Progressive supranuclear palsy is a rare condition that affects the brain. The condition is also called Steele-Richardson-Olszewski syndrome.
Progressive supranuclear palsy causes the brain cells that control movement and motor skills to deteriorate. As the condition progresses, problems with walking balance, walking, eye movement, and swallowing can occur.
There’s no cure for progressive supranuclear palsy, but treatment for the condition can help manage the symptoms.
It’s not clear what causes progressive supranuclear palsy, but researchers have found that people with supranuclear palsy have excess amounts of a protein called tau in their brains.
Clumps of excess tau cells are also found in people with conditions such as Alzheimer’s disease. Researchers aren’t sure what the link between this protein and brain cell deterioration is.
No other possible causes have been identified. There are some cases of progressive supranuclear palsy occurring more than once in the same family, but no genetic link has been found.
Most people who have progressive supranuclear palsy don’t have a family member with a condition.
The only known risk factor is age. People in their 60s and 70s are the most commonly diagnosed.
In the early stage of progressive supranuclear palsy, symptoms can be mild and easy to dismiss. People experiencing these symptoms might think that they’re simply experiencing stress or getting poor sleep.
However, these symptoms can be signs of progressive supranuclear palsy. It’s always best to see a medical professional if you’ve had any symptoms for more than a week or two.
Early symptoms of progressive supranuclear palsy include:
- a stiff neck
- general muscle stiffness
- decreased tolerance for bright lights
- blurry vision
- irritability or mood shifts
- impaired judgment or recklessness
- difficulty controlling eye motions
- difficulty keeping balance
- repeated falls (often falling backward)
- involuntary shaking of limbs, hands, or feet (tremors)
- slowed down or awkward movements
Symptoms usually increase over time. There’s currently no cure for progressive supranuclear palsy, but treatment can help you manage your symptoms and remain independent longer.
Progressive supranuclear palsy vs. Parkinson’s disease
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Disease progression is also different. Progressive supranuclear palsy progresses much faster than Parkinson’s disease. It’s also less responsive to medications, such as levodopa, than Parkinson’s.
Additionally, people with progressive supranuclear palsy often have problems with speech and swallowing much earlier in the disease process, and those symptoms tend to be significantly more severe.
Progressive supranuclear palsy has an early, mid, and late stage. Symptoms get worse as the stages advance and the disease progresses.
New symptoms in the mid-stage
In the mid-stage, symptoms from the early stage tend to get worse. New symptoms may also develop:
- slurred speech
- slowed speech
- reduced blinking leading to dry eyes
- difficulty sleeping
- eye twitching
- memory problems
- slowed thinking
- neck pain
- back pain
- joint pain
Symptoms in the late stage of progressive supranuclear palsy
In the late stage, difficulties with speech, swallowing, and thinking increase. This can make it difficult for the person with progressive supranuclear palsy to care for themselves. For instance, difficulty with swallowing often means a feeding tube is required.
Several treatments are available to help manage the symptoms and improve the quality of life for people with supranuclear palsy.
The exact treatment plan will depend on your symptoms, the severity, and on your response to treatment. Common treatments include:
- Parkinson’s disease medications: People with progressive supranuclear palsy are able to get some symptom relief from Parkison’s disease medications. However, this effect is limited and temporary. Most people are only about to take these medications for about 3 years.
- Specialty eyeglasses: Eyeglasses with bifocal or prism lenses can help people with supranuclear palsy who have less control over their eye muscles.
- Botox injections: Botox can help stop muscle spasms. It can be injected into the muscles around the eyes to help with vision and balance difficulties.
- Antidepressant medications: Antidepressant medications can help manage pain and mood symptoms.
- Physical therapy: Physical therapy can help improve muscle strength and balance.
- Occupational therapy: Occupational therapy can help you learn to use adaptive tools in your everyday life to make the symptoms of progressive supranuclear palsy easier to manage.
- Speech therapy: Speech therapy can help you improve communication and swallowing.
Are treatments for PSP covered by insurance or Medicare?
Many treatments for progressive supranuclear palsy are covered by insurance Medicare and other insurance plans. Medications, therapies, and injections for progressive supranuclear palsy that are considered medically necessary will be covered by most policies.
However, it’s always a good idea to check with your plan about coverage for specific medications and procedures. You may need to ask your doctor about a different prescription, or you may need to have a specific number of therapy sessions before medication can begin.
Progressive supranuclear palsy is a quickly progressing condition. Most people with the condition have severe symptoms within 3 to 5 years. Life expectancies can vary. It’s possible for people with progressive supranuclear palsy to live over a decade after initial diagnosis.
However, the average life expectancy is about 6 to 9 years after initial diagnosis. Factors such as stage at diagnosis influence life expectancy.
It’s important to note that research about supranuclear palsy is ongoing. Researchers are looking into developing medications that could slow down the progression of this condition and extend life expectancies.
If you’d like to get involved and help create better treatments for PSP, you can check out ClinicalTrials.gov to learn more about ongoing trials. Make sure to discuss any trial participation, especially one that would affect your medication regimen, with your doctor before applying.
Living with palsy
A diagnosis like progressive supranuclear palsy can be overwhelming. It’s important to have support, and there are some great resources you can turn to:
- CurePSP: The CurePSP community offers ways for people with progressive supranuclear palsy to find local support groups as well as online support.
- Progressive Supranuclear Palsy Facebook Group: You can connect with other people with progressive supranuclear palsy and find resources through The Progressive Supranuclear Palsy Facebook Group.
- SmartPatients: SmartPatients offers online support groups for people with a wide variety of conditions. You can join the Progressive Supranuclear Palsy Support group to chat with others who are managing the condition.
You can learn more about progressive supranuclear palsy by reading the answers to come common questions below.
Is progressive supranuclear palsy hereditary?
Progressive supranuclear palsy doesn’t appear to be hereditary. Although there are some families where multiple cases of progressive supranuclear palsy have been found, there isn’t any known genetic link. Researchers don’t believe the condition is hereditary.
How rare is progressive supranuclear palsy?
Progressive supranuclear palsy is very rare. However, some medical researchers believe the condition is underdiagnosed.
The condition is currently thought to affect 5 to 17 for every 100,000 people in the United States, but it’s possible that the actual incidence is higher.
How fast does progressive supranuclear palsy progress?
Progressive supranuclear palsy progresses very quickly. It often leads to death less than 10 years after the first symptoms appear.
Can you drive with PSP?
It’s important to talk with your doctor about your ability to drive with progressive supranuclear palsy. The condition progresses rapidly, and your motor skills can decrease quickly.
You might be able to drive in the early stage of the condition, but this could change with time. Talk with your doctor about your condition and driving.
Progressive supranuclear palsy is a rare condition that causes the deterioration of brain cells. As brain cells deteriorate, control of muscles and motor function decreases. Eventually, communication and swallowing become very difficult.
There’s no cure for progressive supranuclear palsy. Treatment can help manage symptoms and improve quality of life. The condition progresses quickly, with a standard life expectancy of less than a decade after the first symptoms appear.
Research into the condition is ongoing, and new treatments might increase life expectancy for people with progressive supranuclear palsy in the future.