Coping with Parkinson's Diagnosis Early
The following is an excerpt from the book Alter The Course. Newly Diagnosed Parkinson’s disease.
“Parkinson’s disease is an unexpected- and unwanted- twist and turn in your life journey. Like any journey there is uncertainty about what lies ahead, how things will change or where your life with PD will take you. Although you cannot completely control your future, certain choices you make can guide your course to set your path in the best direction.
Change is an opportunity to refocus and negotiate how life’s twists and turns will play out for you. No one can predict their future but they can lay the foundation for their future to unfold in a particular direction. Like any journey, the first step is to set your intentions and take deliberate steps toward positive action. Your diagnosis presents you with just this opportunity- to take action and choose how you will move forward.”
Get the Facts - How Much and When
Learning all you can about PD, symptoms, potential changes and its treatment will give you the confidence and tools to play an active part in your care, advocate for your needs, prevent or delay physical changes and feel in control. Remember that everyone will be different in their approach and how they respond to information. Some people thrive by learning all that they can, both good and bad, so that they are aware of potential issues and the best way to tackle them if they occur. Yet others, especially early in the disease, find that too much information causes unnecessary anxiety about the future.
Think about which approach works best for you before you dive into learning about PD ‘full steam ahead.’ Do you need to pace yourself? The internet is full of information, some of it good, some of it not. Be sure to seek credible sources by respected professionals and foundations. Look for information that is designed to empower, inspire and offer practical guidance rather than read like an encyclopedia of facts. If too much information is overwhelming then you may want to start with your doctor and or allow some time after the diagnosis before learning more.
Friends, Family and Support
Your first few years with PD will be less scary if you reach out to others. It is comforting to have others for support, guidance and to lean on when needed. Talk with family and friends about what is happening. Seek the advice of others who have ‘been in your shoes’ and are managing well.
A SUPPORT GROUP is one way to meet others who can help. Each support group has its own ‘personality’, focus and style. If you are not sure if you are ready for a support group, start by asking the leader how many attendees are newly diagnosed and in your age group to gauge whether it is the right fit for you. You may also find it helpful to talk with the support group leader about group dynamics; for instance does the group focus on guest speakers and lecturers? If so, you can pick and choose which day to attend. Be wary of groups that focus entirely on the negative without time for support, a motivational message and/or positive solutions.
Take Charge of your Medical Care
Parkinson’s is a life-long condition. As such your symptoms will change and treatments will be modified to respond to these changes. New advances in our (your) understanding of disease and what you as an individual can do for your wellbeing means that you will have many different options and strategies for your care. Your personal healthcare values and preferences add even more options for care that is tailored to you as a person and not just the symptoms of disease.
As one patient stated when describing her healthcare, “I feel best when I am part of the [treatment] solution.”
**Be a part of your solution.**
Partner with your medical team to help them make the best choices for you. Do this by preparing for your medical visits, setting goals and objectives, keeping notes when necessary, organizing your information and healthcare data in one place and advocating for the care you need.
You are not your disease. You are a person living with PD. Although this is an obvious statement, it is also a very important reminder. Often we place our focus of attention on the tangible features of disease, symptoms, and their physiologic and neurochemical causes. Yet our neurochemical and physiologic changes occur within a broader network of cellular interactions and neural interconnections responding to our body as a system, the environment we live in and our personal life experiences.
Neuroplasticity is a term used to define changes in brain activity in response to our activities and experiences. In other words your lifestyle not only changes your physical health but also your brain function. Certain lifestyle activities may even change how PD progresses, a term called neuroprotection. Live a brain enhancing lifestyle through:
Life is full of choices. Life changing events like PD, do offer the opportunity, if taken, to do just that- choose how you live your life. So many people live their entire life without taking a moment to appreciate what is really important. Seize this opportunity to take inventory of your life, prioritize what is most important and set goals with this in mind.
Attitude and Gratitude
It is easy to get caught up in regrets, bitterness and anger about what PD has ‘taken’ from you. Counter this with acts of kindness- to yourself and others. Find something each day- big or small- for which you are grateful. Over time you will be able to appreciate the ‘silver lining’ in the clouds and see the positive through the negative.
Spiritual and Compassion
A full life does not depend on how graceful you are, how fast you move, how long you can walk or how physically strong you are. A full life is one filled with personal meaning, sense of value and compassion.
Do not let Parkinson’s take this from you!
Our futures are uncertain and this can be scary. Having a plan for change will help you remain in control. Learn about the roles of a healthcare proxy, living wills and power of attorney. Investigate services that are available in your community and long-term care opportunities in the event you are in need. Discuss and write down your healthcare wishes at end of life so that these wishes are respected.
Monique L. Giroux, MD
(Former Medical Director of NWPF)