As with any life-changing condition, one of the main challenges faced by people living with Parkinson’s disease is a sense that they are losing control over their lives and their well-being. While current and future medical developments offer much hope for people with Parkinson’s, it is important that patients take meaningful steps to regain control over their own lives as they learn to live with the condition.
1. Know yourself and know your Parkinson’s
Fear of the unknown can be paralyzing for anyone; for a patient dealing with Parkinson’s, it can make life more difficult than it needs to be. Learning more about Parkinson’s and knowing what to expect can help you set aside your worries about the future and focus on what really matters – how best to live your life today.
- Educate yourself
Since Parkinson’s disease is relatively common, it is also a well-researched condition. Numerous reliable sources of information are available online, providing general information about the disease, outlining treatment options, and even offering insight into current and future novel therapies that may be right for you. Below is a list of well-established, reliable sources of information dedicated specifically to Parkinson’s disease patients and their families:
- Things to ask your doctor
Given the nature of the condition, you will likely have several appointments with your doctor about your Parkinson’s disease treatment. Try to take advantage of these meetings to discuss with your doctor any questions or concerns you have, and ask for their insight and advice. Below is a list of questions you may wish to ask your doctor about your Parkinson’s and how it might affect your life going forward:
- What can I do to improve my life with Parkinson’s?
- How will I know when the right time has come to start taking medications for Parkinson’s or increase the dose?
- How can I prepare for the more complex stages of the disease?
- Which other physicians and health care professionals should I consult?
- What side effects might I experience? How common are these side effects?
- What will my options be if my treatment stops working?
- How will my condition affect my independence? Can I still drive?
- How will my condition affect my physical activity? Can I still exercise?
- How will my condition affect my sex life?
- New developments
Long-established therapies for Parkinson’s disease are usually a first-line treatment for most patients. However, novel therapies are constantly being developed by scientists around the world, adding to the ever-growing arsenal of treatment options for Parkinson’s disease. You might even consider joining a clinical trial for therapies that have not yet been approved by regulatory authorities and, by doing so, play a part in cutting-edge clinical research pushing forward the frontiers of medicine.
2. Set your priorities
- Focus on what matters to you
The goal of Parkinson’s disease treatment is to offer patients improved quality of life for as many years as possible. By focusing your efforts on what matters to you most, you will be able to develop strategies to allow you to keep doing what you love as you continue to live with Parkinson’s and maybe even discover new interests and passions. Did you know that some people with Parkinson’s actually discover a creative side to themselves that they didn’t know they had? Many people turn to strengthening their relationships with their family members and friends. Others continue to pursue accomplishments in their professional career or dedicate their time and attention to hobbies or learning a new skill, maybe a new language, sport, or creative art. Talk to your health care professional and family to see how they can help you accomplish your goals.
- Make plans for the future
Living with Parkinson’s disease may be demanding. By making sure you have clear plans for the future, you can worry less and focus more on enjoying your life now, knowing that most eventualities are taken care of. For example, you may wish to meet with a financial advisor or an insurance broker to make sure that you understand your financial situation and make any necessary changes to ensure that you and your loved ones are taken care of in the years to come. You may also wish to prepare a will or even a living will and discuss with your loved ones your wishes should your health deteriorates significantly.
- Lifestyle changes
Medication and surgery for Parkinson’s work best when they are combined with a healthy lifestyle and mindset that promote good physical, mental, and emotional health. By making some simple lifestyle changes you can improve your quality of life considerably.
a. Your physical wellbeing – an active lifestyle is beneficial for overall health and may be doubly beneficial for people living with Parkinson’s disease. Exercise and other physical activities may help maintain your strength, flexibility, balance, and even a good mood. Some people living with Parkinson’s enjoy outdoor activities such as sailing; others use designated Augmented Reality (AR) technologies to help them exercise, or practice yoga or tai chi. Dancing, in particular, can help some people maintain their balance and coordination as they engage in an enjoyable social activity and learn a new skill.
b. Your emotional wellbeing – maintaining a good mood can help you enjoy a full, wholesome life as you learn to live with Parkinson’s. Make sure you discuss any emotional challenges with your doctor, as they might be an indication of a serious condition, or even a symptom of Parkinson’s itself. Some activities may be particularly beneficial for emotional health, such as meditation, exercise, and strong relationships with others. Additionally, some people turn to prayer or other spiritual activities for meaning and hope.
c. Your social wellbeing – strong social relationships and participation in social activities have been shown to improve people’s quality of life, emotional health, and even physical health. Make your relationships with family and friends a priority; make plans to spend quality time with the people in your life you hold dear. Community involvement, such as volunteering with a local organization or a religious community, can be a powerful means of feeling useful and making a positive difference in other people’s lives, in turn improving your own self-esteem and wellbeing. Although the thought of being active in patients’ associations may make some feel uncomfortable, it offers a huge potential for connecting with others and many opportunities for sharing knowledge and tips on every aspect of your life affected by your condition, and there is much comfort in knowing that you are not alone.