A profound feeling of loss and sadness. In many respects, Parkinson’s disease is a progression of losses: physical, emotional, and lifestyle losses for the person with Parkinson’s as well for care-givers, family members, and other loved ones. It is natural to mourn these losses, to wish that they had not happened or were not happening, and to feel frustration and anger about them. For many people with Parkinson’s and those who are close to them, it often seems that no sooner do they adapt to one set of challenging circumstances than another arises to take its place. The ups and downs of the disease’s course and symptoms make it difficult to adjust and sometimes to know how to feel. Unlike in other situations of loss, such as the death of a loved one, the losses of Parkinson’s seem to cascade endlessly.
Although Parkinson’s disease is itself seldom fatal, it changes forever the lives of those who have it as well as the lives of loved ones. It is important to acknowledge grief and to accept that it is valid and appropriate to feel sadness and loss with Parkinson’s disease. In doing so, it becomes possible to begin shifting focus from loss to appreciating and enjoying the present, and even, as difficult as it is, looking forward to the future. There is life beyond Parkinson’s, even though it often seems that all of life revolves around the disease and its demands and uncertainties. Sharing feelings with others, such as through support groups, helps to put fears and worries in context. For many people, part of the loss they are grieving is the communication, partnership, and intimacy they had before Parkinson’s. Finding other people to talk to does not compensate for this loss, of course, and does not make the grief end, but it can make dealing with it easier.