi

Well, what a long time a week can be. Last Friday it was that I woke up and found my right leg unable to support my weight. Getting up the stairs required huge effort. In 72 hours I was flying to Malawi. Not a good time to lose mobility. Things went down hill during the day. For the first time people at work started saying are you alright, you’re limping? By Saturday the dull, nagging numbness that consumed my right leg had started to move to the left. Things got so bad I was forced to go out and buy a walking stick. Things improved a bit and I managed the last show on Saturday night and crossed my fingers for the next day.

Sunday was a marginal improvement again. Enough to encourage me that I could manage to get to Malawi. I could see in Fi’s eyes that she thought I was deranged for even trying it but I’d already packed and now I had a stick anything was possible. We got to the airport. While I lent on the check-in desk the kids took it in turns to limp up and down the airport with my stick. You could see the other passengers looking at us with sympathy...a whole family of limping English people for god’s sake. ..

And then all too soon I was on my own boarding a plane bound for Nairobi. Me, hand luggage and the stick. During the flight I found that my right leg was gaining in feeling but crossing my left leg could only be achieved by manually lifting it over the right. I dozed fitfully for the 8 hour duration. I was no better at Nairobi but the luggage was transferred automatically for the Lilongwe flight so I just had to limp and lean with the hand luggage. The four hours to Lilongwe (the second quietest airport in the world) via Harare was entirely slept. Which left me with a four hour wait for the final flight to Blantyre (the quietest airport in the world). I sat with my leg up and sipped a beer or was it two, could have been three, until I was called to board the Malawi Air flight. I made my way towards the boarding gate. Suddenly from behind me came a commotion.... Sir! Sir! Sir! Please wait... the bar man caught up with me just in time....here, you forgot this...and he handed me my stick. Malawi was going to be just fine.

Zikomo.

the writer, the actress, the singer and me

Finally got to meet the other trialists in my group this week. They have been randomised to the Alemtuzamub and until now have just been the voices next door. Last March,  as I sat on my own with my steriods and rebif I could hear them in the room next door, getting dosed up, chatting, laughing. It was their party and I wasn't invited. Well, I'd been invited to sit next door which was worse than not being invited at all. It was like arriving at school on Monday morning and everyone talking about the party they'd been to on Saturday night and you'd known nothing about it. Or maybe that just happened to me. And here it was being replicated 30 years later.

And so I arrived full of indignant intent like it was their fault...I'm cool. I'm good. You're all pals and I'm just the outsider on the cheap gear. Just ignore me. You stick with your posh drugs. Don't share them with me. I'm just fine and dandy.

And then they ruined it. They were all really friendly. Open. Chatty. Even the writer who said she was  a bitch wasn't at all. After a few hours I knew more about them than I know about people I've known for ages. Everyone a different story. Every experience listened to. Every answer respected. Stories of love lost and stories of love found. It was beautiful and I'm welling up now.

I have no idea where this has blog gone...don't be ill on your own I suppose. No, be ill with interesting people. That's the answer. Maybe I should start an ill-friend finder website. Find your perfect ill partners.

The art of Poo

It's a big week in MS world. The trial has been running for a whole year so I'm back to Whitechapel for an infusion top up and some comedy tests and then on Sunday I take the plunge and fly to Malawi via most of Africa it seems (it's a budget flight so I have three stop overs). Regular readers will know of my fear of flying so four flights to and four flights back should pretty much cure me of that. A sort of cold turkey for aerophobics (I looked it up on Wikipedia)

First things first though, I have three mornings of cannulas being inserted and then a couple of hours of steroids and anti-histamines flushed through me. The people on the new drug need this to counteract the side effects of the new drug. I have to have it to prove that the people on the new drugs haven't been made better by the drugs administered to counteract the side effects of the new drug which I haven't been given. I've got the old drugs. They don't need extra drugs to counteract side effects. But I get the extras anyway. In trial world we call that pulling the short cannula. Although whichever cannula you pull it seems far too long to go in a vein.
It seemed sensible to spend the day before this taking in some art and courtesy of arty bruv Paul we whipped round the Chris Ofili exhibition at Tate Britain. This was the perfect bridge between a trial for an illness that make you feel shit and travelling to Africa; modern art with elephant crap stuck to it. As elephant poo art goes it’s definitely the best I’ve seen.
See you in Malawi.

The sound of science

An MRI scan is a bit like an avocado really, well, much more expensive - hundreds of pounds for an MRI against avocados at 3 for a pound in the Turkish supermarket down the road, but they are both an acquired taste. And once acquired they are a bit addictive.

There's something very Stanley Kubrick about the metal cage fitting over your head to hold it in place and then being rolled into a metal cylinder only slightly bigger than you. In fact, being a decaying London hospital it's got a uniquely 70's Sci-fi feel to it. Holding a panic button in one hand whilst staring at the upside down mirror lets you see your potential saviour in the control room. They take on an other worldly context. You presume they're discussing matters of great science or at the least the progress of your scan, but in the back of your head you know full well they're talking about last nights Eastenders.

But it's the sound that I love. The clunking, the whirring, the booming bass synth noise. I can spend hours trying to work out the time signature of this ever evolving magnet symphony. Which is useful 'cos it takes hours to scan the brain to the googleplexsmillimetre. Steve Reich wrote some of my favourite music with his 'phases' series. 'MRI phase' is going to be my next project. A piece for three MRI machines slightly out of phase. I'm off down the Turkish supermarket to see if they've got an offer on.

In the footsteps of Madonna

Finally some excitement in trial world, something to challenge the trialists of Whitechapel. I've been invited to travel to Malawi to work on a music and theatre project with a company called Nanzikambe. Can I go? This will cause some scratching of heads...there's inoculations to consider - Hep A, Hep B, Hip-Hop, Typhoid, Typhus, Typhoo...Then there's malaria tablets...and it's a Chloraquine resistant area so requires Malarone. What's more there are long haul flights in pressurised cabins leaving me in a rabies present environment. And my tetanus is out of date...How will my Rebif travel...24 hours in planes, trains and automobiles...this will get them thinking. I sent off my e-mail laying out my travel plans. Twenty minutes later there was a reassuring ping in my inbox.


No problem. Have a good trip.

So that's it then. March 28th 8pm. Heathrow Terminal 1. Kenya Airways calling at Nairobi, Harare and Lilongwe. I shall try not to come back with an orphan.

I wear it well

Spent this week in Moscow. My favourite MS city. Freezing outside. Boiling inside. We did a workshop in a school one morning and the heating was up so high I wanted to go out and buy some shorts. Alas I was stuck in thermal long-johns and jeans ready for the snow drifts outside. My mother had sent me some thermal gloves she found in a catologue. They turned out to be fingerless wet suits for hands. The fingerless element didn’t work to be honest. Warm palms and freezing fingertips. I had to go and buy some ordinary gloves to cover the thermal fingerless ones. This resulted in really hot palms and fingertips at the perfect temperature. Maybe if I cut holes in the ordinary glove palms I could create the perfect Multiple Sclerosis twin layered all weather thermal gloves. I could market them in MS monthly. Hats are the other neccesity in Moscow. Fiona bought me a giant wooly beany, far too big and far too wooly. It was perfect.

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.