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Support Groups and Counseling

PSP is a difficult disease for you and those who care for you. It can be particularly stressful for family caregivers. The condition affects every aspect of life, including family relationships, work, financial status, social life, and physical and mental health. If you are a family caregiver for a person with PSP, you may feel overwhelmed, depressed, frustrated, angry, or resentful. These feelings may in turn leave you feeling guilty, ashamed, and anxious.

While understandable, these feelings do not help the situation and usually make it worse. This is why support groups were invented. Support groups are groups of people who have lived through the same difficult experiences and want to help themselves and others by sharing coping strategies. Support groups serve a number of different purposes for a person living with the stress of being a caregiver for a person with PSP.

• The group allows the person to express his or her true feelings in an accepting, nonjudgmental atmosphere.
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• The group’s shared experiences allow the caregiver to feel less alone and isolated.
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• The group can offer fresh ideas for coping with specific problems.
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• The group can introduce the caregiver to resources that may be able to provide some relief.
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• The group can give the caregiver the strength he or she needs to ask for help.

Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the organizations listed below. You can also ask your health care provider or behavior therapist, or go on the Internet. If you do not have access to the Internet, go to the public library.

For more information about support groups, contact the following agencies:

• Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106
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• Society for Progressive Supranuclear Palsy, Inc - (800) 457-4777
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• Eldercare Locator Service - (800) 677-1116