Diagnosis
Progressive supranuclear palsy can be hard to diagnose because symptoms are similar to those of Parkinson's disease. Your healthcare professional may suspect that you have progressive supranuclear palsy rather than Parkinson's disease if you:
- Don't have tremors.
- Are having a lot of unexplained falls.
- Have little, temporary or no response to Parkinson's medicines.
- Have trouble moving your eyes, particularly downward.
You may need an MRI to learn if you have shrinkage in specific regions of the brain associated with progressive supranuclear palsy. An MRI also can help exclude disorders that may mimic progressive supranuclear palsy, such as a stroke.
A positron emission tomography (PET) scan also may be recommended to check for early signs of changes in the brain that may not appear on an 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 medicines, which increase levels of a brain chemical involved in smooth, controlled muscle movements. The effectiveness of these medicines is limited and usually temporary, lasting about 2 to 3 years in most patients.
- OnabotulinumtoxinA (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.
- Antidepressants. Some antidepressant medicines may have a modest effect on symptoms such as impulsive behavior.
- Eyeglasses with bifocal or prism lenses, which may help ease problems with looking downward. Prism lenses allow people with progressive supranuclear palsy to see downward without moving their eyes down.
- Speech and swallowing evaluations, to help you learn other ways to communicate and safer swallowing techniques.
- Physical therapy and occupational therapy, to improve balance. Facial exercises, talking keyboards and gait and balance training also can help with many of the symptoms of progressive supranuclear palsy.
Researchers are working to develop treatments of progressive supranuclear palsy, including therapies that may block the formation of tau or help to destroy tau.
Lifestyle and home remedies
To minimize the effects of progressive supranuclear palsy, you can take certain steps at home:
- Use eye drops multiple times a day 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 prevent falling backward.
- Remove small area rugs or other items that are hard to see without looking downward.
- Don't climb stairs.
Coping and support
Living with any chronic illness can be challenging. Some people may feel angry, depressed or discouraged at times. Progressive supranuclear palsy can cause changes in your brain that make you feel anxious or laugh or cry for no reason. Progressive supranuclear palsy also can become frustrating as walking, talking and eating become harder.
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 healthcare professional or a counselor.
For caregivers
Caring for someone with progressive supranuclear palsy can be challenging physically and emotionally. It's not easy to juggle tasks as you try to adapt to the constantly changing 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 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 medicines, 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 healthcare professional.
- Ask a relative or friend to come with you to help you remember what the healthcare professional 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, don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Your healthcare professional is likely to ask you a number of questions. Being ready to answer them may allow more time to go over points you'd like to address. You may be asked:
- Have you experienced problems with balance or walking?
- Do you find it hard 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?