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Progressive Supranuclear Palsy

What is progressive supranuclear palsy (PSP)?

Progressive supranuclear palsy (PSP) is a rare brain disease. It happens because of damage to nerve cells in the brain. PSP affects your movement, including control of your walking and balance. It also affects your thinking and eye movement.

PSP is progressive, which means that it gets worse over time.

What causes progressive supranuclear palsy (PSP)?

The cause of PSP is unknown. In rare cases, the cause is a mutation in a certain gene.

One sign of PSP is abnormal clumps of tau in nerve cells in the brain. Tau is a protein in your nervous system, including in nerve cells. Some other diseases also cause a buildup of tau in the brain, including Alzheimer's disease.

Who is at risk for progressive supranuclear palsy (PSP)?

PSP usually affects people over 60, but in some cases it can start earlier. It is more common in men.

What are the symptoms of progressive supranuclear palsy (PSP)?

Symptoms are very different in each person, but they may include:

  • A loss of balance while walking. This is often the first symptom.
  • Speech problems
  • Trouble swallowing
  • A blurring of vision and problems controlling eye movement
  • Changes in mood and behavior, including depression and apathy (a loss of interest and enthusiasm)
  • Mild dementia
How is progressive supranuclear palsy (PSP0 diagnosed?

There is no specific test for PSP. It can be difficult to diagnose, because the symptoms are similar to other diseases such as Parkinson's disease and Alzheimer's disease.

To make a diagnosis, your health care provider will take your medical history and do physical and neurological exams. You may have an MRI or other imaging tests.

What are the treatments for progressive supranuclear palsy (PSP)?

There is currently no effective treatment for PSP. Medicines may reduce some symptoms. Some non-drug treatments, such as walking aids and special glasses, may also help. People with severe swallowing problems may need gastrostomy. This is a surgery to insert a feeding tube into the stomach.

PSP gets worse over time. Many people become severely disabled within three to five years after getting it. PSP isn't life-threatening on its own. It can still be be dangerous, because it increases your risk of pneumonia, choking from swallowing problems, and injuries from falling. But with good attention to medical and nutritional needs, many people with PSP can live 10 or more years after the first symptoms of the disease.

NIH: National Institute of Neurological Disorders and Stroke

Assisted Living

Assisted living is housing and services for people who need some help with daily care. They may need help with things like dressing, bathing, taking their medicines, and cleaning. But they do not need the medical care that a nursing home provides. Assisted living allows the residents to live more independently.

Assisted living facilities sometimes have other names, such as adult care facilities or residential care facilities. They vary in size, with as few as 25 residents up to 120 residents or more. The residents usually live in their own apartments or rooms and share common areas.

The facilities usually offer a few different levels of care. Residents pay more for the higher levels of care. The types of services they offer may be different from state to state. The services may include:

  • Up to three meals a day
  • Assistance with personal care, such as bathing, dressing, eating, getting in and out of bed or chairs, moving around, and using the bathroom
  • Help with medicines
  • Housekeeping
  • Laundry
  • 24-hour supervision, security, and on-site staff
  • Social and recreational activities
  • Transportation

The residents are usually older adults, including those with Alzheimer's or other types of dementia. But in some cases, residents may be younger and have mental illnesses, developmental disabilities, or certain medical conditions.

NIH: National Institute on Aging

Bereavement

Bereavement is the period of grief and mourning after a death. When you grieve, it's part of the normal process of reacting to a loss. You may experience grief as a mental, physical, social or emotional reaction. Mental reactions can include anger, guilt, anxiety, sadness and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems or illness.

How long bereavement lasts can depend on how close you were to the person who died, if the person's death was expected and other factors. Friends, family and faith may be sources of support. Grief counseling or grief therapy is also helpful to some people.

NIH: National Cancer Institute

Brain Diseases

Your brain is the control center of your body. It controls your thoughts, memory, speech, and movement. It regulates the function of many organs. It's part of your nervous system, which also includes your spinal cord and peripheral nerves. The nervous system sends signals between your brain and the rest of the body. Your nerves take in information from your senses and send it to the brain to be processed. Your brain and nerves also communicate to help you move and to control your body's functions.

When the brain is healthy, it works quickly and automatically. But when you have a brain disease, it may affect how well you can function and do your daily activities. Some common brain diseases include:

  • Brain tumors, which can press on nerves and affect brain function.
  • Degenerative nerve diseases, which can affect many of your body's activities, such as balance, movement, talking, breathing, and heart function. Types include Alzheimer's disease and Parkinson's disease.
  • Encephalitis (inflammation in the brain), which can lead to problems such as vision loss, weakness, and paralysis.
  • Genetic brain disorders, which are caused by changes in genes (also called variants or mutations). These disorders can affect the development and function of the brain.
  • Strokes, which can cause a loss of brain cells and can affect your ability to think clearly.
  • Traumatic brain injuries (TBIs), which can affect brain function. They may range from mild to severe. The effects of a TBI may be temporary or permanent.

The symptoms of brain diseases vary widely, depending on the specific problem. In some cases, damage is permanent. In other cases, treatments such as surgery, medicines, or therapies such as physical, occupational, and speech therapies, may cure the disease or improve the symptoms.

Caregivers

A caregiver gives care to someone who needs help taking care of themselves. The person who needs help may be a child, an adult, or an older adult. They may need help because of an injury or disability. Or they may have a chronic illness such as Alzheimer's disease or cancer.

Some caregivers are informal caregivers. They are usually family members or friends. Other caregivers are paid professionals. Caregivers may give care at home or in a hospital or other health care setting. Sometimes they are caregiving from a distance. The types of tasks that caregivers do may include:

  • Helping with daily tasks like bathing, eating, or taking medicine
  • Doing housework and cooking
  • Running errands such as shopping for food and clothes
  • Driving the person to appointments
  • Providing company and emotional support
  • Arranging activities and medical care
  • Making health and financial decisions

Caregiving can be rewarding. It may help to strengthen connections to a loved one. You may feel fulfillment from helping someone else. But caregiving may also be stressful and sometimes even overwhelming. You may be "on call" for 24 hours a day. You may also be working outside the home and taking care of children. So you need to make sure that you are not ignoring your own needs. You have to take care of your own physical and mental health as well. Because when you feel better, you can take better care of your loved one. It will also be easier to focus on the rewards of caregiving.

Dept. of Health and Human Services Office on Women's Health