How do I take care of myself if I have progressive supranuclear palsy (PSP)?

Take as many precautions as you can to keep yourself safe. Put railings in your hallways and bathtub to help when you lose your balance. Use a weighted walker or a wheelchair. Consider getting rid of objects that are on the floor or near it such as rugs and short coffee tables. It is likely you’ll trip over these objects because, as your symptoms worsen, you’ll be unable to look down without prism glasses.

Also, purchase shoes with smooth soles instead of rubber soles. If you’re unable to lift your foot when you start to walk, you might fall forward. Smooth soles make it easier for the foot to slide forward. You can also wear bifocals or prism glasses to help with looking down. Follow any other instructions your healthcare provider gives you.

How do I cope with the emotional burden of progressive supranuclear palsy (PSP)?

Coping with diseases like PSP is very difficult, and mental health disorders like clinical depression often happen alongside them. Depression is a common symptom of PSP. A psychiatrist can help by prescribing medications and a therapist can help with counseling.

How can my friends and family help if I have progressive supranuclear palsy (PSP)?

Tell your friends and family about your symptoms. Let them know what you can and can’t do. Help them understand that changes in your personality, eye contact and mood are part of the illness. It’s also important to explain to them that the severity of your symptoms can come and go. One hour, you may be walking, eating and writing just fine, and the next hour you might barely be able to do those things at all.

If you’re a caregiver for someone with PSP, be sure to take care of yourself, too!

When should I see my healthcare provider about progressive supranuclear palsy (PSP)?

It’s wise to see a healthcare provider as soon as possible if you have symptoms of PSP. Be alert for the first signs like trouble walking and unexplained falls. Don’t just dismiss the symptoms as signs of aging.

What questions should I ask my healthcare provider about progressive supranuclear palsy?

  • What exercises are safe to do?
  • Are there any vitamins I should take?
  • How can my friends and family support me?
  • Can you refer me to a psychiatrist to help with medications for clinical depression?
  • Can you refer me to a therapist for counseling?
  • Do you think I will need to have a gastrostomy?
  • Is there a speech-language therapist I should see?
  • Should I see an ophthalmologist to help with my eyesight?
  • Where can I get a weighted walker to help me get around?
  • Can I continue to go to work/school?

A note from Cleveland Clinic

Progressive supranuclear palsy is a serious disorder that can negatively affect you in many ways and shorten your lifespan. It’s a rare brain disease that affects your walking, balance, eyesight, thinking, emotions and more. Keep a close eye on your symptoms and report them. Don’t hesitate to stay in contact with your healthcare providers. See your specialists, go to therapy, take prescribed medications and do everything you can to improve your quality of life!

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