Well, if I ever needed an illustration of what my life would be like without my Deep Brain Stimulation (DBS) set up, I had one yesterday.

And it wasn’t pretty.

But let’s start at the beginning.

Last week I got a call from The Functional Neurosurgery Department at The National Hospital For Neurology And Neurosurgery, Queen Square, London. They were calling to see if I’d be interested in helping them out with some tests. They are doing some research into the unwanted side effects of DBS, notably twitching or similar muscle movement in the lips, and the hand.

Of course I said yes.

It means a lot to help out, if only a small way, the team who have been so helpful to me.

A brief reminder about DBS. It involves implanting 2 electrodes deep into the brain, which are cabled to a battery and pulse generator implanted in the chest cavity. When properly set up, the pulse generator sends current to the electrodes  and the stimulation of the pathways in the Subthalamic Nucleus it causes are able in successful cases, to ease Parkinsonian symptoms.

Yesterday’s task, as I understand it was for the team to make some recordings of muscle activity with my DBS settings turned off and, then using one lead only (ie. one side of the brain) increase the amplitude in increments of one volt at a time. To capure this I had numerous electrodes stuck on my face my hands. Now, I’m no expert but it seemed these were connected to what looked like a 1970’s Moog synthesizer: a huge piece of equipment, favoured by Prog Rockers like Keith Emerson and Rick Wakeman. Which is not as daffy as it sounds if you think about it, the synthesizer’s job being to take white noise and shape it by altering its wave patterns and other parameters to create electrical impulses which can be converted to sound.

Robert Moog with Modular Synthesizer. It would fit on a credit card now.

The equipment yesterday was doing pretty much the same thing, kind of in reverse picking up electrical impulses coming from my brain which have been shaped by the DBS settings and converting them to wave patterns (and presumably sound as well if required) which can be viewed on a computer, and recorded along with physiological changes in the patient, The brain, ably assisted by the implanted Impulse Generator under my collarbone, playing the role of synthesizer

We got going after a few teething problems which including getting the electrodes to give a clear read out. You’ll be pleased to hear that trying to solve this problem included turning the equipment off then turning it on again! Which was a strangely comforting thing to see.

Equipment for recording brain activity. You see what I mean?

As the tests progressed, I fairly soon went into an ‘off’ state characterised by lack of movement, and ridgidity . It is so difficult to describe what this is like. I am unable to move – even to shuffle back into the seat so I am comfortable. I can’t hold a cup of water, it has to be ‘fed’ to me. I am as helpless as a newborn baby. It doesn’t hurt as such, but it is extremely uncomfortable. This is what I would be like without the DBS. I would need constant care, would lose any Independence I enjoy, plus I would be having to take ever larger amounts of anti-Parkinson’s drugs. Drugs which have some scary side effects, which include hallucinations, impulse control disorders and dyskenesias (uncontrollable movements)

After about an hour and a half, the team had got some successful recordings, with twitching coming in around 6 – 7 volts. My settings were restored and I slowly come back to life, able to talk and smile again. Such sessions always leave me exhausted, but a measure of how far I’ve come in the 3 years since the op. Is that I made way back home on the rush hour tube, rather than take the cab the hospital offered me.

It really is remarkable, the difference DBS has made , and it is a technique which is constantly evolving. It is being used in the treatment of Cerebral Palsy, Tourette’s Syndrome, Depression and Migrane nowfor instance. For my money it represents the way forward in treating Parkinson’s in a cost effective way.
Sadly it has no effect on the tendency to compose or listen to Prog Rock.

The great H R Giger’s sleeve design for ELP’s ‘Brain Salad Surgery’

© Andy Daly 2014