Living with Parkinsons disease - a childs perspective

I was 10 years old when my mother came back from a large London teaching hospital, having been given the diagnosis of young onset Parkinsons disease. She was 46 years of age. She had made the diagnosis herself before this appointment. She was first told it by medical students when, during a consultant-led teaching session, she had been asked to walk across the front of a lecture theatre to show the characteristic gait. She was humiliated, and I was angry. That was when I decided to become a doctor myself.

Fortunately, young onset Parkinsons disease is not common. Most people are aware of the devastating symptoms—the tremor, the poverty of movement, the falls, and the terrible side effects of the drugs—but a child sees not only the slow, relentless progression of symptoms but also the loss of the mother that he or she knows.

The effects of this on a child are both practical and emotional. Many patients with Parkinsons disease prefer to withdraw from society. For me, it was the end of family activities: we no longer undertook our regular Sunday bicycle rides, meals out became an impossibility because of the practical difficulties of eating, and family holidays ended. Our family photograph album, which had been religiously updated and annotated, stopped abruptly. My attempts to learn how to sew and knit had to continue without help. Home visits by friends became difficult and strained. Physical gestures and, in particular, cuddles ceased

Worst of all, however, were the emotional effects of this terrible illness. The frequent falls and difficulty getting up meant that I would often return from school to find my mother on the floor, where she may have been for some hours. She would never complain about her condition, and somehow that made me feel worse. How can an adolescent who is trying to break away from her parents do so with a mother who is physically deteriorating? Would teenage rebellion make her worse? Certainly, argument would increase the tremor. My achievements would be one of the few things that would continue to give her pleasure in life. However, she was undemanding of me, and again somehow that made it worse. How could I talk about my own problems and difficulties? I was concerned about the effect on my father, a sociable man whose life had also been changed by this cruel illness.

I was an only child, and that must have increased my sense of responsibility. It certainly increased my sense of isolation. I fulfilled my intention to become a doctor, driven by my family circumstances. That drive seems to continue after family members are long since dead.

All this happened to me some time ago, and I would hope that now medical teams have a better understanding of the difficulties encountered by patients with Parkinsons disease and their families, but I wonder.