Wednesday, 12 August 2015

MISTAKES

It could be a mistake to write about this subject so I won't.

Friday, 24 July 2015

MY BRAIN

I find that, since last year, people have begun to question my mental capabilities e.g. asking if my extreme language has been caused by my illness or my medication or saying how forgetful l have been lately. I feel offended by this as if they're invading my brain, that they know more about me than I do - if they were talking about my bad leg, l wouldn't mind so much but, as it is my brain, they are striking at the very heart of me - or rather, the very brain of me. Am I slowly descending into the abyss? Is this the start of Dementia? Or am l reading more into this than is there? What is the Christian answer? Is God? Are God? 

" those beautiful soft, deep images had plunged into my brain and broken against the inside of my head like tears of velvet." Mm...

"I came away from our meeting feeling as if I had been lifted me up and thrown hard against a wall causing me to shatter into thousands of petals that floated and fell and then bled as the breeze dragged them across grit and dirt."

Well, maybe...

.....they were right to question this! Maybe I should see someone ("Vell, Meester Andrews, ve haf looked at your brain und ve haf come to ze conclusion zat it is very interesting but stupid") or maybe I shouldn't give a fuck what anybody thinks and just carry on making mistakes like everybody else does!!

I listened to The Goon Show last night - you think I'm crazy? You should have heard Henry Crun and Min Bannister trying to outdo each other, singing sea shanties.

Wednesday, 22 July 2015

SURVIVING A SHIT DAY

SURVIVING A SHIT DAY

  I have been waiting for someone like you
Who knows well the path that I follow
Who recognises the person I was, am, will be
Yesterday, today and tomorrow.

I turned the page and saw the silent sea
In all its grand and glorious hues;
I saw you and me catching our breath,
In its greens, its greys and blues.

I watch as the emptiness drains away,
Taking before it the dirt and scum
Which dribbles through rusted holes,
Whilst men sweat and boast in the sun.

Now you are here as the swallows fly
To search for winter warmth,
Not caring who they leave behind
As they boldly venture forth.

I have been waiting here for you;
I know well your grief and sorrow.
No need to explain what is in your mind,
No need. No time to borrow.

Shit, shit, shit, shit, shit, shit.

Tuesday, 21 July 2015

I"M DOWN


You telling lies, thinking I can't see,
You don't cry 'cos you're laughing at me
I'm down

Yep, I'm down but I don't know why. I think it is because everything seems to be crowding in on me. My money running out in a few months time. My creative block seems to have returned. The bloody scaffolding still outside reminding me that the fucking builder hasn't rebuilt the balcony which he destroyed because I wasn't on the ball enough. I'm still overweight. England got dumped by Australia in the Test Match. I'm tired. Hang on - enough of this. Get a grip. 

We're all  alone and there's nobody else,
You still moan, "Keep your hands to yourself"
I'm down.
                                                        - John Lennon & Paul McCartney

Friday, 29 May 2015

THE BEE by Olivia Poppy Coles

The room was warm from the sun which had begun to break through the scudding grey clouds which had followed me into London. Poppy asked if I was warm enough as she leaned over the setee to open the door leading out into the garden where the pale and the dark of the stripes on the lawn glistened as the rain from the recent shower drained through the rich green of the grass into the earth below. I welcomed the puff of air from the open door; not so the honey bee which flew into the room, confused by the sudden change of atmosphere. Poppy did not hesitate; she picked up a glass and some paper and stepped onto a chair but the bee escaped this first rescue attempt, buzzing, not with menace but with exasperation and fear. Again, Poppy did not pause and, as I watched her, it was as if everything went into slow motion and I felt that familiar tinge of envy as her young limbs climbed onto the furniture, sure of their balance, confident of their strength as she caught the bee in the glass and then set it free outside. Having Parkinson's Disease makes me appreciate my body and its abilities so much more but at the same time the combination of ageing and illness makes me aware of my mortality and I grieve but, 

but, 

life carries on

...and on. 

The bee could have only been there for a few seconds, the time it takes for a tear to roll down a cheek. A thought brushed through my mind - how proud her mother and father would be to see their daughter save that little frightened creature and how proud I am of my own children when they show their compassion by such a simple, selfless act. Meeting vibrant young people like Poppy informs me. It confirms that the present and the future is in good hands.

Life carries on
In the people I meet
In everyone that's out on the street
In all the dogs and cats
In the flies and rats
In the rot and the rust
In the ashes and the dust
Life carries on and on and on and on
Life carries on and on and on

                    - Peter Gabriel

Tuesday, 14 April 2015

DEEP BRAIN STIMULATION

(c) Robert Ludlow

Well, here I am almost a year on and what difference has DBS made to me? An enormous difference. I dread to think what I would have been struggling with by now. People who know me say that the improvement is extraordinary and Jane and the kids say that I am now more like how I used to be before I got Parkinson's and I think that is where one finds the rub or, at least, a bit of it. There is absolutely no doubt that I am performing well physically - well, performing better physically. Apart from when I am particularly tired, I don't have any freezing any more. I don't have to wait for my medication to kick in before I can move in the morning. There is no real tremor. 


So, what if anything is wrong? Many years ago when I was first diagnosed, I read briefly about DBS and raised this with my neurologist at the time. He was not a fan and said that he felt it was a  clumsy way of dealing with Parkinson's in that it was concentrating on a specific area of the brain with not a great deal of accuracy, that it did not really deal with the "cognitive" issues and that one could achieve as much with medication. To be fair, since then, the procedure has been developed and, for example, they are much more accurate these days in that they no longer need the patient to be awake to gauge how accurate their placement of the electrodes has been. This gives a greater guarantee of success but the question of the cognitive aspect remains and indeed the psychological aftermath and it is this that has caused me the most difficulty since I left hospital. 


(c) Robert Ludlow


Before I went in, I was flying creatively even if the physical execution of my creative pursuits was problematical. In those days, I was reaching the point where my pills would only give me four hours of peak performance each day which meant that the remaining waking hours were a really struggle but, if I succeeded, it brought with it a real sense of achievement and remember I would not be happy unless whatever I was doing was as good as someone without PD. The last thing I wanted was people saying "Well, considering he's got Parkinson's........" So this resistance by the illness produced a determination to succeed on every possible level whereas now that I am pretty good most of the time, I do not have the luxury of that thing to push against to produce my own incentive to create a masterpiece.  Also, the dosage of my Levadopa drug has been almost halved and therefore the level of Dopamine in my body is not as high as before and it is Dopamine which aids and feeds one's creativity. The reduction of the dosage of Levadopa as well as the Mirapexin has also had further repercussions. I have said that before I went into hospital, I would be on say 90% capacity in the hour following the taking of Levadopa and this would gradually plummet to say 20%. Two things here; first, I now no longer get the "high" from zooming up  from 20% to 90%. That rush was great and, when I got there at 90%, I was King. Secondly, I now amble along at say, 80% all the time. I am not in any way ungrateful for all this because I know how bad I was and how much worse I would be now and so, there is no way I would go back to my state 12 months ago. 


So what of the other effects of DBS? I liken my pre DBS state to me having a huge lake in front of me and I am allowed only to play in the tiny area in the corner which has been fenced off for me. I came out of hospital and walked up to the edge of the lake to be informed that I was now permitted to play in the whole lake - the fencing had been removed. Whoooaaa! What? Not easy to cope with because my inner voice says ''well, there it is the whole lake, what great work you can produce now? Why it's almost like not having PD! Yes, you've got your Disabled Rail Card because you're...erm...disabled. Wow, that was a good film although, bearing in mind you're so well, it could have been a bit better. Dear Photographer, Please photograph me, I have Parkinson's - have you? You're not shaking at all. I would never have known......." Etc, etc. Confidence went out of the window. I yearned to be looked after, to be cuddled and carried - I missed the hospital. 


(c) Robert Ludlow


Those two weeks were glorious. In my own room, I never ventured on to the ward or at least, very rarely. I had my music and my films, my visitors, my specialist nurses, my regular meals, my blood pressure was taken, my temperature was taken, painkillers were offered, people came in to see me, nurses looked after me. I had had brain surgery so of course they were looking after me. In the few weeks after I came out, I luxuriated in this feeling of bliss, of feeling so much better without even trying - it was wonderful but slowly this challenge rose up and this thing I had been fighting against for the last eight years was no longer there - it was hiding. I had to take hold of my life and be proactive. I had to do it now. I started seeing photographers again and that helped because it was like it was before only this time I didn't have to time it to my drugs. So, sort of back to abnormal. But I started to put on weight, my ankles began to ache, I said the wrong things to people, I felt sorry for myself. I was still getting old and felt it. BUT slowly, slowly, I am beginning to take a grip and relying on the real me to to shake myself out of this torpor.

Watch out now, take care, 

Beware of falling swingers
Dropping all around you
The pain that often mingles
In your fingertips
Beware of Darkness

Watch out now, take care
Beware of the thoughts that linger

Winding up inside your head
The hopelessness around you
In the dead of night

Beware of sadness

It can hit you
It can hurt you
Make you sore and what is more
That is not not what you are here for

                            
                            - George Harrison

Friday, 9 January 2015

I DON'T FEEL RIGHT


I don't feel right. I've lost my oomph, my creative waah! It has been a bit like this since my operation in May. I'm a bit fed up about it. I filmed a Zorro short today and I looked old and unalive if there is such a word. If there isn't then I feel dead between the ears. That's all for now.