March 2019 - Shaky Leadership

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.’