Choose Life
A Guide To Living With A Chronic Illness
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The following article was published in the Irish Independent newspaper on April 29th. 2019. It was the lead item in the 'Life, Health and Wellbeing' magazine. It was also taken up by Parkinson's UK, a leading charity for People with Parkinson's, appearing in their on-line and paper magazine Summer 2019 editions.
(The Irish Independent is the largest selling daily 'quality' newspaper selling 100,000 plus copies daily.)
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Finding myself faced with a serious neurological chronic illness at the age of forty qualifies the event as being worthy of being labeled ‘life changing’. Life does not prepare you for illness. It happens and each one of us has to find their way through their personal yet everyday tragedy. There was nothing unique about it. Hospitals and clinics, Care homes and family homes are full of sick people and each one has to face up to their fragility that ill health has heaped on them. Chronic Illness is an everyday occurrence and I am one of the many millions who live with one. That is reality. It is not dissimilar to losing a loved one. No one can tell you how it feels, you can only know the pain of grief when you experience it yourself. And with a chronic illness there is loss, of a different kind, your loss of physical function, your lifestyle, your livelihood, your expectations of a future without health issues. The impact on your psychological well-being is enormous.
Twenty one years later, half my adult life I cast my gaze back and look upon a very different life living with Parkinson’s disease. I am a wonder of modern medicine. Fifty years ago there was no effective treatments to help control the ‘Shaking Palsy’. No Levodopa, no Apo-Go Morphine Infusion Pump and no Deep Brain Stimulation surgical procedure. Without these interventions I certainly would not have lived the life I have. Is medicine on its own enough to have enabled me to live so successfully a life that fulfils me? I think not. My own journey has shown me the strengths and the limitations of a strictly medical approach to living with Parkinson’s. Its strengths are its ability to give me effective control and management of the ever-increasing debilitating physical symptoms of the disease. Doctors focus on the visible, they make adjustments to the drug therapies and the more advanced therapies such as DBS, like technicians fine tuning an engine. Modern medicine has given me the platform from which I could build a life. It does not address your inner psychological state. This is its limitation.
During the first years of my illness, I hoped, rather naively that the drug therapy I was prescribed would restore my health and return me my life. I sat, strapped into the child’s seat in the back whilst the medics tried to get my engine running. It was not long before my engine started to stall again. I began to realise there was far more factors involved that influenced my functioning. I embarked on a radical re-think of my approach to my disease, conventional medicine and it’s role and my way of life. I asked myself what could I do? This simple question was to change my way of thinking. Up to this point, my illness had been defined for me by the medical model.
‘One of the greatest discoveries of my generation is that a human being can alter the course of their life by altering their attitude of mind.’
Henry James
I realised this simple but profound fact, how I saw myself deeply influenced my state of health. I never saw myself as ‘sick’, or ‘ill’. I saw myself as a healthy person despite the physical challenge Parkinson’s presented me. My personal strength grew enormously in response to the decision I made to take responsibility for my psychological well-being. This decision was the start of a process informed by the necessity of experience and a great deal of practical common sense.
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My response to Parkinson’s can be summed up very simply. I did not choose my illness, but I have chosen how I will live with it. This last statement is very important for two reasons. First, having an illness does not mean that you have to become passive or a victim to it, a role that stripped me of any personal power. Second, to choose is to act and that is always empowering.
Responsibility and Choice
Asking myself ‘what can I do?’ was my way of saying to myself and those involved in my health care, that I recognized my role in taking responsibility for myself and I would make my own choices and my own decisions, about my health, my condition and ultimately about my life and the way I would live it – with my Parkinson’s.
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Acceptance
The process of coming to terms with a chronic illness and that it will be your shadow and partner for the rest of your life is a tough cookie to face and It is different for everyone facing it. A person can invest and waste an enormous amount of energy in fighting or denying the reality of their problem. Or they can invest that energy more positively through accepting what is. This is a critical point I cannot emphasise enough. You have to recognise that it is within your capacity to choose how you want to live.
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Here in brief detail, I have identified the strategies and ways of thinking that have helped me in living with my Parkinson’s. Bare in mind that they are not discrete entities but rather a gestalt.
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Movement and Activity
Be it physical or mental, stay active. It takes discipline and motivation to do this regularly and make it a natural part of your daily routine. There is an important principle at work here. Being active is a strategy that will become second nature, you are engaging with life and that will give you energy and drive.
How You See Yourself and How Others See You
I make no attempt to disguise my Movement Disorder, why should I? We often let the words and reactions of others shape our self-image and our thinking. I know what my appearance looks like and I do not give weight to the opinions or thoughts of strangers. We can discern between positive influences and reject those that are demeaning and critical.
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Don’t Hide – Live Life
I did not go into hiding from life, in fact getting my diagnosis propelled me in the opposite direction. It freed me to say OK, this is my personal tragedy but look around and accept the facts, do what you can, do what you enjoy. We all have moments of feeling sorry for ourselves. That is natural. Recognise the difference between self-pity and self-sympathy. Poor-me steals your energy.
Mindfulness
Get to know your own body. Learn to listen to it through awareness. Mindfulness is a simple technique, you can still the mind through simply sitting, concentrate and focus on your breath to achieve awareness. I also find it helpful when I am having an ‘off’ phase and am ‘frozen’ or dealing with pain. With regular practice, you can use this technique in many beneficial ways.
Taking Control Of Your Day
With Parkinson’s there are many adaptations to your daily routines. The changes to how you manage your time and your energy being the most significant factors. These issues can be very frustrating for you and those you live with. It is a challenge that can be met with the skill using Problem Solving and Improvisation.
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Stress
The link between stress and psychological well-being is beyond dispute. Living with the demands of a chronic illness places an increased burden on the individual and their families. This is often accompanied by a change in role within relationships. These factors cannot be ignored and can impact significantly to the physical and psychological health of the person living with the disease. Communication is a vital tool in managing stress and where possible, reducing its harmful impact. Some of the factors you cannot change and some you will be able to modify, or even remove.
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Doctor-Patient Relations
The Doctor is your ally and the gatekeeper to access the medical services available to control the disease. For me, the ideal relationship is one of ‘partnership’. I take an ‘active’ role in engaging with the medial professionals.
Communication
This is vital to ensuring your voice is heard. Ask questions. I usually prepare and write these down in advance when I visit the clinic or hospital. I keep an accurate record of my medications taken, the times and the effects. I transfer this to a chart. This gives an immediate picture of how well or not the medication regime is working. I e-mail this any significant detail and questions to the Neurology department a week in advance of my appointment. Hospital doctors are working under many constraints and pressures, especially time.
Passions And Challenges
Indulge your passions, they are a source of joy and they energize you. They remind you that life is worth living. They are the sunshine that pierces through the clouds of daily struggles that can limit your vision. Seek the positives!
Challenges come in all shapes and sizes, some are welcome and some are not. Finding my way through a difficult day or period of ill health whilst not letting myself get depressed is a challenge and one I take more pride in than when I am well and out hill walking. Challenges have given me the opportunity to try something new, or to extend a boundary. I draw strength from the sense of having achieved a goal.
Self Love and Self-Care
My illness was the start of a very personal relationship that I have with my self, a relationship that has evolved and grown through living with Parkinson’s, and the responsibility of taking care of myself and managing my condition. I have gained an emotional maturity. This is most evident when I go through the very difficult periods that come with Parkinson’s, the times when I have been confronted with my infirmity, my fragility, my vulnerability. My Parkinson’s is a part of me. I talk about my relationship to it but essentially it is my relationship with me. Through this act of relationship I have come to accept and nurture this part of me. I don’t want to embody something that is a source of anger, bitterness or hatred within me. My love for my self has transformed my way of thinking about illness.
‘It is a tender night the night when you love
What love cannot save.’
Hilde Domin
The medical profession has begun to recognise and acknowledge the psychological aspects of the patient as not just a passive receptor of treatment. The emergence of the concept of the expert patient as
‘…..a person who has been empowered with the skills, confidence and knowledge needed to play an active role in making informed decisions about their own health care and management of their chronic condition.’
British Medical Journal
‘The quality of life as a therapeutic goal is becoming increasingly important. A study of lifestyle habits and coping strategies has shown that those who manage to look beyond their own situation and who are aware of their human freedom of choice despite illness can live better with the disease and shape their everyday lives.’
Dr. Kathrin Brockman
Head of Parkinson’s Outpatient, Tuebingen
I chose life and life has rewarded me with so much in return.