Do neurologists dance?
A personal experience of Parkinson's disease & MDMA
By Tim Lawrence
Standing in the club with thumping music claiming the air, I was suddenly aware that I was totally still. I felt and looked completely normal. No big deal for you, perhaps, but, for me, it was a revelation.
An hour and a half earlier I had taken an Ecstasy tablet. When I'd taken it, my body had been twitching uncontrollably - the unwelcome side effect of the drug I must take for the Parkinson's disease that had been diagnosed in 1995. And now, the twitching movements had stopped.
But it didn't occur to me that Ecstasy was involved in this novel situation. I simply enjoyed the experience and blended in with the others; dancing and feeling the music like a long-lost friend.
That was in 1997 - two years after I had been told that I had an illness which usually hits the elderly; for which there is only limited treatment, and no cure. Slowly, but surely, the condition will freeze my body, but probably leave my mind intact.
I can trace this particular 'terrorist' in my body back to a single incident - that of getting on a bus, as I held my dog by his lead in my right hand and was about to pay the driver with my left. A perfunctory act which was suddenly made near impossible by my thumb's refusal to co-operate with the signals it was being sent from nerve central.
At that particular juncture I was more concerned with holding up the other occupants than questioning, so I merely switched roles between hands and proceeded with the journey, making a vague acknowledgement that my thumb was a bit stiff that day.
The next occasion was carrying shopping. I noticed that whenever my left arm was holding bags, it would not compensate for width and I'd find the bags banging against my left knee. Once I consciously 'switched' on the relevant muscles, normality would resume - until my attention wandered and back it would go. If I was carrying soft fruit this was mildly annoying, arriving home with the beginnings of a fruit salad in the bag. The same switch as before on the bus and my right arm would carry out the tasks it was born to do.
Somewhere between my brain and my arm, the signals were being ambushed.
This was around 1992/3. For the next two years a gradual creeping inertia made itself apparent. It was only on my left side, though, and, with my left leg joining the internal protest, I was in danger of experiencing life walking in circles.
Work was becoming increasingly difficult - as a stunt performer, symmetry of movement and response times are more than basic requirements of a body's daily exertions - they are paramount. However, it was paradoxically the more measured movements that gave me problems, the so-called 'fast reaction' muscles were pretty much on cue. Much of film/TV work is spent in a 'hurry up and wait' mode, so the hours between shot set-ups and when required for 'action' were always the most difficult - I employed elaborate methods to give a semblance of symmetrical normality. I'd deliberately scratch an imaginary itch with my left hand periodically, when sitting around in groups; when a tremor was visible and remarked on, I'd complain of being cold.
I'd had an MRI scan - or to give it its full title, a 'Magnetic Resonance Imaging' scan. At the time this particular consultant neurologist must have been moonlighting from another job because he failed to register the early symptoms that I now know are pretty much standard, so for a further period I experienced the same gradual deterioration but in the knowledge that my brain was 'normal'.
I can remember saying to friends that if I had a name for what was becoming a very obvious problem then I'd know what to fight. A damaged shoulder from an early motorbike accident had been a misleading contender for the left arm immobility, however the extension of this to my whole left side invalidated this theory as far as I was concerned.
August 1995. I get my request for a 'name'. Unfortunately, after completing another MRI scan and taking part in an L-dopa test (L-dopa being the main Parkinson drug treatment), which I responded to in that I experienced improved dexterity and movement, it wasn't a name I wanted.
The English language is peppered with apt and apposite expressions for any occasion. When I was informed that what I had ". . . fell within the range of Parkinson's disease", I was mindful of "Be very careful what you ask for, because you just might get it."
No! No! That's not a name I can deal with! I wanted a name that had a quick course of antibiotics and come back in six months to see it all cleared up attached as the remedy - not this horrendous term with all its associated images of human jellies, drooling and incapable - a slow, wobbling descent to a physical hell.
How could I fight this?
The tube journey back to my mother's flat from the hospital and its portent of a doomed life was spent in complete desolation, damming the floodgates of tears as best I could. Outwardly, it wasn't hard, I was on the Circle line and no humans interact in those carriages.
The catalyst of speaking out loud to my mother's enquiry, thereby aligning myself to the disease for the first time, was the fissure too far and I let it all go an gut-wrenching sobs. My life was over.
I'll always remember that time frame. 30 minutes was all it took to make an extremely profound shift in my mindset - or rather, for my internal dialogue to be heard. Quite simply it said, "You know what to do". I did.
Four and a half years spent in a relationship with someone who was not only a natural health therapist, but who availed herself of arguably the best nutritional and metaphysical teachers on the planet today had given me firsthand insight into a way of 'being' - a template for going beyond restriction that came from strength and choosing not to be an 'unlucky victim.'
In the Chinese language, there is only one word for both Catastrophe and Opportunity.
I've yet to discover the linguistic truth of that incredibly profound statement but in the end it doesn't matter: what the notion imparts in meaning far outweighs any authenticity. After being diagnosed with Parkinson's disease I have learned the value of that choice of perspective and, in the challenging years that have followed, I've endeavoured to apply an opportunistic outlook to a personal tragedy.
It has by no stretch of the imagination been easy. There have been setbacks - crushing emotional and physical depths to endure that are ongoing. What this outlook becomes is an overall template, a bit like viewing an oil painting close-up - at first no more than an ugly, chaotic mess of lumpy colour, with the paint itself dry and cracked. Step back, create distance, maybe even detach from the subject and the recognisable, awe-inspiring masterpiece is revealed. I guess then the next choice is made - are you looking at the Mona Lisa, or one of the nightmare visions of Hieronymous Bosch?
By 1997, most of my waking hours were plagued by what doctors call dyskinesias - twitching, spasmodic, involuntary, sometimes violent movements of the body's muscles, over which the brain has absolutely no control. They are a progressive side effect of L-DOPA - the medication for Parkinson's disease that I had been taking for about a year. This neurological 'terrorist' was confined to the lefthand side of my body and, when experiencing these wild attacks, it was as if some manic, speed-crazed tap-dancer had possessed one half of me. Worse, this hectic hoofer would be on some kind of charity 'tap-a-thon' - able to sustain this frenetic activity for hours, leaving my muscles in a state beyond tiredness.
At the other extreme was the Parkinson's itself, which became frighteningly obvious on the increasingly-frequent occasions when the L-DOPA didn't work. It immobilised me to the point where I could not wipe tears from my face. Even my blood became heavy.
So now imagine a moment in time - a physical oasis - where I can move fluidly again.. This is what happens when I take Ecstasy. I can trust my body once more to do all I ask of it. For those few hours I am in state of symmetry that goes completely unnoticed by those around me who are ignorant to my condition. I am normal.
This experience has been so profound that for fleeting moments I have been able to forget there is anything wrong with me; that I have Parkinson's. They are incredible flashes - not even reality rushing back in to remind me can detract from those peaks of body consciousness.
I have taken Ecstasy occasionally for some years, mostly when I go to clubs with friends, perhaps twice a month. I don't drink much and I prefer the effect of Ecstasy, I am totally aware and experience empathic feelings for all those around me - including strangers - something that alcohol fails to deliver. As to the harm I could be doing to myself, I offer these two experiences of drugs I have been prescribed.
Tolcapone was supposed to improve the efficiency of L-DOPA and there were times when it worked brilliantly, giving me four to five hours of relative fluidity. But at other times it magnified the twitching 15 or 20 times - no exaggeration. It made my body jack-knife and convulse, the scale of which is almost impossible to imagine. My head would violently jerk from side to side. My muscles threatened to rip from bone, such was the ferocity. One attack lasted nearly nine hours.
After a year or so, I was taken off it. Why? Because of the 80 - 100,000 patients that had been prescribed tolcapone, four had developed hepatitis and three had died.
Then there was Ropinirole.. Side effects? Well, in the early stages, nausea, dizzy spells and that's about it. . . until you get to the upper level of daily dosage when you might experience a psychotic episode, which is hardly worth mentioning, so my doctors didn't.
I tilted headlong into a full-on bout of insanity. I was convinced that cameras and listening devices had been secreted around my flat by a warped, voyeuristic neighbour. I heard plotting voices outside my head and I began to answer them - also outside my head, out loud. It was the scariest seven days of my life. If not for loyal, close friends and very understanding neighbours, I could have been committed. But, fortunately, a worried friend called my Parkinson's nurse who took me off the drug immediately. The paranoid delusions stopped immediately too.
Then, a few weeks later, more cameras and listening devices arrived. This time, though, they were real.
A friend of mine, Mandy, had told a friend of hers - documentary filmmaker Jemima Harrison - about my plans to put myself forward for a new transplant procedure in Spain. The Spanish trial fell through, but Jemima still came to see me and it was during a chat with her that I mentioned the strange effect Ecstasy had on me.
Events moved swiftly from there. Jemima's intuition told her there was a fantastic story here and, being an ex-journalist, she knew how to research and who to speak to. However it was to her credit that, until I requested the session in the gym, she and the rest of the crew were taking this all on trust.
There were no doubts on my part - although the day they filmed me in the gym didn't start on a promising note. Sometimes, the L-DOPA I am given to get me moving doesn't work. That morning, the crew found me on my living room floor unable to move, with the affected left side of my body tremoring. Within minutes, they were then treated to the other extreme - the wild, writhing movements caused when the medication kicks in. I don't suppose it inspired much confidence in what I was claiming.
But, at the gym, the metamorphosis was incredible. Within an hour of taking Ecstasy in combination with L-DOPA, I no longer needed the stick for support and walked in past the open mouths of the crew.
What followed - for me as well as everyone else - was a waking dream. To understand, I have to try and convey what it's like to have Parkinson's Disease. First, imagine having weights attached to every limb, every finger, every part of your body. And then swap those weights for powerful elastic bands, attached to a revolving crankshaft, pulling and releasing erratically. That's what every day is like for me - with my body flipping constantly between these two extremes.
I am sure it is devastating for everyone and, for me, it was especially so. I was a stuntman. I used to be able to do back-flips, back somersaults, hand-stands - and more. Without warning or my consent, the ability to do these complex moves was taken from me. More simple movements like walking, running, changing direction - even using the bathroom - have themselves become complex, sometimes involving the assistance of others.
Now imagine that, for a few hours, you have all that capability back again - the absolute trust in your body's muscles to deliver on demand, in symmetry, once more. It is beyond words.
The impact of what happened in the gym was not lost on all those that saw the footage. At Hammersmith hospital there was a real desire to ascertain exactly what was going on in my brain and the first thought was that Ecstasy must be enhancing the production of dopamine - the brain chemical I am missing.
I agreed to undergo two scans with an injected radioactive tracer that would 'attach' itself to dopamine and therefore display any increase. The first one would be a 'base' line - in that I would have no medication whatsoever - to show my own natural, though depleted, output.
After 90 minutes of lying still in the machine and some three hours into no medication at all, I had muscle cramps and could barely move. I was helped into a wheelchair, thankful to hear the 'Classic Rock' music tape that had kindly but misguidedly been played for my benefit receding into the distance.
For the second scan the following day (for which I brought my own music) I again took none of my prescribed drugs but this time took an Ecstasy tablet before I got to the hospital. It was the first time I had tried Ecstasy on its own without L-DOPA and, to everyone's surprise, including my own, I was able to rise unaided and walk into the next room to perform some basic dexterity tests. Ecstasy alone gave me about 40% mobility.
Curiouser still were the results: the scans revealed no increased dopamine activity in my brain .
In fact, Ecstasy works mainly via a different brain chemical - serotonin. Before I came along, few people thought serotonin had anything to do with movement, so my experience has stirred things up a bit. And, amazingly, the Manchester scientists featured in the film are now confident they can develop a new, serotonin-based treatment for Parkinson's - a drug which isn't Ecstasy but works in a similar way.
The outcome of a placebo test I later volunteered to do revealed that the phenomenal effect of Ecstasy is wholly reliable. I know this, because I lived with it for about three years and enjoyed the physical oasis it gave me.
Credit has to be given to the bravery of others involved - in particular Jemima, the Horizon documentary's director/producer, because she pushed the story through some initially closed doors and has contributed in no small way to what might result in a breakthrough treatment for Parkinson's.
But for a chance remark in the right place, the effect of Ecstasy on the distressing side effects of L-DOPA would have remained unnoticed and unheard - something only myself and a few friends would have known about.
For me, Ecstasy simply meant a few hours where I could forget I had Parkinson's. It hadn't occurred to me that I had stumbled on something so important. How do I feel about it?
The notion that this is historical has a novelty feel to it - I guess when the new treatment becomes available I'll have a better perspective. The fact that I've made scientists excited makes me smile a bit. The fact that I could have contributed to the ease of suffering, for thousands of Parkinson's patients the world over humbles me a lot.
Its now over two years since those amazing accidental discoveries were made public - behind a seeming silence there has been much activity and progression. What I have found most incredible and humbling on a personal level is that I have still been recognised for my part in the documentary, from people stopping me while shopping to doormen at clubs - one after making the connection and my sheepish acknowledgement, held open the door for me with a knowing grin and wished me a good 'e'-vening!
As far as the Manchester team were concerned, their efforts to mimic and find a compound that could tease the mobility circuits within serotonin were unsuccessful. This meant applying to the Home Office for permission to use MDMA directly and then testing it for the same results that I'd experienced. This they achieved and it is now a painstaking search for the correct neurological receptors to once again stimulate without exposure to potential neurotoxicity which it is feared that prolonged use would subject a person to. New receptors are being discovered almost daily, so this process may not be as long as it sounds.
My use of the drug has declined in direct proportion to the improvements both physical and mental that I have achieved. I no longer find myself having to rely on the inclusion of MDMA in deciding whether or not I will go out clubbing. This marked improvement is based upon a simple belief that the brain has regenerative powers, just as in the same way that the body has. It is a gradual process and is documented in a book I am writing called Fifty Ways to Enjoy Parkinson's.
© Tim Lawrence 2003