by

Reverend Marcia Howland

Enduring Parkinson’s is like watching an old coal-burning train. Once stoked, the engineer throttled for a gradual start. By the time the train roared to the crossing at my grandfather’s Kansas dairy its piercing whistle and black smoke signaled that it was up to full steam. Nearing its destination down the track the engineer throttled down and the metal wheels ground to a stop.

            Parkinson’s Law means that work expands to fill the time available for its completion. That describes the progression of Parkinson’s and other similar diseases. There are the slow starts, the gradual inability to go at full steam, and the final stop. It is defined as “a progressive disease of the nervous system with tremor, muscular rigidity, and emaciation” (Complete Wordfinder). It eventually fills all the time of the sufferer and carer until its completion.

            Long-term incremental losses of health exact intrinsic (internal) and extrinsic (external) psychological, social, physical and spiritual energy. Blanchard, et al in Lived Experiences of Adult Children Who Have a Parent Diagnosed with Parkinson’s Disease, identifies seven clusters of issues.

            The strengths of the family system are primary in dealing with this disease that doesn’t go away. Coming to terms with it at least agreeing to disagree alleviates family dissention and lowers stress. Positive influence is significant. Music, art, drama, nature, hobbies, employment, and maintenance of regular routine minimize angst.

            The provision of care is demanding in mid to later stages. Safety hazards can be minimized as well as making convenience-changes like color, accessibility, and furniture to provide a pleasing environment. Future-thinking anticipates what may be needed next and how it can be provided.

            As the disease progresses, resulting in a greater dependency, carers become tired, and need frequent breaks for renewal of emotional and spiritual energy. Coping methods vary with each individual. Some need people; others need quiet. Some need activity; others need rest.

            The contextual experience of living with a slow decline for a long period of time produces progressive losses. A combination of expressing the sadness of loss as well as appreciating each positive blessing helps to balance the scale.

            Progressive diseases influence the breadth and depth of relationships. It is healthy to discuss fears, hopelessness, powerlessness, anxiety, and depression. Providing a supportive relational and physical environment suggests calmness when there seems to be no control of the disease. As body functions decline spirituality becomes even more important to promote coping skills.

            Learn as much as possible about the disease process. Stimulate communication. Maintain as many social roles as possible to discourage isolation. Develop a transportation strategy.

            Promote healthy nutrition, exercise, and appropriate use of medication. Develop a medical care team who can answer questions, make projections for the future, and point to additional resources. Fill your soul with all the goodness and blessings you can absorb. A creative, sustaining, transcendent, infinite power does not leave his children orphans when they are dealing with a finite disease process.