Parkinson’s has pushed me into the precarious position of constantly functioning on the edge of exhaustion. Prior to the emergence of my symptoms I used to lower my cup into the well and fill it right to the brim with cool, refreshing energy. Now the cup emerges from the well with barely a drop of energy in it. The reliance I once had that my energy reserves matched the activity I wanted to do is no longer there. It’s as if I’ve suffered a power cut and the only way I can see is using a dim torch.
A lack of energy undermines everything, including my movement. It renders my effort into either short bursts or dragging myself along the floor. Exhaustion also has a psychological impact; it removes the confidence I had that if I start something I will finish it. It makes me strictly ration whatever energy I have, thus causing a narrowing of my life.
While most 34 year olds are building relationships and marriages, having and looking after children and forging careers I’m left wondering whether I have the energy to get showered and dressed on a morning. It feels like I have the energy of a 70 year old without the fruits of 70 years of effort or the knowledge of how to manage gradually diminishing energy.
Along with the difficulty of my movement, Parkinson tiredness (which is closely linked to initiating and completing movement anyway) has become a major challenge.