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.


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


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.


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?’


‘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


The Brotherhood Taekwondo Foundation

Titan Taekwondo

Premier Ki Taekwondo

Ickenham Taekwondo

London Taekwondo Academy 

The British Taekwondo Control Board 

World Taekwondo Federation


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

Love And Other Drugs

As you may know, I try to avoid focusing on my Parkinson’s as a subject for posts, but this has been gnawing away for a little while, so here we go.

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 (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.

Joy of Movement

In order to experience  the joy of movement every morning I enter into a kind of ‘Faustian’ deal.  However in my case it is not out of choice, nor some idle desire for worldly pleasures, knowledge or power.  Neither is it made with the Devil (although sometimes I do wonder.) No, my pact is with pharmaceuticals and my Mephistopheles, the drug companies, Merck and Boehringer Ingelheim. For the joy of movement I have to take regular doses of two drugs in particular: Levodopa which basically turns into Dopamine in the brain in an attempt to replace the missing ‘chemical messenger’ whose depletion is essentially the cause of my Parkinsonian symptoms. However, Dopamine is very quickly broken down by the body, so it requires plenty of help to ensure it reaches its target. (Think of ‘The Dambusters’ or the aerial bombing sequence at the end of ‘Star Wars’ that Lucas lifted from the same 1955 classic.) My Neurologist once said it was a bit like  putting rocket fuel in a car. The second, Pramipexole, is a Dopamine Agonist, designed to stimulate receptor sites such that they make the most efficient use of the available Dopamine. Both are in my case, very effective when taken at the appropriate times, sometimes in conjunction with other drugs. They permit me a range of  movement from one end of the scale: stumbling and creaking about, to the other equally debilitating hyper-active and dyskenetic (uncontrollable) movement and everything in between. These phases manifest themselves as I go through the day and the efficacy of the drugs is tempered by stress, tiredness, the ‘blocking’ action of proteins, the wearing ‘on’ or ‘off’ of doses, dose failure and so on)


And what is the price I have to pay? Well, well, this is where it gets interesting. As drugs of true dependence, over time your body requires more to do the same job; and of course Parkinson’s is degenerative as we know. So over even more time it means even, even more. Even more drugs which are known to cause secondary effects (did you know this?) such as hallucinations, paranoia, compulsive behaviour, psychosis and all sorts of other unpleasant things you really don’t want to know about. Out and about, people assume that you are drunk – or just a nutcase, and laugh at your increasingly eccentric behavioural mannerisms: which of course become worse once you realise you are being observed. Friends and family watch as your personality becomes hideously distorted and, just like drug addicts out on the street, you turn inwards and obsess about your next dose, and the next and eventually it starts to run your life. And the worst thing is you know it happening, but feel powerless to do anything about it.


And what of Love?

You love. You love as deeply as you ever did, perhaps even more so, but as deep as you feel it you also want hide it.  You want to hide yourself away too. I guess it becomes part of your defence mechanism. You feel the need to protect those around you and immunise them to your suffering. You get so objective about it that you start to become hard-hearted. You can’t bear to think about it sometimes as you feel it reveals chinks in your armour which would very easily be exploited by the unprincipled, steely spectres that haunt you. You can’t bear to think about the enormity of what is happening. If you did, you reason, the tears would almost certainly fall. And if they started, they would never never stop. Ever. But you still feel the love, often expressed in the simplest of ways, as in the feats of endurance performed on my behalf by those nearest to me every day.

And what if?

And what if I just don’t take them? The drugs I mean. Well, within a matter of a few hours I am reduced to a kind of jelly, Unable to walk, talk clearly, chew, manipulate with my fingers or hands. I wouldn’t last long in the wild … or in the front room for that matter. But my cognition and awareness remain intact.

Nasty bastard isn’t it?

“Parkinson’s causes slowness of movement, tremor, rigidity and is commonly diagnosed in people over 60.” How many times have I read that and wondered as now, age 50 with 10 years of the ‘Shaking Palsy’ under my belt ‘Yes? and the rest?

Good News?

However, there is a glimmer of hope. I have had preliminary tests at The National Hospital for Neurology and Neurosurgery here in London to assess my suitability for surgery. Specifically, Deep Brain Stimulation. I won’t go into detail, but if accepted it would mean an operation to implant electrodes deep into the brain, which would be set to send out electronic impulses stimulating various brain target areas. These  in turn, are controlled by a unit (similar to a pacemaker) implanted into the top of  the chest cavity. The results of this particular operation have for some time been the source for encouragement. It is not a cure. However  patients for whom it has been a success have been able to substantially reduce the medication they take, while quality of movement, balance, gait and tremor among other things have improved. In some cases dramatically.

My mate Reg who has had it done says he feels like a ‘New Man’ and since the op he’s re-applied for and been granted his Driving Licence – A target for me if ever there was one.

The film? I haven’t seen it. Review? Oh dear. You mean you’ve sat through all of the above waiting for a review of the film? Oh well, never mind. At least you may have learned something.


Parkinson’s UK  (Formerly The Parkinson’s Disease Society)

The Parkinson’s Appeal for Deep Brain Stimulation (DBS)

Patients’ Stories

© Andy Daly  2011 (‘Know It All’ first published in  Feb 22nd  2010)

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

Sticks and Bones

I went to see my neurologist today at Charing Cross (that’s the hospital not the station – though I do wonder sometimes!) They see the Parkinson’s  patients in rooms off the narrowest corridor you can imagine: not only that, but they use the corridor as a waiting area – so you can imagine what it’s like, seated Parkinson’s sufferers at all sorts of angles: coats, bags, arms, legs and sticks poking out everywhere, so the newly-called patient has to negotiate this obstacle course before they can take their seat – if  there is one – adjacent to their specialist’s consulting room. Crazy! Do they do it on purpose?

 © Andy Daly  2010