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



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.