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.
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
always helps to know what your going through my friend and get a better understanding of your position in it all, no thing that hasn’t changed is that friends and family continue to love you for who your are my friend.
that is supposed to say one thing that hasn’t changed, and thats another I am still shit at spelling x
Hey Murph. How’s it going? I’m all for creative spelling so don’t worry about that!
Thank you for this article Andy. You already had Parkinson’s when Rob and I first met you and Marion in Tuscany (and again at St.Ives🎈), so we have never known you without it. You have drawn the short straw. It must be absolutely bloody awful, especially for you but also for your family. The rest of us have no idea, even with the help of your honest account. As you probably know, we lucky ones feel guilty that we are – at least for the time being – spared. Also, anything I say might sound patronising. But I will say it anyway. I admire you for coping with it in all its ghastliness and for making the effort to amuse us regularly with your blogs. Thanks and please carry on writing.
Thanks for the kind words, Maggie. They mean a lot. We have many happy memories of Tuscanny and St Ives and the times we shared and laughed (mainly at other people’s expense it has to be said)I am Glad that something useful comes out of all this rubbish I write. Hope to see you soon.
Thanks for sharing this!