Chameleon and all that jazz

One of the stranger side-effects (if it could be called that) of my Deep Brain Stimulation Surgery, along with the chemical imbalances that characterise the workings of my brain, is that I have lost all interest in music. Listening to it and playing it. It is odd and very sad.

I have stacks of CDs and LPs I don’t play, while I haven’t picked up a guitar for the best part of 3 years.

Go figure.

Anyway, a long time ago before all this Parkinson’s nonsense I realised, albeit briefly, a musical dream. And of all places, it happened at the last school I taught in. The Head of Music announced one staff meeting that Out-reach performers under the radio station Jazz FM 102.2 were coming in to do some workshops and an evening concert. Jazz FM was the official and legitimate manifestation of my favourite pirate radio of the ’80s, JFM. It was a station that encompassed Blues, R&B, Soul, Gospel as well as Jazz. You could tune in and hear music from the likes of Gil Scott Heron, Eddie Harris, Quincy Jones, Thelonious Monk and the SOS Band. All on the same show. (It still exists, although a pale shadow of its former self as ‘Smooth Radio’.)

I’ve always loved Jazz, but never had the technical competence to feel confident playing it.

Dave O’Higgins

But my ears pricked up at the announcement and as luck would have it I was free on the afternoon of their visit and was  therfore able to join in the workshops. And what a treat! We worked with members of the Dave O’ Higgins quartet (O’Higgins – sax, Adrian York – keyboard, Andy Hamill – bass and Winston Clifford – drums) The students were split into to two groups, each concentrating on one piece each, in order to perform it in front of an invited audience that night, I muddled in with one of the bands. To my delight, for our group they chose ‘Chameleon’ a funky number from Herbie Hancock’s album ‘Headhunters’. I was happy as a pig in you know what…

I used a 1973 butterscotch Fender Precision to play the bass line rather than the synth of the original. We worked on it all afternoon. All the players getting the hang of improvising; choosing their ‘jumping off point’ and then negotiating their way back into the tune. The quartet were seasoned musicians and hard taskmasters. I don’t read music (to paraphrase Clyde Stubblefield one time drummer with James Brown ‘All those lttle squiggles made no sense to me they just look like Chinese writing’) so I found it hard going, but I loved every bit of it.

When it came to the evening performance, I felt as through I’d  had a bucket of frogs tipped down the inside ofmy shirt. I had to kick off the tune off before the drums come in. Still, in spite of the white knuckles and sweaty palms I made it through without any major cock ups. Or should that be Hancock ups?

‘Chameleon’ Herbie Hancock

And so ended my brief career as a Jazz musician. By the way, did you know Chameleons have the most distinctive eyes of any reptile. The upper and lower eyelids are joined, with only a pinhole large enough for the pupil to see through. Each eye can pivot and focus independently, allowing the chameleon to observe two different objects simultaneously. This gives them a full 360-degree arc of vision around their bodies.

Neither did I.

© Andy Daly 2015


Egg Allergy or Intolerance? It could be a matter of Life or Death

Until he was 5, our youngest son had a serious allergy to Egg. Thankfully, by the time he took the ‘Egg Challenge’ he had outgrown it. This is where in hospital, the patient is given ever-increasing amounts of the allergen under careful observation to see if at what point, and how badly they react – if they do. The most dangerous situation is when after contact with substance concerned, the body’s auto immune system starts to go badly wrong, resulting in massive and if left untreated, fatal reaction known a ‘Anaphylaxis’ or ‘Anaphylactic Shock’

As far as allergens are concerned One of the most deadly culprits is, as I am sure you know, peanuts. (Personally, I never found Shultz’s cartoon capers involving Charlie Brown and gang all that offensive; but I digress and this is no laughing matter.)

Our son’s first attack, just prior to his first birthday was sufficiently bad to warrant a ‘white knuckle ride’ to the nearest hospital and after he had been treated, prompt one of the A & E medics to  take us to one side and say “We managed today – but next time it’ll be much worse. You need to carry adrenaline, in the form of an Epipen. The Epipen, a simple auto-injector,  if administered in time, gives the patient a measured emergency dose in the form of epinephrine, which buys between 15 and 20 minutes.

Well finally we get one from the GP, despite what seemed, if not reluctance, then the impression we were being over-cautious. That summer, we are on holiday in Spain when it dawns on us. We are staying about twenty minutes drive – if you’re lucky and there’s no traffic or surly Guardia Civil in sight – from the city of Valencia. Clearly, it meant that the 15 minutes of time the Epipen buys you would be insufficient, were we to have a crisis or a suspected reaction, God forbid, anywhere outside the immediate city centre. It wouldn’t be enough to cover the driving time to ‘La Fe’ the city’s main hospital, never mind the time it would take to get to a car from where contact happened to have taken place.

So when we get back to Blighty, we go to the quacks and explain we want another one:

“You want another one?..Why?”

“Why…. Why? So we can fucking go and sell it down Wembley Market you muppet! Why do you think?”

This was 1995/6 or thereabouts. It’s hard to believe that people – including some health care professionals I have to say, were so ignorant of the dangers of severe alleregic reactions.  People confused allergy, in which, the body’s immune system is activated and in its worst cases, is life threatening; with intolerance, where the body reacts to substances it can’t process: usually because of deficiency or lack of certain enzymes. Which is unpleasant, no doubt, but rarely puts sufferers at risk.

We made a point of joining organisations and groups, to find out as much as we could about it. I was fascinated by a presentation given at Northwick Park Hospital (It must have been good if it managed to hold my attention for more than an hour in one of the most dismal places in Christendom) by Gideon Lack , Professor of Paediatric Allergy, King’s College London. He told how he belived that people are sensitised to allergens via broken or damaged skin. This insight came about through his treatment of a young girl with chronic ezcema which seemed to resist all attempts to ease it, as well as a severe allergy to latex: which defied explanation. He asked the parents to let him admit the girl and agree to being observed while they appplied her creams and emollients. Father was a dentist. When time came for his turn to cream the girl the first thing he did was put on a pair of (latex) protective gloves. Obviously, anxious to reduce the risk of causing infection to his daughter’s damaged skin, he was unwittingly, making it much worse.

And why the sudden rise of the evil peanut to status of ‘Public Enemy No: 1’? It was never like that before? I believe that in the last 20 years or so the number of sufferers from allergy to peanuts has doubled to (currently for children) one in every seventy. And how? Infantile eczema is very often the precursor. What do you do when you have dry, itchy, cracked skin? You put creams on it. What are the creams derived from? I’ll leave you to work the rest out for yourselves*

I think things are better now. Generally, people are more aware. My wife was tireless in her fight to educate people; far more alert to dangers than I was. Constantly vigilant. But you had to be. For instance, did you know that the MMR vaccine was grown in on an egg culture? Okay, maybe a remote possibilty of causing a reaction. But you don’t take that risk with somebody’s life! The number of times we got a: Well, a ‘bit’ won’t do him any harm will it?’  response in cafes, restaurants, pubs and so on.

‘Errr … Yes it will. That’s precisely the point. That little ‘bit’ could be the ‘bit’ that fucking kills him, you moron’

So here we go. Here’s an example: yes, I know this is the bit you’ve been waiting for – The Rant

(In a cafe, with the kids and a couple of their friends. They are all over the table. Everyone’s starving. Bloody nightmare. Oh no! Along comes the catering industry’s equivalent to Dappy from N-Dubz. It’s the dopey work-experience waiter)

“Can I help You?”

Hmmmmm. I think the jury are still out on that. Anyway, we bung in the order leaving no.2 son till the end.

” Now, he would like the sausages, but he has a serious allergy to egg. Do they contain any egg? ”

“Nah.They don’t have egg in ’em, you get that when you order a full English breakfast, innit”

Oh dear. It was going to a long lunchtime.

“No. What I mean is have they got egg as part of their ingredients?”

“Oh I see. I don’t thinnnnnnk so….”

He screws up his eyes and draws the menu closer to his face; as if the answer to my question is printed somewhere on it in teeny tiny writing.

“Nah. They’ll be OK”

Biting my lip and feel a twitching along the knife edge of my right hand and foot that suggests sudden and violent contact with the neck and solar plexus of the spotty retard before me.

“Yeah, you see the problem is I’m not talking about a food intolerance, I am talking about a serious food allergy, we need to categorically know (which is quite different to guess) whether or not egg has been used in the process of making the sausages – otherwise he can’t have them”

“I’ll go and ask chef”

“What a good idea…”

As he trundles off, I notice he is wearing a “How Can I Be Of Help Today?” badge. (You can be of help to me by taking a walk out that fucking door and under the nearest bus, I find myself thinking)

(5 mins later)

“He can’t find the box they were in. Y’know it’s like a big catering pack they come in. The chef dunno anything they’ve got in them … well except meat of course …. I think …. Anyway, he is pretty sure they haven’t.

(Losing patience…But still managing to come across as jovial, friendly and even-tempered: teacher training you see)

“Alright. What about the Steak and Kidney pie then?”

OKAY! One Steak and Kidney Pie comin’ up”

“No, I mean before we order we need to know if it has any egg in it?

“I shouldn’t think so…I mean what would you put an egg in a Steak and Kidney pie for?”

“I Fu……….C’mon kids let’s go to Starbucks…”

… Later that evening, I follow Spotty Retard to the “Warner Village” cinema complex where he goes to watch ‘American Pie meets Haloween’. I sit behind him and slit his throat as he noisily and greedily shovel handfuls of a 24 litre bucket of popcorn into his mouth.

See? Understanding the difference between allergy and Food intolerance really could be a matter of life and death.


* I refer here, of course to shop-bought creams and emollients, not approved pharmaceutical products


The Anaphylaxis Campaign

Allergy UK

The National Eczema Society


The Learning Early About Peanut Allergy Project

Children’s allergy specialists at Evelina Children’s Hospital, part of Guys and St. Thomas NHS Foundation Trust are conducting the LEAP Study to determine how to best prevent peanut allergy in children.

© Andy Daly  2010



Dub-cutaneous injections: Aswad and the man who….

I have spoken elsewhere about how I’m continually fascinated at how the brain reacts and adapts to the collection of miseries that is Parkinson’s.  Of particular interest and importance in my case is the role that Music plays in my daily life. Not as mere ‘background noise’ but as ‘brainfood.’

I believe that music, something  I consider (and I speak as a Visual Artist) the highest, purest artform engages in a subtle and sophisticated dynamic with the brain that we are often unaware of.

“We listen to music with our muscles” Nietzche. Sacks (2007) p. xi

 Indeed as I write this, I am coming out of an ‘off’ spell.* I am coaxing this return to a state of relative fluidity by swinging my good right leg in time with the off-beat accentuation of Reggae and Dub music. As it happens today, big favourites Aswad.

 Of course, you could say all that is happening here is that the drugs are finally kicking in, bringing an increased feeling of well-being,  CD happens to be playing and so I’m swinging along to it: End of story.

But how does that explain many occasions I have been able to fight away, or bring myself out of a particularly deep ‘off’ spell by listening and dancing to music.? (Okay, ‘dancing’ may be stretching it a bit … Let’s call it ‘moving’) when in theory I shouldn’t have been able to walk? No, something far more profound is happening here.  I have a confidence, a freedom and range of movement normally absent. Plus I am able to dance – sorry ‘move’ – for longer periods than my medication would normally allow.

I’m not the only one of course:

“Some of them could not initiate a single step, but could be drawn into dancing and could dance fluidly” Oliver Sacks in his book ‘Musicophelia’ (2007) on post-encephalitic/Parkinson’s patients encountered in 1960s.

And what about the task I am hopefully about to accomplish? Which is insert the needle of a Graseby Winged Infusion set into my leg. The needle, which is 2cm in length (doesn’t  sound much does it?) is attached by a short tube to a syringe, set in a battery-powered pump which I wear round my waist and gives me a constant, measured dose of the Dopamine Agonist drug, Apomorphine. The needle has to go up to the hilt into the sub-cutaneous (Fatty layer) beneath the skin at a 45 degree angle. It’s something I have to steel myself to do every morning, and is a task which is always accompanied by music: Music of power, dignity, self-belief: hence Aswad.

* ‘Off’ (or in our house ‘offline’) describes the periods (between 4  and 6 times a day, 30 minutes to 3 hours in duration when my anti-Parkinson’s drugs are not effective for whatever reason.

© Andy Daly  2010

Quotations from Sacks, O: ‘Musicophelia’ (Picador) 2007 by kind permission of the author.

Know it all

Now if anybody tells you that these days, Parkinson’s is not so terrible and that it can be easily managed with drugs, you can say nothing, but just punch them as hard as you like on the ‘Philtrum’ (Its the vertical groove or ‘channel’ we all have which runs – literally in the cases of some people – from the nose to the top lip) There are lots of nerve endings here which make it extremely painful when bopped.

With any luck, fragments of bone will be shattered away and lodge themselves in the ‘Know-It-All’s brain too.

© Andy Daly  2010