Drivin’ Daughters and Parkinson’s

By Marco Preshevski

“I have Parkinson’s Disease…”
The words kept hitting me like a hammer on my forehead.
Parkinson’s Disease… PARKINSON’S DISEASE… PARKINSON’S DISEASE.
When Marco Preshevski was diagnosed with Parkinson’s Disease, his life fell to pieces. He had just turned 30 years old.
Drivin’ Daughters and Parkinson’s is the remarkable story of Marco’s rollercoaster journey through life before, during and after his diagnosis of Parkinson’s Disease. Beginning on that fateful day in March 2001, Marco tells the fascinating story of how Parkinson’s Disease slipped into his life, how it made its presence known and the unending battle he has fought balancing symptom relief with side effect control, using various medications and cutting-edge surgery.
Marco explains in detail the destructive psychological consequences he experienced at the hands of Parkinson’s and the devastating effect this had on his personal relationships. Often going into deep, intimate detail, Marco tells us how Parkinson’s Disease drove him to the edge of his life, until he discovered the reason for his existence on earth.
Told through the eyes of an ‘ordinary’ man, Drivin’ Daughters and Parkinson’s is a fresh look at personal experience of this difficult-to-handle medical condition. Hilarious, wholly inspirational and at times difficult to believe, this book should be read by anyone whose life has been touched by Parkinson’s, by those who want to understand the disease better and by those who want to appreciate the patient’s point of view.

• Language: English
• Publisher: Austin Macauley Publishers
• Release date: Nov 30, 2021
• ISBN: 9781398443815

Marco Preshevski

Marco Preshevski was born in 1971, in Luton, United Kingdom. After spending his childhood and adolescent years in the west of England, he attended the University of Bristol, graduating in 1993 with an honours degree in Chemistry. Marco worked for almost twenty years in healthcare, marketing communications before moving to Australia. Marco lives in Sydney, New South Wales, Australia, where he spends as much time as possible raising his daughter.

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About the author

Marco Preshevski was born in 1971 in Luton, United Kingdom. After spending his childhood and adolescent years in the west of England, he attended the University of Bristol from which he graduated in 1993 with a Bachelor of Science degree (with honours) in Chemistry. Marco worked for almost twenty years in healthcare marketing communications including ten years’ experience in advertising and brand development, before moving out to Australia. Marco lives in Sydney, New South Wales, Australia, where he spends as much time as possible raising his daughter.

Dedication

For my wonderful daughter E, who gave me reason and inspiration to write this book. I love you very much and am proud to be your father.

A huge thank you to my mother Sue, who has kept me focussed throughout my life and while I was writing this book. Love you lots Mum.

Copyright Information ©

Marco Preshevski 2021

The right of Marco Preshevski to be identified as author of this work has been asserted by the author in accordance with section 77 and 78 of the Copyright, Designs and Patents Act 1988.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of the publishers.

Any person who commits any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages.

All of the events in this memoir are true to the best of author’s memory. The views expressed in this memoir are solely those of the author.

A CIP catalogue record for this title is available from the British Library.

ISBN 9781398443808 (Paperback)

ISBN 9781398443815 (ePub e-book)

www.austinmacauley.com

First Published 2021

Austin Macauley Publishers Ltd®

1 Canada Square

Canary Wharf

London

E14 5AA

Acknowledgement

To all my friends and family, who provided encouragement and support while I was writing this book. Thank you for helping me to write sensibly, sensitively and above all, truthfully about some delicate, personal subjects. In making this book complete, these stories need to be told.

To the team at Austin Macauley, my publisher in London. Thank you for believing in this book and for coping with the time difference between London and Sydney; I realise I am asleep for most of your working day!

One

So, today was the day…

I was looking for the Midland Hospital in Fitzrovia on Howland Street in Central London. To get there, I took a Victoria Line underground train from its origin in Walthamstow to Warren Street. Upon arrival, I quickly crossed to the opposite platform, narrowly avoiding the need to battle against swarms of people intent on climbing the stairs to reach ground level. I waited on the platform until a southbound Northern Line train arrived to take me the last couple of stops to the Tottenham Court Road. This was the closest underground station to Howland Street. As I exited the station at ground level, I caught glimpses of the BT Telecom Tower as I marched towards my destination. Once I had found the Midland Hospital, I walked around the entire block from where the BT Telecom Tower thrust its way out of the ground and rose skywards. It was impressive, I thought.

A man on the telephone had given me the address of the hospital. He said you can’t miss it – it’s just one block away from the BT Telecom Tower and it looks so out of place surrounded by modern buildings. It sticks out like a sore thumb. He was right.

I stood in front of the sand-coloured Victorian building with its three stone staircases which converged to one and led up to the hospital main entrance. It was dwarfed by two imposing glass-skinned towers, which had clearly been designed by an architect with little or perhaps even no imagination. The motley grey-coloured granite steps had worn smooth over the passage of time, where hundreds of thousands of feet in shoes had polished the steps on their ways in and out of the hospital.

The man on the telephone told me there was an elevator just inside the main entrance immediately on the right. He said I should make my way to Suite 3.09 and check-in with the receptionist at the main desk.

I’m early. I need a cigarette. Turning my back to the gusting wind I struggled to light up, shielding the dancing flame above my lighter with my left hand. It was 10.35 am and my appointment was not for another ten minutes. I drew hard on the cigarette, inhaling the nicotine laden smoke deeply, holding it in for a second before exhaling. I was apprehensive about my appointment. The nicotine helped soothe my anxiety. I looked up and down Howland Street. I could see a couple of banks, a sandwich shop and an Italian restaurant. On the opposite corner, from where I was standing, there was a pub called The Rat and Ferret. I’d rather be in there drinking instead of out here waiting.

I took a final draw on the cigarette, then dropped it on the ground and trod on it, grinding the butt under my shoe. I turned and walked up the polished steps into the sore thumb. I took the elevator to the third floor and made my way to the Department of Nuclear Medicine – Suite 3.09.

I knew that the procedure I was here for might hold answers to some of the questions that had accumulated in my head over the past year or so. At this point in time, using this procedure as an ‘experimental’ diagnostic tool was cutting-edge medical technology. But I was more than slightly concerned that a ‘confirmed diagnosis’ while answering a bunch of current questions would only generate a bigger raft with many new questions.

A doctor had told me recently that I was one of the lucky few to have the opportunity to undertake this diagnostic procedure. I would be one of only a few thousand patients worldwide to have this scan. Strange choice of words, I thought. I didn’t feel ‘lucky’ – the exact opposite, in fact.

This unwelcome exclusivity was ratified by the jovial, highly vocal Italian Dr Selvino, who came to meet me in the waiting room of Suite 3.09. We shook hands and he introduced his associates. A female doctor called Rachel, who appeared to be in-training and a female nurse called Clarissa. It’s Scarlett Johansen’s twin sister, I thought.

Dr Rachel and Nurse Clarissa headed back to the treatment area. I was curious. I asked Dr Selvino what the nurse’s role was.

Clarissa provides patient support mainly, he replied enthusiastically. If the outcome is good, some patients – and their partners – are often quite overwhelmed with relief. On the other hand, if the outcome is not good, patients – and again, their partners – tend to get emotionally overwhelmed. You can never predict how a patient will respond to good news or bad news.

Selvino smiled at me. Don’t worry, you have age on your side – that’s a big positive.

Suddenly the magnitude of my situation hit me. This is serious. What if the ‘outcome is not good’…what then? What was I going to do if the news was not so good?

I was starting to sweat a little. Not because I was too warm in the waiting room – I was sweating as a consequence of nervous anxiety. I could feel small beads of moisture gathering on my forehead. To put it bluntly, I was starting to get scared, truly scared. Even though I am not religious I just hoped to God that the outcome was good. I’d get the all clear and confirmation that all the symptoms I had been experiencing had all been ‘in my head’. Which was kind of ironic, as all of them actually originated from there.

Calm down. Take some deep breaths.

I decided to put my coat back on. I didn’t want to carry it. Dr Selvino went on. Clarissa is very experienced in this particular area. She is a highly qualified counsellor and is a great support for patients whatever the outcome is, good or not so good. She also injects the radioactive agent a couple of hours or so before the imaging part of the procedure takes place and…

Abruptly, Dr Selvino stopped mid-sentence. I turned to look at him.

What’s wrong? I asked. He laughed nervously.

Mr Preshevski, have you any idea how slowly you put your coat on just now? I mumbled something about being more tired than usual. I wasn’t prepared to answer questions the answers to which I did not know. It was the first time someone had openly commented on my speed of movement and, of course, it would not be the last. I just became better prepared to deal with comments and questions.

Dr Rachel and Clarissa were in the treatment room, waiting. They both smiled as we entered the room.

I’ll take you through what’s going to happen, said Rachel. Come in here, have a seat – it makes more sense if you can see the equipment we are talking about. That’s it – squeeze in. I followed the doctor into the adjacent room. The equipment comprised of several polished steel machines, computers and a bed with two circular rings of steel attached at what I assumed was the head end. Wires were everywhere and a low frequency hum filled the air.

Okay, said Rachel. So, Mr Preshevski, we are going to do a DaT scan to produce a three-dimensional picture of some areas of your brain. DaT stands for ‘Dopamine Transporter’ and this substance transports dopamine across the blood/brain barrier. A radioactive agent is injected into your bloodstream and this attaches to the DaT. As the radioactive material releases gamma radiation, we can create a three-dimensional image of where the DaT has attached to dopamine producing cells. We can do this using two gamma radiation cameras, which rotate around your head very slowly on these two steel rings. Likewise, if there are no dopamine producing cells in a particular area, the DaT will not attach and the radioactive agent will not release gamma radiation. So, the brightness of the images tells us a lot about the health of the brain cells. Are you still with me?

I nodded.

Good… she continued, the most important thing about this procedure is that we need to keep your head still for the duration. Too much movement will throw the imaging computers off and the image data will be unusable. The data collection takes roughly one hour. So, we encourage all patients to try to sleep if possible, so you won’t get bored and restless. The head is held in this very comfortable cradle to help you get some sleep.

Rachel continued, The part of the brain we are interested in, are the cells that produce dopamine, mainly in the basal ganglia area. If there are cells producing dopamine there, this will show as a brighter area. If dopamine producing cells are missing from either side, these will not show up on the imagery. We can talk through the images at the end of the procedure if you wish.

She paused. Clarissa?

The nurse handed me a small dish holding two round white tablets and a small cup of water.

You need to take these two tablets now as they block the uptake of regular iodine, said the nurse, so that the radioactive agent can be absorbed. In about twenty minutes I’ll give you a shot into your arm of the radioactive agent which needs a couple of hours to circulate through your system, it can sometimes make patients a bit sleepy, so we encourage you to stay up here so we can keep an eye on you.

I swallowed the pills and washed them down with the water.

Rachel looked at me. Do you have any questions before we get started?

No, I’m good. Just a bit…well, apprehensive I guess. I just wanted to get on with the procedure now.

The last thing I remember was the comfortable pressure around my head before I dozed off. The room was warm and quiet.

I had no trouble going to sleep.

---------||---------

Mr Preshevski, are you awake?

I was coming around. I opened my eyes. I was having a dream about a pop-music band from the 1980s called Spandau Ballet. That was a little odd – I was never that keen on them.

It was almost 2.30 in the afternoon. I sat upright on the edge of the bed and yawned. What’s the verdict then?

I felt like I had slept off my earlier anxieties. I was keen to get the all clear and get out of the hospital as soon as possible. I wondered if I would get an opportunity to ask Clarissa to meet me for a drink – what were the chances of her saying yes? I am not much of a gambling man but I’d put money on her saying no.

Just give us a moment, please, Mr Preshevski, said Dr Selvino. The two doctors were huddled around one of the computer screens, discussing what they were looking at. Selvino was pointing to the screen with his pen and tapping it on the glass. They exchanged a few more words between each other before pulling back from the computer screen. Selvino ran his left hand through his thick black hair before turning in his chair to face me.

Mr Preshevski, he began with a grave expression on his face. Don’t worry, I thought to myself. Some doctors like to deliver good news in an overly dramatic way.

Dr Selvino continued, From the data collected during the scans today, it would appear that there is some significant depletion of the dopamine producing cells in the right side of the substantia nigra, which is consistent with the dystonia symptoms and movement problems you have been experiencing in the left side of your body.

He paused for breath. Clarissa moved to stand right next to me. I could feel my head going numb with the pain of realisation but I maintained my composure and an expressionless facial expression.

I’m very sorry to have to say this, he said, but I will be writing this up as Adult Early Onset Idiopathic Parkinson’s disease in my report to your referring physician.

A moment passed. I rocked gently on the bed in time with the seconds arm of the clock on the wall. I was unsure that I had correctly heard his last sentence.

Quietly, I said, Could you say that again? I’m not sure if I clearly heard what you said just then…

Selvino obliged. His voice sounded very, very far away as he repeated my diagnosis.

I’m sorry. I’m going to report this back to your referring physician as Adult Early Onset Idiopathic Parkinson’s disease.

So…is that it? That is definitely what is wrong with me?

From the imagery produced by the DaT scan and considering the symptoms you have described; it looks like classic Parkinson’s. I’m as shocked as you, especially given your age.

Any chance you misinterpreted the imagery? Can you show me, please? I was running out of steam. The whole event had drained me of energy. But surely a mistake must have been made? I stared at the computer screen waiting for the doctor to find the image he wanted.

I have Parkinson’s disease…

I have Parkinson’s disease…

Mr Preshevski, look here. These are the gamma radiation images of your brain. This is the main centre for dopamine production in your brain. See, the shape of the structure in the left part of your brain and compare it with that on the right side. Don’t forget the right side of the brain controls the left half of the body and vice versa.

The structure on the left was similar to a back-to-front apostrophe, while the structure on the right was more like a full stop. On screen, they looked like ‘ρ ο’

Dr Rachel said, Normally, the structure on the right would look like a mirror image of that on the left but the depletion we can see is the lack of a ‘descending tail’ in the right-side structure.

It was hard to argue with that. Also, the left side structure was brighter than the right, indicative of the larger number of dopamine producing cells. I conceded defeat.

I pulled on my coat, slowly. I don’t remember saying thank you as I left but I am sure I did. My head felt like someone was scrambling eggs in it. My world had imploded and exploded at the same time. Nothing would ever be the same again. I had turned 30 years old less than two weeks ago.

I have Parkinson’s disease…

It would be a long, long time before this sentence was not the first thing I thought of when I woke up each morning…and the last thing I thought of as I tried to go to sleep at night.

And it would be another three months before I could get my head together to summon up enough courage to tell my parents.

Two

The first friend I had as a child was my Uncle Pete, my mum’s brother. He used to spend as much time as possible with us at our cottage near Aylesbury in the UK – ‘us’ being me, my mother, father, a black mongrel called Wingnut and a tabby cat called Sooty. It meant that he could get out of the house he lived in, where my maternal grandparents chain-smoked cigarettes and argued regularly.

Uncle Pete and my grandparents lived on a council estate in Luton – a 20-mile drive from the cottage. He drove a Mini, an original Cooper S. He’d striped the entire car to pieces and re-built it from the engine to the reversing lights. He fitted a high intensity white spotlight on the boot door and ran a wire to a switch on the dashboard. If anyone sat on his tail, he would flick the switch and blind them with the brilliant white light. The spotlight wasn’t exactly what you would call ‘street legal’. The car’s engine was powerful enough as it was but Uncle Pete bored out the cylinders, replaced the valve springs with stiffer racing springs and replaced the standard carburettor with a gas-guzzling Weber carburettor. He fitted new wider wheels and tyres. The car was so powerful for its weight he could get a wheel spin in first gear up to second and even changing up to third gear.

While all his efforts to enhance the Mini’s performance focused on increasing acceleration, engine torque and top speed he overlooked upgrading the brakes to match the car’s elevated performance in order to slow it down. I would have put good money on him, shitting his pants on more than one occasion as the car screeched to a halt only inches away from becoming an addition to the rear bumper of the stationary vehicle in front. His high-pitched scream would be barely audible above the noise of the widened, smoke-billowing tyres as they fought to bring the car to a standstill before an impact occurred.

Like everyone in my family, Uncle Pete smoked cigarettes. My grandparents used to steal his cigarettes if he left them lying around at the house in Luton. Or they would light up when Uncle Pete was not in the room or if one or the other of them left the room. That way, they wouldn’t have to offer Uncle Pete or the other of them a cigarette. Protecting your cigarettes in that house involved more strategy than a game of chess.

Uncle Pete had a job as an overnight security guard at a warehouse on an industrial estate. Occasionally, a delivery would arrive in the evening. One Wednesday, a pallet load arrived and Uncle Pete signed the paperwork, taking delivery of 20,000 cigarettes, all boxed up ready for distribution around Luton. A couple of weeks later, the same truck arrived at the warehouse with another consignment of cigarettes.

Where’s Bob? The usual driver? asked Uncle Pete.

I think he left the company or maybe he got fired or something? came the reply. I’m the new driver, name’s Fergus. Originally from Cork, now living in this shite hole. He swung himself back up to the open door of his cab and pulled the door shut. He waved a salute to my uncle. Then he was gone.

Uncle Pete went back to the office. He picked up the phone and dialled.

Dave, it’s Pete. Can you bring your van down to the warehouse? he said, Yeah, some silly sod just delivered 20,000 fags but nobody signed for them, so they need to find a home to go to…if you know what I mean.

Nobody in my family brought another packet of cigarettes for nine months.

---------||---------

Uncle Pete would come over to the cottage on his rostered days off work. Sometimes he would get three or four days off in a row. At night he would sleep on the sofa. My mum, Suzanna, didn’t mind. She was grateful for the company. My dad, Terry, worked long hours during the week and then at weekends, he would drive a taxi just to make ends meet. He felt less guilty leaving my mum and I alone, knowing Uncle Pete was at the cottage. Besides, he and Pete got along well. Both being petrol heads, they never ran out of conversation.

Mum knew that Uncle Pete hated living with their parents. Occasionally, my father would drive us to Luton to see my maternal grandparents when he could take some time off on a Saturday or Sunday. Don’t leave your cigarettes lying around, Terry, my mum would remind him as we pulled up outside the house.

Less frequently we would visit my dad’s parents, who also lived in Luton about a two-mile drive across town from mum’s parents. They owned their house and ran a petrol station business along with an engineering firm. My paternal grandfather was Polish and was an engineer when World War II broke out. He was captured by the Nazis in war-torn Europe and was put on a train to one of the many Prisoner of War camps. He knew that he would probably die in a PoW camp, where workers literally worked themselves into an early grave at gunpoint. He decided to take his chances.

As the train slowed, he and several other men pulled up some of the floorboards and escaped from the train. My grandfather made his way to Spain where he was able to take a boat to England. Being an engineer, he was actively employed in the war effort and worked on the Spitfire aeroplane. For the 22 years I knew him, he had a gold model of a Spitfire in flight on the bookcase behind his armchair. I was fascinated by this – as I was by anything to do with flying and aircraft. He met and married my grandmother in 1946. She was a reasonably good tennis player in her younger years.

Despite living in England for almost 50 years after World War II, my grandfather had not learned English to any degree of proficiency. Dad’s parents had disapproved of my mum and dad’s marriage and as time went on, it became clear there was a diminishing desire in my parents to visit them. Besides, my dad just didn’t want to. He had his own reasons for feeling this way.

By contrast, my maternal grandmother worked in the Land Army during the war. Her husband-to-be was a ground to air gunner during the war and was stationed in what was the former Palestine. Later during the war he was stationed in Southern Italy. He regularly supplied the local women with tins of corned beef.

I can only imagine how they paid my grandfather for it!

---------||---------

Uncle Pete walked with my mum and I to my play group along the Dunstable Road. I would go for a couple of hours twice a week. My parents felt it was good for me to socialise with the other children, so I would go to play group and play on my own. We always took Wingnut for the walk. He had a choker neck chain attached to a lead. At play group, my mum could chat with the other mums about nappies, poo, wee, toddler vomit, breastfeeding, discharges and other joyful topics that mothers with young children seem to enjoy.

Uncle Pete would invariably stay outside with Wingnut. Most days he would carry on walking the dog up to the junction of Dunstable Road with Ivinghoe Beacon Road. There was a nice view across the livestock fields to the Chiltern Hills in the north of the county. There was a seat for people who wanted to admire the view while taking the weight off their feet – it made for a perfect cigarette break.

He was the only person at the wood and cast metal seat that morning. With Wingnut at his feet, he pulled a cigarette from the pack, lit it and inhaled. He put his head back against the top of the seat, enjoying the warm spring sunshine. He felt the dog moving, trying to find a more comfortable position on the rough ground.

It is difficult not to feel sleepy, he thought. There was an ash tray attached to the arm of the seat. He took a final drag on the cigarette before stubbing it out in the ash tray. His eye lids became heavy. He could resist no longer.

In the fields the sheep and lambs were bleating and chewing grass. They wandered about aimlessly. The lambs kept close to their mothers. I have no idea how people can eat roast lamb. Firstly, where is the meat? Secondly, how can you kill those gorgeous little fluff balls? One minute they are dancing and prancing along in the field alongside their