Parkinson’s symptoms place a burden on your ability to carry
out every day tasks most people take for granted (e.g. getting dressed in the
morning). This increased demand on your ability to look after yourself causes a
reduction in your capacity to do other things. A way to manage this reduced
capacity and get the most out of it is to prioritise. It’s like having £100 and working out how much to
spend on the essentials (e.g. maintaining a level of care for yourself),
regular items (e.g. seeing family and friends) and what are now expensive
luxuries (e.g. travelling, being in a relationship or looking after children).
This involves determining what is important and how much it costs so you can
apportion your reduced capacity in the best way possible.
Related to this is finding the best way to use the limited
treatment options available in the face of a progressively debilitating
disease. The root cause of Parkinson’s (loss of nerve cells) is not currently
treated. The treatment that is available becomes less effective the more nerve
cells are lost. What are the priorities in treatment? I have early-onset
Parkinson’s so I have potentially another 50 years to live with my disease.
Should I be aggressively treated now to improve my quality of life but use up
my options in the short term or save most of my options to improve my life when
my disability becomes significant in the future? It is a choice between
short-term gain and then a sudden decline or a steadier disability. That is the
dilemma offered by Parkinson’s.
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