Emotional Responses to Parkinson's Disease

When you or a family member is first diagnosed with PD you will most likely go through a host of emotions. For most people, a diagnosis can feel devastating. The first concern is whether PD will interfere with the life they currently lead or plans for the future. They may imagine the future and think about whether they will be able to walk, talk, eat or take care of themselves, let alone take care of or provide for their families.  It is important to remember that everything you are feeling is normal. In fact, there are stages of adjustment to PD. Each individual may experience any or all of these typical phases and may not progress through them in any particular time or order. The stages are as follows:

Denial

  • This response may be prolonged if symptoms are mild or the correct diagnosis is not made early in the course of the disease.
  • Ironically, denial can be a useful coping mechanism if it allows one to largely ignore symptoms and go on with life as usual. 
  • However, if a person refuses to take medication, or goes to extremes seeking second opinions, it may indicate denial as an unhealthy response.

Discouragement

  • In this phase, people look for some direct cause for the health problems they are experiencing.
  • They become preoccupied with the why me question, while searching for something or somebody to blame for the unwanted circumstances occurring in their lives.

Role Conflict

  • This happens when patients and care partners become confused and frustrated with the daily fluctuations in symptoms, and when the need arises to reevaluate who is responsible for what tasks in the family.
  • Changing abilities and assuming new roles within the family can cause emotional upheaval. 
  • A family coping with these issues often benefits from meeting with a counselor and dealing openly with these conflicts.

Identity Change

  • In this stage, people realize that life has changed and become willing to seek out others with the same condition for education and encouragement and to take on the work of achieving their optimal level of independence.

Adaptation

  • In this stage, patients exert a degree of control over their illness by assuming an active role in their health care; for example, working with their doctor to choose what medications to take and in what doses.

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Medical content reviewed by: Nina Browner, MD—Medical Director of the NPF Center of Excellence at the University of North Carolina at Chapel Hill in North Carolina and by Fernando Pagan, MD—Medical Director of the NPF Center of Excellence at Georgetown University Hospital in Washington, D.C.

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