Thursday, 7 February 2013

Parkinson's is as much a mental challenge as a physical one

It is my experience of Parkinson's that the biggest challenge isn't the motor symptoms or depression, it is finding a way to live with the impact of the motor symptoms and depression. There is a difference between a list of symptoms and the experience of having to live with them. On a good day my symptoms are less of a problem because they don't impinge on what I want to do. On a bad day my symptoms are a problem only because they limit what I can do; not because they happen to be there. The crucial thing that needs to be tackled and addressed in advice is the impact the symptoms have on daily life; saying you have rigidity, tremor, slow movement and depression isn't enough.

For example, I was never told that living with Parkinson's is a complex balancing act between being active and taking rests to preserve energy, that it involved knowing when to push boundaries and when to consolidate. No strategies were offered to help me balance my new life or to deal with the mourning process after diagnosis. I had to grope in the dark by trail and error to cobble together a strategy myself. Indeed, I learnt the need to balance my new life because I pushed myself too far and passed out from exhaustion. I understand it is impossible to offer advice on the particulars of every case but there is an issue of making advice so general that it applies to no one.  Of course listing symptoms is important but the practicalities of the impact these symptoms have on daily life should then be addressed. Sufferers should be asked what they found useful and advice should be partly based on that as well as medical opinion. We are a largely untapped resource!

Living with the symptoms (and not necessarily the fact of the symptoms) is the major challenge of having a chronic disease.

No comments:

Post a Comment