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Coping and support
By Mayo Clinic staffLiving with any chronic illness can be difficult, and it's normal to feel angry, depressed or discouraged at times. Progressive supranuclear palsy presents special problems because it can cause changes in your brain that make you feel anxious or laugh or cry for no reason. Progressive supranuclear palsy can also become extremely frustrating as walking, talking and even eating become more difficult.
The good news is that there are steps you can take to manage the stress of living with progressive supranuclear palsy. Consider these suggestions:
- Learn all you can about your illness. Find out how the disease progresses, your prognosis, and your treatment options and their side effects. The more you know, the more active you can be in your own care. In addition to talking to your health care team, look for books and information on the Internet, including the Web sites of various progressive supranuclear palsy organizations.
- Be proactive. Although you may often feel anxious or discouraged, don't let others — including your family and your doctors — make important decisions for you. Take an active role in your treatment.
- Maintain a strong support system. Strong relationships are crucial in dealing with chronic illnesses. Although friends and family can be your best allies, the understanding of people who know what you're going through can be especially helpful. Support groups aren't for everyone, but for many people, they can be a good resource for practical information. You may also find that you develop lasting bonds with people who are going through the same experiences as you. Support groups may also exist for the families of people with progressive supranuclear palsy. To learn about support groups in your community, talk to your doctor, a social worker or a local public health nurse.
- Maintain good communication with your partner and support system. It's extremely important to be open about your feelings, especially when it comes to living with progressive supranuclear palsy. The disease may affect your life and the lives of your loved ones in a number of ways. Mood and personality changes or inappropriate behavior, such as sudden bursts of laughing or crying, may make communication challenging. It's best if you can talk honestly about these changes. The amount of care a person with progressive supranuclear palsy needs also is often an issue. Because it may take you longer to do ordinary tasks, your partner or family might want to help. But you may want to remain as independent as possible. You'll need to let them know when you need help and when you don't.
Most important, try to talk frankly about your feelings and concerns. Repressed feelings can be harmful to your immediate well-being and long-term health. If necessary, discuss your problems with your doctor or counselor.
- NINDS progressive supranuclear palsy information page. National Institute of Neurological Disorders and Stroke. www.ninds.nih.gov/disorders/psp/psp_htm?css=print. Accessed Dec. 4, 2008.
- Progressive supranuclear palsy fact sheet. National Institute of Neurological Disorders and Stroke. www.ninds.nih.gov/disorders/psp/detail_psp.htm?css=print. Accessed Dec. 4, 2008.
- Karceski S. Progressive supranuclear palsy. Neurology. 2008;71:e70.
- Borroni B, et al. Tau forms in CSF as a reliable biomarker for progressive supranuclear palsy. Neurology. 2008;71:1796.
- PSP: Some answers. Society for Progressive Supranuclear Palsy. http://www.psp.org/doc_library/1217970611/Some%20Answers.pdf. Accessed Jan.18, 2009.
- Treatments for progressive supranuclear palsy. Worldwide Education and Awareness for Movement Disorders. http://www.wemove.org/psp/psp_tre.html. Accessed Dec. 4, 2008.
- Josephs KA, et al. Diagnostic accuracy of progressive supranuclear palsy in the Society for Progressive Supranuclear Palsy brain bank. Movement Disorders. 2003;18:1018.
- Josephs, KA. (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 21, 2009.
