How can I explain to those who do not suffer from Parkinson’s about the increased difficulties at simply getting together for a social visit. As the disease progresses, making any social engagement is far from easy, never knowing how I’m going to be on the day. This literally throws one’s social life out the window. Experiencing “off” times where essentially the Parkinson’s medications cease to work for a period, renders one unable to function, which disrupts life to an unimaginable extent.
It takes mammoth proportions of effort, both physically and mentally to accomplish anything whilst in an “off” state, and therefore important to listen to one’s body and rest when these times occur. It’s not a case of being a defeatist and giving up, for trying to fight through, no matter how determined, is counter-productive and if anything exacerbates the situation. It’s no good convincingly saying “I’ll take it easy tomorrow and make up for not resting today” as unlike a re-chargeable battery, any lost energy can never be re-gained or topped up. It’s as if you are irreversibly depleting internal energy levels.
The frustration experienced from “off” periods is off the scale and the lack of understanding from those around, can be soul destroying.