A Parkinson’s Disease diagnosis of a loved-one can seem daunting and confusing at first. It is a complex and progressive condition, but its challenges can be more easily navigated by keeping a few key tools and courses of action in mind.
My mother was diagnosed with Parkinson’s disease before I was even born, so growing up it was simply a part of our every-day lives. This being said, it is a progressive illness and as I got older and moved into young adulthood I began to see her condition in a different light as she gracefully adapted to the unrelenting challenges PD poses. I was now finding myself with more questions than ever before: what will her future look like with a neurodegenerative disease? How can we as her family support her and find resources to aid with PD’s many symptoms and consequences? Will my sisters and I be affected?
Where to start
The first thing to remember is that they are still the same person. You both may have to adapt certain aspects of your lives along the way, but ultimately you are still their child and they are your parent and this unique bond will continue to remain true. Next, focusing on positive and mindful communication will be key in navigating a disease that brings such uncertainty to your current lives and future (see my blog post titled “Communicating with a Parent with PD” for more details). With this in mind, perhaps placing emphasis on reflection and your questions will guide your next steps. I find it helpful to keep a running list of questions and concerns that pop into my mind and periodically go through them and figure out where to best look for answers. Sometimes a simple conversation with my mother may clear up some of the more individual concerns, or maybe I can look it up online and seek credible information if it relates to the disease itself or broader issues. If there are questions that may be better answered by a physician, say they are about my mother’s specific condition, then I might ask my mother if I can join her at her next appointment and discuss my inquiries with her and her doctor. I believe this technique allows me to clearly outline my thoughts and feelings, forcing me to continuously reflect, and provides clear actionable steps to seeking knowledge from the most relevant resources.
Building your life with a parent with PD
Though a PD diagnosis of a loved-one sometimes feels like it can turn life upside-down, it is important to remember that it doesn’t have to, instead you may simply need to adjust certain aspects of your already well established routines and relationship. One area of life this is especially applicable may be the activities and hobbies you enjoy doing with your parent, you don’t have to throw away all your favorite pastimes, perhaps they need only be refashioned to better suit your parent’s situation at this point in time. For example, we like to go hiking as a family, so when my mother is joining us all we have to do is go to trails with less elevation and a cleared or paved pathway, and check the weather to make sure it’s not too cold, snowy, or icy. If you enjoy working out together, maybe you just need to seek out lower impact activities or even exercise classes that are tailored to PD or movement disorder patients. On game nights we still pull out our family’s favorites even though we may have to shuffle and deal playing cards for her or roll the dice and move pieces on the game board. If your parent is an avid reader, try starting a small book club and if necessary seek out audiobooks or ebooks to remove any barriers that holding a physical copy for extended periods of time or trying to flip flimsy, thin pages may pose. These are just some examples of the many ways you can adapt your favorite activities for your parent with Parkinson’s and enjoy them just as you always have.
Written by Neha Mathur, who is pictured with her mother, Soania, above.