Start. It’s perhaps stating the bleedin’ obvious, but upon receipt of diagnosis everything pretty much changes. The wheel, as they say, takes a fresh spin, but also tilts on its axis just a little … or a lot, depending on what it means to you personally. What is certain is that in certain, and quite important, circumstances, you are no longer a person but a patient. You are your condition. This can be problematic, in a number of ways, not least for you (that’s the patient, btw). In terms of the system you are now a set of symptoms, a set of boxes to tick (and, mark you, a pricey set of boxes). This much is reasonably obvious. You may not expect it, but you realise pretty quickly that most of the time professionals address the symptoms not the person – that is left up to support groups and so on. Unfortunately, this disjunct can lead to a lack of meaningful communication between system and patient … and it’s even happening here. In attempting to deal in the abstract, I am repeating the same error.
It’s tough. It’s tough for professionals not to treat you as if you merely your condition. It’s tough for you to think of yourself outside of your condition. People you meet who you tell of your particular issue often seem to find it hard not to label you PD – after all, why not? It’s a convenient and useful sticker. Personally, I tell people as and when it becomes relevant – when I fall asleep while talking to them, for example! Naturally, in the early days of discovery and accommodation, PD does take you over just a little. You can come across as overly focused on the condition (hardly bleedin surprising, I mean …), and people you meet naturally remember this part of you, as it’s both the most memorable and the most convenient descriptor. You become your disease.
Now, we all deal with things differently, and this post by Tom Isaacs is a case in point. It describes very neatly how he sees his journey with PD, and has a lot going for it. But it’s just his journey. This is how he sees things. The comments are instructive, I think … they demonstrate how people can fixate on certain aspects of the disease, psychologically speaking, and thus see that as ‘the cure’. To me, it can dip into the realms of self-help, which is anathema.
The point is that there is no one size fits all with PD. The disease itself is remarkably personal – it manifests in each person differently and stubbornly refuses to follow set patterns, predictable developments. It’s largely a clinical diagnosis, inasmuch as only the effects, not the cause, is available for observation – we don’t make enough dopamine because these cells snuff it, but we don’t know why. There is no PD pathogen.
This means, I think, that how the patient (sorry, pretty much had to use that word) perceives their progression is of vital importance. PD won’t fit into a box, because it doesn’t work like that. What works for Tom may not work for me.
PD becomes part of our identity, but PD doesn’t define you. You define it.