coping with a diagnosis

When you or a family member is diagnosed with Parkinson's disease (PD), you will experience a range of emotions and go through several stages of adjustment to the disease. As PD progresses and brings new challenges, you will go through many of the emotions and stages of adjustment anew. Each person experiences stages in their own order and at their own pace.

Denial, Disbelief, Shock

Denial can be a useful coping mechanism if it allows you to largely ignore symptoms and go on with life as usual. However, if denial leads to the refusal to take medication or going to extremes seeking multiple second opinions, it may indicate denial as an unhealthy response.

This response may be prolonged if symptoms are mild or the correct diagnosis is not made early after symptoms arise.

Discouragement, Searching for an Explanation

In this phase, people look for some direct cause for the health problems they are experiencing. You might become preoccupied with asking yourself "why me?" while searching for something or somebody to blame for the unwanted circumstances occurring in your life.

Shifting Abilities, Role Reversals

People with PD often need more time to perform activities because of changes in hand coordination, muscle stiffness or slowness. Conflict may arise as it becomes necessary to reevaluate who is responsible for what tasks in the family and around the home.

Changing abilities and assuming new roles can cause frustration and emotional upheaval, while stress makes PD symptoms worse.

Identity Change

At this stage, you may realize that PD has impacted your life. You are willing to take on the work to achieve your optimal level of independence and connect with others who share the same condition for education and encouragement.

Remember that you are not alone. One million people in the U.S. and 10 million people worldwide live with PD. These estimates do not account for cases of PD that are unreported, undiagnosed, or misdiagnosed. With a diagnosis and the freedom to learn at your own pace, you can begin to understand PD, its treatments, and the role they will play in your life. Your diagnosis can be the first step to taking charge of your life with PD. What are some next steps?

Hear Stories from People with PD

It is common for many people to experience a wide range of emotions upon diagnosis from shock, to anger and even to sometimes a sense relief at being able to name symptoms (perhaps a small tremor or weaknesses) that have gone unexplained or misdiagnosed for years. Hear from others who may have had a similar experience similar. Start with My PD Story.

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Call or email our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your questions — from PD information to referrals to nearby specialists.

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Page reviewed by Dr. Lauren Fanty, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

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