The article appeared in the German Journal of Counselling for Couples and Adolescence, DAJEB, Number 230,  in February, 2015.This is the original version, composed and written in English. It was professionally translated into the German language for publication.

 

Am I ill? I don’t think so. I live a good life. I am a fit and active fifty seven. I have two energetic Dobermans which need an hours walk each and every day and I have an exercise routine which I do most days that comprises yoga stretches and light weights for strength. I have a very healthy lifestyle and diet. I take care of the home whilst my wife works full time. I write everyday and also do photography. I took up mountain walking in 2008 and last year climbed my 150th. mountain. Last summer I climbed solo in the Swiss Alps. I hiked up to the Dom hut, a very demanding hike and climb of 2000 meters elevation with the final 800 meters scaling sheer rock face. This year I married and relocated from the west coast of Ireland to south-west Germany. I also have a full-time 365 day and night job. I take care of myself. I have Parkinson’s disease.

 

To the ‘man in the street’ these statements seem very much at odds. It is not the picture we have in mind of a person with Parkinson’s. Even the experts have blind spots. The pharmaceutical company who produce the medicines that have enabled me to have such good health, thought my climb to the Dom hut would not be possible or probable. I do not fit the stereotypical image of a man who has lived with Parkinson’s disease for seventeen years.

 

If someone had sketched this path out for me seventeen years ago, I would have had great difficulty believing it possible too. My journey with Parkinson’s began around February, 1998. That was when the first symptoms began to manifest. I gradually grew more ill with the untreated symptoms of this yet to be diagnosed monster that was devouring my health and vitality. This was a tough period for me. No diagnosis and no treatment and plenty of fear of not knowing and feeling helpless. I don’t have the hallmark tremor that has come to define Parkinson’s disease and that made diagnosis difficult especially given my age at the time, forty three. (30% of People with Parkinson’s do not display this symptom). I had lost the use of my right and hand for twelve months preceding diagnosis, my mobility had become increasingly restricted and I needed a walking stick I was so unbalanced. This was the first of three very serious episodes of ill-health I was to go through.

 

I started the new Millennium with a visit to a Consultant Neurologist. My problem gained legitimacy, a name, Early-Onset Parkinson’s disease, and a plan of treatment. With diagnosis came prognosis and three words I did not want to hear, Parkinson’s is progressive, degenerative and incurable.

 

This was my mid-life crisis. I was a forty something, developing a very satisfying career in my chosen profession of Social Work. I was a middle ranking manager in the voluntary sector responsible for four drug and alcohol residential projects. I had a very active social life. I was happy and fulfilled, I enjoyed the present and looked happily towards my future. With illness, everything changed. I had hoped my mid-life crisis would see me in an open top sports car with a glamorous girlfriend half my age! So much for fantasy.

 

My treatment proved effective and I returned to work. I had a life to live and a job to do, or so I thought but I was heading up the wrong road. I began to lose more and more control of my body’s movement as the stress of the work took its toll on my depleted Neurology. I was struggling. Around this time I had a sense that I was not going to make it. I had a very strong image of myself in a swimming pool. I was in the middle, treading water and could not reach the safety of the sides. My head was going more and more under the water and I was gasping for air. I was drowning.  The night I had this vision was a turning point in my life. I faced up to a stark reality. I did not know how to live with my illness. The person I was then was doomed, to struggle and drown. I liked who I was and it was very hard to let go but let go I did. I now had to dig deep and discover the Robin who could succeed in living with Parkinson’s. I ‘surrendered’ what I had for what I could become. I had to change. I had to let go of the person I was to become the person I am now.

 

It was a journey to freedom. I did not choose to have Parkinson’s, but I could choose how I would live with it. Up to this point, my illness had been defined for me by the all-powerful medical profession. This was too narrow a path. It cast me as the patient, in the role of a victim. It stripped me of my personal power, my own healing. I have always believed that the seeds of our own healing lie within us. Illness is a signpost to go searching for those seeds. Those seeds came in a bag called ‘Whatever it takes!’ I was prepared to forego all I knew and start afresh, with new ways of thinking, new ways of problem solving, new ways of being. I would define my condition for myself. Too often we let the words and reactions of others shape our self-image and our thinking, Having a movement disorder like Parkinson’s draws attention to you when you’re out in public places. Strangers have made unsolicited remarks on seeing me when symptomatic believing me to be drunk or assuming I have learning difficulties. This is a fact of life. I know what my appearance looks like and I do not share their opinions or thoughts. We can discern between positive influences and reject those that are demeaning and critical.

 

I realised for myself this simple fact, how I saw myself deeply influenced my state of health. I do not see myself as a sick person. I see myself as a healthy person with a difficult physical condition that I have to manage. This was not airy fairy Creative Visualisation or Fantasy Thinking. This was hard-nosed reality. My personal strength grew enormously in response to the decision I had made to take responsibility for how I was going to find a way of living as best I could with Parkinson’s.

 

One of the of the greatest barriers to self-actualisation are the limitations we impose on ourselves. This is of great significance in concepts of health and illness. How you see yourself when you are ill can greatly influence how you respond to the challenge of that illness or condition.

 

We all have a mental satchel full of stereotypes that we carry around. Many of these stereotypes are handed to us through the media and maybe sometimes from our own experience, encounters and projections. We internalise these generalisations in our busy minds and there these pale reflections and images remain on file and with time gain status and credibility.

 

I want to introduce a concept I call Inner Well Being. [This will be familiar territory to all therapists and counsellors]. I define it as the totality of our emotional intelligence and state, our mental and thought processes and our spiritual or deeper sense of who we are. I have come to see this as vital to my living successfully with Parkinson’s, as much as my drug therapy, physicality and lifestyle are. I have an on-going conversation with myself and listen to the messages my body sends me. This led me to develop a dialogue between me and my Parkinson’s. What was it telling me, what did I need to hear. What deep and primal intelligence was communicating itself through the manifestation of my movement disorder and most importantly, what was the response it sought to regain balance?

 

Balance is vital to understanding and maintaining inner well being. When I feel troubled by an issue, this can absorb an enormous amount of emotional and mental energy. Troubles and disturbances have created stress and for me, stress is the thing that most aggravates my symptoms. It would be pithy to say eliminate stress. One can certainly work towards reducing it. Personally, when I find myself facing personal stress, my body responds with an increase in my Parkinson’s symptoms. My body very forcibly announces its need for me to sort out my problems.

.

We are made up of a number of intelligences. Here I refer to four, physical, emotional, intellectual and spiritual. Our physical bodies are intelligent and will orient themselves towards healing. The mind can greatly influence this movement, if it is also attuned to healing. Where the two work in tandem, self-healing or physical self-actualisation is promoted. When a person perceives themselves as ill, both physically and in thought, the healing process or degree of coping with a permanent condition is reduced. I am a ‘well person’ who has a physical illness, a chronic condition. My inner self can cope with this.

 

Doctors never asked me questions about this inner psychic health. They dealt with the physical symptoms only and took no account of what I have come to call my inner well-being. I came to see the role of conventional medicine in a different light. It had very practical value in helping me to manage my physical symptoms but it could go no further. The Doctor-patient relationship is traditionally one of power and authority, and this definition does not allow a working partnership between the two. I take responsibility for managing my inner well being. This was to define my relationship with conventional medicine. I had to live with my Parkinson’s. It was up to me to shape how I felt and related to myself and the disease. It was I who defined it for myself, not others. I would find Doctors who were sympathetic to my approach to my health. I will not work with any professional who attempts to impose their ‘position of power’.

 

I had to retire from work in June, 2002 at the age of forty five. I abandoned the script I had created for myself. I started a new and different life with my Parkinson’s. I began a journey of discovery, of myself and of the world. I had only one dictum now, live as well as I could with my Parkinson’s.  My journey with Parkinson’s has seen me return to good health. It has been a great teacher and I have grown as a person through the challenges it has and continues to set me.

 

What have I learnt? What advice would I offer to someone with a chronic disease?

Our bodies are intelligent. Listen to it. Develop the best relationship you can with your body and your self.  Fall in love with your body, its where you live, it’s your home.

 

Do not retreat from life, or your self just go out and find a path that nurtures you and do things you can enjoy. You always have choices, use them wisely.

Look for the positives and re-frame negative thinking and language.

I have Parkinson’s, who says it has to be all doom and gloom and suffering?

Not me.