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.