Parkinson's Hasn't Got Me Yet

By Willie McCarney

Willie McCarney’s early years were studded with a series of traumatic incidents culminating in the death of his mother, when he was still under 10 years old. Everyone has to learn to deal with the ups and downs of life but Willie seemed to be getting more than his fair share of hard knocks. A Japanese proverb advises: “Fall down seven times. Stand up eight”. Like a baby learning to walk, Willie was back on his feet after every knockdown, stronger than before. He studied hard, qualified as a teacher and later as a trainer of teachers. He got married. Three months after the wedding his wife was struck down with an incurable disease. To hold it together when everyone else would understand if you fell apart, takes strength. Willie was not going to allow himself to be crushed, not even when Parkinson’s came knocking at his door. This book is the story of his fight back which continues 10 years on. He argues that the more physically active you are, the easier it is to live well with Parkinson’s. He offers hope in the future.

• Language: English
• Publisher: Austin Macauley Publishers
• Release date: Oct 13, 2023
• ISBN: 9781035822751

Willie McCarney

Dr Willie McCarney was a University Lecturer training future teachers how to work with disaffected youth. He was also a Lay Magistrate in Belfast Youth Court and in Belfast Family Proceedings Court for 34 years. He was President of the International Association of Youth and Family Judges and Magistrates. He travelled the world on behalf of the United Nations Development Prpgramme, UNICEF and the Council of Europe training judges in the use of international instruments concerning the rights of the child. Considering all he accomplished, it is hard to believe that his life’s path was strewn with traumatic events from early childhood through adulthood. This book focuses on one event, his battle with Parkinson’s, and illustrates his resilience in the face of adversity. Dr McCarney is a Doctor of Psychology, not a Doctor of Medicine. Parkinson’s Hasn’t Got Me Yet’ is a fascinating and well researched manuscript about Parkinson’s Disease. It covers what the disease is, who it affects, the symptoms and the treatment through medication and exercise. The manuscript is based on the author’s diary. Starting four years before diagnosis the author records, with well-balanced sensitivity and striking honesty, how the symptoms affect him. He made no secret of the fact that he had Parkinson’s. The inclusion of the record of his walking achievements fundraising for Parkinson’s support his argument that Parkinson’s did not have him. The author also included hospital/doctor appointments. The names of consultants and medical staff treating the author and others offering various levels of support are not included, in the interests of anonymity.

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About the Author

Dr Willie McCarney was a University Lecturer training future teachers how to work with disaffected youth. He was also a Lay Magistrate in Belfast Youth Court and in Belfast Family Proceedings Court for 34 years. He was President of the International Association of Youth and Family Judges and Magistrates. He travelled the world on behalf of the United Nations Development Prpgramme, UNICEF and the Council of Europe training judges in the use of international instruments concerning the rights of the child. Considering all he accomplished, it is hard to believe that his life’s path was strewn with traumatic events from early childhood through adulthood. This book focuses on one event, his battle with Parkinson’s, and illustrates his resilience in the face of adversity.

Dr McCarney is a Doctor of Psychology, not a Doctor of Medicine.

Parkinson’s Hasn’t Got Me Yet’ is a fascinating and well researched manuscript about Parkinson’s Disease. It covers what the disease is, who it affects, the symptoms and the treatment through medication and exercise. The manuscript is based on the author’s diary. Starting four years before diagnosis the author records, with well-balanced sensitivity and striking honesty, how the symptoms affect him. He made no secret of the fact that he had Parkinson’s. The inclusion of the record of his walking achievements fundraising for Parkinson’s support his argument that Parkinson’s did not have him. The author also included hospital/doctor appointments. The names of consultants and medical staff treating the author and others offering various levels of support are not included, in the interests of anonymity.

Dedication

To my sister, Una, my principal carer, who is always at my side, offering a helping hand when I am down, ensuring that the path ahead is obstacle free.

To my son, Liam, for his encouragement and support in all that I do.

Copyright Information ©

Willie McCarney 2023

The right of Willie McCarney to be identified as author of this work has been asserted by the author in accordance with sections 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 the 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 9781035822744 (Paperback)

ISBN 9781035822751 (ePub e-book)

www.austinmacauley.com

First Published 2023

Austin Macauley Publishers Ltd®

1 Canada Square

Canary Wharf

London

E14 5AA

Acknowledgement

I Acknowledge this book to:

The ever-growing list of consultants, doctors, nurses and therapists who look after my medical needs with such care and attention.

Angela, Meabh and Nuala who are my inspiration when things get really tough.

My good friend, Tommy Fee, who convinced me that I must finish the book in the interests of all those who are looking for a light at the end of the tunnel.

All my friends and relations who are so supportive, particularly, in my fundraising events for Parkinson’s.

My sister, Una, and my son, Liam, who gave up so much of their valuable time proofreading the text.

Chapter 1: Introduction

I knew little about Parkinson’s disease (PD) when I was growing up. If asked to describe it, all I could have said was it gives you the shakes. Shaking is the symptom most people think of PD was commonly referred to as ‘The shaking Palsy’.

James Parkinson was a surgeon and political activist working in London around the turn of the nineteenth century. His description of the disease in ‘An Essay on the Shaking Palsy’ was considered to be his outstanding contribution to medical science and led to the disease adopting his name. He described it as a disease characterised by ‘Involuntary tremulous motion’ before going on to list a wide range of other physical and psychological symptoms which a person with PD can experience.

What Is PD?

PD is a progressive neurological condition that destroys the brain cells producing the chemical messenger dopamine in the part of the brain that controls movement. Exactly what causes the loss of nerve cells is unclear. Scientists are convinced that genetics, environment and aging interact to cause the disease, but they don’t know how.

Dopamine enables messages to be sent to the parts of the brain that co-ordinate movement. With the loss of dopamine-producing nerve cells, these parts of the brain are unable to work normally, causing symptoms of PD to appear. The level of dopamine then continues to fall slowly over many years, causing current symptoms to further develop and new symptoms to appear.

The list of physical and other symptoms of PD is long and the range of possible motor problems that can appear is wide. The most recognisable symptoms are tremor (shaking), slowness of movement and rigidity (stiffness). Other recognised motor signs and symptoms include gait and posture disturbances (e.g., rapid shuffling steps and a forward-flexed posture when walking) and postural instability (falls and dizziness).¹

It is important to remember that PD is a complex condition that affects different people in different ways. Everyone’s experience of PD is different. Not everyone will experience all of the symptoms listed. The order in which symptoms appear and the way symptoms progress varies from person to person.

Who Is Affected?

It is thought that around one in 500 people are affected—i.e., an estimated 145,000 people in the UK with the condition. Every hour, two more people are diagnosed. That’s the same as 18,000 people every year. It is estimated that about 10 million people worldwide have PD and that this will increase to over 12 million by 2040.

Most people with PD start to develop symptoms when they are over 50, although around one in 20 people with the condition first experience symptoms when they are under 40. Men are more likely to get PD than women.

How Is It Treated?

There is currently no cure for PD, although treatments are available to help reduce the main symptoms and maintain quality of life for as long as possible.

These include supportive treatments (such as physiotherapy and occupational therapy), medication,² and in some cases, surgery. No treatment may be necessary during the early stages of PD as symptoms are usually mild. However, patients are advised to arrange regular appointments with a specialist so that their condition can be monitored.

PD is a progressive, fluctuating condition that affects everybody differently, and can change on a day-to-day, or even hour-to-hour basis. The symptoms, and how quickly the condition develops, differ from one person to the next. While it affects some people quickly and severely, many people live for years with the condition and live a full and active life.

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For a more detailed list go to www.nhs.uk and find ‘Parkinson’s Disease-Symptoms’.↩︎

Most patients with PD are put on medication to help manage their symptoms. The medication of first choice is a combination of levodopa and carbidopa—for example, Madopar, which I am on. This is the most effective treatment available for the management of motor symptoms. However, it can cause a number of side effects which I discuss later.↩︎

Chapter 2: Symptoms That Impact Me

I list below the symptoms significant to me. I will provide some detail on how the various symptoms impact day-to-day living and what steps have been taken to ease any accompanying discomfiture.

2.1: Eye Problems

It may seem rather strange that I begin a review of symptoms by discussing ‘eye problems’ since ‘eye problems’ do not feature on the list of main symptoms or on the extended list of ‘other symptoms’ as published by the NHS. The specific reference to ‘blurred vision…when moving from a sitting or lying position to a standing one’ is not what is being discussed here. Let me explain.

Sometime around 2010–2011, I began having problems with double vision. At first, it was only when watching TV, especially watching football. I used to joke with Una and say that the referee should put those extra players off. Then it became a problem when I was tired and talking to someone on a one-to-one basis. I was frequently seeing two people in front of me. I used to joke that I knew which one to speak to—the right one was always on the left.

But it was no joke when it began to impact my driving. I couldn’t be sure how many cars were on the road or which lane they were in without closing one eye. In June 2013, I rang my ophthalmic consultant, who was treating me for glaucoma, and asked for an urgent appointment. I told him about the double vision and said that I had decided to give up driving until he could assure me that it was safe to continue. I added that blurred vision and ptosis (a drooping eyelid) were also beginning to be a problem.

My consultant didn’t appear too concerned. He told me that, as we get older, several diseases of the eyes can occur which show these symptoms. These include cataracts, macular degeneration and glaucoma. He was treating me for glaucoma. He had already removed a cataract from my left eye and advised that the one in my right eye could be removed later. Otherwise, my eyes were in good shape and he had no problems with me driving—as long as I promised not to drive when tired. He said that, if I was going on a long journey, I should be accompanied by a qualified driver who could take over if necessary.

It appeared to me, from searches I had carried out on the Internet, that my blurred vision, double vision and drooping eyelid suggested that I had myasthenia. I put this to my consultant at our next meeting. He replied that myasthenia is a neurological problem and neurology was not his field. He referred me to a colleague in that department.

The neurologist agreed that myasthenia was top of the suspect list. He took some blood samples and sent them off for testing. He then sent me for a scan. I made an appointment with him for early January 2014 to hear the results of the tests. The scan showed an enlarged Thymus gland, believed to be benign. Otherwise, the tests were inconclusive.

What the neurologist said next came as quite a shock. He said that, standing at his office window, waiting for me to arrive, he watched me walking from the car park. Observing me closely, he noted gait and posture disturbances which are recognised motor signs and symptoms of PD. For clarification, he added that I walked with shuffling steps and a forward-flexed posture (a forward bending of the lower joints of the spine). He also noted that, while my left arm was swinging, my right arm was not. He said to himself, There’s a man with PD! He then went on to say that, just as PD can affect general mobility, it can impair movement of the eyes. Problems like blurred vision, double vision and ptosis are not uncommon in patients with PD, but they generally occur at an advanced stage of the disease. He had never had them as presenting problems before.

He carried out some further tests which confirmed the PD diagnosis. Realising that this unexpected news came as quite a shock, he reassured me, saying that he could keep it under control for ten-fifteen years with medication.

He started me on a course of Sinemet to treat the PD and Mestinon, a drug used to treat myasthenia, which he hoped would control my drooping eyelid, blurred vision and double vision. He recommended that I ask my optician to provide me with special lenses containing prisms to deal with the double vision in the interim.

He said we could increase the strength and frequency of the medications as appropriate. He suggested that I make an appointment to see him every six months so that he could monitor developments.

Shortly after starting on Sinemet, my tongue began to swell up. I had no reason, initially, to suspect the new medication. However, as the problem appeared to be getting worse, I went to see my GP. He said that I had taken an adverse reaction to Sinemet and prescribed Madopar instead. I have been on Madopar since then.

I will discuss adverse reactions to medications in Chapter 4. At this point, I want to continue the focus on the symptoms and comment on how they impact me.

2.2: Tremor-Shaking

The three cardinal symptoms of PD are tremor (shaking), slowness of movement and rigidity (stiffness). Tremor is the most recognisable symptom, and the one most people think of when PD is mentioned. Surprisingly, approximately 30% of patients suffering from PD, including myself, do not have tremor. When I tell people that I have PD, most will say that they would never have guessed. My hands shake a little but not so much that anyone would notice except, possibly, when I try to lift a heavy mug of tea/coffee with one hand, or when I am trying to measure out a heaped teaspoon of something. As the years slipped by, I have started putting on a bib at mealtimes. I have a certain sympathy for a man who told his GP that his hands had started shaking quite a lot. After examining him, the doctor asked, Do you drink a lot?

The man replied, No. I spill most of it! I am happy to say that I don’t spill so much food—except when I am wearing my Sunday best clothes and have forgotten my bib!

Seriously, it is still the case, more than eight years after diagnosis that few people would guess that I have PD because there is seldom any visible tremor.

2.3: Slowness of Movement

Slowness of movement³ is the second of the three cardinal symptoms of Parkinson’s.

Physical movements are much slower than normal, which make everyday tasks difficult and result in a distinctive slow, shuffling walk with very small steps. Everyday tasks, such as paying for items at a check-out, take longer to do.

Slowness of movement is a major irritant. It encroaches on every minute of the day. I can never really explain why it has taken so long to do something or why I have not managed to complete all the little jobs I pencilled in under ‘things to do’ on any particular day.

It doesn’t seem so long ago that I could jump out of bed, get washed, dressed and be out the door in five or ten minutes, if the need arose. How could this morph into 60+ minutes?

It was easier to understand my slowness when I took Kiki for a walk. I was tired before I started the walk, and my legs were heavy. My knees were always sore, my hip was generally sore, while my other joints were often sore. There is a fairly steep hill on my normal circuit which was becoming increasingly problematic because my knees were exceedingly painful going downhill. Consequently, my descent was slow and cautious. I decided to avoid hills altogether and stick to level ground. The walks got shorter, the time taken got longer, but my resolve to keep walking got stronger.

On getting back home, I would have an early brunch so that I could take my medication. I would open my computer and start checking my emails. After sending responses where necessary, I would read a range of newspapers online and then retire to the lounge to watch the 1 p.m. news. Alternatively, I would do some housework or some work in the garden. Then I would prepare dinner. As PD began to tighten its grip in other areas, preparing dinner was taking so long that everything else was falling by the wayside. In the end, I conceded that it was time to get some help in this area.

After dinner, I liked to sit in the lounge and listen to the evening news while I looked things up on the computer or continued writing some project or other that I was involved in. Here, too, it was easy to understand, why my progress was slow. I found myself regularly waking up, having ‘nodded off’ in mid-sentence. I may have only been asleep for a few seconds. But this understandable feeling of lethargy pervaded the entire evening. It was no surprise that progress here was slow.

Clearly, ‘slowness of movement’ is easier to explain in some situations than in others. Preparation for bed used to take five or ten minutes. As the years rolled by, I found that I was struggling to be ready in an hour. Ninety minutes was looking like a more realistic target. A time and motion expert would note, for example, that I don’t pull my shirt over my head when getting dressed. All the buttons have to be undone. I slip my arms in first and then do the buttons up, one at a time. Each button can be a job in itself if my fingers aren’t working well. The need to do up buttons and belts, to sit down to get my pyjama bottoms off and my trousers on, can explain much of the delay—but not all. It is as if my private world has slowed down while the world outside moves on apace. It was not until the two worlds come together again that I realised that the time I thought I was taking was out of sync with real time.

In 1872, Jean-Martin Charcot distinguished bradykinesia (slowness of movement) as a separate cardinal feature of PD. He said that the delay was between the thought and the action. I think of trying to send a message on my computer and getting a warning ‘you are not connected to the Internet’. The message won’t go until you are. For those of us with PD, the loss of dopamine-producing nerve cells means that the parts of the brain which control movement are unable to work normally. Delays are inevitable.

While slowness of movement is a major irritant, encroaching on every minute of the day, and on everything I do, or try to do, there is one area where I was grateful for it.

As the years roll by, PD is tightening its grip on practically every aspect of my life, but it is doing so slowly, ever so slowly. For this, I am eternally grateful. I am aware of others for whom deterioration is frighteningly fast.

By the beginning of 2020, I was still able to take Kiki for a walk, make the dinner—once all vegetables were prepared for me and look after our large flock of three hens. True, it was becoming a bit of a struggle to fit it all in, but I could still do it. Then, came the first COVID-19 lockdown. Overnight, normal life was put on hold. For the next four months, I was confined to home and garden. When the first lockdown was lifted, I no longer had confidence to go out walking alone. And I discovered that making the dinner and looking after the hens gave me a full day’s ‘work’! (I will return to this later).

2.4: Gait and Posture

My neurologist watched me walking and noted that I ‘walked with slow, shuffling steps and a forward-flexed posture’-recognised motor signs and symptoms of PD. I slot it in here because this is what made him suspect that I had PD. I heard these words again very recently when I attended the department of neurophysiology in the Royal Victoria Hospital (RVH) for a nerve conduction test—more of that later. The head of department was standing at the door waiting for me. He greeted me with, I was watching you coming down the corridor. When I saw the short, slow, shuffling steps and the forward-flexed posture, I said, ‘Here is a man with Parkinson’s. So, I knew you were coming to see me.’ Clearly, nothing much had changed in this area since diagnosis, except that my steps were slower and shorter. I still have that forward-flexed posture, despite my efforts to maintain an upright stance.

2.5: Postural Instability-Falls and Dizziness

I used to be very sure-footed, and I was never troubled with dizziness. I loved jumping from rock to rock while walking along the seashore or walking along a cliff edge so that I could see what birds were nesting. Now, I keep off the rocks and away from the cliff’s edge. I no longer have a ‘head for heights’ and I feel dizzy at times.

Sometimes, when walking, I will take a sudden step to the side. It makes me think of a cartoon character of yesteryear, Andy Capp,⁴ trying to walk on a white line to prove that he wasn’t drunk. He said to the police officer, If you hold the line steady, I’ll walk on it.

My neurologist told me that it is very common for people with PD to fall and suggested that I get a walking stick. I said I had been resisting a walking stick because I was afraid people would think I was getting old, and I was still a few months short of my 80th birthday. I added that we couldn’t call it a stabiliser, since that is what children use. He asked me if I knew what an ‘outrigger’ was. I said, It is what young men use in Hawaii when riding the waves in their canoes. The outrigger stops the canoe toppling over. I used one myself in Hawaii.

The neurologist asked, Why don’t we call your walking stick an ‘outrigger’ since its function is to stop you toppling over?

I said, Ok, and promised that I would use my ‘outrigger’ from then on. Few consultants would take part in this kind of banter. I had a great relationship with my neurology consultant which is why I missed him so much when he went off on extended sick leave in 2017. Una agreed that he was ‘kind of special’.

I mentioned earlier that I often felt light-headed and dizzy while out walking Kiki and was beginning to wonder if it was wise for me to be out walking alone. Then lockdown took the decision out of my hands. I had a few falls in the house, but all with soft landings falling back into my chair or back down on the bed while trying to stand up. There were also plenty of near misses, but there was always something to grab hold of.

I had my first free-fall on 7 September 2020, the day after the first ‘freezing’ episode on the Lagan Towpath (Chapter 8: Sept. 5–7). I was in the garden shed getting food for the hens. I came out, closed the door and was about to turn round when I lost my balance and fell down on my bottom. I was lucky that it had been raining and the ground was mucky. So, it was another soft landing. I can still see the hens standing looking at me, probably wondering why I had chosen this method to deliver their food.

Following these incidents, I decided it was time to start using a rollator. Four wheels mean it is very stable which gives me confidence while walking with it. It has a container which holds gloves, scarf, cap, tissues and