I was absolutely shocked when, at 39, I was diagnosed with Parkinson’s, even though this was three years after becoming aware of the first symptoms.
While I never doubted the diagnosis, I had a very hard time believing that it had really happened to me. My first step towards accepting Parkinson’s was this inner belief that I could manage it.
I have never thought of myself as being seriously ill, not even when I was feeling really bad just before undergoing Deep Brain Stimulation (DBS). Of course, I am perfectly aware that I have an incurable and serious condition, but at the same time I am deeply determined to ignore it and to use all my energy to live as if I were healthy. It is a kind of psychological trick but it works; this is the only way I have been able to manage and not feel robbed of my life.
In the early years with Parkinson’s, I did lots of things. As soon as my son went to kindergarten, I went back to university and graduated in philosophy. I debated my thesis under the effect of Madopar (I was still in the ‘honeymoon’ period of the condition) and not even the dyskinesia that had begun to appear stopped me.
I used to be a professional dancer when I was younger, resulting in strong legs that have served me well for a long time.
I traveled extensively. I visited India several times on my own with my medication in my pocket and off I went – as free as the wind! I also traveled to the USA with a deeply loved boyfriend who left me as soon as the first dyskinesia showed itself. A great shock - even though it was exactly what my husband had done when I was first diagnosed with Parkinson’s.
I fell in love again, but this time with a guy who had the same illness as me, Parkinson’s. Together we spent some unforgettable moments, but, my goodness, how hard it was to cope with!
I must admit that I exceeded the amount of levodopa I was allowed to use, but felt relieved when reading in Michael J Fox’s book that he too used to have bits of pills scattered in his pockets. But I won’t hear of compulsive behavior, unless you think that love for life and the necessity of bringing up a child are pathological.
I’m also aware that I have not been a ‘model’ patient. Being careful at medication time, exercising twice a week, watching what I eat and visiting the neurologist regularly, I have to say, has not been for me! But in one way or another, I have managed to get away with it. Nowadays when I look back, I have no regrets; I was just expressing my vitality for life!
The DBS ten years ago marked the beginning of a new era for me. In my life now there aren’t any boyfriends. Instead I have found me; a strong woman, happy with herself and capable of helping others. I feel an inner contentment and peacefulness; and if I look back at my life, I can honestly say that my wish to keep on living life to the fullest has come true.
