Roadmap for Self-Care
You have just received a diagnosis of Parkinson’s disease (PD) or perhaps you have been living with PD for many years. Either way, you are probably wondering what steps are important for living your best. Parkinson’s disease is a lifelong journey. Like any journey there is uncertainty about what lies ahead-unknown about how things will change or about where your life with PD takes you. This concern is one of the more common questions I hear in clinic. As a movement disorders Neurologist and Integrative medicine specialist, I believe in the power of a proactive and holistic approach to set the course in the best direction.
No one can predict their future but there are important steps to take that will shape and/or direct your future. Like any journey, the first step is to set goals. Learn as much as you can, , take deliberate action step by step, prepare for change, and be flexible if you have to ‘change gears mid-stream’.
The following steps will help you chart your course.
Set the course
Ø Knowledge is power. Learn as such as you can about Parkinson’s, symptoms and treatment. . Think about how you respond best to a new challenge. Ask yourself if you are someone that does best by learning everything upfront or will more information add worry and stress. If so, do you need guidance to help you digest this information to formulate a plan for the future. .
Ø Be Proactive. With this newly gained knowledge you can work on changes today to move your future in a positive direction.
Ø Be in control of your healthcare. Best medicine is teamwork and you are the captain of your team. Lead the team by understanding your symptoms, insight into your stress levels, keeping medicine lists and medical history up to date; organizing your medical information and important data in one place so that you can easily access it in years to come. Helpful documents are available in My Medical Chart.
Ø Set Goals. Establish priorities, values and what is important to you. As an individual it is important to first identify then voice these preferences and goals. Be mindful of the time commitment and set realistic goals. Goals may need to be modified over time, sometimes you may undershoot or overshoot what is possible within your lifestyle. This will keep you moving forward in a positive direction. Get more information on redefining your goals.
Ø Be in charge of your treatment. Take the driver’s seat, not the back seat. Ask questions; understand why a specific treatment is recommended. Be realistic and honest about what you can do or simply cannot do. Look beyond just medication or surgery and include personal lifestyle changes that will make a huge difference in how you feel now and over time.
Ø Set Priorities. Focus your intentions on what is important to you and what you prioritize in life. Often living with a chronic condition brings forth an opportunity to reset priorities and focus on what is important. For example, if walking and balance is important -don’t wait. Work with physical therapy now, focus on exercise and fitness, use a personal trainer to keep you going and begin right away before it is a problem. Or maybe your focus is not even PD itself but the need to reconnect with family, friends or others that are important to you.
Resiliency is the ability to overcome life’s obstacles, detours and bumps in the road. Resiliency is like an emergency toolkit, giving you the aid to fall back on when things get difficult. Enhancing resiliency means more than just tackling the physical symptoms of PD but adds the power tools of thoughts, attitude and personal healing to the toolkit. See accompanying article on adapting to change.
Ø Physical. Parkinson’s can affect strength, power, stamina, and agility. Be strong. Take your exercise and fitness to the next level. Moving through life requires a balanced routine over a focused one. Do what you can to improve strength, flexibility, posture, balance, aerobic capacity, coordination and agility. Again, balance is key. A physical therapist will help you prioritize and safely tailor your program to your symptoms, goals and current fitness level.
Ø Emotional. Your mood and attitude will be your co-pilot on this journey leading you in one direction or the other. Learnmore about this exciting topin from our prior edition on Mind Power.
Ø Depression and anxiety. These can be symptoms of PD and truly color the way you see your world. Take the time to learn about these problems and talk to your healthcare provider about these concerns and treatment. Depression can limit what you see as possible, ‘putting blinders on life’s journey’ so that you do not see or experience life’s joy, the positive moments or believe that positive solutions exist.
Ø Attitude and gratitude. Attitude plays a big role in how you feel, adapt and respond to life’s changes and how you handle the ‘bumps in the road.’ Positive thoughts shape how we feel, give us hope, expand the possibilities we see and can as a result change the course of disease. Be sure to fill your day with positive activities and thoughts. Focus on what you can do, what you are already doing, and search for new opportunities. Avoid focusing simply on the things you can’t do. Surround yourself with positive people and a positive environment. Help foster a positive environment at your support group rather than only focusing on problems. Finally, remember gratitude. Take a moment each day to reflect on what and whom you are grateful. (Remember the caregiver in your life.) Research proves that this will pay off down the road.
Ø Spiritual. This brings attention to what brings value, meaning and purpose in life. In other words, the connection between you and your world, to ideas and to others. Learn more.
Ø Meaning. It can be helpful to reflect on what is meaningful to you so that you can focus your energy, passion and time on these things.
Ø Support. Support from others goes along way. Family, friends and community are a part of this journey. Just knowing you are not alone can be therapeutic. Remember to give as well as receive. For instance support groups are a wonderful way to get the support you need but also an opportunity to reach out and support others.
Author Monique Giroux, MD
Northwest Parkinson's Foundation Wellness Center