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, bringing 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. Remember, everything you feel is normal.
Denial, Disbelief, Shock
- This response may be prolonged if symptoms are mild or the correct diagnosis is not made early after symptoms arise.
- 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 go to extremes seeking second opinions, it may indicate denial as an unhealthy response.
What to do
- Take time to explore your feelings and be honest with yourself and others. Journaling or telling your story may help.
- Knowledge is power. Learn about Parkinson's and focus on abilities rather than inabilities.
- Remember, each person's Parkinson’s experience is unique.
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.
What to do
- Symptoms of depression are common in any stage of PD. In some cases, depression is an early symptom. Don't be afraid to tell your doctor if you feel depressed.
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.
- Stress makes PD symptoms worse.
What to do
- Maintain open communication with your loved ones.
- Prioritize daily tasks. Get outside help as needed for some tasks such as yard work, housecleaning or home maintenance.
- Regular exercise can help manage stress.
- Seek help from a counselor to resolve relationship conflicts.
- At this stage you may realize that PD has impacted on your life.
- You are willing to take on the work of achieving your optimal level of independence.
- You are also willing to seek out others with the same condition for education and encouragement.
What to do
- Explore new opportunities to find self-fulfillment.
- Adapt to the new circumstances.
- You once again feel some control in your life.
- Take an active role in your health and care. Work with your health care providers to optimize your medications.
- Communicate openly about your priorities.
- Set realistic expectations.
Remember that you are not alone. As many as one million people in the U.S. and an estimated 10 million worldwide live with PD. These estimates do not account for cases of PD that are unreported, undiagnosed or misdiagnosed. With a diagnosis now in hand and the freedom to learn at your own pace, you can begin to understand PD and 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 Real 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.
Inform Yourself about PD
You will need time to adjust to the new diagnosis, so educate yourself about PD — slowly. At Parkinson.org you can find suggestions for local support groups, doctors and video resources to help you and your loved ones cope and become informed. The Parkinson’s Foundation also provides educational publications through our free Helpline at 1-800-4PD-INFO (473-4636).
Page reviewed by Dr. Ryan Barmore, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.