Being a Self-managed Patient with Parkinson’s

What is Self-management?

Self-management refers to the tasks that an individual must undertake to live well with one or more chronic health conditions. These tasks include gaining confidence to deal with medical management, role management, and emotional management (Adams, Greiner & Corrigan, 2004). Watch this 3 minute video to recap this information: https://youtu.be/uRQ853sRt0o

Participants in self-management programs learn how to:

• Get started with healthy eating and exercise
• Work with a healthcare team
• Manage fear, anger and frustration
• Make daily tasks easier
• Manage their symptoms
• Problem solve
• Take action and get more out of life

Why Self-management is Important

There are many reasons why self-management has become increasingly important in the lives of those with chronic health conditions, like Parkinson’s:

• Chronic disease is the leading cause of death and disability in Canada.
• In Canada, 1 of 2 people has at least one chronic health condition, representing 17 million Canadians. Twenty-five percent of all Canadians have two or more chronic conditions.
• Nationally, chronic disease accounts for 42% of the $200 billion spent on health care each year in Canada.
• Over 100,000 Canadians have been diagnosed with Parkinson’s disease, the second most common neurodegenerative disorder after Alzheimer’s. The medical costs for treating Parkinson’s are at least $112 million per year (BC Ministry of Health, 2012/2013 statistics).
• Helping people with chronic diseases like Parkinson’s learn to better manage their condition will help reduce the personal and societal burden of chronic diseases in Canada.

Self-management Tasks

Many of you are already engaging in self-management tasks. While you may not have “classified” them like researchers do, you are most likely doing some of the following:

Gaining Confidence

Part of feeling self-managed is gaining your confidence back. After a diagnosis, your world can feel like it has flipped 180 degrees. Focusing on your illness needs is one way of gaining your confidence back. Learn about Parkinson’s (join the Society, read literature, register for workshops, take ownership of your health needs [taking medications and attending medical appointments], and perform health promotion activities [exercising, joining support groups]). You might also consider getting support from a professional counsellor. Parkinson Society British Columbia's counselling program is a great way to clear your mind from your worries and focus on your strengths. Don’t forget, gaining confidence is for the whole family, so get your partner, child(ren), and relatives involved. Learn more at http://www.parkinson.bc.ca/counselling.

Emotional Management

To improve your mood (and gain your confidence back), addressing emotions is an important aspect of self-management. Emotional management includes exploring and expressing various emotions, as well as grieving in response to a loss of health or functioning. While it often takes time to adjust to a diagnosis, most people with Parkinson’s and their carepartner face ongoing emotional changes as the disease changes. Meaning-making can help individuals to determine the meaning of the illness in one’s life and shift out of hopelessness. Emotional management is often accomplished with resources, such as counselling and support group work.

Role Management

As time goes by and the journey of Parkinson’s continues, you may find yourself, or your carepartner, taking on new roles. For instance, you may resort to sorting the recyclables indoors, while your partner brings them out to the curb, or, as a carepartner, you find yourself now managing the household finances. With each role comes a need to activate different resources, such as other family members, friends, transportation services and spiritual resources. Role management is about identifying what needs you currently have and the people or services that can help you attend to these needs.

Sources

Adams, K., Greiner, A.C. & Corrigan, J.M. (eds). (2004). Report of a summit. The 1st annual crossing the quality chasm summit: A focus on Communities. Washington, DC: National Academies Press.

Schulman-Green, D., Jaser, S., Martin, F., Alonzo., Grey, M., McCorkle, R., Whittemore, R. (2012). Processes of Self-Management in Chronic Illness. Journal of Nursing Scholarship. Sigma Theta Tau, 44(2), 136-144. http://doi.org/10.1111/j.1547-5069.2012.01444.x 

Self-Management BC. (2018). What is Self-Management? Retrieved from http://www.selfmanagementbc.ca/SelfManagement

This content was published in the October 2018 edition of our monthly support group newsletter, GroupLink. The content was accurate as of this publication date.