Monday, monday

I have thought long and hard ( 5 minutes) about posting this tale; particularly as it is one of the stated aims of this blog that it should not become a dull repository of all things Parkinson. But there are lessons to be learned – especially for me and maybe others as well.

Above all, it shows us how fleeting everything is, and how our lives can be changed completely within seconds for no rhyme or reason.

It is what it is.

Before I begin, a brief look at some of the terms used, which are pretty essential in understanding how People with Parkinsons (PWP) lead their lives (Apologies I if you already know this. It is tiresome, but not very long)

Dopamine:

The substance produed by the brain which acts as chemical messenger and allows movement to take place. By the time of diagnosis PWP will have lost about 60% of these Dopamine-producing cells .

Leva-Dopa

A synthetic form of the chemical which will cross the blood/brain barrier. Dopamine itself will not do this. Great at restoring movement, but at a price; as the body gets used to the Leva –Dopa, the more it needs , and as doses are increased very unwelcome side effects kick in.

Deep Brain Stimulation (DBS)

This is when an electrical current is passed from a battery implanted in the chest via cables into the skull into two electrodes, implanted into the brain. The current is adusted to give therapeutic results. I had this done in 2011. It is not cure but in many patients it is seen to ameliorate the symptoms.

‘Off ‘

When the leva-Dopa medication or not working. Example. Protein inhibits its absorption. So it may not work after a protein-rich meal.

‘ON’

When PWP have relatively good movement, either because of drug therapy , DBS or a mixture of the two.

Here we go. Monday morning I was getting ready for my 9:30 am weekly Yoga class. It is a five minute walk from my front door. I was alone, everyone had gone to work and I was sitting on the bottom stair, leaning forward tying up the laces on my trainers when I heard an electronic ‘beep’ sound.

I recognised it as the on/off switch of my DBS handset. The handset is about the size of a small mobile phone and allows me to make fine alterations to the amplitude of the DBS settings . I knew immediately what I had done. In the leaning forward motion I had inadvertantly caused the handset, which I always carry in my tracksuit pocket, to swich off.

So now I am getting no deep brain stimulation. Immediately my hands start shaking uncontrollably I am very ‘Off.’ I try and remain calm, noting as I do so that my mobile is in sight but not reach and my medication is in my yoga bag; again within sight and reach, but as good as on the other side of the world to my shaking hands.

It is so difficult to describe the helplessness and frustration. A simple task like putting your hand into your pocket becomes impossible. Nevertheless, after about ten minutes, I manage to get the handset out. I just need to lift it up so I can see. I am trying to keep my hands steady. It is no good, I drop the handset onto the floor somewhere beneath me. My strength is failing. My last Leva-Dopa tablet was at 0:90am. I wonder when it kicks in if it will be enough to propel me to sit up and get the handset. I wait for the familiar sensation of the drug doing its work. Eventually, I can feel it but my condition is so advanced that the tablet barely scratches the surface. It is about 11:00am Time to plan. The chances of my getting help rely on my getting the attention of the postman (who usually comes about 12:30) Of course he doesn’t show his face today. Typical. The amount of shit we get through our door…

It looks like I’m in for the long haul. It will be 5:30/6:00 before my wife gets home. Will I last? I’ve got no option! I spend the afternoon trying to keep wake ( I don’t want to miss someone calling at the door) and periodically shifting my legs to keep my circulation going. My body has slumped, so that I am now lying wedged on the bottom step, the step edge itself under the back of my neck. I am still wearing my jacket and one foot trainer on; the other foot, trainer half off.

My hands in particular are aching due to the constant shaking. My head is arching back at the neck, and feels like it is taking all the pressure from my legs. My fingers are starting to twist. My mouth is dry and I have no swallow.

I listen hopefully for the sound of a vehicle reversing into the drive.

5:45 she arrives. I have planned what to say the moment she gets in the door. My voice is weak, but I have enough of it left to explain what has happened and direct her to the DBS handset.

She switches it on. Bliss! I drop down to the floor and lay on my front.The relief is unbeliveable. I top up with medication. It takes about 15 minutes for this to work and I completely switch ‘on’.

I spend half an hour shaking and rubbing out the cramps (it takes about a week for the aches and pains to ease off)

Over eight hours stuck on the stairs. Nothing I could have done about it. But there was. You see I had got complacent, I had turned off The ‘Panic Alarm’ which is linked to a twenty four hour care centre. It had which had been false-alarming recently. Had that been swtched on I would have been out of my predicament in minutes rather than hours.

I know.

A perfect storm.

A perfect shit storm.

© Andy Daly 2016

 

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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

 

Brain Salad Surgery

Well, if I ever needed an illustration of what my life would be like without my Deep Brain Stimulation (DBS) set up, I had one yesterday.

And it wasn’t pretty.

But let’s start at the beginning.

Last week I got a call from The Functional Neurosurgery Department at The National Hospital For Neurology And Neurosurgery, Queen Square, London. They were calling to see if I’d be interested in helping them out with some tests. They are doing some research into the unwanted side effects of DBS, notably twitching or similar muscle movement in the lips, and the hand.

Of course I said yes.

It means a lot to help out, if only a small way, the team who have been so helpful to me.

A brief reminder about DBS. It involves implanting 2 electrodes deep into the brain, which are cabled to a battery and pulse generator implanted in the chest cavity. When properly set up, the pulse generator sends current to the electrodes  and the stimulation of the pathways in the Subthalamic Nucleus it causes are able in successful cases, to ease Parkinsonian symptoms.

Yesterday’s task, as I understand it was for the team to make some recordings of muscle activity with my DBS settings turned off and, then using one lead only (ie. one side of the brain) increase the amplitude in increments of one volt at a time. To capure this I had numerous electrodes stuck on my face my hands. Now, I’m no expert but it seemed these were connected to what looked like a 1970’s Moog synthesizer: a huge piece of equipment, favoured by Prog Rockers like Keith Emerson and Rick Wakeman. Which is not as daffy as it sounds if you think about it, the synthesizer’s job being to take white noise and shape it by altering its wave patterns and other parameters to create electrical impulses which can be converted to sound.

Robert Moog with Modular Synthesizer. It would fit on a credit card now.

Robert Moog with Modular Synthesizer. It would fit on a credit card now.

The equipment yesterday was doing pretty much the same thing, kind of in reverse picking up electrical impulses coming from my brain which have been shaped by the DBS settings and converting them to wave patterns (and presumably sound as well if required) which can be viewed on a computer, and recorded along with physiological changes in the patient, The brain, ably assisted by the implanted Impulse Generator under my collarbone, playing the role of synthesizer

We got going after a few teething problems which including getting the electrodes to give a clear read out. You’ll be pleased to hear that trying to solve this problem included turning the equipment off then turning it on again! Which was a strangely comforting thing to see.

Equipment for recording brain activity. You see what I mean?

Equipment for recording brain activity. You see what I mean?

As the tests progressed, I fairly soon went into an ‘off’ state characterised by lack of movement, and ridgidity . It is so difficult to describe what this is like. I am unable to move – even to shuffle back into the seat so I am comfortable. I can’t hold a cup of water, it has to be ‘fed’ to me. I am as helpless as a newborn baby. It doesn’t hurt as such, but it is extremely uncomfortable. This is what I would be like without the DBS. I would need constant care, would lose any Independence I enjoy, plus I would be having to take ever larger amounts of anti-Parkinson’s drugs. Drugs which have some scary side effects, which include hallucinations, impulse control disorders and dyskenesias (uncontrollable movements)

After about an hour and a half, the team had got some successful recordings, with twitching coming in around 6 – 7 volts. My settings were restored and I slowly come back to life, able to talk and smile again. Such sessions always leave me exhausted, but a measure of how far I’ve come in the 3 years since the op. Is that I made way back home on the rush hour tube, rather than take the cab the hospital offered me.

It really is remarkable, the difference DBS has made , and it is a technique which is constantly evolving. It is being used in the treatment of Cerebral Palsy, Tourette’s Syndrome, Depression and Migrane nowfor instance. For my money it represents the way forward in treating Parkinson’s in a cost effective way.
Sadly it has no effect on the tendency to compose or listen to Prog Rock.

 

The great H R Giger's sleeve design for ELP's 'Brain Salad Surgery'

The great H R Giger’s sleeve design for ELP’s ‘Brain Salad Surgery’

© Andy Daly 2014

Frankenstein’s Monster

It’s a good thing we can’t see into the future.
If I’d have known that one day I would be totally reliant on two Titanium rods implanted into the deepest, darkest recesses of my brain, that these would be wired up beneath my scalp, down my neck connecting to a battery/pulse generator implanted in my chest , I would have been horrified.
It always freaked me out as a kid. You know, that part man, part machine thing. I blame Dr Who; which I watched from William Hartnell to John Pertwee. It was that bloody Davros character half man half dalek that did it. Yep, the thought of it would have kept me wake at nights for years.
But we adapt, and now it seems the most natural thing in the world.
And so today. Lovely and sunny, I decide to go for my usual walk around the park and nature reserve at the end of our street – without my stick.
Ever had a bad idea?
I should explain. I don’t use my stick to rest on or take my weight at any point. I use it to create ‘cues’ (A bit of Conductive Education here) I tend to swing it in front of me, presenting a target for my left and right foot in turn to kick. In this way, I am able to create a rhythmic movement of my legs which approximates steps and allows me to perambulate, albeit with a clumsy gait, even when the oral drugs I take have ceased to be effective and I am in what we in the business call an ‘Off’ state.
I am doing quite well until on the way back I go ‘off’. One of the particlar ideosyncrasies of the way Deep Brain Stimulation works for me is that when the oral medication is working, my gait is adversely affected by an increase in stimulation; so I have to wait for a ‘sweet spot’ in my two hourly medication cycle such that the tailing off of the L Dopa allows me to increase stimulation and as a result, it enables me to walk. As I have said though, it ain’t pretty. I’ll try and describe how it feels as I go ‘Off’. I begin to feel like all my strength and energy are being sapped, meanwhile the muscles of my neck lock up, my jaw becomes set and my head feels like it weighs a ton. Arms and legs stop responding to all but the ‘biggest’ movements, fine motor control is shot. I start to overheat as my body loses its ability to regulate its temperature. Any aches and pains I have got are magnified x 2
The absence of stick proves more problematic than I had anticipated, I start to stumble and my footsteps start to run away with me (Festinating Gait it’s called – lovely phrase isn’t it?) I have to think of a suitable ‘cue’ to control this. I finish up by marching, calling ‘left right’ in my head and swinging the opposite arm, the ‘cue’ being the lower arm seen from the corner of each eye in turn.

Handsome eh?

Handsome eh?

It is when turning a corner I discover that my head follows my body without moving, rather than looking into the corner as you would normally. Marching, arms straight, with my big steel toe-capped boots, frozen Parkinson’s mask- face and surgery scars (which look like OS map symbols for a railway embankment or cutting), I am struck by how much I must resemble Frankenstein.
Or rather Frankenstein’s monster as immortalised in Boris Karloff ‘s portrayal in the 1931 movie ‘Frankenstein.’ The creature almost always appears as gruesome figure, with a flat square-shaped head and bolts to serve as electrical connectors or grotesque electrodes on his neck, and thick, heavy boots, causing him to walk with an awkward, stiff-legged gait. It sounds awfully familiar …
Now did you know that to this day, the image of Karloff’s face is owned by his daughter’s company, Karloff Enterprises?
Neither did I.

© Andy Daly 2014

Rake’s progress 3

Where am I?

One of my companions has just made a fire beneath his bed using his clothes. He said he ‘was cold’. Thank God he didn’t have any matches. Mind you during the course  of a chilly September night with draughts creeping in from the ill-fitting windows alongside my bed, I would have been glad of a bit of warmth and the restful glow given off by smouldering underpants and socks.

Guess where I am?

I’ll give you a clue. It begins with ‘H’.

Hell?

No, but you are close.

Of course, I’m in Hospital!

This time the surreal nonsense began in the cab here. The driver furnished me with all manner of interesting facts. Such as:

“Did you know the human body can live for 40 days without water?”

“Really?”

“Or is it food? Yeah, must be food….”

“Well, I suppose, if Jesus did it ….”

“Did he? He done all that then?”

“Well, according  to the Bible, 40 days and 40 nights in the desert …”

“That must be Lent then? When you give up chocolate? Just imagine 40 days and 40 nights without chocolate. It’s a good job Easter falls when it does”.

Hospital benefactors, decor, architecture etc revisited

The current admission is for surgery to re-implant the electrical contacts in my brain, to hopefully target better the stimulation, and in turn give greater relief from symptoms. I give the Princess Christian of Schleswig-Holstein a nod as I book in at reception. She was actually called Henrietta, the ‘ugly duckling’ daughter of Queen Victoria, except she never got her hands on a Swan-conversion kit. She was married off to a penniless minor German aristocrat, Prince Christian. She devoted her life to ‘good works’ and was a supporter of the Suffragette Movement. What doesn’t look quite so good on the CV is that she was apparently addicted to Opium (that is the drug, not the tarty perfume) and Laudanum. I resist the temptation to  inspect the fine craftsmanship and intricate carving on the staircase, and make my way up to the ward.

After bedding down looking forward to relative peace and quiet: there being only three of us on the ward, the night became typically eventful after  a patient is brought in somewhere about midnight screaming and shouting the place down. Apparently he’d had an operation the previous week, gone home and existed almost exclusively on painkillers. Now I’m no quack, but even I know that painkillers will give you constipation. So after the registrar had had a good feel of his distended stomach and bowel, and assured the patient he was (unfortunately) in no danger, he promptly fell asleep and gave the rest of us a virtuoso display of snoring and farting. By 5am I could take no more and was ready to fucking strangle the bastard. So I got up.

DBS set up

The beginners guide to Deep Brain Stimulation Surgery – A practical approach. Part two

After undergoing a battery of tests, I join the surgical team to discuss the situation. There are basically two options. The first, is to move my electrodes – but where to? My problem is that the implanted electrodes in the Sub Thalamic Nucleus of my brain are exactly were the textbook says they should be. Also, what I didn’t know until then was that every time they go into the brain they need to drill fresh holes in the skull through virgin bone. Even for a re-implantation. Not good. A Second option would be to fit a fresh set of electrodes in  the Globus Pallidus, with which there have been some successes in reducing the uncontrollable movements (Diskynesias) which are a side effect of anti-Parkinson’s medication. Again this would mean fresh drilling, but would mean that the original set of leads stay in place. Now my ears prick up at this. The advantages are that existing benefits could be retained and fine-tuned by means of the leads in the Globus Pallidus –  in theory. Disadvantages are a whole second run of cabling down the right side of the head, to match the left and the insertion of an additional IPG (battery and Implanted Pulse Generator about the size and weight of a large-ish mobile phone), into my chest below the collarbone, or the abdomen.

Hmmm. don’t much like he sound of that.

For those of you who battled through the particularly inept piece of writing that marked the opening of this tale of tales, and were  paying attention, you will recall my attempt to explain the intricacies of Deep Brain Stimulation surgery, using kitchen utensils, an AM radio and some  fruit and veg. It maybe of help to expand on this to explain my current predicament in laymans terms. So, to recap, you will need one coconut, one cauliflower, 4 kebab skewers, copper wiring,  AM Radio,  power drill and a new potato. Here’s a coconut I prepared earlier. In it I have the two original holes. I now have to make two fresh ones to re-implant the kebab skewers or to attempt a fresh insertion into the Globus Pallidus. So I drill the two holes as before making sure I leave a good gap between new and old.

The Kitchen’s getting a bit crowded here. Anyone fancy a Malibu?

Now take …  Fuck, I’ve dropped the coconut. That’s torn it. It’s cracked across the top from hole 1 to 3  and No, I can’t use the other half of the shell, because for reasons which seemed perfectly sound at the time, I cut it in half again to fashion a horse’s ‘clip clop’ hoof sound effect. Rats! Okay, lets gaffa tape it up, or failing that I can use some silicone sealant. Like everyone else does, everywhere. Where was I? Yes, now the cauliflower make sure … Oh I don’t think I can be bothered with this.

So, back to the Professor’s office, and what to do? The question is batted backwards and forwards, while I, gung-ho for surgery no more than an hour ago, am quickly losing my nerve as it becomes evident that any additional surgery will at least as difficult, if not more so, than the original foray; and that there is every possibility that it could leave me worse rather than better off. Finally it is put to the vote – my consultant (expert in programming DBS systems), Chief Surgeon (one of the world’s foremost practitioners in this field) and his assistant (again highly experienced in DBS) unanimously advise not to proceed on the basis that my test scores indicate an overall improvement of 50% and because surgery would be a ‘shot in the dark’, for the moment at least any way, it presents too much of a risk.

So there we have it. Down to me now to make the most of what I’ve got. Cue Operation Independence.

I can’t think of an amusing way to round this tale off, so I’ll just bring you up to date with Mr. Death’s Door, my constipated screamer from last night. As I packed my gear, I was more than satisfied to find that nature – or rather some industrial strength laxatives had taken its course, and Our Friend was now beset by a monumental case of The Green Apple Quickstep.

Fine for me. I have no sense of smell.

© Andy Daly 2012