Monday, 8 April 2013

What are the priorities within Parkinson’s?

The chronic, progressive and incurable nature of Parkinson’s raises a number of issues. I think the most prominent being how best to cope and live a good life within the confines of the disease.

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.

No comments:

Post a Comment