I'm OK, thanks.

14 Feb 2012 by Laura Lewis

Receiving a diagnosis of a long-term illness such as Parkinson's disease (PD) can be dramatic, but telling people may be just as hard. I was reminded of this dilemma by a recently diagnosed friend who was worrying about whom to tell or whether to keep it entirely to himself. Until this recent conversation I had forgotten the trauma of both giving and receiving such news.

After my diagnosis, I had to decide who I should tell and how to tell them. That afternoon, my husband got the full prognosis, my children a very optimistic one with a business-as-usual emphasis and my mother had a diluted version in small sips a few months later. Outside my immediate family, I preferred telling people in writing because it allowed them to absorb the idea and respond when and how they felt like it. Phone calls were difficult because facial and vocal responses were missing and telling people face-to-face was nerve racking for me when there was so much emotion involved. There really wasn't an ideal place or time; it was an uncomfortable duty.

But this was not simply a one-way process. The recipient had to think on their feet as to how they might respond positively to avoid demoralising me further. But the reality was that few had any idea of the implications of getting PD when relatively young. A very common response from them was to reassure me with the latest bit of research they had read about, usually involving stem cells. In other words, they tried to soften the blow and to boost my morale at the same time. But there were some demoralising comments as well such as: "That's what my grandmother died of" or worse still: "I've been watching you; you've got Parkinson's". That left me speechless.

Those early days of giving bad news were hard because I was so uncertain myself as to the outcome and how I would be in the future. As time went on I gradually acquired more and more knowledge about PD and confidence because despite it I managed to work for six years and have gained a great deal of satisfaction out of my retirement. Had I known this in those early days I could have been much more positive on delivering my bad news.

If I analyse why I have needed to tell people about my condition, the reasons have changed over time. Initially, it was to seek sympathy and support. I also felt I needed to remove all suspicion that my tremor was a result of neurosis or heavy drinking. In those early days it was a form of apology as to why I was not performing as well as I should. But my attitude has changed and I find myself telling people what I have achieved despite having Parkinson's. In other words, PD is not a life-sentence and with careful management it can be well-controlled.

I have diverted my attention away from PD during the last few years through creative activities such as writing and photography. These have absorbed my interest and provided much satisfaction and ironically PD has allowed me the time to develop these hobbies through early retirement. For some years I was immersed in self-pity and had grave doubts about the future, but I am now much more optimistic and have regained my old identity and with that, enthusiasm for life.

It has now become a long established fact that I have Parkinson's and it is accepted by my family and friends as a way of life; a permanent back-drop to all my activities which no longer requires comment. When my medication is working well, I too can put PD to the back of my mind and become myself again instead of that person with Parkinson's.

In fact, when meeting friends who enquire how I am, my answer is always "I'm OK thanks, and how are you?" There is little point in complaining about symptoms – bradykinesia, cog-wheeling and dystonia, because they need explanation and all they wanted to know is that I am OK. Besides, nowadays, I find many of my contemporaries have their own health problems some of which are much more serious than mine.