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