Diagnosis

Progressive supranuclear palsy can be difficult to diagnose because signs and symptoms are similar to those of Parkinson's disease. Indications that you have progressive supranuclear palsy rather than Parkinson's disease include:

  • A lack of shaking (tremors)
  • A poor response to Parkinson's medications
  • Difficulty moving your eyes, particularly downward

Your doctor may recommend MRI to determine if you have shrinkage in specific regions of the brain associated with progressive supranuclear palsy. MRI can also help to exclude disorders that may mimic progressive supranuclear palsy, such as stroke.

A positron emission tomography (PET) scan also may be recommended to check for early signs of brain abnormalities that may not appear on MRI.

Treatment

Although there is no cure for progressive supranuclear palsy, treatments are available to help ease symptoms of the disorder. The options include:

  • Parkinson's disease medications, which increase levels of a brain chemical involved in smooth, controlled muscle movements (dopamine). The effectiveness of these medications is limited and usually temporary, lasting about two to three years.
  • Onabotulinumtoxin type A (Botox), which may be injected in small doses into the muscles around your eyes. Botox blocks the chemical signals that cause muscles to contract, which can improve eyelid spasms.
  • Eyeglasses with bifocal or prism lenses, which may help ease problems with looking downward.
  • Speech and swallowing evaluations, to help you learn safer swallowing techniques.
  • Physical therapy and occupational therapy, to improve balance.

Researchers are working to develop medication to treat progressive supranuclear palsy, including therapies that may block the formation of tau.

Lifestyle and home remedies

To minimize the effects of progressive supranuclear palsy, you can take certain steps at home:

  • Use eyedrops to help ease dry eyes that can occur as a result of problems with blinking or persistent tearing.
  • Install grab bars in hallways and bathrooms, to help you avoid falls.
  • Use a walker that is weighted, to help you avoid falls.
  • Remove scatter rugs or other items that are hard to see without looking downward.
  • Avoid climbing stairs.

Coping and support

Living 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 eating become more difficult.

To manage the stress of living with progressive supranuclear palsy, consider these suggestions:

  • Maintain a strong support system of friends and family
  • Contact a support group, for yourself or for family members
  • Discuss your feelings and concerns about living with progressive supranuclear palsy with your doctor or a counselor

For caregivers

Caring for someone with progressive supranuclear palsy can be difficult physically and emotionally. It's not easy to juggle tasks as you try to adapt to the constantly fluctuating moods and physical needs that accompany this condition. Remember that these moods and physical capabilities may change from hour to hour and are not under the person's conscious control.

Preparing for your appointment

You may be referred to a doctor who specializes in disorders of the brain and nervous system (neurologist).

What you can do

  • Write down your symptoms, including any that may seem unrelated to the reason why you scheduled the appointment.
  • Make a list of all your medications, vitamins and supplements.
  • Write down your key medical information, including other conditions.
  • Write down key personal information, including any recent changes or stressors in your life.
  • Write down questions to ask your doctor.
  • Ask a relative or friend to accompany you, to help you remember what the doctor says.

Questions to ask your doctor

  • What's the most likely cause of my symptoms?
  • What kinds of tests do I need?
  • How does progressive supranuclear palsy usually progress?
  • What treatments are available, and what types of side effects can I expect?
  • I have other health conditions. How can I best manage these conditions together?
  • Should I restrict my activities?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions during your appointment.

What to expect from your doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may make time to go over points you want to spend more time on. You may be asked:

  • Have you experienced problems with balance or walking?
  • Do you find it difficult to see items below you, such as the plate when you are eating?
  • Do you have trouble speaking or swallowing?
  • Have your movements felt stiff or shaky?
  • Have you experienced any troubling mood changes?
  • When did you begin experiencing these symptoms? Have they been continuous or occasional?
  • Does anything seem to improve or worsen these symptoms?