Sometimes, accepting a Parkinson's diagnosis for yourself or your loved one is one of the most challenging aspects of the PD journey. How do we respond to the diagnosis? How can we be sure we are making the correct treatment decisions?
In this blog post, we will talk about getting comfortable in sitting with uncertainty, look at how various people respond to the Parkinson's diagnosis, and knowing where to start when it comes to making the best treatment decisions for yourself and your loved ones, including tips for getting organized for the journey ahead. Let's begin with Sitting with Uncertainty.
SITTING WITH UNCERTAINTY
"What can I expect?" is one of the most burning questions for people with PD, especially those who are still new to it. Providers are often asked to pinpoint the "exact stage" of someone with Parkinson's disease or what a person's symptoms will look like a specific number of years from now. We crave understanding and control -about our body and our futures. Unfortunately, there is no crystal ball for PD and healthcare providers cannot predict what any one person's unique set of symptoms, response to treatment, or progression will look like. Each person's Parkinson's journey is unique, which be both scary and comforting.
"What if?" questions are natural, but limited answers can create feelings of frustration. While it may be uncomfortable, allow yourself the space and energy to sit with these uncertainties and all of your feelings related to them. It can also be empowering to remind yourself that you are in control of many aspects of your PD. By committing to an exercise routine, taking your medications as prescribed, finding the right care providers, building your support system, and being adaptive, you can positively influence your quality of life with Parkinson's.
RESPONDING TO THE DIAGNOSIS
Every person who receives a PD diagnosis responds differently to the news. Some people react with anger or depression, perhaps feeling resentful that this happened to them, hopeless about what the future may hold, or regretful that they did not better appreciate life before PD. Some wonder whether certain past lifestyle choices or factors "caused" their PD. Others respond with denial, which an look different from person to person. For some, a diagnosis may mean refusing to talk or learn about PD, holding unrealistic expectations about treatment or progression or seeking out opinions from multiple doctors in a search for any possible explanation for their symptoms other than PD. Yet others may respond with positivity, or a sense of gratitude or relief in having a specific diagnosis, knowing they were not "imagining" symptoms and having a better understanding of what they are dealing with and more definitive answers and treatment options.
How someone reacts to their diagnosis depends on a variety of factors; these can include characteristics, such as age at diagnosis, whether they are still working and the strength of their support system. A person's prior experience with Parkinson's can also play a role in their reaction. Someone who has known a person with PD who struggled with their symptoms, or someone who attributes the death of a person with PD to the disease may fear a similar experience. The way in which the diagnosis is shared can also have an impact. For example, a person who is incorrectly told by a doctor that "nothing can be done" for PD, might respond differently than someone who's doctor thoughtfully answers all of their questions, explains the diagnosis and treatment options, and connects them with resources.
A person with PD and their care partner may react and cope differently. Family members and friends may feel entirely different from their loved one who is adjusting to the diagnosis. How someone views and feels about this disease will also change as time passes and their experience and symptoms evolve. Take a moment to reflect on how you reacted to the diagnosis and how your perspective of Parkinson's may have shifted over time, for better or worse, since diagnosis.
MAKING TREATMENT DECISIONS
When reading about PD, you may see different medications that your neurologist never mentioned to you or different techniques or surgery's that have not been discussed. Treatment decisions and medication changes are commonly based not only on the neurologist's observation during your exam, but also your own report of how your symptoms are changing with activities throughout the day and impacting your life.
One of the ways to understand whether it is time to discuss a new PD management approach is to ask yourself these questions before each appointment:
Am I able to do everything that I want to do in my life right now?
Do I feel that my symptoms are currently well-controlled by my lifestyle and medications?
Create a list of things that you would like to do, or continue doing in the next five years. Whatever you choose, these activities should be fulfilling and meaningful. After making the list, periodically read it over to see whether the symptoms of PD have been interfering with participating in these activities and meeting your goals, or if you can purposefully make the time to do those activities. This can be a helpful way to assess how you are doing and determine treatment goals with your medical team.