Considerations for Young-Onset Parkinson’s Disease
Parkinson’s disease (PD) is typically understood as a condition that affects seniors. Although this perception is generally accurate, it does not account for the 35% of cases that have been identified as Young Onset Parkinson’s disease (YOPD). YOPD is defined as a diagnosis of Parkinson’s disease between the ages of 21 and 40, although some studies include patients diagnosed up to the age of 50. Some research has suggested that a small percentage of individuals with YOPD may be genetically predisposed to developing the condition (Lister Hill National Center for Biomedical Communications, 2012).
Due to the age of the population living with YOPD, individuals with the condition face a different set of challenges than more mature populations. Individuals with YOPD are more likely to experience dyskinesia, due to the length of exposure to levodopa over time (Ahlskog, 2016). This is in addition to the challenge of maintaining career goals and family life with young children. It is important to understand that while the percentage of British Columbians living with YOPD is smaller than people living with PD, the experience can be drastically different, and resources and support systems need to be in place to help individuals with YOPD manage their specific set of conditions.
Stigma
In a recent American study that compared the experiences of people with YOPD and patients above the age of 50 diagnosed with PD, patients’ perceptions of disease severity were identical. However, the younger patients reported a higher rate of depression and indicated that they experienced a lower quality of life. It is suspected that these differences are, in part, due to social stigma around YOPD, strain on marital relationships and higher rates of unemployment in people with YOPD (Parkinson Foundation Western Pennsylvania, 2017). It can be difficult for employers, the general public and family members to understand how someone who is seemingly young and fit could have a disease of this type.
It can also be difficult to diagnose Parkinson’s in youth, or individuals on the cusp of middle age. Gina Lupino, a professional lawyer who was diagnosed with Parkinson’s at the age of 38, explains that the Parkinson’s diagnosis actually helped alleviate some stress because there was finally an explanation for the symptoms she was experiencing. She immediately told her family and a number of friends about her Parkinson’s diagnosis. She explains, “Their response was overwhelmingly supportive. I did feel conflicted about telling people who I was intimate with and who I worked with. Then I said to myself, screw it – I wouldn’t want to date anyone who cared about my brain’s ability to produce dopamine. It didn’t adversely affect my work. It did make me do a 180 and take exceptional care of my health, which ironically made me better at my job and feel and look the happiest and healthiest I’ve ever felt in my entire life. The only way to change the public’s perception of people with disabilities is to be open and out about it. If people like me don’t open up, public perception will stagnate and negative stereotypes will remain in place.”
Disclosing the Disease
Many individuals with Parkinson’s grapple with the decision of whether or not to disclose their condition. However, as the disease progresses, it may become necessary for the person with PD or YOPD to disclose their condition to their employer. According to human rights law, it is illegal for an employer – current or prospective – to discriminate against an employee with a disability. Legally, Parkinson’s is defined as a disability (Parkinson Society British Columbia, 2013). For Gina, she began to experience extreme fatigue, loss of mobility on the right side of her body and tremor in her right hand. The tremor affected her ability to type, write and shake hands with colleagues. This disease forced her to begin to prioritize self-care – she gets plenty of sleep, sticks to a healthy diet, gets rest and focuses on her emotional wellness.
Gina sometimes uses dictation software to help her type documents and emails, has opted for phone calls rather than email exchanges with colleagues and clients and takes medication to help regulate her dopamine levels. Interestingly, she is positive that all the steps she has taken to manage her Parkinson’s and continuation with a high-stress career has made her a better lawyer. However, she is concerned about long-term effects of the disease, especially the effect that Parkinson’s may have on her cognition, ability to work, play percussion or be physically active.
Family
When a family member is diagnosed with Parkinson’s disease, it may be difficult for family to process. They may react emotionally, and be scared for the future. In Gina’s experience, her family members who actively learn about the disease have many of their fears alleviated. While it may be difficult for family to fully comprehend a disease like Parkinson’s, family and social networks can also be a major source of support for the person diagnosed.
Sources
Ahlskog, J.E. (2016). The Nuts and Bolts of Parkinson’s Disease Management [video].
Lister Hill National Center for Biomedical Communications. (2012). Parkinson disease. Retrieved from https://ghr.nlm.nih.gov/condition/parkinson-disease
Parkinson Foundation Western Pennsylvania. (2017) Young Onset (YOPD). Retrieved from http://pfwpa.org/aboutparkinson-disease/young-onset-yopd.html#article-id-233
This content was published in the Spring 2017 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.