Tuesday 20 August 2019

'I am a wonder of modern medicine' - Man living with Parkinson's disease

The key to managing the daily challenges of life with a debilitating illness is acceptance and self-love, writes Robin Simons

Robin Simons has adopted the concept of the 'expert patient' to play an active role in his own healthcare dealing with Parkinson's
Robin Simons has adopted the concept of the 'expert patient' to play an active role in his own healthcare dealing with Parkinson's

Life does not prepare you for illness. It happens, and each one of us has to find our own way through our personal tragedy. Being faced with a serious neurological chronic illness aged 40 qualifies as a 'life-changing' event.

There is nothing unique about it. Hospitals and clinics, care homes and family homes are all full of sick people, and each individual in every one of these places has to face up to the fragility that ill health has heaped upon them. I am one of the many millions of people who live with a chronic illness. The experience is not dissimilar to losing a loved one - no one can tell you how it feels, you can only know the pain of this particular grief when you experience it for yourself. With a chronic illness, there is loss - your loss of physical function, your lifestyle, your livelihood, and your expectations for the future. The impact on your psychological well-being is enormous.

Twenty-one years after my diagnosis, a time period that is now half of my adult life, I look back upon what could have been 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 (DBS) 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 a fulfilling life? I think not.

My own journey has shown me the strengths but also the limitations of taking 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, as if they are technicians fine-tuning an engine. Modern medicine has given me the platform from which I could build a life. But it does not address the 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 to my previous 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 were far more factors than just medicine that influenced my functioning.

I embarked on a radical re-think of my approach to my disease, conventional medicine and its 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 by the medical treatment on offer.

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 with which Parkinson's presented me. My strength grew enormously as I took responsibility for my psychological wellbeing.

Responsibility and choice

Asking myself, 'what can I do?' was my way of saying that I recognised my role in my own healthcare. I would make my own choices and decisions about my condition and, ultimately, about the way I would live life with my Parkinson's.

My response to Parkinson's can be summed up simply: I did not choose my illness, but I have chosen how I will live with it. This is very important for two reasons: First, you understand that having an illness does not mean you have to become passive or a victim to it, a feeling that strips us of our power. Second, to choose is to act, and that is empowering.

Acceptance

Coming to terms with a chronic illness and the fact that it will be your shadow and partner for the rest of your life is a tough cookie to digest, and each person deals with this knowledge differently. A person can 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 it is. This is a critical point: you have to recognise that you can choose how you want to live.

The strategies and ways of thinking that have helped me in living with my Parkinson's are as follows:

Movement and activity

Be it physical or mental, stay active. It takes discipline and motivation to exercise regularly so that it is a natural part of your daily routine. Being an active person will eventually 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 how I appear 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.

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 okay, 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 becoming more aware of it. 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 this 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 you need to make to your daily routines. The changes to how you manage your time and your energy are the most significant factors. These issues can be frustrating for you and those with whom you live. These challenges can be tackled through problem-solving and developing improvisation skills.

Stress

The link between stress and psychological wellbeing 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 on the physical and psychological health of the person living with the disease. Verbalising the issues 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.

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 medical professionals.

Communication

This is vital to ensuring your voice is heard. Ask questions. I write all my questions down in advance of clinic or hospital appointments. I keep an accurate record of my medications taken, the times and effects. I transfer this to a chart. This gives a picture of how well or not the medication regime is working. I email this, along with any significant details and questions, to the neurology department a week before my appointment.

Passions and challenges

Indulge your passions, they are a source of joy and they energise you. They are the sunshine that pierces through the clouds of daily struggles that can limit your vision. Some challenges 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 mastering 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 new relationship that I have with myself, 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 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 something that is part of 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 myself has transformed my way of thinking about illness.

The medical profession has begun to recognise and acknowledge these psychological aspects of wellbeing and their importance. Alongside this is the developing concept of the "expert patient". The British Medical Journal offers this definition: "… 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."

The patient is not just a passive receptor of treatment. I find these developments encouraging. I chose life and life has rewarded me with so much in return.

Find out more about Robin at robinsblogandbull.com.

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