I met with someone recently who I know and who I was unaware has also recently been diagnosed with Parkies. They are in the early stages – just six weeks ago – and very much going through the ‘Grief and Shock’ stage. Their story struck a chord for me for many reasons. I remember the feeling of helplessness, of disbelief and of wondering how on earth I was going to cope with this thing.
Now six months in I feel that Parkies is not so much in the driving seat as they are a back seat driver that I didn’t invite along for the ride!
During our conversation my friend described to me their journey to diagnosis. They talked about how for probably three years they had noticed symptoms – including tremors – and asked to be referred for tests. Their Doctor seems to have made their own mind up and appears to have decided to put the symptoms down to stress and/or anxiety. For three years of repeated requests and expressing concern my friend went into battle with their GP. Then finally the GP gave in and referred to a Neurologist and a diagnosis was finally made.
My friend had always thought Parkinson’s was a possibility and – like my own experience – found no pleasure in being right!
So, why is it then that GP’s – some, perhaps not all – don’t necessarily listen and acknowledge that we are the experts when it comes to our own bodies and know when things are not quite right? I have sometimes wondered aloud to my husband whether perhaps my GP thinks I am a bit of a hypochondriac? Parkies is not my only health issue. I have arthritis, dysphagia (a swallowing issue), a hiatus hernia and now Parkies. Perhaps my GP thought ‘here’s another thing she’s hyped up about’ and this is behind the somewhat dismissive attitude? My friend also has a number of health issues and maybe their GP is suffering from some kind of ‘compassion fatigue’ when it comes to us ‘frequent flyers’ with our many and varied maladies?
But whether we have one diagnosis or a collection of medical matters we are dealing with, it seems that GP’s can sometimes take the role of ‘expert’ too much. In doing so, the end result can be a delay in diagnosis and treatment that can have a negative outcome for their patient.
It shouldn’t be that we have to feel we need to repeatedly badger our GP’s to refer. It should be that we are respected for our concerns and acknowledged that – rather than the GP – we are the ‘experts’ in relation to our own bodies. We know when something is not right and we should be trusted in that knowledge by our GP seeking the answers that we need.
Early diagnosis and support is our best weapon in the fight against the invader that is Parkies. Our GP’s should stand with us in identifying and fighting this, not be another battle we have to wage.