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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Parkinson’s Awareness Week

As regular readers will know I make a point of making posts to this blog Parkinson’s-free. But, as it is Parkinson’s awareness week may I present this to make you even  more aware.

The boy who fogot how to smile

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, just punch them as hard as you like on the Philtrum (It is the vertical groove or ‘channel’ we all have which runs 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.

“Well, it seems your GP was correct, you have Parkinson’s Disease” I remember distinctly the tall beech trees that I could see behind Consultant Neurologist Richard Crawford, through his window. I was transfixed by them as they swayed in the stiff breeze. His words seemed to echo around the room, while briefly, still captivated by the trees I left my body and looked down on the scene in the room from somewhere above the window but which still allowed me a view of the trees as well. The gentle squeeze of my left hand brought me back down to earth, and back to my body. Crawford leaned back in his chair and began to chew on his spectacles. He had taken off his jacket earlier when he got me to do the gait tests (to my humiliation, out in the corridor in front of a packed clinic waiting room) and sat there in blue striped shirt and tie with red braces. He began to speak. His eyelids closed and fluttered as he did so. There was the tiniest hint of a stammer in his voice.

God knows why, but I imagined him as a schoolboy. Public school of course: taunted, teased and bullied because of his blessed stammer and, I suspected, a complete lack of co-ordination and interest when it came to sport. I found myself feeling sorry for him. Strange, really in the light of the news he had just given me. I had first seen him a little under a year before, with the same symptoms. Stress and Writer’s Cramp he concluded. I think he knew then, his diagnosis possibly intended to ‘buy’ me a few more worry-free months, maybe more. In the event, it did the exact opposite: the intervening year being one blighted by increasing concerns as to whether there was something wrong with me or whether it was all imagined. By rights, I should be on his desk now slamming his head in the drawer.

Well things have moved on apace since that meeting in Crawford’s consulting room, it is sixteen years later and I am still battling away with my devious and wily opponent. In the meantime I have tried all manner of drug cocktails in order to keep him at bay: Pergolide, Pramipexole, Neupro, Apomorphine, Entacapone, Stalevo, Amantadine, and of course L-Dopa. Each one comes with its own particular set of unwanted and frightening side effects – Nausea, movement disorders , Obsessive/Compulsive Disorders, Impulse Control problems, Addictions, Hallucinations, Psychosis, the On/Off Phenomenon, characteristic of long term use of Leva Dopa, of course, the alarming and exhausting diskynesias.

So Parkinson’s is much more than a tremor or slowness of movement, motor deficiency. As the condition progresses the non-motor issues become more difficult to deal with and their management becomes more complex. Luckily I was thrown a lifeline in the shape of Deep Brain Stimulation which I had done in 2011. If it weren’t for this I would be in a very dark place indeed. I went into it knowing that possible side effects were impairment of speech and Depression and in the event both have been problematic. My gait is also a bit clumsy but DBS has meant that I have remained on the same drug regimen for the last four and a half years plus it has given me back a measure of independence. There is no doubt that it works, but my perception is, whether the DBS, the drugs, the underlying condition or external factors (probably a combination of all four) that my personality has changed.

Scan of my brain. Dead centre there are two circular shapes, to the left and right are two semi-circular shaped which look like spanner ends. This is where the DBS electrodes are located.

Scan of my brain. Dead centre there are two circular shapes, to the left and right are two semi-circular shaped which look like spanner ends. This is where the DBS electrodes are located.

Lack of self confidence and self esteem are key issues. Although I have been retired now for 6 years or so I still haven’t found my ‘niche’ in a post employment world; while many things I once took for granted are now only on the edge of memory – walking without having to think about it, driving, Having a good criac in the pub with friends, teaching a class of children, my Taekwondo patterns, replacing worn brake pads on the car, the ability to write by hand, to enjoy music, to play the guitar.

And who has front row seats to my humiliations and inexorable decline? The people I love most and whose approvaI I seek more than anything: my family

Sometimes I feel like I am in a ‘bubble’ and ‘real life’ is taking place around me. I don’t speak or engage because it is too tiring to manipulate my mouth to get anything intelligeble out, other times it is simply because I don’t feel I have anything to contribute.

And the ‘Smile’? This is a reference to what is known as ‘The Parkinson’s Mask ‘ Where the muscles of the face lock, leaving me with a ‘blank expression’ which in turn makes smiling difficult. So I am not gumpy or cheesed off, I am just at the mercy of the level of Dopamine in my brain, So I’ll pass when it comes to the ‘Selfies’ I f you don’t mind.

Andy Daly 2016

 

 

I wanna be me!

Regular readers will know I’ve always tried to resist talking about the elephant in the room in this blog, but from time to time I get a bee in my bonnet about something and feel compelled to let it all hang out. (If that’s not mixing my metaphors too much)

Guess what?

Guess what?

When does the neuro degeneration of the brain rob you of your identity?

I have been living with my uninvited guest now for 15 years. That’s almost a quarter of my life. Not withstanding the brilliant treatment I have had from The Functional Neurosurgery Department at the National Hospital for Neurology and Neurosugery; and the improvement in drug therapies generally, which mean I have a better quality of life than patients a generation ago, there are stll so many things in life that I have lost the ability to do or enjoy.

In fact I sometimes I think if I were cured tomorrow (unlikely I know) would I be able to remember ‘Me’? Could I return to being the person I was? Could I replace all the pieces of the shattered jigsaw?

Xray image of a human head brain

 

It makes me appreciate how fragile is that exquisite piece of wiring. Look after it.

© Andy Daly 2015

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

 

The Last Hangover

You know that feeling. When it finally dawns on you that the jukebox you have been stuffing money into all evening is in fact a cigarette machine.

Trouble

Trouble

No? Let me explain. We have only gone and got ourselves a cozy little lock-in at the Clay Pigeon, a huge unlovely ‘Estate Pub’ near to the school we work at. It is an unheard of state of events, so we aim to make as much of it as possible.

But I am eager to warn my fellow revellers lest they fall foul of the same wicked ciggy machine trickery, but they seem a long way away, too far to hear me, they are enveloped in a thick fug (everyone is smoking … It may have something to do with all the packets I pay for while simply trying to get ‘The Tide Is High’ by Blondie on the ‘jukebox’).

Alarm bells should be ringing right now and indeed I do hear faintly what sounds like my Mickey Mouse clock tinkling away, but choose to ignore it and continue drinking and having a great criac.

We finally stumble out into the street at about 2:00 am

The Clay Pigeon. Now a restaurant.

The Clay Pigeon. Now a restaurant.

The following morning I have such a noggin on me, plus the sweats and the shakes, it is a blessing we only have to do a half day.

I swear when we get back into the pub that afternoon that I am going to cut down on the old falling down water and that I am getting too old for this.

And I do.

A few months later I realise why my tolerance to alcohol has become so weak, when it is confirmed that Mr. Parkinson, uninvited, has moved in to my top floor; which is a bit inconsiderate seeing as I am still living there.

It’s not that I am ‘not allowed’ to drink; it is just that it doesn’t do it for me any more which is perhaps just as well. Also, by the third scoop most alcohol starts to taste like aviation fuel anyway.

My Last hangover 15 years ago.

I don’t miss them.
© 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

Botox Gives Me The Needle

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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

Put yourself in my shoes

parks_weekparks_shoesI am pleased to have been asked to write a blog post on the theme ‘Put  yourself In My Shoes’ by Parkinson’s UK  for Parkinson’s Awareness Week.

docs

So, for starters I suggest we try and get you into my shoes. Size 8 black Dr. Martens boots. No, not necessarily a fashion statement: they are light, and provide essential support for my ankles when I walk. The dystonia I suffer from causes my feet to turn inwards when I walk and a pair of tight fitting Docs makes bit makes it a bit more bearable.

How are you doing with the boots? Got them on? Good. Now pop on this pair of oven gloves and tie the laces.

(It doesn’t really feel like you are wearing oven gloves when you are performing the task, they are simply to replicate the kind of frustration you feel at the complexity of doing this, the simplest of things because you cannot co-ordinate your fingers, or because they have no strength or simply do not respond to what you/your brain is telling them to do.)

Now, let’s put your coat on. You may have some difficulty … What is that? Yes, I was about to say you may have some difficulty getting your arms in. Yes, that’s because of the falls you had last year. You’ve damaged your  left shoulder, we think. That’s why you can’t get your arm any higher.  Here let me help you. Stay upright though! Don’t start to shuffle your feet! Take longer strides! Don’t … You’ll fall … Oh deary me.

Hmmm! Let’s have a look … I think it’s only a surface wound, I’ve got some iodine and some steristrips upstairs. You take your coat off while I go and get … Oh of course, you can’t can you? Well let me help you get the coat off and see to that cut. Pardon? It’s time for you medication? I see. Well let’s deal with one thing at a time shall we? Let’s get that coat off … Now I’ll just run upstairs and get the … What? You need to go to the toilet now? Is that before or after I clean your cut and get your medication? Before? … You think? OK, in you go.

What? You can’t go now? … I thought you were desperate? Turn the water on! It’ll help.

What? … Oh I see, you can’t go because you still have the oven gloves on …

… Well, you get the picture…

If you were in my shoes this time last year, it would have been a pretty miserable experience, because my shoes didn’t go anywhere. However, thankfully, due to the patience, care and dedication of the Functional Neurosurgery team at the National Hospital For Neurology And Neurosurgery who performed the Deep Brain Stimulation procedure and supported me through the hellishly complex programming; I am able to put my boots on, lace them up, put my coat on, leave the house, walk to the nearest Underground station and travel into London, visit an art gallery, see a film …. Whatever. On my own.

I have a life again AND not only that, but I have been able to reduce my medication to microscopic amounts compared to what I had to take before.

It has not been an easy road The DBS has not worked as well as we might have hoped. My walking isn’t pretty, my speech suffers when I have to increase the level of therapy to counter the wearing-off of Sinemet. But I am learning to work around its limitations.  It is not a cure.

But for the time being it’ll do me.

Links to posts on this blog specifically about Parkinson’s and what it is like to live with it. (Please note, the hospital referred to in the East Ward stories is not The National)

Rake’s Progress

Rake’s Progress 3

East Ward 4

East Ward 3

East Ward 2

East Ward 1

Sticks and bones

Brain downs tools

Who will make ammends?

The way of the hand, foot and the walking stick. Tae Kwon Do and Parkinson’s

 Love and other drugs

Know it all

Dub cutaneous injections: Aswad and the man who…

Please be aware some of the above contain language of a fruity nature and my not be suitable for those of a nervous disposition.

I ought to make clear is that what you have read is a fictionalised version of my experiences. Also, Parkinson’s, its symptoms and its progress differ from person depending on age, the type of medication they are taking, external stresses and so on. So please bear in mind anything you have read here may not be typical of your own case or that of the person you care for.

The Way Of The Hand, Foot And Walking Stick: Taekwondo And Parkinson’s Disease

Tae Kwon Do (The way of the hand and foot)

‘Daly rewarded with Taekwondo Bronze medal’ ‘Third spot for battling Ruislip favourite’ ‘Against all odds, Daly steals TKD bronze’ clamoured the back pages of the morning papers.

Next week, iron your uniform

You don’t recall it? Tsk! Well I’ll just have to refresh your memories then. But first, a bit of etiquette:

“Kyungnet!” At this command, you bow purposefully but deferentially, not too low; from about the height of your solar plexus. Once you have raised your head again, relaxed, but with the limbs firmly under control, you, without shifting your position, step your left foot out 90 degrees to the left: a distance broadly equivalent to one shoulder width, at the same time bending your arms at the elbows (always a good place to do this in my experience) raise your fists to a point just below your chin, outer edges touching, palms facing in. By now your left foot should have completed its shift – if it hasn’t, may I politely suggest that you may be better off with the flower arrangers in the room next door. Thrust your fists (once again, firmly, with strength – but under control, not wildly) out in front of you so that they are just in front of your belt knot. Hold the position, fists about a fist apart, Eyes dead ahead; standing firm yet relaxed.

Good! This is ‘Joon Bi’ or the ‘Ready Stance’

“Charyut!” You are called to attention. Snap to it! Straight and tall, hands and arms following the seams of your trousers. “Kyungnet!” You bow again out of respect for your instructor: who will be your better – if not your elder.

‘Okay, sit down’ The instructor addresses his class, which consists of about 30 WTF (World Taekwondo Federation) students, ages roughly 7 to 13, of which nearly half are girls. The class members are each kitted out in uniforms which go  through a whole spectrum of dirtiness and dishevellment from grubby grey to the crisp, smartest, whitest of whites. I notice that the majority wear a white, white and yellow or yellow belt, while alongside the instructor, standing to attention at the front of the class are a young man wearing a black belt and four older teenagers all of whom wear striped belts: two girls in green and blue and two boys in black and red.

The instructor fixes his gaze on a couple of fidgety lads as the class sit in lines before him:

‘Now, for next week, iron your uniform, so it doesn’t look like you and your mates have slept in it all week. Just don’t answer the phone if it rings while you’re doing it: and…’ he signals another pair: ‘I want to see you two tie your belts yourselves. No! Not together. Each of you, ’round your own waist. Legs crossed if you please … Oi! Legs crossed … Why? Dunno? Anybody want to tell ’em? Well just imagine what one of these big fellers here … C’mon Rob, let’s have you over here a minute’

With the young black belt, he ad libs a short, but impressive fight sequence which finishes with Rob feigning the effects of receiving a powerful kick to the head and fighting to retain his balance .

‘Now just imagine what one of these Black Belts would do to your skinny little legs, sticking out in front of you as he goes trampling all over them, when  he’s sparring. He’d snap ’em like they were bits of sphagetti’

It is a scene repeated, I am sure, in Do Jangs (Training Halls) up and down the country, every Saturday morning; where classes in this increasingly popular Korean martial art are held, and has been so since the sport began to get a foothold in Great Britain in the 1970s, thanks to a small, but dedicated group of enthusiasts. Some of whom, as it happens, had the night before been training in this very room.

But I am totally unaware of any of this.

The Martial Arts

It was a lovely, sunny Saturday morning as I drew into the car park of the community centre which was home to The Brotherhood Taekwondo Foundation all those years ago. In fact, it was so long ago that  David Cameron was no more than an irritating itch on the backside of the Conservative Party, while  Anthony Charles Lynton Blair had yet to be wooed by wannabe-cowboy, George W Bush Jnr, and in so doing cuckold the British electorate over Iraq and Afghanistan. Little did I know it, but I was about to enter a building which for some five years or so was to prove  almost as important to me as my home or place of work, and in so doing, make one of the best decisions of my life.

But, one thing at a time. I am here, instead of  Sainsbury’s because I’ve come with my eldest to take a look at a martial arts class. We felt that at the ripe old age of 12, it was about time he learned how to look after himself. To this end we’d asked around and this club: ‘The Brotherhood’ and one of its instructors in particular, Neil Patterson had come highly recommended

I knew nothing about the Martial Arts, or ‘Marital Arts’ as a student I once taught referred to it on his University application Personal Statement.

No. All I knew was what I’d gleaned from watching ‘Kung Fu’ with David Carradine on TV. Now, that made no sense at all. Even in the most innocuous school playground fight, I reasoned, Carradine would get nothing less than a sound arse – kicking if he were to spend as much time gazing, glassy-eyed into the middle distance, and then fight so painfully slowly.

No. The closest I had come to experiencing the Martial Arts was watching the late, 10th Dan Dai Hanshi Phil Milner and team training  for, and executing  a world record ‘Breaking’ attempt. Demolishing a piano by hand. Literally smashing it to pieces, all of which had to pass through a 9 inch diameter hole. Against the clock. Foolishly, I didn’t regard the spectacle to be of any real significance at the time, and although I always had a secret fascination with the Martial Arts, dismissed them as something which were not for me.

A Black Belt is only a White Belt who never gave up

‘Wassup?’

I am brought back into the training hall with a bump.

‘You’re knackered?  Whaddaya mean you’re knackered?’  The instructor good-naturedly teases his charges.

You ain’t done anything yet …! Who wants a drink?’

‘Me!’ they sing out in unison.

‘Tough! You can have one in 5 minutes. Patterns first – in the groups you were in earlier. Remember you’ve got a grading coming up in 2 week’s time. I want them perfect by then. Practise and practise till you can do them in your sleep. Practise makes …?

‘Perfect’ Almost all of them chime back

‘No, it doesn’t. Practice makes permanent. So make sure you are getting your stances right. Ask if there’s anything you’re not sure about.  Charyut!  Kyungnet! Sijak!’

And off they go, into their groups to work  with the senior belts.  A few minutes later, a couple of them are put through their paces on the floor demonstrating their particular patterns in front of the class. They are reminded, as some despair at ever being good enough to move up the belts:

‘Listen. A Black Belt is only a White Belt who never gave up’

Finally, they get their drink

The instructor takes the opportunity to come over and introduce himself.

Taekwondo in two minutes

The Patterns or Taegeuk, I discovered later are based on a fight scenario and consist of planned sequences of attack and defence against multiple opponents, designed to perfect stances and the techniques of kicking, blocking, punching, turning and so on. Each Taegeuk, has its own attributes. Number One (or ‘Il – Jang’) for example, represents ‘Heaven and Light’ and symbolises creation or the beginning. The floor pattern of steps and stances belonging to each conform to the shapes of the four trigrams on the Korean flag, the Taegeuk, representing the origin of all things is in red and blue, holding the two principles of yin and yang. The whole denotes a universal unity. Amongst other things, advancement to the next belt colour demands mastery of the pattern  for that level; and to reach Black Belt there are eight.

The philosophy of Taekwondo is taught as well.  It has to be if students are to progress, but it is done so in an unobtrusive way such that it is presented as a series of maxims and principles by which students might abide and thus lead  honest and decent lives. The most immediate manifestation of this is in its five tenets: Etiquette, Modesty, Perseverance, Self-Control, Indomitable Spirit. It is mandatory that all students know what these are and what they mean.

Training

My son and I stay to watch the remainder of the class and he is keen to give it a go, so I bring him down and he starts to train the following week. I accompany him to each lesson for the first few weeks; I guess to make sure that he is training safely and happily. I soon realise that this is not an issue at all as the instructors: Master Con and Fatima Halpin, Robin Bell,  Alec Bryan as well as Neil give a high standard of tuition, which allows individual students to learn and progress in what can, sometimes be a busy class. However, I continue to accompany him long after I am satisfied he is settled, because I begin to be fascinated by the whole concept.

One thing that struck me immediately was that the progress students made (If they were prepared to put in the time, and most were) was impressive. In fact, the whole concern was imbued with a ‘culture of success and achievement’. Higher grade students were making the transitions from the coloured belts to the coveted black, and from there, instructing  the lower grades. Meanwhile the junior students were encouraged to accomplish at the regular gradings and prove themselves worthy of the next belt up. In addition, the club was constantly pushing for honours. Competition, in the form of Kireugi (fighting)  Poomsae ( collective term for the Patterns) and challenges against other clubs was a strong element of the club’s work. Students were encouraged to compete and as a result the Brotherhood had a justifiably highly regarded reputation in British WTF Taekwondo circles. Success was expected and celebrated when it came, with award ceremonies built into lessons so that everyone participated.

With this in mind, I recall that at the end of each saturday morning class, Neil presented a trophy every week to the student he thought had worked the hardest and had made most progress. Anyone good enough to be presented with it three times, he said would win it for keeps. On getting changed one morning my lad said:

‘Dad, I’m going to win that’ And he did.

An overwhelming air of inevitability

For my part, as with so many parents (and there were many in whose footsteps I followed and yet more who subsequently followed in mine) with an overwhelming air of inevitability, I soon found myself being inexorably sucked into joining my offspring in the Do Jang. I began to think: Hmmmmm I reckon I could do this, and what a good way of keeping fit!  Suddenly, I had a Do Bok (uniform) ‘Oh there’s no going back now!’ remarked a fellow, but more experienced late starter at seeing this; and with the addition of a Te (My painfully white belt)  I was, before I knew it, training three nights a week.

Bloody hard work, with the result that …

And I loved it! It was bloody hard work, don’t get me wrong.  Due to advancing age (I was in my 40s when I took the plunge) and the associated failure of vital body parts (and of course in my case, the onset of Parkinson’s although at the start of my ‘Martial Career’ it remained undiagnosed) I had to work  twice as hard as the young ones. And he was right, my equally creaky colleague:  There was no going back. The drill work and Poomsae, the repetition of moves again and again in the Do Jang till you were doing them in your sleep (basically, the development of  ‘Muscle Memory’) could be tedious at times but is something for which I am eternally grateful, because as a result I now have a stock of warm-ups, exercises, stretches and movements I can call on to help me deal with the ways in which the Parkinson’s affects my body. In the same way that Conductive Education, developed at The Peto Institute in Hungary can sometimes enable people with disablilties to initiate movement by ‘cues’ and ‘prompts’, I employ the principle of  the ‘action/reaction’ force to make reluctant limbs groan into life. Of course none of this works without the drugs too, unfortunately. I am still able  to remember most of the patterns and from time to time, when I’m feeling brave enough, I try a couple.

I really enjoyed the sparring. This was when you used the skills and techniques for what they were intended: fighting. Full contact was always very safely managed. That is not to say that anything less than 100% commitment was expected, but adequate protection and an awareness of the well-being of others were insisted upon whilst any sign of recklessness not tolerated and stamped on straight away. Breaking was great fun, and almost always left me with a sense of achievement and surprisingly, rarely any lasting harm. I was possessed of only modest skills, as I was always aware: especially compared to the awesome physical and mental prowess of some of my instructors and fellow clubmembers. For example, the skill, accuracy and control in the performance of flawless patterns as demonstrated to a hushed hall by Master Con Halpin, Robin Bell’s fluidity of movement, Andrew Yick’s phenomenal breaking power, Wayne Gates’ absolute concentration and economy of style.

Bloody Parkinson’s, with the result that …

For me, it is the general feeling of fitness, strength, well-being and confidence in one’s own physical ability, the friendship and the cameraderie that existed within the club that are the highlights of my time training with The Brotherhood. All things I miss terribly.

My pride and joy, and Yes! They are genuine.

I got my diagnosis three days before taking my Blue Belt grading. The consultant recommended starting drug treatment immediately. However, after realising that starting on Anti-Parkinson medication (though microscopic amounts compared to the industrial quantities I have to take now) would involve sickness and nausea, I held off (although physically I was nowhere near my best) till after the test.

I passed. I’m not sure how.  As far as moving up the belts was concerned, my son and I went neck and neck (although of course no martial art should be just about belts) Most of our training was done together. It’s a great comfort to know that at least for a couple of years he, and to a certain extent his brother, younger by two years and who trained with us for about the last 6 months or so, will have some memories of me as fit and able, going through my paces, equally happy to face up to an experienced Black Belt or a white belt novice.

The First Southern Area Poomsae Championships, Gatwick

And so, masterfully succinct – as you’ve come to expect  from me, that’s the quickly-sketched background, as to why I am here, in my Do bock and (2ndKup) red belt, freezing my nuts off, far too early for it to be respectable; on a Saturday morning  in a sports hall near Gatwick.

I am here as a competitor in the First Southern Area Poomsae Championships, hosted by The Livingwell Club, near Gatwick. And it is busy, with entrants from all areas of the country.

Although I have spectated at both pattern and fighting events, this is my first competition. My day is made virtually complete when, with dismay I realise that my competition category is that of  ‘Veteran’.

And I’m still freezing cold.  Together with Big John, my long-suffering, even-tempered sometime sparring partner, who is also competing in the same category, I mooch around  bit to find out at what time we are expected on the floor, so to speak. Apparently our ‘slot’ is about midday. I do some warming up and begin to run through my patterns. My eldest has a busy day. As a first Kup (Red/Black belt – one away from black) his is one of the most competitive  groups. Unusually I begin to feel quietly confident. This rare state of affairs is thrown into turmoil more than somewhat by the news that they are bringing our category foward. So far forward in fact, that we’re on now!

frantically trying to remember 

While I am frantically trying to remember the drill for entering the competition area, the first competitor, a red belt from Liverpool takes the floor. He knows his stuff. He’s obviously competed a few times before and already looks like a potential winner. My confidence in a podium finish, however is undiminished. Today feels like the day. Then it’s Big John’s turn. John has been training a little longer and more regularly than me. And it shows. Then it’s my turn. Thankfully, I am still in an ‘on’ state (In other words my L – Dopa medication is still working)

Normally, there are three rounds. The first requires performance  of one Poomsae from the first compulsory section. I think I did Koryo, the  first Black Belt pattern. You are marked on Accuracy (Correctness of Poomsae: techniques and basic movements) and Presentation (Skill, speed, strength and power)  The highest 50% in the category go through to round two. Here, contestants choose from the second, more advanced compulsory section. I must have done Keumgang, the second Black Belt pattern, which would have left me, for the third and final round, pattern 8 and one other. Which? I don’t recall. Anyway, it doesn’t matter, it didn’t go to a third round. I remember nothing about performing, except at the end, trying to make sure I finished on the right spot, which in most patterns is the same as your starting point. I also remember the feeling of relief that it was over. It is quite a tall order to perform physical tasks/movements of such complexity and under such intense scrutiny.

It’s true, Dear Reader

A short wait for the scores and Lo and behold! I get into the medals! That’s right! Third place. Joy unbounded! … or Joy  unfounded, I’ not sure which. My son on the other hand has had  a tough and unproductive afternoon. His category went the whole three rounds and started with about 20 competitors. He has cooled down after his last pattern, and is feeling shivery, achy, hungry and generally pissed off. It’s now 5:00pm and we still have to battle the traffic home; so my, some might say, rather unwarranted celebrations are cut short and we head off. On the drive back, my eldest is not in the mood for ‘move by move’ breakdowns of my killer patterns … and promptly falls asleep, only waking up as we pass the White Bear pub in Ruislip. He doesn’t realise it as his ‘cartoon’ sleepy face: two crosses for eyes and an upside down mouth with its tongue hanging out, slowly dissolves and he returns to normal, but all journey long I’ve nevertheless been regaling him with the tale of my day’s  success.

‘One thing’s a bit wierd though Dad, Howcome you only had to do two rounds?’

Perhaps he has been listening after all …

The eagle-eyed among you, I suspect, may have spotted same:

‘Why no third round? Ah. I didn’t explain that did I?’ Of course the reason we weren’t called to do a third round is the same reason I was so confident of a ‘podium place’: ‘There weren’t enough entrants to warrant a third round.’

‘How many, Dad?’

‘Oh, enough to make it a close and exciting competiton’ I offered, unconvincingly.

‘How many?’

‘Three’

‘What!? So all you had to do was turn up, living and breathing to get into the medals? He was livid. ‘And even if you weren’t I suppose you still would have got it posthumously! …’

It’s true, Dear Reader. Three contestants: me, Big John and the Scouser who, as we suspected he would, won it.

The trophy – Life size!

And so ended my competitive Taekwondo career.

And that was it.

I continued training for about a year, but eventually circumstances prevailed. I remember my last training session. I was with my two lads.  Mindful of pacing myself for the whole lesson, I had taken it easy. It was no good. The ‘Offs’ had started to come more regularly and powerfully by then. So much so, that I had to sit out the bulk of the lesson, frozen, unable to move. We left at the end, some degree of movement having returned: sufficient I thought for me to get us home in the car, but it wasn’t to be. About half a mile from the club I had to pull in as I felt that the rigidity which persisted made it unsafe for me to drive. We had to sit ignominiously in the car till a taxi arrived and got us home. I cycled back the following day to collect the car.

And that was it.

I have to say, in all honesty and without wishing to descend at all into sloppy sentimentalism that it was a significant loss. A loss of, as I have indicated so many things: the fitness side of it, the skills, techniques and the learning all the time, the piecing together of one bit of knowledge with another, the way in which certain elements of the training, and in particular events such as gradings hauled you out of your comfort zone, and the shared nature of the experience of all that. The banter, the fun and the friendship. And I think here is where we get to the nitty gritty, for ultimately, the strength I draw from my memories of my time spent training with the Brotherhood as, let’s face it, a decidedly average – if that – Martial Artist, is a result of the warmth and kindness extended to yours truly and my family, by almost everyone involved in the club at whatever level. Now is that the friendship of a particular group of people, bound together by a common interest, or is that the friendship of Taekwondo? I’m still working on that, but I think I know the answer.

At about the same time I stopped training, though thankfully I don’t think the two events are related, the club went through some changes in personnel and training facilities. Neil Patterson, in my humble view, a gifted and resourceful teacher meanwhile had moved to the South Coast, where, knees permitting or – more often than not –  knees not permitting, he continues to instruct. I only mention this in order to point out, without being presumptious that I consider all Brotherhood club members, be they current or former with whom I had contact over the years, friends.

Thank you and goodnight

I would like to end this long-winded epic by, as well wishing the Brotherhood a Happy 30th birthday, saying a big ‘Thank You’ to those people (far too many to mention individually, and if I did I’d be bound to forget someone,) who had the misfortune to have to spar with me, do one step, self defence or watch as I stumbled my way through pattern after pattern or who were generally responsible for giving me a ‘prod’ along the way. Special Thanks go to the following, who I will name  for their willingness to give of their time and expertise, their patience, help, encouragement and inspiration: Neil Patterson, Master Con Halpin, Fatima Halpin, Robin Bell, Brian Robinson, Alec Bryan, Donette Gates-Day, Tracey and Rob Sleight, Rosie Biddlecombe, Kyle Patterson, The Long-Suffering Big John Moran and family and last but by no means least, Master Usman Dildar (I finally wrote it! I may have gone off track from time to time, but I did finally do it!)

To all of you,

당신을 감사하십시오

Links

The Brotherhood Taekwondo Foundation

Titan Taekwondo

Premier Ki Taekwondo

Ickenham Taekwondo

London Taekwondo Academy 

The British Taekwondo Control Board 

World Taekwondo Federation

Postscript

Of course, it has occurred to me since publication of the above, that certain points may have been left open to potential misinterpretation. What you have read, skimmed, through or totally ignored to come straight here is My Own Story. I am not advocating the practice of Taekwondo as a ‘cure’ for Parkinson’s Disease. There is no cure. Nor am I suggesting it allieviates symptoms, or likwise encouraging people with Parkinson’s to take up the sport. In my case, I was lucky enough to ‘get in’ my all-important two formative years before the arrival of my uninvited guest. The point is that I was, and still am able to use some of the skills and techniques I have learned and put them to use or adapt them in such a way as they enable me to keep fairly supple and fit: which is half the battle with Parkinson’s. They may play their part in my ‘Bag of Tricks’, which might for instance, mean steps or moves which allow me to navigate a particularly tricky bit of the house when my walking is not too good.

Parkinson’s has been dubbed ‘The Designer Disease’ for a reason. No two people’s symptoms are alike. What ‘works’ for one person may not for another, as I have painfully found out over the years, while Taekwondo is a Martial Art; It is not meant to be easy.

Should anyone with Parkinson’s, despite all that has been said, wish to take up the sport, I would urge you strongly to discuss it with your GP or Neurologist in the first instance and then with the club you intend to train with. As for choosing a club (and this goes for anyone: able-bodied, young or old) shop around. Visit a few. Sit and watch lessons (If the club is reluctant to, or doesn’t allow this – Strike it from your list.

End of sermon.

© Andy Daly 2011