Coping with a Parkinson's Disease Diagnosis
Getting a diagnosis of Parkinson’s disease (PD) can bring up a lot of emotions for both the person with PD and their caregiver. PD greatly impacts your life, particularly as the disease progresses. Although you cannot control the diagnosis, you can make choices about your treatment and your lifestyle that can give you purpose and a sense of control.
If you are newly diagnosed with PD, learn all you can about the disease, the potential symptoms, and the treatment options available to you. Look for credible sources by medical professionals or using referenced medical sources. Having this knowledge will help you make informed decisions and advocate for your care. However, learn at your own pace. Some people find that reading too much at once is overwhelming or can cause added anxiety about the future.1
Reach out for support
Get help and support from friends and family. Talk to them about what is happening to you and ask for what you need. You may also gather strength and support by talking to others who have PD, such as those in a support group. Many people with PD also find that talking to a mental health professional, such as a psychologist or counselor, can help. Social workers trained in working with people with chronic conditions are another resource for people with PD.1,2
There are several lifestyle approaches that not only provide you with a sense of control over your disease, they can help make your condition more manageable. Lifestyle approaches for people with PD include:
- Nutrition – Good nutrition is essential and may help with the management of symptoms. Diet and the timing of meals can also impact medication schedules, as well as the effectiveness of medications for PD.3
- Exercise – Regular exercise is essential for people with PD to maintain balance and mobility. Research has shown that exercise may have protective effects for neurons (nerve cells), possibly slowing the progression of Parkinson’s, and has also been shown to relieve some of the motor symptoms of PD.4,5
- Stress management – Stress can affect your health and how you feel. Stress management techniques, including meditation and breathing techniques, can help reduce your stress and improve your mood and your ability to perform daily activities.1
Major Parkinson’s disease organizations
There are a number of national and regional non-profit organizations that provide information and support for people with PD and their caregivers. Several also help funnel funds to research for PD.
- The Michael J. Fox Foundation for Parkinson’s Research was started in 2000 by Michael J. Fox and focuses on research and the development of “breakthroughs patients can feel in their everyday lives.”
- Parkinson's Foundation concentrates on helping people with PD and their families enjoy life “until there is a tomorrow without Parkinson’s.”
- Parkinson Research Foundation focuses on funding research to help find a cure for PD. They also provide education and services for patients and caregivers.
- The Bachmann-Strauss Dystonia & Parkinson Foundation is focused on research and dedicated to finding better treatments and cures for PD and dystonia.
- Northwest Parkinson’s Foundation is committed to helping improve the quality of life of people in the PD community.
- American Parkinson Disease Association is the country’s largest Parkinson’s grassroots organization and provide support groups. Their mission is two-fold: ease the burden and find the cure.
- Spotlight YOPD is focused specifically on young-onset Parkinson’s disease (YOPD).
- The Parkinson Alliance was organized to foster philanthropic activities to raise funds for PD research.