Institute for Rehabilitation and Research

Stroke Resources

Stroke Support Groups

Support groups can be a helpful part of recovery as they provide support from others who have gone through the same type of experience.

UPMC South Side offers two support groups for stroke survivors. “The Hopeful Ones” is for older adult stroke survivors, usually retirement age or older. Meetings feature lunch and a guest speaker and are usually held on the last Thursday of each month.

The second group, “The Young Survivors,” is for younger stroke survivors, usually working age persons with interest, in returning to work, recreational opportunities, and other issues of younger stroke survivors. Meetings are held every other month, on the second Saturday of the month.

For more information on either support group or to be put on a mailing list,
please call 412-488-8986.

Resources for stroke survivors

ACCESS

  • Transportation for elderly and disabled persons in Allegheny County
  • 412-562-5353

Accessible PA

Area Agency on Aging

  • Offices are in every county in Pennsylvania; they can help stroke survivors older than 60 years old
  • www.aging.state.pa.us

Center for Assistive Technology

  • Wheelchair seating evaluations, driving training and evaluations, modification recommendations for the car and home, assistive technology suggestions for home or work
  • www.cat.pitt.edu

Centers for Rehab Services

  • Provides outpatient rehabilitation services through UPMC. Has more than 40 locations throughout western Pennsylvania.
  • http://crs.upmc.com

Community Life

Department of Public Welfare

  • Cash assistance, Medicaid, transportation to doctor or therapy appointments
  • Available throughout the region

Lifeline

  • Emergency call system
  • 1-800-752-1914

Life Pittsburgh

Long Term Care Helpline

  • Information on nursing homes, personal care homes, home care, Medicare and Medicaid, home modifications, financial assistance, and help with medication costs. Information for Pennsylvania
  • 1-866-286-3636
  • www.state.pa.us

Office of Vocational Rehabilitation

  • Pennsylvania state agency to help people with disabilities return to work or volunteer opportunities
  • Pittsburgh office: 412-392-4950

Partnership for Prescription Assistance

  • Prescription help for patients who don’t have insurance
  • 1-800-477-2669
  • www.pparx.org

Social Security Administration

  • Federal agency
  • Ticket to Work program allows a disabled worker to be employed without losing Social Security benefits
  • 1-800-772-1213
  • www.ssa.gov

Three Rivers Adaptive Sports

  • Has a variety of recreational activities for people with disabilities; activities include water and snow skiing, fishing, and bowling.
  • 412-848-8896

United Cerebral Palsy

  • Has community living and support services, a program for attendant care
  • 412-683-7100
  • www.ucp.org

Stroke resources for loved ones and families

Resources for more information may include the following:

  • community organizations
  • local colleges, churches, and senior centers
  • hospitals and nursing homes
  • adult day care centers
  • county social services offices
  • county public health agencies

Contact the following organizations to learn more about stroke and caregiving:

American Stroke Association

UPMC Stroke Institute

  • UPMC Presbyterian C400
    200 Lothrop St.
    Pittsburgh, PA 15213
    412-647-8080

National Family Caregivers Association

National Alliance for Caregiving

National Stroke Association

Health Hope Network

Children of Aging Parents (CAPS)

Information for Caregivers

Caregivers may be spouses, partners, children, brothers, sisters, and friends. They may provide care for only a few months, or for several years. Although being a caregiver may be a rewarding experience, it also can be frustrating and stressful.

Caregivers may have a variety of emotions and needs after their loved one has had a stroke. Those feelings may include a sense of isolation, a fear that the caregiver cannot provide adequate care, guilt, frustration, an intense sadness, and a fear of abandonment by family and friends. These feelings are all normal.

There are several key things to remember as a caregiver, primarily to take care of yourself and your needs.

Remember that caregiving is a choice that people can fall into unexpectedly. Take care of your life. Do not let your loved one’s recovery and rehabilitation always be the only focus.

Take care of your life. You deserve quality time to yourself. You deserve good health. Those two things may be the best gifts you can give to your loved one.

Caregiving is not a one-person job. Ask your family members and friends to help with respite care. Look for help, ask for help, and demand help if it is necessary. Accept help and suggest things for people to do. Likewise, be aware of what you are able to do and what you cannot do. Set realistic goals and priorities.

Educate yourself. Learn about new medical treatments and ideas.

Be aware of depression. Some signs of depression include a loss of energy, change in appetite, feelings of hopelessness or worthlessness, and a loss of enjoyment about things that were once pleasurable. Do not delay in getting help. It is possible to get a referral for a psychiatrist or to get antidepressant medication.