Parkinson’s Archives - Shaky Leadership

Change afoot! Redefining the Journey

By admin on Tuesday, November 26, 2024

For years, I’ve worn “Shaky Leadership” like a badge of honour. It was my nod to both the literal and metaphorical tremors of life—a playful take on leading despite the wobble. But today, I sit here with a steadier hand and an ever evolving understanding of my story, I find myself standing at the crossroads of reinvention.

Let me explain.

For those who’ve followed my journey, you know I was diagnosed with Parkinson’s disease. You’ve read about the ups and downs, the battles with medication, the experimental brain surgery, and the sheer willpower it took to stay upright—physically and emotionally. I wore the diagnosis as part of my identity, like a slightly itchy sweater that I’d grown used to.

But life, as it turns out, had a plot twist in store.

After years of living under the Parkinson’s umbrella, a neurologist brave enough to delve deeper discovered something new: Functional Neurological Disorder (FND). While that might sound like something conjured up in a medical thriller, it’s actually a condition rooted in how the brain and body communicate. Imagine if your brain were sending texts, but autocorrect kept changing “walk” to “wobble” or “rest” to “panic.” That’s FND in a nutshell.

Here’s the kicker: it’s not degenerative. No “worse with time” clause. No ticking clock. No medication. No brain stimulation. Just a chance to rewire, rebuild, and reclaim my life. It brings with it great relief and hope. Though hiding in the shadows of those two attractive pillars is a surprising swarm of guilt, shame and grief. A puzzling mix of emotion to be worked through as they eat away at my identity and test my resilience. It is some of the best news a ‘Parky’ can get – yet its not a cure, it is not a return to regular life, the sharp claws of its tight grip are perhaps even more invisible than ever before.

Parkinson’s may no longer define me, but the lessons it taught me—about perseverance, adaptability, and the importance of humour—are here to stay.

And so, “Shaky Leadership” must also evolve. After all, the shaky days are (mostly) behind me. There’s still the occasional metaphorical stumble, like when I attempt to assemble IKEA furniture, but those don’t count. Days are challenging no doubt, and my body remains unpredictable, but the shaky mind for one is returning to clarity, the smog of medication and electricity is lifting. I can’t describe to you the feeling of a mind returning to your control – when you hadn’t realised it had escaped in the first place! As such, this will likely be my last post to this page, as I retire it to the archives and turnover a new leaf.

This isn’t just a name change; it’s a mindset shift. A chance to focus on stability, on resilience, on the stories of overcoming that make us human. I’m trading in the shaky badge for something that better reflects the ground I now stand on—solid, albeit occasionally uneven, footing.

Advocacy and Community

Advocacy has always been close to my heart. My experience with Parkinson’s disease gave me a profound appreciation for the challenges faced by people living with disabilities, and I’ve worked hard to advocate for awareness and support in the Parkinson’s and broader disability communities.

Now, with this new diagnosis, I find myself at the start of another journey: exploring the world of FND. I know there must be communities out there—spaces where stories are shared, insights are exchanged, and advocacy thrives—and I’m determined to find them. Over time, I hope to use my voice in this space too, just as I’ve done for Parkinson’s. Advocacy isn’t just something I do; it’s a part of who I am.

I want to thank you for supporting ‘shaky leadership’ and my journey up ‘til now and hope I can repay that support into the future. I will continue to provide what I see as absolutely crucial support for parents and schools through my role with ‘Cybersafe Families’in 2025, whilst I also turn attention to a new venture…

Sharing my skill set with Murfitt Elevation

As I pivot into this new chapter, I’m excited to begin shaping Murfitt Elevation, a space where I’ll bring together my leadership experience and my personal journey of resilience to offer something truly unique: practical, human-centred support for leaders.

My focus will centre broadly on:

1. Leadership Strategy: Supporting principals and educational leaders to make informed, confident strategic decisions in a world where change is the only constant.

2. Leadership Wellbeing: Offering tools and insights into self-care, time management, reflection, delegation, and building sustainable habits to ensure you can lead effectively without losing yourself in the process.

Having faced some of life’s most complex challenges, I bring a trusted perspective that inspires and supports. I understand the pressures of leadership, and I know what it means to navigate uncertainty while staying grounded. My goal is to empower leaders to thrive—not just professionally, but personally.

If you’re ready to explore how we can work together, whether it’s through one-on-one coaching, team workshops, or strategic consulting, I’d love to hear from you. Let’s redefine what it means to lead with resilience, purpose, and wellbeing at the forefront.

So here’s to the future: advocacy, elevation, and a commitment to making every step forward meaningful.

Thank you again,

{insert cool sign-off tag here}

Todd

My PD Story...

50 Shades of Black (and the NDIS)

By admin on Monday, March 15, 2021

My story seems one of opposing forces, not many shades of grey – either black or bright Napisan white. At a glance – depending on the light and speed of the head turn, I am either gripping tightly to the soaring feathers of the giant eagle, the wind kissing my face and gently ruffling my golden locks, or, I am groping and flailing my way out of the giant eagle’s droppings that have knocked me on my ass and buried me neck deep in filth.

A glance that catches me in the light, sees a triumphant character, rarely struggling with feats of academia or athleticism, climbing the career ladder and winning the gorgeous wife and kids lottery. I like this glance. It’s a superpower, able to drag me out of the deepest pit.

But a glance that catches me in shadow, draws a timeline of calamity, some poor luck and the occasional kick in the bollocks. A dreary aura of trauma seemingly tethered itself to me at an early age, not able to block the light of wonderful and amazing experiences but holding on nevertheless with an ever determined grip to my usually untied shoelaces.

I bounced into this realm of the living a month and a half early through emergency caesarean. It was a procedure performed to save my mother’s life after a severe case of preeclampsia that would later be used as a case study in the training of future medical staff. My own life was more of an afterthought, it was presumed I would be dead or pretty darn sick to say the least. Even as a foetus, I was up for a challenge and perhaps with some innate resilience I pulled through – tiny, scrawny and ginger, but otherwise loveable! My eventual list of diagnoses kicked off with Talipes Equinovarus (club feet) and a hip malformation. I avoided the months in callipers others at that time endured, thanks to a forward thinking orthopaedic surgeon who opted to prescribe exercises and some fancy boots that would slowly turn my feet the right way. I was walking around by the time I was 18 months old and though a little pigeon toed, my old trophy shrine suggests that I must’ve been able to scamper ‘round the hockey and cricket pitch just fine!

I’m an ordinary swimmer though. For as long as I can remember, the ocean makes me a little uneasy. I’m assured this wasn’t always the case – it seems to stem from an early incident when I was all of four years old and having a great time with my brothers in the shallows of the local foreshore. A great time that was until, another local lad thought I’d make a comfortable seat. He plunged my head under the water and lounged on my back with no regard for my apparent need for air. Whilst my mother watched on helpless from the beach, my 6 year old brother recalls the slowing down of the world around him to this day, as he ran Baywatch style through the water, launching himself at and knocking my unwanted jockey into the ocean, freeing me to finally gasp in some oxygen. A clear memory for some, but my recollection is restrained to an anxiety – that keeps my head above water.

From water to fire!

My brothers are awesome – often shits – but still awesome and we all share the best of friendships. But we’re pretty lucky to have made it through, really. At one point, my scientifically minded elder brothers thought to discover the ignition point of my foam mattress, my memory of this is slightly different to theirs – apparently I was next to, and not in the bed.

The fire theme continued with a grander outdoor experiment testing the speed of flame transfer from a small contained dry grass pile to a grapevine that covered the entire rear fence of our property. Apparently the rate of spread exceeded the safety parameters that were prepared for and our back yard was engulfed before our eyes! Again it was always under control if you were to ask my brother!

A constant, in the background of all my childhood years of fun and calamity (I could tell some bmx or hockey stories and other ‘boys will be boys’ moments that left another Murfitt, usually me, in the emergency ward) was a condition that was undiagnosed until I was 16. A simple defect really, but an unknown cause of many dramatic scenes that would leave me feeling weak and pathetic.

I was a slow eater, always last to finish a meal. For the life of me and to my huge embarrassment I couldn’t swallow a ‘damn tablet’ (as I came to know them – as in “Todd! Would you just swallow the damn tablet!”). As it turns out an astute radiographer discovered that my oesophagus was being impeded by an errant artery, and a web of blood vessels was slowly but surely squeezing my gullet. Leaving the smallest of openings, where only the most well chewed food could travel past. A small tablet it turns out was actually an enormous choking hazard.

And so, my first major surgery wasn’t my ‘awake’ brain surgery but open-heart surgery twenty years prior, which came with more x-rays, MRI’s and iodine injections then Evil Knievel. One of the most vivid memories for me though was the moment a physiotherapist suggested post-op that she thought I ‘might get full use of my left arm back’. I had never known there was a risk of anything else… and yet I was playing cricket for my district within a month – against doctor’s advice of course. 😬

Before I could get too comfortable with my new high performing gullet and radical scars, my brother who had just completed high school himself, picked me up from school in my very own ‘71 mini clubman, that I was ever so close to being able to drive on my own. I enjoyed seeing it pull up even though I knew it would no doubt have suffered burn-outs and doughnuts at the hands of my brother along the way. But when I opened the passenger door something was off. In an effort to ease the tension my brother got straight to the point.

“How’s it going cancer boy!”

It didn’t take a genius to work out that the results of a biopsy taken the previous day of a growth on my back had come back, and my brother -sworn to secrecy of course- had been let in on the news.

His abrupt sharing of the results did save any awkward or soppy ‘sit-down-son-we have-something-to-tell-you’ moments and instead I chose my ‘last supper’, we ate, and slept restlessly, before meeting my GP for an excision and skin graft in the morning. The day-surgery was a bit of a disaster itself. At one point I had a pillow to bite on and a shot of adrenaline for pain relief, whilst a chunk of my chest was sewn into the middle of my back. Leaving me the proud owner of an ugly scar on my chest and a circular patch of chest hair on my back to remind me of the ordeal!

That would be the first of two Melanoma’s removed along with their many‘let’s not take a chance’ cousins – which made up the majority of my hospital visits over the next decade. Until the more recent Parkinson’s Diagnosis and ‘awake brain surgery.’

Now that is quite a glance at some medical and family dramas that I’ve processed over the years. My generally positive spirit has always been able to look forward to the next chapter of my life.

This post is not intended to be a ‘woe is me’ grab for attention, nor is it “Go Me! Look at how strong I am”, but hopefully an insight into either my crazy mind or a potential flaw with the safety net that, I am in the same breath so very thankful for, yet embarrassed to need – our National Disability Insurance Scheme.

Of all the incidents that could haunt me, surprisingly nothing seems to come close to my experience of applying for the NDIS. Asking for help, which is hard for everybody, and a particularly lacking trait of my own personality.

Like a knife to gunfight, a positive outlook as a defence mechanism is stripped away, along with the stoic, and courageous armour which is so much more comfortable than the sackcloth of vulnerability it is replaced with. An intense focus on all that is shit and will get worse. As if not enough, this is teamed with evidence from medical practitioners concurring with your assessment and adding more detail to the level of stink. Impact statements on others, whom are subjected to your presence, are sprinkled in like a dash of salt on an exposed wound, packaged up and sent off for judgement.

Is my turd of a situation big, bad and smelly enough? Did I hit the right keywords that will attract the rubber ‘yes’ stamp? Apparently not, I would discover some three months later after countless enquiries, with an invitation to re-apply.

I need help, but I do I really need it this much?

Should I take off my radiation suit, exposing myself to the core of a nuclear reactor, to simply apply a band-aid to a slowly but dangerously bleeding cut? There is no choice – not really. I knew that if it took one hundred applications, that is what I would do – because of the impact statements.

The support – although targeted towards me, is for others too, and the stinkiest part of Parkinson’s is that for a disease so isolating, it ironically hits those close to you equally hard. So the band-aid is for me, but it is also to stop my cut from dripping into the stinging eyes of my children, and my wife. So off with the suit…

…and back into the toxic world of negative medical reports, OT assessments, impact statements, begging for help from anyone who might know more about presenting the turd at the right angle, in the correct lighting and speaking the correct language to meet the unknown criteria of an unknown assessor.

The outcome of the second time round, was swift and support put in place within weeks. It is life changing. Previously low priorities in the world of family life, such as physiotherapy for myself, or some help in the garden give me the power to flip those impact statements. So yes, the NDIS is amazing, priceless in fact.

Yet the exposure to that radiation, though metaphorical, is particularly apt. It’s like a change to my DNA, morphing just a few positive cells of the many thousands, into negative ones, weak and pathetic, and contagious.

Latest Updates

51 Weeks remain

By admin on Friday, January 8, 2021

It appears the sliding of wires through my fleshy grey matter has adjusted my ability to control my impulses. Depending on your perspective I am more fun, confident, decisive and brave; or rash, childish, impatient and reckless. Internally, I’m still just me – though in a continual tug of war between anxiety and determination; shame and vulnerability.

And so, making grandiose plans for 2021 is likely not the wisest choice for me at this point in time, but then…YOLO.

So with some external inspiration from a young middle-eastern chap on insta (@the_spare_minute_runner) I figured I’d start a fundraising effort with the Michael J Fox foundation where I’ve committed to completing high intensity fitness training every day this year.

Now, Parkinson’s disease in a nutshell is the brain’s inability to produce dopamine. We use dopamine for motor control and cognition, and it is one of the chemicals that drive motivation. Given all of this, my ‘New Years resolution’ may have been a little outside my realm of possibility – so I am looking for your support to be my dopamine, and motivate me to get through this.

I’ve had great support to get me through the first week of the year, already running, riding boxing and lifting weights, at a level I haven’t for years. I know my family, my ‘Parkinson’s pals’ and the crew at ‘Brain and Body Fitness Studio’ are in my corner. A quick message or shoutout like this…

…really makes a huge difference to get me going, so thanks!

If you’d like to donate to the cause as well or instead of having a crack at some high intensity training, please do visit my fundraising page – 100% of funds go to research towards Parkinson’s treatments and ultimately a cure.

If you could please smash the like and share buttons – as usual awareness is key if we are going to make a difference!

Mandy’s Story

A frozen Winter – 2018

By Amanda Murfitt on Tuesday, August 4, 2020

Denial: A refusal to acknowledge an unacceptable truth or emotion or to admit it into consciousness.

I linger in what I perceive as a sweet state of being. This toxic sweetness will in turn be my unravelling. I navigate this new territory with wonder, feeling safe and secure like being wrapped in a comfortable doona, amongst soft pillows and a good book. I escape into this world where I no longer have to acknowledge a future where my husband has a disease. I float in this world half paying attention to medical appointments, letting the words wash over me, hearing them as if I’m underwater, barely audible.

I smile and politely respond to people’s kindness, “Todd is fine, he is doing well”. “Yes, that’s right, you can’t notice his symptoms.” “I’m well, thank you.” These lines are well rehearsed, I believe they sound convincing. Do they?

I do not dare open the door leading into this unknown world that is so foreign to me. I do not have a passport for this new place, I do not know the language, I am ill equipped to move throughout this land with confidence, I have had no training.

I resume my life pretending everything is the way it was. I believe all is well. My mind wraps itself into a protective chrysalis, I can stay here, this place is safe.

I become a magician, specialising in escapism, believing I can create illusions for myself and for others. I believe the tricks are successful, I escape with ease, disappearing and reappearing, slipping into different costumes quickly, wearing elaborate masks. I crafted my performance well, or so I thought…

There is a small crack in my cocoon, it gradually gets bigger and wider, I am no longer able to mend it. Harsh light pours in, blinding me. I retreat, not willing to exit. Finally, without warning the cocoon breaks apart, no longer able to hold and protect me. I crash to the ground.

It hurts. The volume is too loud. The smells make me nauseous. The sugar high dissipates, this tempting sweet poison offering no nourishment. I emerge from this state of consciousness confused, betrayed, angry, devastated. I am forced to accept this reality, like an addict facing withdrawals and moving through the exhausting and overwhelming transition stage when giving birth.

When I ponder this phase I experienced, I realise with stark clarity that I lived a half life. I believed the colours were bright, the air sweet and warm. The truth is I was incapable of living in the present, and the present is all we have. I was unable to truly experience the myriad of opportunities that arose, I was disconnected, a little broken.

However, the cocoon I inhabited was necessary, it offered protection during the long Winter, it enveloped me until I out grew its interior. My fall back to Earth was by far the most difficult, little did I know that there embedded within me, was strength. This was hard… but I can do hard things.

Mandy’s Story

Winter 2017

By Amanda Murfitt on Saturday, June 20, 2020

Neurology, dopamine, levodopa, rigidity, tremor, young onset, insomnia… words that now swim around my mind and are solidifying into my subconscious.

My 35 year old husband has an incurable, degenerative, neurological disease. We have been assured that among the neurological family of diseases, this is the best one to have. A morbid and strange utterance to hear.

The first of many future scripts is filled, detailing a new medication that will hopefully alleviate the symptoms that have now found a home in my husband’s body. New medication that will become so familiar to us, so recognisable, yet so despised.

We are hopeful that this medication takes effect – confirming the diagnosis, as we dare not open other doors that may hold far more sinister realities. The words Motor Neurone are heard and our expressions are fixed with a mixture of horror and disbelief. I will my silent tears to stop from falling and quietly pray that this new medicine is effective, avoiding grim alternatives.

I force thoughts and visions of our future out of my mind. I continually bring myself back to the present, trying to focus on the here and now and what lies ahead of us – sharing this news with our family.

We tell our precious girls, who at the time, were 8 and 5. They comprehended what they were able to grasp, most likely not understanding the gravity of this new life path, that they are now unwittingly heading down. What does this mean for them? How will their lives change? How much will their Daddy change?

We share the news with our parents and siblings, my stomach in knots, relaying the information over and over. Shocked, saddened, pensive faces match ours. Kind words spoken, warm hugs given.

The medication takes effect. This is it. Outside, the change of seasons has commenced. Trees abandoning their leaves for another year, glistening frost covers the ground just before we are gifted with another sunrise, heralding the start of Winter.

A new season. Denial.

Latest Updates

Becoming Bionic

By admin on Wednesday, June 17, 2020

A magical, slightly gross process is whirring away deep within the microscopic cosmos of my brain. Over the past past twelve months, tiny strands of protein have thankfully been wrapping themselves around the alien, metallic intruders that expertly navigated their way on a mission to blast electricity into the sub thalamic nucleus just millimetres from the brain stem.

It’s a remarkable world in there. So very complex.

Sleepy neurons have been dependent on being hand fed their levodopa meals – through copious amounts of pills – to produce an unusually limited supply of dopamine that was quickly consumed transmitting messages throughout the rest of the body. These same neurons have been put on a harsh diet. A new rationing regime has been introduced – less than one quarter of what they have been accustomed to receiving. The rest of their oversized portion has been replaced with essentially two enormous cow-prods – jumpstarting them into more efficient production.

I imagine a world of chaos on this microscopic scale. An intimidating invasion preceeded by the most cataclysmic thunderous sounds and violent earthquakes as the drill-bits gave way to blinding light streaming into the dark landscape. One that was only previously lit by the gentle and peaceful crackle of electrical current as cells and neurons communicated in this once tranquil space. In this setting it is not hard to imagine why some of these worlds might rise up and fight, rejecting this new arrival with infection, pain and discomfort.

After 12 months, graciously, my little world has now completed its choice to extend a peaceful olive branch to the invaders. They are now part of the team, completely accepted and providing a valued contribution to a truly bionic world.

We probably have a lot to learn from these tiny dynamics!

Of course, all of this sounds a touch romantic (and I’m sure nutty!) but such radical treatment – not cure – for Parkinson’s disease was only ever a glimmer of hope for the future. Never able to promise anything. It required a leap of faith from an unknown cliff and into a thick mist. It was always going to hurt. But hope is a powerful motivator, a glimmer is more than enough. It allows us to wish, to dream the impossible dream, and sometimes it even drags us over the line to achieve it.

This hope, these dreams are shared – by my family, and in my truly blessed circumstance, with friends and connections beyond anything I deserve.

In many ways my dreams are now real. Our prayers answered in the affirmative. Some ridiculously out of this world technology gives me a new body and with it a new future. It has to be a new future. My new body is a different body, my new bionic, battery powered brain is different, and they bring new quirks to learn, new behaviours to become accustomed to.

For me this means the closure of the longest chapter of my life, Principalship. A chapter that has been so life-giving and life changing, so insightful and so very memorable.

My core values won’t change, although they have been refined and put to the test, strengthened in the furnace. I have been privileged to dedicate my working life to service of others. A life that gives back more than it can take – and it can take a helluva lot! This sense of service may shift focus, and I await anxiously but positively for the grace that will direct this shift. It is a proactive wait and I am so very looking forward to strengthening connections with so many of you, re-connecting with others and of course starting new ones. Again, I am so blessed to begin this new chapter close to home. How incredibly valuable is time? and time I have – to spend with my beautiful girls, and my family.

Mandy’s Story

Summer 2017

By Amanda Murfitt on Saturday, May 23, 2020

The beginning of a new school year. I had started a new teaching position, teaching drama, visual and media arts in middle primary classes and team teaching a Year 1/2 class. I was excited to have won a teaching position, and I was looking forward to teaching what I love most, Creative arts.

It was a Thursday and I was driving home from work. What dominated my thoughts was one single sentence, “Please don’t let it be a brain tumour”. I knew that Todd was at Flinder’s Medical Centre having an MRI and seeing a specialist. Little did I know what lay ahead of me when I arrived home.

I found Todd in the office sitting quietly, looking pensive. I immediately asked him, “What did the doctor say? Is everything ok?” He did not reply straight away, and as he sat in the office chair, nothing at all prepared me for his reply.

“I have Parkinson’s”

“What, what do you mean?” I could feel my panic rising. How can this be? What the hell? Where has this come from? I felt confused and shocked, I couldn’t believe it. This news had snaked its way into our beautiful Adelaide Hills home, which I adore, without any warning and had now decided to permanently move in, without any intention of leaving, like an unwanted house guest.

All I remember from that evening is calling my best friend, desperately needing to find solace in someone who knows me so well. I remember blurting out the news, most likely incoherently. Claire listened, consoled and was a source of much needed strength.

I do not remember the next few days, they all blur into one. What remained constant, what continued to replay over and over in my mind was that one, ugly word, PARKINSONS. I saw it written in bold capital letters, sneering at me, it had imprinted in my brain. I saw it as I waited for sleep to come and it greeted me as I awoke in the morning, like garish, stage clown makeup.

As I arrived at work on Friday, desperately trying to be brave, to somehow lock that vile word away in the deep recesses of my brain, to hide it, to deny it. As I walked into the school office, I saw my lovely, supportive leaders and my brave demeanour betrayed me. I broke character, crying, the news spilling out like a burst dam.

This was a new beginning, my new reality. Life now would forever be altered.

-Through Todd’s lens

My PD Story...

Add Dementia to the list…

By admin on Saturday, July 27, 2019

* Please don’t use this blog to prepare for neuropsychological testing…the specifics relating to the tests have been changed to avoid any prompting or possible influencing of results on my account…😁

The black line drawing of a piano danced off the page, tormenting me with memory after memory of every previous interaction we had shared. From the plastic toy I couldn’t play as a toddler, to Billy Joel’s ‘Piano Man’ blasting from Beechy’s top of the range speakers. And yet, mysteriously, it refused to remind me of its name.

“It’s like an organ.” I stammered out, eager to turn the page and continue the test, but Rochelle was having none of that.

“It has another name Todd, a more common name.”

“I know it does…it’s so obvious…but it’s not coming right now, I don’t know why.”

No doubt picking up on my growing frustration, the neuropsychologist kindly allowed me to turn the page where I was greeted by a simple drawing, but an obvious one. “An Elephant.” In my mind I was wiping the sweat off my brow, the first one must have been just nerves…a little test anxiety (the irony of a principal with test anxiety doesn’t escape me.)

I looked up for affirmation from Rochelle and was very relieved to see the gentle nod and hint of a smile. I turned the page with a small sigh of relief.

Another simple black line drawing was presented in front of me. This one was ridiculously easy…so easy…the level of difficulty of this question was … beginner.

“Todd?”

“It’s a nut.” My mind was scrambling for the answer – and knowing it was easy wasn’t helping. Gum nut? No. Chest nut? No. Peanut? No – that’s not even a nut Todd, its a legume, remember….aagh!

“I know you’ll want to know what sort… it’s from an oak tree, squirrels love them and stockpile them for the winter…” I didn’t know whether to laugh or cry at this point, this was about testing my cognitive function, and all I could do was develop a warped, version of twenty questions that the neuropsychologist had no intention of engaging in.

I slumped in my chair… statistically I knew it was no more likely for me than for the general population, but now there was only one word swelling in my mind, greedily absorbing all my positivity. How could I possibly expect to run a school with Dementia.

I glanced at the clock.

It was nearly 3pm. My appointment had started two hours earlier, and we were only just starting the test. An eerie, unfamiliar shadow of despair was beckoning me and although grim, there was a comfort within it’s bleak, black presence that was drawing me ever closer.

Rochelle’s voice of wisdom seemed distant at first, but pulled me back into the room. “When did you take your medication last?”

“I am due for my dose at 3pm.”

“And how long does it usually take to start working?”

“Actually, it’s quite quick…within 15 minutes or so.” I finally caught up with her train of thought and leapt aboard! I shook my pills out from their container – two 200mg levodopa tablets and a 200mg entacapone tablet (my most regular cocktail) – grabbed my wife’s pink water bottle, that I had borrowed for the day, and gulped them down.

Rochelle offered to refill the bottle, which gave me a few minutes to breathe and await the miraculous effects of modern medication.

Whether it was the medication, or the kind and gentle prompting from my neuropsychologist, or a combination of the two, my test anxiety – if that is even what it was – seemed to melt away. My clarity of thought improving by the minute and before long I hit my strides and was cruising through the test – I even went back and got ‘the nut’!

The black line drawings, gave way to progressively harder challenges. Testing reading and vocabulary, problem solving, and short term memory. By 4pm Rochelle had tallied up the results and was able to give me the feedback that I had desperately needed to hear. My cognitive function was excellent (despite what my brother’s say) with a particular spike in my ability to think outside the square, which I believe is a good thing…😬.

There was no reason to think that my cognitive function should be an obstacle for the surgery. Another box ticked, but I was utterly drained and regretted driving myself to the test immediately. I needed a hug or at least to be nursed out to the car. Sadly, although I had spent the last three hours exposing my thoughts, challenges and abilities to Rochelle…I knew I couldn’t ask that of her. She did have a request of me though…

And so as I dragged my feet, a little disoriented from the whirlwind of emotions and thoughts playing havoc inside my head, I was quietly thankful, knowing that there would now be one more familiar, friendly face in the operating theatre with me.

Latest Updates

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!”

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.

Tag Archives: Parkinson’s

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