This is My Life

PETER JS ASHLEY

This is my life
And I don’t give a damn for lost emotions
I’ve such a lot of love I’ve got to give
Let me live
Let me live
This is my life.

THE DIAGNOSIS

THE DATE WAS 20 July 2000, the time approximately 11:40 in the morning, the place the Cerebral Function Unit, Greater Manchester Neuroscience Centre, Manchester Royal Infirmary/Manchester University.

My wife and I were called into a consulting room to see my neurologist and psy- chologist. The desk was covered with the results of tests carried out during the pre- ceding three months. These included an intense battery of psychological cognitive tests, my physical performance analysis and various specific motor coordination and functional tests, my MRI and SPECT scans, the reports of the neurologist, psychia- trist, psychologist and other staff who interviewed me at various times, along with reports from my GP and psychiatric consultants at our local mental health hospital where, for several years, I’d been both an inpatient and outpatient.

My neurologist stated: ‘Mr Ashley: we have come to a diagnosis. We believe you are suffering from Lewy body syndrome’. My immediate reaction was naturally one of shock as I realised that this was a dementia from the research I had already undertaken on the internet.

Whilst both my wife and I suspected that my condition was serious, the shock of receiving such a diagnosis was immense. However, we recovered our composure quite quickly and looking back on these events, were surprised at how intense our questioning had been of the two professionals present.

We studied all the reports and examined the scans, asked many questions and I even asked for copies of the scans which I still have to this day.

My recollection is that the consultation took quite a long time following which we sat in the hospital café having a cup of tea to try and recover prior to leaving the hospital for the 10 miles or so drive home. Later that day, as we sat on the patio in the sunshine, we literally wept to think of the consequences that we assumed would take place from all we knew of this diagnosis.

In the many subsequent presentations and lectures I have given over the years I’ve characterised our emotions during the ensuing six months as sequentially falling into the following five categories.

— Utter shock: trauma, grief.

— Disbelief.

— Mourning—for me!

— Realisation.

— Resurrection.

I felt shocked that something so dramatic as a terminal illness, rather like cancer, had happened to me, but which, unlike cancer, would divest me of my ability to recognise my wife, my family and my friends and in addition would rob me of all those skills which I had acquired during a happy and fulfilling personal and busi- ness life. Thereafter, an inability to communicate verbally—something I have done effectively throughout my life. The utter despair and inability to enjoy all those things that had gone before, such as my leisure interests: reading, debating, listen- ing to music, sailing, sub-aqua diving, playing the piano and organ, etc. The steady erosion of my memory.

These feelings were followed by total disbelief that this could happen to me. Like most of us I had put to one side my mortality as a member of the human race and regarded myself, rather naïvely with hindsight, as living for many more years, for in 2000, at 64, I’d just achieved one of my major ambitions by becoming a founding shareholder and Group Technical Director of a computer graphics public company. As far as I was concerned my future was clear and I had it all mapped out. I was never going to retire. Perhaps I would take it easy, but in my dotage I would still do what I’d always done—work in my professional calling of computing, electronics and mathematics.

All the efforts I’d put into achieving my goals of providing our family with an enjoyable and fulfilling life were for nothing. The sacrifices I had made when miss- ing many holidays, seeing my children grow up and enjoying the rewards I had achieved so far, were all for naught. The fruits of my labour were lost at a stroke and my entrepreneurial skills were now to be wasted.

The dictionary defines mourning as an expression of deep sorrow. It is this feeling that consumed my wife, me and our children following my traumatic diagnosis; it was as though a living death had arrived. For my part, whilst I had suffered from bouts of intense depression all my life, this was far worse.

Eventually, realisation came as a consequence of receiving a diagnosis; then try- ing to come to terms with it and reconciling all that you have gleaned from the information you have read and which has been given to you by others—information which, at the time, you assumed was provided by people far more knowledgeable than perhaps they really were. This goes both for people with a dementia and their carers and somewhat surprisingly many so-called professionals. Your realisation is more often than not based on what you subsequently learn is an averaging of the realities surrounding all the different types of dementia. I have learnt there are more than a hundred types. Dementias cannot be normalised, as you begin to realise with the passage of time. No two sets of conditions, let alone their related circumstances, are ever the same.

Resurrection is a word which occurred to me in December 2000 but I suspect and regret may not occur to the majority of other people having a diagnosis of a dementia.

It is my fervent hope that things will change and that this philosophy will be seen as potentially beneficial in leading some from their initial diagnosis to enjoying a better life—certainly in the early phases of the condition. Not the magic elixir we all eventually long for, but a form of remission for a few more years.

MY RESURRECTION

In January 2001, more or less six months from the date of my diagnosis, I suddenly realised that I had to make the best of my life and channel all my efforts and what- ever resources were left to help myself, my wife and my family. My feelings were that this would help me, but in doing so, if I could share what I was planning with others in a similar position, it might help them as well.

I determined to strive and not allow my physical and mental attributes to degener- ate in the manner that had been predicted by all the professionals I’d seen. I would not give in to my condition. What better way than to start learning about my con- dition in as great a detail as possible But in doing so I knew I must not lose sight of the fact that this was not just about me and my family, but about the 700,000 people in the UK alone who had received a diagnosis of a dementia.1 If I could serve myself and at the same time work in the interests of everybody affected by dementia—the person with dementia, the family carers, all the professionals who work hard to identify the genesis of our conditions—this would become my life’s work for whatever period I had left. A challenge perhaps, but if successful, what wonderful rewards. On the basis ‘you never know until you try’ I ventured forth in January 2001 with, I will now admit, some fear and trepidation, on my New Year’s Resolution!

Not known for being slow at identifying an opportunity to explore my strategy, I targeted first a small group of professionals I had come to know and respect in the previous six months, and secondly the Alzheimer’s Society—a leading body sup- porting at least, as their name implies, people suffering from the most numerically significant form of dementia. I rapidly learnt that the Alzheimer’s Society, in spite of its name, covers the full spectrum of dementias.

The professionals I approached were only too willing to help, although many of them found it strange that a person with any form of dementia, let alone dementia with Lewy bodies, should want to take this course of action. I will be forever grate- ful to these individuals for the faith they put in me and for their unlimited coopera- tion. Sadly there is no room to name them all but it would be remiss of me not to mention and thank Harry Cayton OBE the then Chief Executive of the Alzheimer’s Society and Dr Nori Graham, who at that time was Chairman of Alzheimer’s Disease International.

1 This figure has now been reassessed in 2014 to be nearer to 880,000.

My greatest breakthrough occurred during 2001 when I became a member of the Alzheimer’s Society and became heavily involved not only with the Alzheimer’s Society itself, but with Alzheimer Europe and with Alzheimer Disease International. At this point I’d like to go back in history, before picking up this story again in 2002. In stepping back, my observations are more to do with my early adult life and more particularly to the latter part of the 1990s.

MY PAST: MATTERS PRIOR TO MY DIAGNOSIS WITH DEMENTIA

Throughout my adult life I could have been categorised as a total workaholic, being very intense and highly strung in all that I do. I am obsessive with attention to detail.

After serving in the RAF as a regular (four years), I completed my education graduating in the late 1950s in electrical engineering, computing (still in its infancy), electronics and mathematics. Subsequent to this, a progressive career developed working in numerous sectors of the electronics industry and academia until I achieved the significant position of a major shareholder, founding member and Group Technical Director of a public limited company, as well as being the director of several related subsidiaries. Throughout this period I spent much time travelling abroad in pursuit of technical innovation and to study the developing areas of com- puting and its potential application.

All my adult life my health had been pretty good, with a couple of exceptions. I have regularly suffered from clinical depression. I also have mild OCD, which results in me being meticulous and fastidious. I have a preoccupation with the num- ber three and multiples thereof and also the subject of prime numbers.

LIFE AFTER MY DIAGNOSIS

I now want to return to January 2001, from when I date the start of my ‘resurrec- tion’, and life as it has evolved to the present.

My vow at that time was to ensure that I would make the best of my life and endeavour to work hard to this end. This was first and foremost for my own sur- vival and to fight what I thought might be the inevitable consequences of developing a dementia (‘If you don’t use it, you’ll lose it’, I thought); but secondly, to try and work in a way which would give back to the community of people that I was now a part of as much as I possibly could.

As a consummate professional I knew that this couldn’t be achieved without a much more comprehensive understanding of the subject with which I was dealing, my own condition and of those related to it. In my mind, I drew up a plan which would necessitate befriending as many professional experts as I could find in the medical, scientific and voluntary areas. Little did I realise at that time how welcom- ing many of these people would be, and I was heartened as I carried out my task to find just how cooperative people were.

I was elected as a trustee of the Alzheimer’s Society, and served for four years. It appears that this was the first occasion on which any person with a diagnosis of a dementia had been elected to the governing body of the relevant national society anywhere in the world.

I worked closely with two staff members of the society—Rachel Litherland and Nada Savitch—to develop a ‘Living with Dementia’ group within the Alzheimer’s Society. We coined the phrase ‘Living with Dementia’ which I’m delighted to say has become universally used as a descriptor for people who have such a condition. I also started carrying out presentations to both national and international audi- ences, people with dementia, carers, volunteers and professionals of all callings to try and spread the message that we were trying to convey. And I always rounded off my presentations by including the phrase: I am living with dementia, not dying from dementia.

During the last 14 years, my condition has taken its toll in some respects; my motor functions are the worst hit and I can no longer write, play the piano or organ and have extreme difficulty walking so I tend to spend much of my time in a wheelchair. My tremors, although well controlled, can sometimes be a nuisance. But, and it’s a very big ‘but’, most important of all I do not appear to have lost my intellectual competency nor is my memory greatly impaired. I guess it is through sheer determination and ‘exercising the brain’ that I am able to lead an active and productive life. Through studying my condition and the organic causes I have a fundamental belief in the principles of neuroplasticity and neurogenesis and whilst these are poorly researched there is, in my opinion, great opportunity for their inves- tigation in much more detail.

During this period I have undertaken more than 200 presentations in the UK and internationally on all aspects of dementia and related subjects. Building on my role as a trustee of the Alzheimer’s Society, I went on to become one of their ambassadors (a role which I have recently relinquished). I was involved in the formation of the Lewy Body Society (now affiliated to Parkinson’s UK) and am an ambassador. I am also an associate of Innovations in Dementia CIC.

In 2004, I joined the Guideline Development Working Group commissioned to produce the NICE/SCIE Dementia Guidelines CG42 (published 2007) which subsequently became the definitive work on supporting people with dementia and their carers in health and social care. I was one of a team of 28 which comprised 25 professionals working in the field of dementia, two carers and myself. It can be said without fear of contradiction that it was this document that set the scene for all subsequent developments in the dementia area.

The publication of the Mental Capacity Act 2005 was a major step forward in determining the rights of people with mental illnesses, and more specifically demen- tia. I was a member of the drafting team; I took part in much of the associated promotional work thereafter.

It has to be said that this was an extremely difficult subject to address, and whilst we made enormous progress in its original form, even following a redrafting exer- cise in 2007, it contained many contentious issues, most of which are down to ethi- cal matters of concern and disagreement between all the related parties.

February 2009 saw the publication of Living Well with Dementia: A national dementia strategy and I was again a member of the working group on this proposal. The work group comprised 41 professionals and five carers/people with dementia of which I was one.

This document, more so than the Dementia Guidelines, tends to be quoted as the foundation for current thinking, but in reality it uses much of the work in the Dementia Guidelines and adds more of a political imperative to the subject.

I have served on numerous other bodies concerned with health and social care. These have used my professional skills in computing, electronics and IT.

‘SO WHAT ABOUT ETHICS?’

This book is about ethics and the law and all I’ve done is to write about me! This is not borne out of some great egotistical dream, although I am producing an auto- biographical work from which much of this chapter has been drawn.

I am trying, in the context of my own ‘success’ of ‘living with dementia’, to engender in the minds of readers that in many (I admit, not all) a good life is still possible. You have to work at it very hard if you are to succeed. Traditionally, being given a diagnosis of dementia meant the end: all the collective consequences of all the dementias were heaped on you in an instant and your illness was immediately compounded in its severity.

And this is where the ethics come in. Those around you assume the worst and impose on you their interpretation of your condition. They assume that they know far better than you do. Even medically this is not always the case, as you have to experience and ‘live’ with a condition to be an expert; you are an expert by experi- ence. When I get hallucinations, nobody, no matter how professionally trained they are, can explain what it’s really like. In this situation I’m the expert and it must be recognised.

In a care situation a carer who imposes their will in place of yours is ethically incorrect. Don’t get me wrong: carers are worth their weight in gold, but to remove the individuality of a person prematurely is wrong in every way.

A friend of mine was leaving a day centre and his wife (his carer) said: ‘Have you said thank you?’ He was just as clear thinking as me and could decide for himself whether he wanted to say thanks or not. His carer was being ethically incorrect. There’s no doubt his wife loved him dearly, but she was wrong.

But I can’t put my pen down (metaphorically speaking) for in my case, it’s my voice recognition software that physically writes this for me—there are ways around everything.

I started by quoting the words of ‘This is my life’. I can hear Dame Shirley Bassey singing in my head as I write This is my life, and with the help of my wife Ann and my family, and all my friends and professionals around me, it will remain so!

Funny how a lonely day, can make a person say: What good is my life?

Funny how a breaking heart, can make me start to say: What good is my life?

Funny how I often seem, to think I’ll find never another dream In my life

Till I look around and see, this great big world is part of me And my life

This is my life

Today, tomorrow, love will come and find me
But that’s the way that I was born to be
This is me
This is me

This is my life
And I don’t give a damn for lost emotions
I’ve such a lot of love I’ve got to give
Let me live
Let me live

Sometime when I feel afraid, I think of what a mess I’ve made Of my life

Crying over my mistakes, forgetting all the breaks I’ve had In my life
I was put on earth to be, a part of this great world is me And my life

Guess I’ll just add up the score, and count the things I’m grateful for In my life

This is my life
Today, tomorrow, love will come and find me
But that’s the way that I was born to be
This is me
This is me

This is my life
And I don’t give a damn for lost emotions
I’ve such a lot of love I’ve got to give
Let me live
Let me live

This is my life This is my life This is my life.