admin, Author at Shaky Leadership

Bionic Man (Part 2 of 2)

By admin on Sunday, June 2, 2019

So I now require regular charging and need to avoid roundhouse kicks to the chin…

With the first probe nestled into its target location. Rob picked up my forearm – testing for rigidity. Amazingly, he could pick up some relaxing of tone immediately – even before the current had been switched on – a ‘leshioning effect’. He then slowly paced me through increasing levels of electricity being emitted by the electrode.

We needed to determine just how much amperage it would take to have a significant improvement – and how much I could handle before incapacitating side effects gripped me and made life unbearable. Rob started the ball rolling with 0.3mA. A tingling sensation, almost pleasant and not unlike a very mild pins and needles, surrounded my right foot.

Rob explained that when first turned on, the electricity can pulse a little, emitting more electricity before settling down. We waited patiently for 30 seconds to make sure it passed, and obligingly it began fading immediately. My right arm loosened. He asked me to make a fist with my left hand – which should not usually have an effect on your right side. However for me, this action of making a fist in one hand would always turn the other arm into that of the ‘tin man’ patiently awaiting Dorothy – at the mercy of the elements; with the oil can mockingly just out of reach.

I gave Mary a squeeze.

Rob’s smile confirmed what I could already feel. Still loose. I was beginning to enjoy myself. As we climbed through 2, 4, 6mA… I felt better and better.

It’s working.

This is amazing!

At each increment Rob had me concentrate on my body – carefully trying to take note of any difference, the smallest patch of numbness or tingling. We would then run through speech exercises to ensure I wasn’t suffering any impediment, which can be a common side effect when stimulating this part of the brain.

“Puh, puh, puh..me, me, me..kay, kay, kay…British constitution”.

Some finger co-ordination: touching my own finger tips together in sequence; touch his finger, touch my nose, finger, nose, finger, nose.

Finally my eye-tracking. “Keep your eyes on my finger, Todd”. His outstretched pointer finger leading my eyeballs, left then right, then left again. Too easy. Keep on cranking up the voltage!

Though, as life often relishes in reminding us, ‘all good things must come to an end.’

As we progressed further towards 8mA, I noticed the temperature climb. Subtly at first. Then exponentially. I broke into sweat and my confidence and comfort level came screaming back down to earth, crashing through the surface and tunneling towards the molten core.

“Please stop,” I begged as my plastic safety goggles fogged up.

Rob tried to reassure me, “We’re nearly finished”.

These following seconds were tough. At the time I couldn’t comprehend why they wouldn’t just turn the electrode off. But my feedback was providing Rob with further detail to triangulate the most perfect final location of the electrode. He hurriedly put me through my tests.

“Puh, puh, puh..me, me, me..kay, kay, kay…British constitution”.

It sounded as though this ‘Energiser bunny’ was given inferior batteries.

Finger….Nose…. Finger…Nose. Not sure if it is sweat or tears sliding down my flushed cheeks.

“Follow my finger.”

My eyes lagged with buffering akin to Netflix on the NBN.

Not for the first time, nor the last, today – I was left pondering Einstein’s theory of relativity. Surely it had been minutes or hours of discomfort not the seconds that the devious clock suggested.

Then miraculously, the oven switched off abruptly, as the electricity eased back and then switched off completely.

That was intense. I had no emotional capacity to feel anything other than relief. Though a glimmer of concern must have been alight in a dark corner somewhere in my mind.

‘Is this blindness going to be permanent?’ I wondered as I tried unsuccessfully to make out some faces in the room. I could not clear the fog that had engulfed the theatre. Like a mysterious mist hiding all manner of monsters, limited only to my imagination.

Something approached me from the left. If I could move my head, I might have shimmied back in fear. The sweat that my body had delivered so efficiently in its attempt to cool me seconds earlier, now clung to me like a damp, cold sheet. My shivering brought on shaking. Not a minute ago I was desperate to be released from the torment of being on fire. Now I shook, freezing cold and blind.

I could sense the figure reaching out toward my head, yet I was powerless to defend myself. I squeezed Mary once more and relented.

My anaesthetist lifted my goggles and I could smell the alcohol on the wipe, and as if with Jesus’ own spit and dirt combo; he cleared the fog on my plastic safety goggles and instructed for warm air to be blown between my sheets of a pretty amazing operating table.

“Okay, that’s the test probe done.” Rob’s face now as clear as ever. “Time to do it all again with the permanent electrode. Nearly half-way there Todd!”

The lights in the theatre blinked off, minimising any electrical interference and allowing for the best possible signals to be picked up by the equipment. As Matt once more positioned the electrode; this time, the one destined to become one with my brain; as my body, over time, would coat it with proteins,encouraging it to assimilate with the brain matter around it; and like a migrant worker completing their citizenship exam, it will become a welcome, functioning part of the whole.

Having a good indication from the first test probe. Rob was able to move quickly through the tolerable range of electricity, and before long I was back at my limits.

It grew hotter. Sweat emanated from every pore. My speech slowed. My eye tracking failed. So tired.

Once again, the odour of the alcohol wipe acted as smelling salts and my alertness lifted in harmony with the fog.

“Time to switch sides Todd. Matt will lock that lead in place and then there will need to be some more drilling”.

“Beautiful.” I lied – to myself more than anyone – although I was glad to see a few mouths turn slightly upward at the corners. One of the first management lessons I learned was “a happy worker is a good worker” -sage advice.

Despite the challenge of using different technology for the first time; Matt had my lead locked in place in no time. The pneumatic drill whirred to life.

A jet engine doesn’t quite describe the drilling in the right side of my skull. Instead the image of a helicopter comes to mind.

Still, I was left without ear protection and my head was being forced against the rotor mast.

This time there was room for more than only vibration and noise…

I have a filling in a molar at the top, right side of my jaw. I could feel it wriggle free.

The vibration and noise, though overwhelming to the senses, seemed to take a back seat, as every past negative dentist experience flooded my mind, mingling and moulding into a ball of orthodontic terror. That all too familiar pain of an exposed nerve radiated through my jaw up to the point of drilling and seemingly down through my body, yet also left and right. Like the points of a compass. I grimaced, and felt – rather than saw – my aneasthetist’s concern raise a notch as he edged closer.

Vibration, noise, shooting nerve pain…and then finally; silence.

“What’s the matter Todd?” The empathetic eyes of my anaesthetist, peering over his surgical mask added a mystical, almost telepathic quality to his question.

“I think I lost a filling.”

Although I was being honest, the absurdity of the moment yanked my sense of humour from behind the dark curtain in my mind; where it momentarily had retreated, curled itself up in a fetal position and rocked back and forth. I smiled and pushed the lingering pain from my thoughts, so very thankful to be untethered from the Boeing CH-47 Chinook.

The test probe was in place before I knew it, and Rob was once again walking me through the various tests, as the technician amped up the electrode.

Something was wrong.

My back arched, unnaturally. I grimaced with discomfort and I could hear myself begging for Rob to halt the procedure. As a feeling that I can only describe as that of fingernails dragging across the surface of a chalkboard (only amplified perhaps 100 fold) gripped me and for perhaps the first time I questioned whether this had all been the wrong choice. Rob squeezed my left hand and instructed for the technician to roll back the power, and as that most disturbing feeling graciously subsided, I became aware that I had lost my grip of Mary in my right hand.

I was left completely depleted. Physically and emotionally. I desperately wanted to yield to the building black thunderclouds of fatigue that had been storming toward me from the horizon. Once again, Rob intervened. He guided me to reserves I didn’t know existed, as he patiently explained what had happened.

My wonderfully unique, asymmetrical brain includes a subthalamic nucleus that is considerably smaller on the right side than the left. This region of the brain is surrounded by a bank of fibres and our brave scout electrode, had found itself nestled into these fibres causing the excruciating discomfort.

“This is why we want you to be awake Todd. Nothing on the scanners could have alerted us to what you were feeling. From your MRI data the electrode was perfectly positioned.”

I shuddered with disbelief at the thought of waking up with that feeling, and the fear and misunderstanding that would have been just as unbearable.

Matt and Rob then discussed very briefly the new co-ordinates, and buoyed by a deep sense of relief I shook off the fatigue and stepped forward with them, finally with an accurate understanding of what Rob had meant by me being an active participant in this surgery.

With the test probe farewelled, replaced by the second new permanent addition to my brain. The lights flickered off and I was once again treated to the very rare and remarkable audio experience that is listening to my own brain’s electrical activity.

Fatigue now clawed at the door, finding cracks and boring holes; determined to break through. My eyes struggled to stay open as I failed to follow Rob’s finger for the last time, my speech slurred and my co-ordination left my control. We had reached the limit.

Rob smiled, thrilled with the result; as Matt once again got to work with tidying up. Locking the lead into place, before placing my scalp back into position and stapling me up.

The white hot pain of a staple biting into place reminded me that my work here was done. There was no need for me to be conscious for the remainder of the procedure – they still needed to connect the wires down through my neck to a computer and battery in my chest just like Tony Stark.😉

“Do I need to be feeling this?” I enquired of Matt, who answered by calling out to my anaesthetist …

“KNOCK HIM OUT!”

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Bionic Man (part 1 of 2)

By admin on Saturday, May 25, 2019

“Risin’ up, back on the street
Did my time, took my chances”
– Survivor

I’ve decided that my desire to have some sense of continuity and timing to my posts, needs to take a back seat to sharing the phenomenal experience of last week…

How often are we presented with the opportunity to really look at and appreciate the amazing world we live in.

I perched on the edge of the uncomfortable vinyl mattress of the hospital bed; which despite its ability to raise or lower your legs, and to bring you closer to your lovingly prepared – no doubt – yet appetite suppressing display of food; holding you forcibly upright to minimise baked bean stains on the thin bedspreads which attempt to impersonate a doona, by inadequately covering an oversized bath towel and lying atop crisp, white sheets.

My wife sits in the designated supporter’s chair, that sadly is too often left empty in many other rooms. She shoots me a puzzled look, at what would have seemed an out of context smirk taking shape on my face, which when combined with my new, excessively short back and sides hair style, was likely coming off a little more creepy than I had intended. Before the moment could become awkward, the instantly recognisable beat started. Mandy’s puzzled look melted away into a soft chuckle, which erupted into an average yet purposeful shared rocking out to “Survivor’s – Eye of the tiger”.

The first technological marvel of the day, with no more than a mobile phone and a Spotify account we can carry with us the ability to soundtrack our lives. In the space of my short lifetime the leap from making mix-tapes by recording the radio on my brothers ‘ghettoblaster’ – to instantly streaming any one of millions of songs would be not even in the realm of possible science fiction – should I be able to attempt to explain to 12 year old me.

Our reality tv quality performance of ‘Eye of the tiger’ was cut short, by a last minute but welcome visit from my sister in law – ducking in before starting work – conveniently in the same building. Embarrassment was up there amongst many emotions, which somehow all seemed preferable to taking note of the ‘elephant in the room’, carrying satchels of fear, a grey sense of mortality and buckets of potential tears. Our embarrassed laugh was again abruptly interrupted, this time by the squeak of the wheelchair that beckoned for me to climb aboard, as hospital staff processed into the room. With the instruction given to Mandy to “Say your goodbyes” the elephant stampeded over her, sloshishing its saltwater cargo all over my scantily gowned shoulder.

My mindset was concreted in though, my determination steely if not cold. I had a quick cuddle and then made it clear, “It’s not goodbye. I’ll see you in a bit” and in the Spotify of my imagination, I cranked the volume up on ‘Eye of the tiger’. With slight of hand akin to a street magician, I palmed my relic of St Mary MacKillop, and climbed into the wheelchair, as though it were no more than a roller coaster cart at a theme park.

Perhaps a ghost train fits better, as I made my way up the corridor. I’m sure my imagination was in full flight, but it seemed as though every person we passed knew I was heading for surgery. Sad stares bore down on me, and I was reminded of a scene in ‘The Green Mile’; my ears pricked up almost expecting to hear someone holler: “Dead man walking”. I shook that picture out of my head – not helpful Todd.

We pulled up in the waiting bay outside imaging, where I was introduced to the first of many heroic characters – My anaesthetist and his assistant. They cleverly engaged me in conversation, achieving what I suspect were two goals.

1. To find out if there were any yet undisclosed pieces of information that might impact on the plans for administering any anaesthetics throughout the procedure.

2. (Probably most importantly) distract me as they located a suitable vein and inserted the first of many attachments to the backside of my left hand.

They were a great team and connected with me very quickly. Putting me at ease and bravely agreeing to help lighten the mood, as I again felt the caring but ominous gazes full of well-intentioned pity of onlookers as they wheeled me on into the CT scanning room. At this point the room resembled more of a Formula 1 pit, than a hospital room. A well organised and synchronised team scurried together, as I was rigged up into my head gear – a heavy ring that encircled my head with plastic ‘bullets’ that screwed right through the flesh securing it to my skull. The action of which was fore-shadowed by the nasty little pricks of local anaesthetic in six evenly spaced locations around my head.

Firmly screwed into my frame, I had a chance to take a load off and rest on what now seemed like my ‘bed away from bed’. As I moved in and out of the CT scanner, and it whirred around me, try as I might I could not keep still. Technicians tried their best to adjust me – time and time again, to the correct position, but it seemed each time they dashed off to escape the radiation, having been off my medication for 24 hours now, my neck would go into dystonia and cramp just enough to tug the frame out of alignment. Still as frustrating as that must have been, my apologies were met graciously and – although essentially untruthful, I was politely assured “No, it’s not your fault.”

Eventually it was decided that the scan was good enough (I suspect they gave up!) and like ‘Bran the Broken’ heading to lure the Night King; on I was wheeled flanked by those charged with protecting my life into theatre. Completely reliant on the team around me, my future now lay in the hands of the experts already steeling themselves for the battle.

As I eased myself out of the chair and nurses helped me onto the operating table that presented like an altar – the clear focus of the room, where careful preparations were metitculously taking place. My frame was clamped, and I felt my neck tug as I was locked into place. From this point, my head will not be able to adjust to any motion; presenting a steady and still target for my neurosurgeon. At the same time, by limiting my head’s ability to counter movement from my body, an unlikely seizure or other violent movement, would no doubt break my neck.

Like a wobbly tooth, I couldn’t help myself from testing the clamp out. I attempted to roll my head left and then right, up and then down. Sure enough the hardware did its job and I became aware that my field of vision was restricted to only what sliding my eyes along their horizontal and vertical planes could achieve. It was then that I spotted my Neurologist standing at a computer screen in the back corner of the room. His task at that time was to analyse the CT scan taken earlier, in conjunction with the pre-surgery high definition MRI scan, to create co-ordinates for my surgeon to guide him as he probed his way from the top of my skull, through an asteroid field of vital brain functions, on the way down to the target zone, millimeters away from my brain stem.

Some memories are cloudy, though I’m sure it was ‘Gun’s n Roses – Knocking on heaven’s door’ that prompted me to roll my eyes toward my Anaesthetist, “Who’s playlist is this?” I enquired, silmultaneously appreciating the selection so far, for their quality and their irony.

“It’s Matt’s music” he responded, and although a tiny detail, the enormous weight of responsibility that sat squarely on the shoulders of my Neurosurgeon became clear to me. The consequences of a cough, a nervous twitch, a distraction…

On cue – Matt’s voice. “Okay Todd. This is probably the most painful part. It will sting a bit as I put some local in…” A good description in the end. I pictured the needle penetrating my scalp and spraying the anesthetic from left to right. My jaw tightened and I grimaced through the sting, I adjusted the volume of the music in my head ‘…it’s the thrill of the fight, Risin’ up to the challenge of our rival’.

As I prepared myself for more injections, the delay was unnerving me. It must have been 20 or more seconds since the last jab. I cautiously opened one eye and then the other, before risking the question to my anesthetist “Is that it?’ Is he finished with the local?”

“Yep – all done Todd.” I couldn’t help but be flooded with renewed hope. If that was the hardest bit, I don’t know what all the fuss is over… I clearly misunderstood Matt’s comment.

‘Most painful’ and ‘hardest’ do not always correlate.

“I’m still at least 10 minutes away” I sensed a little irritation in my Neurologist’s voice as the volume in the room dropped a level. I was caught between wanting my team to take their time – no need to rush this – but also, the niggling thought of ‘How long does local last?’

“Ok, that’s it.” Rob’s targeting work in the corner was done, explaining to someone that the angle of the CT scan was out of alignment (due to my cramping neck) adding a layer of complexity to his critical targeting co-ordinates. He relayed his list of co-ordinates to Matt, via an assistant who was transcribing on a slightly out of view whiteboard. Matt was also busy. He made a long c – shaped incision in my numbed scalp and folded it back on itself revealing my skull. I then mentally pictured him selecting his drill; as others went to work, fixing a drop sheet from the ceiling down to the front, still attached part of my scalp, to provide a barrier between the ‘messy side’ which was Matt’s domain; and the parallel dimension that I could see, which bore no resemblance to the confronting scene behind me. ‘Rob’s domain’ was clear of gore and as he settled in beside me gripping my hand with one of his own and resting his other reassuringly on my leg. My consciousness was entirely on this side of the dropsheet and would remain there for the rest of the show, effectively as far as fear and trauma goes, it wasn’t hard to distract the menacing thoughts of my bared skull, blood, and drilling; as Rob stole my focus, talking me through each step, and his clear articulation of his expert understanding of every detail, kept me where I needed to be – on his side of the dropsheet.

It’s time. Rob shares with me that Matt will begin by drilling into the left side of my skull and as the left brain controls the right side of our bodies, we would be focussing on just that. As he made his way around to my right, I subconsciously transferred Mary into my left hand and tightened my grip. I was warned that the drill would be loud and unpleasant but would be over in a matter of minutes. In my mind I was nodding ‘…and the last known survivor stalks his prey in the night’ – though of course my head was perfectly still…Let’s do this.

Words could never adequately prepare me for the drilling. It started as one would expect with the sound of a pneumatic drill – a little too close to the ear but not terribly uncomfortable. Then, the drill bit made contact with bone.

Nothing else in the world existed.

My eyes instinctively closed. All was black.

My whole skeleton vibrated intensely and I might as well have been strapped to the engine of a Boeing 747. The only thing capable of taking the attention of my senses from the vibration, was the noise. The vibration. The noise. Maybe an exploding 747 engine…

Long minutes elapsed. The pilot relaxed the throttle. And the sounds of the theatre – able to compete again – ushered in reality.

“Wow, yeah…that was loud.” An ironic smile escaped me, knowing that there was no way to accurately interpret my perspective – in English, at least.

“Gee you have a thick skull!” Matt offered from behind the dropsheet, yeilding a broadening of my grin to near ‘Cheshire’ status. My brothers would have loved that. He then went about tidying up the hole with an instrument not requiring a jet engine; and inserting the first wire which would act as both a scout and electrical test, expertly piloted by Matt, to its target location deep into my sub-thalamic nucleus. Thankfully as pain free as predicted.

Rob’s look was intense, demanding my attention. He carefully and deliberately reminded me of my role. With all the imaging in the world and with the experience of hundreds of these operations behind them, it was only me who could report feelings of discomfort, tingling, numbness, or any sign that the electrode could be causing unwanted side-effects; or alert Rob to the need to adjust the target location – this was the whole purpose of staying awake. Although already tiring I committed myself to the highest level of alert that I could muster.

My PD Story...

Alien Abduction

By admin on Sunday, April 14, 2019

“Have you had an MRI before, Todd?” The emerald green outer appearance of the figure standing before me, complimented the beige interior of the alien examination room. Dim lighting exaggerated the blue neon glow of the digital displays. In this almost relaxing decor, I was too easily coerced over to the cold gurney, that was poised as if floating in front of what was as ominous as it was enormous, cylindrical machine.

“No, I’ve had a few other scans, but not an MRI.” I allowed my imaginative lens to clear into reality and took in the simple design of the imaging device. It’s smooth plastic exterior was now not threatening at all and combined with the quiet stillness of the dimly lit room, invited me to exhale slowly, and prepare to rest. I waved away the locomotions of thoughts rushing through the station of my mind, intending to use this time presenting, as a blessing – time to process this highly unusual day.

“Nothing to worry about” interrupted the nurse, her green scrubs rustling as she prepared the gurney with a standard hospital sheet, then opened her hand gesturing me to sit. “It makes a bit of noise and will take a little time, but you’ll be fine, just remember to keep still.”

‘That would be a whole lot easier if I hadn’t just been told I had Parkinson’s disease ’ I thought to myself, almost allowing a wry smile – It was chased quickly away though by my hyper awareness to every tremor, twitch or other involuntary movement my body was producing – or perhaps my mind was creating psychosomatically.

I followed the instructions and lay down on the flat surface as the nurse, slipped a pillow under my legs and gently adjusted my head into the correct position. “Would you like some headphones to listen to the radio?”

A rookie MRI mistake followed. “No thanks, I’d prefer not to.” I didn’t want this quiet time, to be interrupted by whichever ‘drive you home’ radio clones they were tuned into.

“Okay” the nurse uttered as she and the technician proceeded to cage my head with a claustrophobia inducing, plastic ceremonial headpiece; stuffing it like the business end of a Christmas turkey with cushioning, whilst tightening the contraption till my ears went numb.

“Is that too tight?”

“No.” My damned bravado decided to man the controls of my vocal system whilst my common sense was preoccupied somewhere over the rainbow.

“I’m just placing something in your hand, Todd – if at any time you would like us to stop, or you need a break just give it a squeeze.”

Mr Bravado again “No problem.” – ‘They’ll wheel me out of this contraption stone cold dead before I press for help…’

With my pulse pounding away in my crushed earlobes, and an over exuberant tremor; the nurse had me sliding into the alien tech environment of the scanner. Two thoughts competed for my attention as I came to a halt inside the MRI scanner.

“I wish they had tilted my head forward a bit, I can hardly breathe…” along with;

“Was I meant to take my wedding ring off?”

“We are ready to start Todd, the machine will make some noise as it warms up and then we will begin, are you ok?” The question seemed to be one required rather than authentic, evidenced by the preemptive turning and heading for the apparent safety behind the glass. Whatever I am in for here, it’s not a place my new friends want to be!

Slightly agitated now, my last two thoughts were ushered out of my underperforming consciousness by a surly ‘Why wouldn’t I be?’ – which thankfully translated on it’s way out as “Yes, I am fine thanks.”

I closed my eyes and contemplated that a nap was probably my best option here. It had been a heck of a day, having left my wife at home, still wiping away her tears, trying to act normally, as she began preparing our girl’s dinner, less than an hour ago. I took a deep breath and exhaled, slowly, once again.

The scanner whirred to life with the gentle hum of a construction site, swarming with tradies, fighting each other to reach the shared deadline that must be rapidly approaching. I could hear an excavator slicing through concrete and rock then dropping it’s bucket load onto a pile of corrugated iron. A crane’s steel cable strained to pick up columns of steel, producing a squeal along with the increasing revs of the engine as it laboured to create the extra torque required…

‘Well done, Todd. Enjoy the serenity. Who would want headphones, when you can sit back and chill, to the natural elegant tones of a construction site?’ Before I could get further involved in an argument with myself, the technician informed me that we were ready to begin and kindly reminded me once more the importance of keeping still!

I escaped into a self-constructed bunker in the depths of my consciousness where I laughed – rather than cry – at the unintended carelessness of the technician. I clenched my eyes tight and relinquished control of my body to my brain stem; that up until recently at least, had been successful enough at keeping my involuntary systems in harmony.

Bunkered down now, my breathing and my pulse, slowed to a gentle rhythm. My insistent impulse to swallow – which convinced me that any images captured would be shaken to a blur – kindly abated; yet still I was unable to escape completely from the excavation equipment. Alien beeps and honks now joined the chorus of offence, emanating from the MRI machine. It seemed to encroach ever closer into my personal space, like the walls of the garbage chute that very nearly made Princess Leia’s rescue attempt cataclysmic.

My wedding ring buzzed on my finger. A tingling warmth being created from the fine vibrations. I shuffled my hand as far down my side as I could, and felt it diminish enough to quiet my panic. Though this would surely be one of the most drawn out hours of my life – the opportunity for useful thought and reflection had now slipped off it’s perch and tumbled into oblivion.

When the cladded green technicians were finally content with my trauma, I emerged from the scanner, cloudy and shaken. An alien abduction and probing may well have been more comfortable and left me less confused. I sat on the edge of the gurney and sucked in a few oxygen laden breaths. As muddled as ever, one moment of clarity arose eloquently to make it’s point. ‘This is just the start of what is going to be one crazy ride.’ Though far from my original intention, I had no idea as to where to next, the swirling of my mind and thoughts, acted to dissolve my need to control this new uncharted direction of my life. I exhaled once again – this time with a sense of relief – que sera, sera.

My PD Story...

Luck or Grace? Act 1

By admin on Tuesday, April 2, 2019

Bradykinesia is a common symptom of Parkinson’s Disease. It translates literally from the Greek – Bradys: delayed, slow or tardy; and Kinesis: movement or motion.
Not quite the stereotypical shaking…it feels like moving through a viscous liquid.

As if by magical incantation, those words of pre-emptive diagnosis, (“I think you have Parkinson’s Disease”) lingering like the smell of dog excrement on a shoe; conjured Parkinsonism symptoms instantaneously.

The following moments could have easily taken place in the deepest depths of the ocean, where the increased pressure and aqueous solution slow our human movements down to an embarrassing, amateur-like attempt, to proceed through the foreign underwater landscape. All the while fish dart, dancing through the coral and weed, perfectly designed to be unencumbered with grace and speed in this terrain.

The invisible fluid wrapped around my legs trying desperately to hold me back, whilst it seeped into my skull and violated my thoughts, as I struggled onward to the reception desk. My left paw clung to the desk as though I could easily be swept away; whilst my right littered papers of instructions and procedures, that were well beyond my clouded mind’s capacity for cognition.

Thankfully the attending receptionist recognised what was, for me – a new and disturbing state of mind. A head full of information and questions fighting for attention, with all the manners of a parliamentary session; constructing around my common sense, an impenetrable barrier of befuddlement – and yet for her, what must likely be, an everyday opportunity for kindness. As though gifted with pentecostal abilities, she effortlessly translated my garbled, nonsensical response to “How can I help you?”

Gently Reshuffling my paperwork along the desk with meticulous precision; her calm demeanour acted to melt away my surrounding and intruding fog, bringing me back to the world that more closely resembled the one I understood.

‘I’ll look after these, Todd. But you best take this one straight to Medical Imaging. They are already booking for 6 months time so do that straight away…Todd, there’s a water dispenser at the end of the corridor. Have some water and follow the signage.”

I took the referral back from the receptionist, headed down the corridor and filled her wise prescription into a small, delicate and scrunchy white plastic cup. Not quite a full mouthful, I re-filled, took a breath, poured the second cup of cooled water down my throat and allowed my vision to sharpen on the sign that would direct me to Medical Imaging.

“We’re currently booking for August.” The new receptionist greeted me and collected the referral simultaneously. The gentle lift of her brow indicated that her attention had shifted to Professor Wilcox’s scrawled note at the top of the page.

Please book this in as soon as possible.

Her kind eyes looked back to what I can imagine to have been a pasty ghostlike shell of a man, stooped with a burden of fear and confusion. Time would certainly have appeared critically important, and the receptionist swooped into action. ‘Well look at that, your lucky day…’ – her eyes fluttered back down as the squeak of an awkward chuckle prematurely escaped from the back of her mouth; betraying her silent wish to retract those ironic words – ‘…we’ve had a cancellation at 5pm, do you think you could come back today?’

Whatever action my shell indicated as a response, must have been understood as affirmative. The appointment was made and I absentmindedly navigated my way back to the symbolically safe and familiar bubble of my car. My initial and full of bravado self-talk piped up, directing me back to work; before being muffled into submission, by the single, involuntary, cool drop of salted water, sliding through eyelashes; creating a glistening trail across the open plains of my cheek before disappearing into the ginger jungle of my beard.

The car obediently switched on and took me home.

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Craziest of Weekends

By admin on Sunday, March 24, 2019

The familiar buzzing of my phone vibrating on top of the leaning tower of books – that I will get to, I promise – upon my bedside table; wakes me from my semi-comatose state. It also serves to alert me that it must be past 6am; as a surprisingly delightful treasure I found recently is the ‘Quiet Hours’ function on apple devices – blocking any communication attempts from getting through to me whilst I focus on the Goliath battle with my insomnia…or sleep.

The message coming through caught me a little off guard as it was the first of a cascade, which is right now somewhat blowing my mind. In the last two weeks, Mandy and I have had the pleasure of liaising with a very friendly journalist and impressive photographers from the Advertiser. In my head I had pictured a small column of an article being buried somewhere obscure, within a weekday paper on a slow news day. I had also thought that being Parkinson’s Awareness month in April – if it were to feature at all it would have its place in a few weeks time, perhaps as a small part of a larger awareness campaign.

The messages of support kept flowing, and so I reached for my trusty Advertiser app, fired it up, and realised that today is Sunday. The Sunday Mail? That is pretty widely read I would think? But it’s huge, how have people already found my little article? I smash the download button as the app updates to today’s digital paper, and as the progress bar slowly fills it is hard not to reflect on the serene simplicity that I recall, once upon a time, being part of my routine; to walk, pick up some milk or bread and a copy of the Sunday Mail, to pull apart and share with my housemates. A routine that continued with my girlfriend, fiancé then wife – Another priority for the list of lifestyle choices to reinstate!

Download completed, I flicked through the pages resisting the temptation to skip through the ‘high priority’ news to somewhere near the back where an article about me would hide away nervously looking at its shoes, hands in pockets, hoping to be invisible.

With a ridiculous sense of timing, another buzz, and the screen of my phone lit up with “Page -12 – not bad!!!” (Quality feedback is a current improvement goal for my PA – who no doubt would prefer not to be named so let’s just call her “Kylie McWife”.) I flick the two pages required to reach the co-ordinates provided by Kylie. The featured image of this post is what awaits me. I can’t begin to describe the firework that this sets off in my ever so slowly but surely, degenerating gray matter.

Pride and gratitude for my beautiful students and the community they represent.
Comfort and strength in the image of my family.
Astonishment (and I’m pretty sure ego) at the size and location of the article.
Joy for the spotlight that this may shine on Young Onset PD.

Loitering in their shadow amongst these more welcome and smile inducing pyrotechnics; I can also make out the familiar shape of discomfort and embarrassment, with a hint of ‘What the heck am I doing?’

L-dopa Challenge

Adding to the complexity of soaking in the drama of the morning, is the frazzled mindset and beyond depleted energy levels of this – though still very determined – featherweight contestant in what seems a fanciful quest for the heavyweight title. Battered and bruised from the latest bout, which went the distance – that was in this instance the entire last two days.

As part of the lead up to, and one of many important steps to ensure candidacy for ‘Deep Brain Stimulation’. I have just yesterday completed an L-dopa challenge, under the watchful and expert eye of my neurologist Associate Professor Robert Wilcox; and in collaboration with the incredible team who will ultimately make the decision as to whether or not I will benefit from – and therefore be eligible for – this potentially life changing, yet not without risk procedure.

The L-dopa challenge was essentially this:

Step 1: Take my 6am meds as usual, but abstain from my 10am and 3pm doses.

Step 2: Check into hospital at 4 for a quick observation and further instructions from Dr Wilcox.

Step 3: Enjoy the beautiful scenery that is my wife, who lovingly (and perhaps sadistically) committed to opening the ominous dark door with me. Knowing full well, that what lay behind was a deviously twisted carnival mirror. The thought of what would reflect back at me, has dominated my dreams for weeks.

Step 4: Share our ‘hospital dinner’ (not a bad effort Flinders – I’ve definitely cooked worse!) and again skip my usual meds at both 8pm and before bed at 10pm.

Step 5: Prepare for sleep. Sorry for oversharing – but this does involve an unusual pre-bed tinkle. My admiration and honest pride in the powerful jet – that for the very longest time had been embarrassingly hypercoloured from the dyes and additives in 25 months of medications – running near crystal clear; was rudely interupted by what felt like incredibly violent ‘shiverring’. Though these tremors made my current task slightly more difficult than when I was a toddler, mum will be happy to know the clean toilet seat was left down and despite missing my hands with the automatic soap dispenser a few times, I very cautiously (as my legs seemed coated in thick, viscous tar) made my way back into the bed, curled up under the thin doona and just as if the tremors were simply cold induced shivers, they released me into something like stillness.

Step 6: Sleep. I actually let myself believe I could do this. Ignoring the clue that Dr Wilcox had left right in front of me – that he had arranged for some ‘Vallium’ in case I thought I needed it at any time. By 4am however, I could no longer block out the pain that my rigid legs were firing up my body. The ache attacking my whole left side broke my determination to resist the need for artificial sleep enhancements – beyond, of course, the kind hearted, enthusiastically delivered (“Thar ya goo Loorve! Be careful iz hot and they oonly had these tiiiighni coorps so iz very full”) delicious warm MILO, that I had conjured up my best 8 year old impression, to ask for!

I hit the ‘Assist button’ – setting off an alarm! Didn’t I know, that I was supposed to hit the ‘nurse’ button? – (I am sorry!) My nurse came rushing in with two others – I cancelled the alarm, but succumbed to the Vallium to encourage anything that might resemble sleep.

Step 7: Sleep. Or at least daze myself enough to distract from my screaming legs. Horribly disrupted, but at least a mild version of rest was shortly brought to a close by Dr Wilcox just after 6am.

“Time for the challenge!” This man rarely ceases to amaze me. I know he has a family. My highly trained eye (or ear I guess) has picked up throughout our time together that he is far from an absent father. Yet he appears to conjure so many hours to be present for patients? Here he is now transformed into a personal trainer; motivating patients who resembled the many ‘extras’ in Michael Jackson’s ‘Thriller’ film clip, to climb out of bed and perform various feats. The difficulty level of these tasks should have amounted to catching a fly that has already long ago met its spray can concealed demise. However after moving into the corridor with the staggered shuffle of a stranger – most confrontingly – I spent the next 15 minutes climbing the peak of Mt Everest.

“Don’t worry Todd.” The ever evolving, authentic care in Dr Rob’s voice; had me questioning whether my preference for doctors who are ‘straight shooters’ and ‘don’t sugar coat any bad news’, was perhaps a poorly constructed shield of perceived masculinity. He proceeded to pull out my numerous bottles of pills, that had been stylishly travelling in their purpose-built, tastefully constructed ‘Parkinson’s SA grab bag’ and masterfully (my psychiatrist described Dr Wilcox’s ability to get the most out of medications as “wizardlike”) concocted a combination for me to bring me back towards my best.

“I’ll be back in an hour for you to do the challenge again, you’ll start to feel much better.” Before Dr Rob made his way out – his next patient waiting to be roused by him from what sounded like a very volcanic world of slumber; he left me with some brief but important tips for eating my hospital breakfast.

Within minutes I felt my fuel tank filling, I hadn’t even noticed that my vision was blurry, but layers of fog, cleared away. My limbs loosened and I walked almost unencumbered to the bathroom; showered, dressed, absolutely devoured the delicious breakfast (the dead arse of a rhino may no doubt have seemed equally desireable I suspect), as the torment of the last 18hrs had obviously left me famished. I lay back and my eyes gently closed – I was comfortable. With a full belly, background noise and my gorgeous wife (who had driven to the hospital at dawn’s crack, despite entertaining by herself some long overdue friends, who had booked the Murfitt Hotel) lying by my side; I slept.

Briefly.

“Whoa, what a difference!” Rob greeted me with apparent joy – probably equal parts of happiness for me and what I imagine would be great satisfaction that comes with the clear evidence that you are good at your work. “Ready for the challenge?”

I swung my legs out of bed and although only just woken; the all to recent memory of the incapacitated stranger masquerading as me, filled me with a renewed virility. Although still a country mile from being physically well, I couldn’t wait to smash my last effort at the challenge – even with the knowledge that I was jacked up with performance enhancing drugs to almost Lance Armstrong levels.

There was very little of the ‘tar’ that enveloped me earlier, and I didn’t need any convincing that the medication, thankfully as it always has, wrapped itself around me like a disguise, allowing me to walk amongst others, my secret, new, but real self – undetected.

The improvement in my score for the challenge was well beyond what was required to indicate DBS would be beneficial. As Dr Wilcox put it, “Another box ticked.”

I am scheduled to meet my neurosurgeon next week, who is also tasked with the important responsibility of deeming my suitability as a candidate for this surgery. All going well, my expert team will then begin collaboration on the extraordinary mission to first find 😉 my brain and then manipulate it with electricity. To install in me, a computer upgrade and powersource that I pray will reduce my dependancy on medication and in doing so bring some balance to the difficult up and down cycle that is sadly part and parcel of treating Parkinson’s Disease.

My PD Story...

How to swing a world upside-down…

By admin on Saturday, March 16, 2019

The appointment that could not be put off any longer. Flaming ball of hope? or ginger mopped head in hands?

The well-worn leather sole of his slip-on dunlop volley, shuffled forward determined to make contact with each square-inch of linoleum tile that lay in its path. The elderly gentleman at the helm, was being lovingly and patiently steered along the hallway, by whom I assumed, was his angelic wife. A little sad, but very touching, I thought as my eyes shifted to another patient; whose vacant face tilted backward, dominated by an oxygen tube and gauze strips that clung haphazardly, too hastily taped to his face. I’m sure I caught a glimpse of shame or embarrassment as the fluorescent light momentarily flickered and reflected off his otherwise tranquil, sapphire irises. His wheelchair rolled by; faint, sinister squeals emitting from the aged rubber tyres, propelled by a carer for whom it seemed dignity and hope were beyond reach.

A familiar shiver coursed up my spine, as I settled into the waiting room chair. I was dishevelled, having rushed from work, through hectic traffic, knowing that I had left tasks half finished, and staff politely filling my roles – no doubt eagerly awaiting my return. On the noticeboard in front of me I saw that the neurologist I had been allocated had been replaced by a Professor Wilcox, but I could see little need to concern myself with who was going to see me; as I was sure that they would quickly agree that this visit was precautionary only, and I would walk out with a gentle slap on the back, tickling my buoyant sense of contentment and relief.

”Todd Murfitt” – Great timing I thought as things were already going my way – I had not even reached for my phone to check emails yet, indicating a wait of less than 5 minutes for sure! I pounced to my feet and turned to see my Neurologist standing behind me, to my left. Instead of reaching for my outstretched hand as is usually custom; Professor Wilcox raised his brow a fraction and instructed me to sit back down. Ever the good student, there was no hesitation, as my suit creased back into the seated position, my gaze set awaiting my next instruction.

“Stand back up.”

I complied.

“Take a walk down that corridor, turn, and walk back to me.” – This is going to be quick I thought, he’s not even wasting time bringing me into the consulting room. I took off down the hall knowing smugly that he could already see I was -not perfect – but average or above in terms of physical fitness and I would shortly be on my way, embarrassed to have taken time away from the patients around me. I spun around and paced back to where my Professor was this time initiating the customary handshake.

”Hi Todd, I’m Robert Wilcox. Just through here, thanks.” The hand that had just clasped mine, now motioned to the consulting room, which all of a sudden took on a slightly more ominous feel. As we sat down in our respective places, Dr Wilcox reached for a folder, sliding out a neat stack of ‘black line masters’ – that, had he been one of my teachers, I would have asked him to politely burn and never allow into this century again. Unlike the ever evolving landscape of primary education, diagnostic neurology worksheets don’t seem to date so quickly.

He explained, as he nonchalantly fanned the corners of his small paper ream, that we needed to go through some standard tests – routine of course, “piece of cake, for a school principal.” Amusing now, but Marty McFly, responding to being taunted – “Chicken?” flickered briefly in and then just as quickly out of my vision.

I shook my head gently, a dorky wry smile tickling the corners of my mouth, there is no doubt that my entire lifetime spent in school, had left its mark…I do love a test. Powering through the paper work my confidence rose again; nailed it. Anything less than full marks and this appointment will need to stretch longer; so that I can help Dr Wilcox understand where he marked the score incorrectly.

“Up you get, Todd.”

My chair groaned noisily as it slid back, Dr Wilcox motioned me into position and proceeded to test me out with a range of balance, rythym and coordination actions. As sharply as my confidence had grown, it plummeted to new lows, and like caustic bile, my excuses clawed out abrasively from somewhere near the back of my throat.

“I used to be very fit…Haven’t been working out lately…It’s been a very busy morning…I’m a bit tired from racing up the stairs…This should be easy for me… I am co-ordinated…I am stronger than I look…”

Now feeling defeated I slumped back into the patient chair. Dr Wilcox nestled back behind the desk and turned my perfect test, so that I could see my work. Clearly he is trying to cheer me up. Everything will still be fine. Phew!

”Todd, what do you notice about the square you drew?”

Like a David Copperfield extravaganza, my square was unveiled, and I looked on in dazed amazement as it had been squashed into a rectangle. The house I had drawn – suffered the same effect. My handwriting had progressively shrunk. My flawless tracking between lines, was not at all – it bounced from edge to edge breaking through the intended barrier a number of times. What is this wizardry? What happened to my work?

“Todd, I think you have Parkinson’s Disease.”

– through Mandy’s lens

My PD Story...

A tip of the hat – to women

By admin on Sunday, March 10, 2019

International women’s day 8th March 2019
A fitting coincidence for this week’s post – as I recall the hard to comprehend but insightful and wise referral from my GP – whom I was meeting for the first time. My featured painting above is not of Dr Wong – who proved an excellent physician in my time with her. If I were to paint or even list the women I have met, whom I admire for qualities that I aspire to myself; I’d lose any time to dedicate to this post! I decided instead given the timing of this post to paint the three most important, loving, inspiring young women in my life.

“…Neurologist…” The word reverberated, bouncing off the inside of my skull, compressing its ‘alphabetti spagetti’ letters against the bone, reorientating, and launching back through my muddied mind, slowly losing momentum, until eventually settling into focus.

Sadly, by now I was sitting back in my car having not allowed any further advice or information from Dr Wong to penetrate into my short term memory. Most of the fundamental cores of my identity, sprout from or entangle with my mind: my intelligence (not MENSA, but no dummy!), my lateral thinking, my problem solving, my wit, my leadership. To refer me to a brain specialist was about the most disparaging insult that I had been belted with in my life – and let’s not forget that the handsome man you see now 😜, grew up in a country town, with three brothers, a mop of red hair and a tan that preferred to emerge as many individual, teeny tiny tans, rather than an even coating regular one. You have to get up very early to penetrate my alligator tough skin with an insult!

Yet, there it was, my brand new GP (having not been to the doctor since moving to town more than a year previous) who I had misjudged immediately, to be too soon out of Medical school, too timid, too gentle. This ‘caveman’ needs a doctor capable of communicating in guttural groans, interspersed with a vigorous yet simple, European sign language styled vocabulary. A doctor who is able to lather their patient chair with concentrated sulphuric acid – because they have no intention of letting me sit down long enough to start the corrosion of my derrière. A brief, deeply vibrating shudder coursed from my heels through the tip of my spine, catalysing a slow shake of my head, whilst persuading me to gently massage the back of my neck with my clammy palm. I don’t like being wrong, and my inability to cope magnanimously with my wrong presumption; escalated my current physical symptoms. Dr Wong – although packaged as delicate and dainty as a butterfly; was sharper than a hyperdermic needle and as hard hitting as Sonny Liston.

Still, I refused to believe that my casual mention of a caffeine fuelled hand tremoring on the keyboard, could possibly indicate a problem with my brain. Perhaps arrogantly, more likely fearfully and with the safety of being alone in my car, I thought to myself as I took a final lingering glance at the referral form, “Not this brain, no way.”

As the date of my referral loomed closer I clung to one final act of defiance against Dr Wong’s wisdom. In hindsight, so very predictably I made the last minute decision to prioritise my work over my health; and in the blink of an eye I had postponed my neurology appointment for another 3 months – allowing me to snuggle comfortably with my denial through the Christmas break – right up until the beginning of February in 2017.

My PD Story...

Was that a Mack truck?

By admin on Saturday, March 2, 2019

Dragging myself out of bed, took the effort of someone trapped in an upturned car with petrol dripping slowly toward sparking electrical cables. The doona as resistant as a buckled seatbelt and the carpet under my feet seemed littered with shattered pieces of windscreen. I shuffled to the bathroom and prepared for the stinging pellets of cold water that would jolt my system awake. My morning routine was familiar enough that there was no need to open my eyes, and so my eyelids remained snugly together, pretending to steal a final moment of sleep, until the cold water, like the tin-man’s oil can, released their bond and allowed the light to bounce into my eyes. Conveniently, the cold water easily explained away the shivering that permeated my body.

The image of a car accident seems apt, as this morning – like most lately- I felt hit by a truck. Even so, it is easier to justify this to myself rather than risk thinking anything might be wrong or that I might be in any way abnormal: I have a demanding job; I don’t exercise like I used to; my sleep is interrupted by poking thoughts of responsibility… with enough determination to avoid looking more deeply at this problem, the list of acceptable alternate conclusions is without end.

My wife finally loses her vice like grip of her tongue: ‘I don’t think it’s ok for you to feel like this Todd.’

My stereotypical, caveman bravado whirred to life; unlocking an endless list of standard phrases, that our childhoods were subjected to – in a loving attempt to build resilience from our parents and teachers. Without thought or control, they spew forth to make a jumbled argument of;

Life isn’t meant to be easy.
They call it work, because every other four letter word was taken.
Short term pain – long term gain.
I’m big enough and ugly enough to take care of myself.
Money doesn’t grow on trees.
Work hard now, reap the benefit later.
Success takes hard work and sacrifice.
Nothing comes from nothing.

In hindsight, I know that I recognised immediately that my wife was right on the money – as she usually is – but as I rarely admit.

As the more gracious and emotionally intelligent half of this relationship, she allowed my crazy rhetoric to end this conversation. Yet, as the realisation of my overreaction settled, my niggling cough broke the silence and provided me with an alternate path to my wife’s obvious intent, whilst manipulating my ego into thinking it was my idea.

‘I can’t seem to shake this cough – I think I’ll go to the doctor.’

My PD Story...

Too much coffee?

By admin on Tuesday, February 19, 2019

It began with a tremor that visited so briefly and has not yet returned. The taste of my third cup of coffee was beginning to go stale at the back of my throat, reminding me both that my children were waiting and, of course, to fetch a mint on my way out.

Before the keyboard smoke could form an ember, I polished off the final paragraph of the newsletter. As my right hand began autopiloting the save process; my left hand entered it’s own private disco. It rocked rapidly back and forth of its own accord. I thrashed my arm up and down as though I may have had a deadly spider poised to inject it’s toxins into the back of my hand. As I relaxed my arm my hand came to rest on its familiar place on the keyboard. The bizarre moment had passed. ‘Time for a caffeine detox!’ I thought as I noticed the ever growing pile of mugs on my desk.

I scooped them up and moved them to the sink in the staff room (A terrible habit that I am forever in trouble for, as the dishwasher is only inches further. There are some challenges I seem unable to fix!) I grabbed my bag and rushed out of the office. A niggling cough, interrupting my general call of ‘Goodbye’ to anyone who was within range.

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L-dopa Challenge

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