My mother has lived with her Parkinson’s Disease diagnosis for over 22 years and yet as her child I am still learning new ways every day I can be an advocate for her.
Whether it is supporting her career and commitments, helping her evaluate relationships with friends and family, or contributing to the greater PD community. Here I discuss the different ways I find it important to advocate for my mother and how I may go about doing that.
With family and friends
Your parent’s most immediate circle of family and friends are likely going to be their greatest support network and may very well be acting as advocates for them as well. This being said, there is certainly still a meaningful role you as their child can play in terms of advocating for your parent’s wishes and best interests within this circle. For example, establishing this system as strong and well organized will ensure that your parent with Parkinson’s needs are being consistently met, be it physical challenges or emotional struggles. Additionally, your parent may not feel comfortable communicating certain details or symptoms with less immediate members of their support circle. As their child they may feel more secure discussing these issues with you or other family members and through thorough conversation you may come to the conclusion together as to how other loved-ones can be involved.
>With their care
Whether your parent is newly diagnosed or has been navigating PD for decades, planning their medical care alongside their physician can be challenging, confusing, and tiring. Discussing what role you can play in their care with your parent and their physician can help create a clearer path for you and your parent. This may include attending their medical appointments to provide encouragement and another set of ears listening to the doctor’s orders or talking through what the most appropriate form of care will look like for them (Do they need additional healthcare support? Who will be their main caretaker? What will your role look like as their child? – these are all things that should be considered and explored with your parent and perhaps their healthcare provider). Furthermore, you may want to seek out resources in your community, such as patient support groups, safe and enjoyable exercise classes, or events put on by organizations in your community – all of which can be great supplements to medical treatment.
With their career and commitments
As with any progressive condition, your parent with Parkinson’s may need to continuously be reflecting on their commitments, be it career, hobbies, or activities, and adapting their undertakings to their ever-changing situation. I have found that facilitating and encouraging discussion of this reflection with my mother to be a great way for me to better understand where she is at with her condition and how I can advocate for her as she adjusts and customizes her schedules. It is also important to consider the balance between advocating for you parent’s physical needs with their emotional and mental strength and resilience. I know I have found myself trying to convince my mother to turn down opportunities when I think her plate is too full or that she should stay in on a night it seems like she may be “off”. However, over time I have come to understand that advocating for her as a person with Parkinson’s also includes advocating for and echoing her mental fortitude, and supporting her in the endeavors important to her .
With the PD advocacy community
As the child of a person with Parkinson’s, I have often found myself deep in feelings of helplessness with regards to my mother’s condition, overall wellbeing, and future. One way I can mitigate this has been by advocating within the greater Parkinson’s community. From my experience, the easiest way to start is simply by seeking out educational resources about Parkinson’s that can be found online from a variety of organizations. The more well-informed you are on the disease and how it can affect both yours and your parent’s lives, the better you will be as an advocate in the PD community. Further, this may look different to everyone. You may want to get involved with a fundraiser and donate your money or time to a Parkinson’s-related charity. Perhaps to you advocacy looks like spreading awareness for the disease. I have found that as I further entrench in the PD community, I have a better understanding on my mother’s experiences, and it has brought us together and acted as a way to start conversations on her disease (something that can all too easily become a taboo or sensitive topic), and ultimately it allows me to show the care and respect I have for her.
By Neha Mathur, who is pictured above wearing a white dress with her mother, Soania and two sisters.
Read Neha’s other article contributions as part of our Kids of Parkinson’s program here: