Parkinson’s disease: Coping with a diagnosis

Parkinson’s disease (PD) affects people from every walk of life. Race, age, ethnicity, socioeconomic status, and many other ways that society differentiates people do not make a difference. Whatever the reaction to your diagnosis, your goal should be to think through the emotional and physical effects of your diagnosis and to learn all you can about the illness – as well as the resources that can help you stay healthy, both mentally and physically.

Your Parkinson’s symptoms are unique to you

Your Parkinson’s and how you deal with it are as unique as you are. Parkinson’s disease affects everyone somewhat differently. As you will discover, your symptoms will continue to change, often from day to day, and throughout the course of your life. That is why the first step in coping with the changes that accompany a Parkinson’s diagnosis is to simply be aware and notice new symptoms as well as how your body responds to certain activities, stresses and therapies.

Coping with your Parkinson’s disease diagnosis

By focusing on your strengths, nurturing caring relationships, sharing your concerns, and embracing healthy behaviors, you can better cope with the potential challenges of PD.

Be open with those around you. It is important to your overall well-being that you open up to friends and loved ones and get the support you need. Set aside regular time to talk honestly with your spouse or life partner about the challenges you are facing. This will help you both understand each other better and make more balanced decisions over the long run. A PD support group can offer a venue to share your experience with those on a similar journey. This can lift stress, foster new friendships and prevent isolation.

Do what you can, while you can. Many people with Parkinson’s disease are not allowing the condition to take over their lives. Despite the everyday setbacks they face, they are still creating fulfilling lives for themselves by redirecting their attention to people and activities that bring them joy. You can do the same. Find some activities that help you forget about Parkinson’s for a while.

Embrace a healthy diet & exercise. Healthy behaviors including attention to diet, meal planning and regular moderate exercise, can also improve emotional well-being. The foods you eat – and when you eat them – can impact how you feel. Having a meal plan in place can reduce worry and ensure healthy eating. Regular exercise, including yoga, Tai chi and boxing, can improve PD symptoms and mental health.

Build your support system. It is important to share your feelings and needs. Family, friends and neighbors often want to help, but may need your direction. The bigger your aid network, the better. Having people and groups to emotionally support you and those who can help with basic needs, such as transportation or meal preparation, prevents any one person from taking on too many responsibilities and becoming overwhelmed. Having other people be involved in your support system gives you more options and can reduce stress for everyone involved.

Ask for help. Whether you were diagnosed early in the disease, or have had symptoms for quite some time, there will come a day when you can no longer do something. Although asking for help with activities of daily living (ADLs) can be very difficult – particularly if you have never been one to rely on others – you will need to learn how to request and accept assistance as your disease progresses. Drawing from the care and interactions of close friends and family will help you better cope with the illness.

Find a medical team you can trust. The most basic piece of advice for anyone facing a Parkinson’s diagnosis is to seek the care of a neurologist who you trust, and with lots of experience treating Parkinson’s patients. That may mean traveling to a major medical center where highly trained Parkinson’s care teams – neurologists, nurse specialists and therapists – provide comprehensive care.

Learn to accept what you can no longer do. Over time, it may seem as though you are losing your independence because you can no longer do all the things you once did. As these losses occur, you will probably go through the five stages of grief: denial, anger, bargaining, depression and acceptance. Being aware of the issue or loss to which you are reacting will help you to move from one stage to another more easily.

Taking control of the things that you can will help you minimize stress. Simplify your daily schedule. Set short-term goals. Plan nutritious meals in advance. Focus on what you can do, and ask for help where you need it.

David Song, MD is a UCR Health neurologist with expertise in movement disorders, including Parkinson's disease. To learn more, view Dr. David Song’s profile.