Progressive Supranuclear Palsy: Understanding This Rare Condition

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:

• fatigue
• 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

It’s common for progressive supranuclear palsy to be diagnosed as Parkinson’s disease. The two conditions share similar symptoms, especially in the early stage of supranuclear palsy. However, there are some significant differences.

For instance, although researchers have found an excess protein buildup might be linked to both conditions, the protein tau is linked to PSP while the protein alpha-synuclein is linked to Parkinson’s.

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.

Was this helpful?

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
• headaches
• 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.

• speech that is hard for others to understand
• difficulty thinking
• difficulty concentrating
• increased memory problems
• loss of throat muscle control
• difficulty swallowing
• constipation
• difficulty passing urine

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.

Was this helpful?

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.

Progressive Supranuclear Palsy: Understanding This Rare Condition

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:

• fatigue
• 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

It’s common for progressive supranuclear palsy to be diagnosed as Parkinson’s disease. The two conditions share similar symptoms, especially in the early stage of supranuclear palsy. However, there are some significant differences.

For instance, although researchers have found an excess protein buildup might be linked to both conditions, the protein tau is linked to PSP while the protein alpha-synuclein is linked to Parkinson’s.

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.

Was this helpful?

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
• headaches
• 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.

• speech that is hard for others to understand
• difficulty thinking
• difficulty concentrating
• increased memory problems
• loss of throat muscle control
• difficulty swallowing
• constipation
• difficulty passing urine

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.

Was this helpful?

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.

Progressive supranuclear palsy – signs, symptoms, who treats

Progressive supranuclear palsy – signs, symptoms, who treats

What should be done to diagnose progressive supranuclear palsy? To solve this problem, the first step for the patient is to make an appointment with a neurologist. After the initial examination, the doctor may prescribe additional tests:

• Brain MRI
• blood test
• tests of memory, concentration and ability to understand language.

Progressive supranuclear palsy (Steele-Richardson-Olszewski syndrome) is a rare, progressive condition that can cause problems with balance, movement, vision, speech, and swallowing. Most cases of PSP develop in people over 60 years of age. This pathology occurs when brain cells are damaged as a result of the accumulation of the tau protein. Tau is usually broken down before it reaches high concentrations, but in patients with advanced supranuclear palsy, this protein is not broken down properly, resulting in excessive protein aggregations in the brain cells. The condition is thought to be due to changes in genes, but these genetic defects are not inherited and the risk to other family members, including children or siblings, is very low.

Symptoms of progressive supranuclear palsy

The number of abnormal tau foci in the brain can vary in location, which means that this disease can have a wide range of symptoms that usually get progressively worse over time. Initial symptoms may be similar to some other conditions, making early diagnosis difficult:

• balance and mobility problems, including frequent falls
• behavioral changes such as irritability or apathy
• muscle stiffness
• inability to control eye and eyelid movement, including focusing on certain objects or looking up or down at something
• slow, soft or slurred speech
• difficulty swallowing (dysphagia)
• slowness of thinking and some problems with memory.

How a doctor diagnoses progressive supranuclear palsy

There is no single test to detect Steele-Richardson-Olszewski syndrome. At the initial stage of diagnosis, the neurologist will try to rule out other conditions that can cause similar symptoms, such as Parkinson’s disease. The variability in possible symptoms of PSP also makes correct diagnosis difficult and may mean that a definitive diagnosis takes time and a comprehensive examination:

• Brain MRI
• blood test
• tests of memory, concentration and ability to understand language.

How a Doctor Treats Steele-Richardson-Olszewski Syndrome

There is currently no cure for PSP, but research continues into new treatments to relieve symptoms and prevent the condition from getting worse. Treatment will be tailored to each person’s needs:

• medications to improve balance, stiffness and other symptoms physiotherapy to help with movement and balance problems
• speech and language therapy to help with speech or swallowing problems
• occupational therapy to improve skills needed for daily activities
• Botox (botulinum toxin injections) or special glasses for eye problems feeding tube to help manage dysphagia and avoid malnutrition or dehydration.

Treatment prospects

At present, doctors cannot stop the gradual deterioration of Steele-Richardson-Olszewski syndrome, although research into new treatments gives hope that this may be possible in the future. Good care and assistance can help the sufferer become more independent and enjoy a better quality of life, but this condition will ultimately put them at risk for serious complications. Difficulty swallowing can cause choking or inhalation of food or liquid into the airways, which can lead to pneumonia. As a result of these complications, the average life expectancy of a patient with PSP is about 6 or 7 years from the onset of symptoms.

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Scientific sources:

1. A.M. Vein, V.N. Parkinsonism // Riga: Zinatne, 1981.-362 p.
2. Illarioshkin S.N., Ivanova-Smolenskaya I.A., Markova E.D. DNA diagnostics and medical genetic counseling in neurology // M.: Mia, 2002. 272 ​​p.
3. Pchelina S.N., Yakimovsky A.F., Shvarts E.I. Hereditary basis of Parkinson’s disease // Medical genetics. 2003. – V.2. – No. 9. -p.411-425.
4. Shtok V.N., Fedorova N.V. Treatment of parkinsonism // M.: “Medicine”, 1997.- 196 p.
5. Turkin A.M. MRI in the diagnosis of brain tumors. Diss. candidate of medical sciences – M., 1990.-158 p.

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▷ What is the life expectancy of someone with Progressive Supranuclear Palsy?

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Life expectancy of people with Progressive Supranuclear Palsy and recent research Progressive Supranuclear Palsy

Translated from Spanish
Improved translation

Life expectancy for people with progressive Supranuclear Palsy is similar to that of the general population in most cases, particularly if regular visits to the doctor are observed to detect new symptoms or complications and change treatment if necessary. Progressive supranuclear palsy is a disease that can leave the patient vulnerable to a series of life-threatening complications, so it is important to follow the recommendations and treatment to have a longer life expectancy. In addition, people with progressive Supranuclear Palsy usually need help to walk (like cane walking) for three or four years after the first symptoms of the disease. With good care and attention to medical, nutritional and safety needs, a person with progressive Supranuclear Palsy can live for many years.

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Translated from English
Translation improvement

The average life expectancy of a PSP patient is seven years from the start, but my mother lived 9from the beginning, 4 from the moment she was diagnosed. However, the last years have been spent in a wheelchair or on a bed. Complications and risks are from falling and aspiration of the lungs from difficulty in swallowing food and suffocation.

I read every day about new research and new drugs being tested and believe there is now a lot more awareness about this disease. It seems new drugs being tested for Parkinson’s and Alzheimer’s may have a positive effect on PSP symptoms. I’m sure there will soon be something to improve the quality of life for those with a PSP.

Posted 12 Aug. 2017 KEM Diana Sanders 2000

Translated from Spanish
Translation improvement

There is always hope that you should be careful with falling mainly pneumonia and with food, so do not drown

Posted 08 Nov. 2017 CEM Monica 720

Translated from Spanish
Translation improvement

This disease is poorly known, the diagnosis has more than 2 years to detect it, patients die between 7 s 10 years

Posted 08 Nov. 2017 KEM Maria Veronica Ortiz Solís 2000

Translated from Spanish
Translation improvement

Unfortunately, what is the same life expectancy that the general population does not according to most views

Posted 12 Nov. 2017 whom Roberto 200

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