[Originally posted this in comments]
This is my own Journey as it must be with this condition as no two people are ever the same. However we can learn from each other as we tread this path less travelled, and it makes us think differently about this scary but fascinating un-invited partner…
Disease self management has become a patient reality,’The patient is the key to the cause and the path to the cure’.[Graham Dunn]
The enculturisation of illness is an interesting concept .I am writing as a person with Parkinson’s Disease my interpretation of the process.
‘The day we receive a diagnosis of illness,the degenerative kind,we instantly become a patient for the rest of our days looked after by prescribed services and looked at differently by loved ones who become carers by default.
Devastation aside the whole process is a negative one,turmoil ensues and vulnerability because of illness takes over in the fast lane.Doctors prescribe medicines,Partners become carers,researchers look for cause and cure.
The person you are, you were yesterday, but knowing changes us for ever. Who I was and am is a constant, but fear from within myself and changed perceptions all around me and we become to frequently lost in pre shaped Life Outcomes,instantly catapulting us toward the inevitability of disability.This is the proscribed life outcome needed by some but damaging to others.Medicines,percieved support prescribed as care and expected decline The person a patient a voice,no one noticing or looking and listening, ‘ youve become an illness.’
As an illness life takes on a new sense of urgency . Typically attempting to understand the rate of degeneration with questions such as, “What will I be like in five, ten and fiifteen years from now?” .So were do we go from here,do you wait at the bus stop or drive the bus..you can travel one stop or to the end of the route,and get on or off whenever,you wish or need to.The choice is an individual one,and the illness is individual to you.Medication will help our symptoms,we can help one another more by sharing listening and learning,every day an opportunity,
Ive had PD for nine years,I take a wack of meds but manage my prescribed drugs to suit my needs with confidence and my neuros approval.I use every other sense and stimuli in my body to manage deficits of movement ,I wish I didnt have PD but l love the challenge of it.The experiment of life and living,never say die and theres always a way,if you just do the simple thing and look for it.Its not thinking outside the box for me its imagination endevour and the will to do.
I dont despair at the fact that a cure is not forseable,I prefer the reality of the present time and hope for the future.Living well with illness is living in the reality of now.