April was Parkinson’s Awareness Month and around the nation dedicated advocacy groups intensified their efforts to raise public understanding about the effects of this disease. Now that the month has drawn to a close, we anticipate that this broadened awareness could lead to increased support for finding a cure. While awaiting that hopeful breakthrough, however, those affected by Parkinson’s continue to cope with a very different kind of awareness.
Merriam-Webster defines being aware as “knowing that something (such as a situation, condition, or problem) exists.” Campaigns to raise awareness are designed to motivate large groups of people to create political or social change. Awareness on a more intimate level relates to how a person perceives and responds to a certain condition or event. Although individuals with PD all share the same diagnosis, they may be in very different places with respect to their coping responses.
In her work as a psychiatrist, Dr. Elisabeth Kübler-Ross observed that people typically experience specific stages when confronting significant loss. She identified a progression through five stages of grief: denial, anger, bargaining, depression, and acceptance. Subsequent research indicates that these stages may not always occur in order and could be repeated. As many of you well know, achieving a state of acceptance with Parkinson’s can pose a monumental challenge, fraught with setbacks as the disease advances.
As a new month begins, it might be helpful to use this insight about the stages of grief to undertake your own private awareness campaign. Begin with a candid examination how you are currently dealing with Parkinson’s and its demands on you and your loved ones. For example, if you perceive that you are in a state of denial, it might be time to refer to some educational resources about Parkinson’s. Facing the disease in a proactive way helps many people to make plans for the future and ultimately feel more in control. Perhaps you find yourself stuck in the “anger stage” but are unsure of how to get past it. Talking to others who have walked down this same path may be particularly comforting and helpful. APDA Arizona has many support groups and you may consider joining one to gain some outside perspective.
There is still room to grow even after one has learned to accept life with Parkinson’s. Patient advocate Trisha Torrey suggests that there is a sixth stage of grief that she calls “proactive survivorship.” Torrey describes how proactive survivors are able to transform their own negative situations into something positive by doing good for others. History abounds with tales of people who have achieved resilience against adversity through positive actions. Some call it “turning lemons into lemonade,” but whatever the terminology, few would deny that mastering and embracing this sixth stage can be as empowering as it is positive.
So this month, as you strive to become more aware of the impact of Parkinson’s on your own life, I encourage you to identify at least one situation in which you could act as a proactive survivor would. Could you help someone with Parkinson’s who is struggling with an issue you have long since overcome? Might you volunteer to assist with a Parkinson’s event in your community? If you would like to share observations about how you (or others) have practiced proactive survivorship, please e-mail your stories and thoughts to me at firstname.lastname@example.org. I hope to hear from you.
Lynn Oelke, Ph.D. completed her graduate training in clinical psychology at the University of South Florida and earned her undergraduate degree in psychology from the University of Florida.
She attended the University of Arizona College of Medicine for her internship in clinical neuropsychology. Her research addresses the cognitive and mood aspects of Parkinson’s disease.
Dr. Oelke provides education, referrals, and support to people with Parkinson’s and their families throughout Southern Arizona.
Aware [Def. 1]. Merriam-Webster Online. In Merriam-Webster. Retrieved April 29, 2014, from http://www.merriam-webster.com.
Kubler-Ross, E. (1969). On death and dying. New York: Macmillan.
Torrey, T. (2013, February 10). Proactive survivorship – The sixth stage of grief, a catharsis for anger, Retrieved April 29, 2014 from