Parkinson’s Needs Many Friends
Dear friends,
I am sharing with pride my daughter Zoe’s college research paper entitled “Parkinson’s Needs Many Friends.” In this essay, she delves into the characteristics of three important relationships for a person living with Parkinson’s disease: their children, neurologist and caregiver. I hope you find it a useful and interesting read.
All my best,
Miriam
Parkinson’s Needs Many Friends - By Zoe Bram
Parkinson’s disease (PD) is a neuro-degenerative disease in which one no longer produces an adequate amount of dopamine neurons, impacting the part of the brain that controls movement. There are several motor and non-motor symptoms associated with Parkinson’s disease such as tremors, stiffness, speech problems, depression, and anxiety. It is important to keep in mind that Parkinson's presents itself differently in every individual. I personally have experienced living with a person with Parkinson’s disease. My mother was diagnosed with Parkinsons when I was five years old, and though I didn’t necessarily understand the diagnosis at the time, I know many relationships have been altered due to the introduction of Parkinson’s to my mother’s life. My mother, my family and all others who are a part of her support team are riding on a never-ending roller coaster. Research has shown how Parkinson's disease affects the patient’s relationships with all members of their support system including the main caregiver, children, and neurologist. Studies have distinguished between all the different people that work with the patient to get a well rounded understanding of the team.
Scholars claim that one of the most important relationships for a Parkinson’s patient is their relationship with their main caregiver due to the substantial amount of time spent together. Caregivers play a huge role in making the best of the patient’s abilities. In many cases, the primary caregiver is the patient's spouse. Being a caregiver of people with Parkinson’s disease, a study by Padvoni et al., dives into the personal experiences of the caregivers. Padvoni et al. establish that the reason they take on this role is due to the love they have for the patient. Although a caregiver loves and cares for the patient, they will experience both mental and physical struggles while collaborating with the patient. Padvoni et al. continue to argue that a caregiver should not put too much pressure on themselves since it will lead to a rapid deterioration of their mental health. If the caregiver feels overwhelmed and starts projecting their negative feelings onto the patient, they will be adding to the patient’s distress rather than alleviating it, which is their intended goal. Villasenor et al. also look at caregiver and patient relationships and emphasize the need for the main caregiver to share the responsibility with others in order to avoid feeling overworked. However, even when they share the responsibilities, they still have a lot on their plate. Henry et al. explore the negative side effects on the caregiver's quality of life due to the large amount of time and effort they put into their work. They experience a caregiving burden including mental, physical, financial, and task burdens (Henry). All of these burdens can lead to a decrease in mental and physical health(Henry).
Roland and Chappel build on the conversations of caregivers' relationships to Parkinson's patients by comparing their experiences with caregivers for Alzheimer's patients. Caregivers for Parkinson's patients reported more disagreements between the caregiver and patient.(Roland) This finding implies that since Parkinson's patients aren’t experiencing memory loss like Alzheimer's patients, they are able to express their opinion about how they want to be cared for. If the caregiver and patient have conflicting opinions, there can be tension that can weaken or hurt the caregiver patient relationship (Roland). The caregiver and patient must remind themselves that they both share the same goals, namely, to make the patient's life easier.
Baker and Graham explore a Parkinson's patient’s journey overtime with a focus on spouses as main caregivers. They explored a complication when spouses feel guilt due to their lack of desire to be the main caregiver and some patients don’t want to depend on their partners.(Baker, Graham) All in all, the relationship between the primary caregiver and the patient is an important, yet difficult one because they focus on the day-to-day hardships that arise from Parkisnon’s disease.
As previously shown, there has been a significant amount of research regarding the main caregiver’s relationship to the patient. However, Blanchard et al. notice the lack of attention to a Parkinson’s patient's relationship with their adult children. Blanchard et al. argue that the burden and stress placed on the main caregiver is eventually handed over to the adult children. It is critical that these adult children get the guidance and support in order to assist the caregiver and learn their techniques(Blanchard). In order to collect concrete evidence on the experiences of these adult children, Blanchard, Hodgson, Lamson, and Dosser conducted interviews of seven adult children whose parents have been diagnosed with Parkinson's disease. The parent-child relationship is different from the spouse’s relationship since the parent with Parkinson’s originally took care of the child and once the diagnosis was introduced, these roles switched abruptly. A chronic illness “ often creates shifts in interdependence, independence, and dependence within a parent-child relationship"(Blanchard). The fact that the parent-child dynamic takes a 180-degree shift shows how much a chronic illness, such as Parkinson’s, alters the family dynamic. Blanchard et al. explain that this shift is not always smooth, though it can be, because changing one’s accustomed role can lead to feelings of instability. Blanchard et al. differentiate between possible reactions from the adult children. Some adult children previously viewed their parents as a hero or idol and it was hard for them to accept the fact that they aren’t fulfilling this image anymore(Blanchard). Others had the opposite reaction and looked for the positive by helping to care for and spending time with their PD parent (Blanchard). Blanchard et al. acknowledge that these differences in children’s immediate responses to their parents' diagnosis are due to both the severity of the motor and non-motor symptoms of the patient. Researchers must note the fact that Parkinson’s is constantly changing and the patient's symptoms can improve or worsen over time, making the children’s relationship constantly prone to changes as well (Blanchard).
In addition to family members, there are many more individuals who are a part of the patient's support team. Specifically, an important individual for a patient with Parkinson’s is their neurologist who specializes in movement disorders (MDS). More specifically, a MDS neurologist diagnoses and treats movement disorders, such as Parkinson's disease. The neurologist prescribes important medication to alleviate motor and nonmotor symptoms. Without the expertise of a neurologist, the patient would be struggling to alleviate these symptoms that affect their everyday life. Shwartz et al. work to understand strategies for successful communication between neurologists and patients. Schwartz et al. point out that a key way to create a trustworthy and dynamic relationship is by treating the patient as “a partner in the medication adjustment process”. Parkinson’s disease can look different from person to person and working to cater the medication and treatment prescribed by a neurologist requires an emphasis on teamwork and partnership (Schwartz). Additionally, Schwartz et al. emphasize the importance of creating a “roadmap for patients”(Schwartz). Patients need overall guidance of how to manage their day-to-day lives and, more specifically, know when to check in with their neurologists.
Dr. Denis Bergeron and Mark Cardwell’s story distinguishes between the roles of family and neurologists and emphasizes the importance of a multi-faceted support team. Cardwell states that his father, Dr. Bergeron was a neurologist for Parkinson's patients. Once Mark, Bergeron’s son, was diagnosed with Parkinson’s, Bergeron had an extremely severe emotional reaction. Cardwell states that “none of [his father’s] work... prepared him for the shock of hearing his own son's diagnosis.” Mark then shared that he and his father “were fairly close before. But his reaction really strained our relationship." The closeness of familial relationships leads to stronger emotional reactions. Cardwell implies that, as a neurologist, it is crucial that one finds an appropriate balance of emotional investment in their patient’s lives.
There are many different relationships that a Parkinson's patient relies on and every relationship plays a different role in supporting the patient. Relationships with family members tend to be more complex due to strong familial bonds and the overwhelming amount of emotions involved. Though relationships with professionals, such as one’s neurologist, aren't as emotionally intense, they are equally important as they work with the patient in a medical setting. A patient should not have to rely on one individual as a support system because there are many different people who specialize in certain types of aid. Without a mix of all these relationships, the patient would either feel like their illness has dehumanized them if they only worked with professional doctors, or they could feel suffocated by solely relying on their immediate family. The responsibility of care should be shared between a team to account for the wide variety of needs of a Parkinson's patient.
Baker, M. G., & Graham, L. (2004). The Journey: Parkinson’s Disease. BMJ: British Medical Journal, 329(7466), 611–614. http://www.jstor.org/stable/25469078
Blanchard, Amy ; Hodgson, Jennifer ; Lamson, Angela ; Dosser, David. (n.d.). Lived experiences of adult children who have a parent diagnosed with Parkinson’s Disease. Qualitative report. Nova Southeastern University, Inc.
Cardwell, M. (2002). Marc's cause: A Quebec neurologist found himself almost unable to handle the emotional pain when his own son became the youngest Parkinson's patient he had ever seen. Medical Post, 38(9), 29. Retrieved from https://proxy.lib.umich.edu/login?url=https://www.proquest.com/trade-journals/marcs-ca use-quebec-neurologist-found-himself/docview/228756301/se-2?accountid=14667
Henry, R. S., Lageman, S. K., & Perrin, P. B. (2020). The relationship between Parkinson’s disease symptoms and caregiver quality of life. Rehabilitation Psychology, 65(2), 137–144. https://doi-org.proxy.lib.umich.edu/10.1037/rep0000313
Padovani, Camila ; Lopes, Mislaine Casagrande de Lima ; Higahashi, Ieda Harumi ; Pelloso, Sandra Marisa ; Paiano, Marcelle ; Christophoro, Rosangela. (n.d.). Being caregiver of people with Parkinson 's Disease: experienced situations. Revista brasileira de enfermagem. Brazil: Associação Brasileira de Enfermagem.
Roland, Kaitlyn P ; Chappell, Neena L. (n.d.). Caregiver Experiences Across Three Neurodegenerative Diseases: Alzheimer’s, Parkinson’s, and Parkinson’s With Dementia. Journal of aging and health. Los Angeles, CA: SAGE Publications.
Villaseñor, Teresita ; Perrin, Paul B ; Donovan, Emily K ; McKee, Grace B ; Henry, Richard S ; Dzierzewski, Joseph M ; Lageman, Sarah K. (n.d.). Parkinson’s family dynamics and caregiver sense of coherence: A family‐systems approach to coping in Mexico and the United States. Aging medicine. Australia: John Wiley & Sons, Inc.
About Miriam
I share my personal stories to offer a glimpse into what it is like to live with Young Onset Parkinson’s, revealing honest and intimate reflections. Hearing other people’s stories can be a lifeline for many of us living with this neurodegenerative disease. I hope to inspire and educate people living with Parkinson’s and to create community through shared experiences.