Diagnosis 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

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.

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...

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.

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