Materiały źródłowe

• #1 Progressive supranuclear palsy: nursing care implications – PubMed

  https://pubmed.ncbi.nlm.nih.gov/2976788/

  Progressive supranuclear palsy (PSP) is an uncommon, but debilitating, neurological disease. Characterized by paralysis of eye movements, difficulty talking and swallowing, body trunk rigidity, gait ataxia, and dementia, the disease progresses rapidly over a 6-8 year time span. Death usually occurs from aspiration pneumonia. To provide meaningful care for the PSP patient and his/her family, the neuroscience nurse must first understand the disease pathophysiology, then the appropriate care interventions.

• #2

  https://journals.lww.com/jnnonline/abstract/1988/10000/progressive_supranuclear_palsy__nursing_care.6.aspx

  Progressive supranuclear palsy (PSP) is an uncommon, but debilitating, neurological disease. Characterized by paralysis of eye movements, difficulty talking and swallowing, body trunk rigidity, gait ataxia, and dementia, the disease progresses rapidly over a 68 year time span. Death usually occurs from aspiration pneumonia. To provide meaningful care for the PSP patient and his/her family, the neuroscience nurse must first understand the disease pathophysiology, then the appropriate care interventions.

• #3

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #4

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/

  Progressive supranuclear palsy (PSP) is a rare neurological condition that can cause problems with balance, movement, vision, speech and swallowing. […] Treatment currently focuses on relieving the symptoms while trying to make sure someone with PSP has the best possible quality of life. […] As someone with PSP can be affected in many different ways, treatment and care is provided by a team of health and social care professionals working together. […] Good care and assistance can help someone with PSP to be more independent and enjoy a better quality of life, but the condition will eventually put them at risk of serious complications. […] Help from a speech and language therapist at an early stage can lower this risk for as long as possible.

• #5 SSA – POMS: DI 23022.650 – Progressive Supranuclear Palsy – 08/28/2020

  https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022650

  Progressive supranuclear palsy (PSP) is a rare progressive brain disorder that affects movement, gait, eye movements, speech, and cognition. […] Additional features of the disorder includes a general loss of interest and enthusiasm (apathy) an increasing need for assistance with personal care and other activities of daily living. […] In advance cases, the person with PSP may become wheel chair dependent or bedridden. Individuals with PSP are also at risk of pneumonia, choking from swallowing problems and injuries from falling. […] Speech therapy can provide instruction in swallowing techniques. Communication devices such as pointing boards or computer-based systems can be used when speech becomes ineffective. Walking devices can help to minimize falls.

• #6

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #7

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #8

  https://pspawareness.com/blogs/psp-q-a/the-integral-psp-care-team-understanding-their-roles-in-managing-progressive-supranuclear-palsy?srsltid=AfmBOopDaQlthu6XkNDMyRSCLCcSjFV7OC3z-27CS4YZ3ToR1JHPZwSO

  Managing Progressive Supranuclear Palsy (PSP) involves a multidisciplinary team to address the broad range of symptoms and challenges the patient may face. The care team often includes: 1. Neurologist: Typically leads the care team. They diagnose, manage the treatment plan, and monitor the progression of the disease. […] 12. Nurse/Nurse Practitioner: Provides general care, monitors the patient’s condition, and educates the patient and family about the disease and its management. They often serve as a critical link between the patient and the rest of the care team. Remember, communication among all members of the healthcare team is crucial for coordinating care and providing the best possible support for the individual with PSP.

• #9

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #10

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #11

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #12

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #13

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #14

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  There’s currently no cure for progressive supranuclear palsy (PSP), but there are lots of things that can be done to help manage the symptoms. […] As PSP can affect many different areas of your health, you’ll be cared for by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT). […] Members of your MDT may include: a neurologist (a specialist in conditions that affect the brain and nerves), a physiotherapist (who can help with movement and balance difficulties), a speech and language therapist (who can help with speech or swallowing problems), an occupational therapist (who can help you improve the skills you need for daily activities, such as washing or dressing), a social worker (who can advise you about the support available from social services), an ophthalmologist or orthoptist (specialists in treating eye conditions), a specialist neurology nurse (who may act as your point of contact with the rest of the team).

• #15 Progressive Supranuclear Palsy (PSP) – Brain Foundation

  https://brainfoundation.org.au/disorders/progressive-supranuclear-palsy/

  Physiotherapy is extremely important to maintain physical strength as long as possible and minimise falls risk. […] A dietician can be very important in ensuring people with PSP have adequate nutrition. […] Caregivers can improve the safety of the person with PSP by keeping pathways in the home clear of objects such as toys, floor rugs, or low furniture that are difficult to see without looking down. […] PSP gets progressively worse but is not itself directly life-threatening. It does, however, predispose patients to serious complications such as pneumonia secondary to difficulty in swallowing. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #16

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  Building a support team is foundational to the quality of life for the person diagnosed and their loved ones. Your support team may consist of your family, friends, support group, religious community, healthcare team and anyone else who cares about you. […] Professionals that can help with symptom management, care planning and education may include: A general neurologist, or ideally a movement disorder specialist, Primary care provider (PCP), Nurse (NP, RN, CRN), Physical therapist (PT), Occupational therapist (OT), Speech-language pathologist (SLP), Clinical social worker (SW), Nutritionist/Dietician, Pharmacist, Psychiatrist, psychologist or neuropsychologist, Ophthalmologist. […] There are many options to help people with PSP get the care they need. People find huge benefits to hiring help to provide in-home care, utilizing community-based services such as adult day centers and choosing between many types of long-term care facilities. These services can provide additional layers of support, including companionship or hands-on help for the person with PSP and assistance and respite for the family.

• #17

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  Building a support team is foundational to the quality of life for the person diagnosed and their loved ones. Your support team may consist of your family, friends, support group, religious community, healthcare team and anyone else who cares about you. […] Professionals that can help with symptom management, care planning and education may include: A general neurologist, or ideally a movement disorder specialist, Primary care provider (PCP), Nurse (NP, RN, CRN), Physical therapist (PT), Occupational therapist (OT), Speech-language pathologist (SLP), Clinical social worker (SW), Nutritionist/Dietician, Pharmacist, Psychiatrist, psychologist or neuropsychologist, Ophthalmologist. […] There are many options to help people with PSP get the care they need. People find huge benefits to hiring help to provide in-home care, utilizing community-based services such as adult day centers and choosing between many types of long-term care facilities. These services can provide additional layers of support, including companionship or hands-on help for the person with PSP and assistance and respite for the family.

• #18

  https://pspawareness.com/blogs/psp-q-a/the-integral-psp-care-team-understanding-their-roles-in-managing-progressive-supranuclear-palsy?srsltid=AfmBOopDaQlthu6XkNDMyRSCLCcSjFV7OC3z-27CS4YZ3ToR1JHPZwSO

  Managing Progressive Supranuclear Palsy (PSP) involves a multidisciplinary team to address the broad range of symptoms and challenges the patient may face. The care team often includes: 1. Neurologist: Typically leads the care team. They diagnose, manage the treatment plan, and monitor the progression of the disease. […] 12. Nurse/Nurse Practitioner: Provides general care, monitors the patient’s condition, and educates the patient and family about the disease and its management. They often serve as a critical link between the patient and the rest of the care team. Remember, communication among all members of the healthcare team is crucial for coordinating care and providing the best possible support for the individual with PSP.

• #19 Progressive Supranuclear Palsy | AFTD

  https://www.theaftd.org/what-is-ftd/progressive-supranuclear-palsy/

  There is currently no effective treatment for PSP. In some patients, the slowness, stiffness, and balance problems of PSP may respond to anti-parkinsonian agents such as levodopa, or levodopa combined with anticholinergic agents, but the effect is usually temporary. […] Management of PSP symptoms can take many forms. Patients frequently use weighted walking aids to counteract their tendency to fall backward. […] Although formal physical therapy is of no proven benefit in PSP, exercises can be done to keep the joints limber. Prevention of injuries related to recurrent falls is a major focus of physical therapy. […] PSP predisposes those affected to serious complications such as pneumonia followed from difficulty in swallowing (dysphagia). […] A surgical procedure involving a gastrostomy tube may be done when there are significant and severe swallowing disturbances. This surgery involves the placement of a tube through the skin of the abdomen into the stomach for feeding purposes. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #20 Progressive Supranuclear Palsy

  https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/psp.html

  Speech therapists evaluate the swallowing function (modified barium swallow study) and make sure to prevent choking in the future by teaching specific techniques like head posturing and modifying diet. In addition, speech therapy can also improve voice projection. […] Working with an occupational therapist is essential to promote and extend independence. Eating and reading both can be improved in patients with severe limitation of eye movement by using special glasses called prisms to remedy the difficulty of looking down. […] Several drugs have been studied for the treatment of the motor aspects of the PSP. Unlike Parkinson’s disease, treating PSP patients with levodopa usually has no significant benefits, however, if there is parkinsonism, it is important to administer it for at least a month at high doses to be sure of the response. […] These can effectively be used to treat various forms of focal dystonia and eyelid drop. These injections may help to decrease the disability and improve quality of life; however there is always the risk of side effects.

• #21

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #22 Progressive supranuclear palsy | Nursing Times

  https://www.nursingtimes.net/neurology/progressive-supranuclear-palsy-21-02-2006/

  – At present there is no cure for PSP although certain symptoms can be managed. […] – Motor difficulties may respond to medications such as levodopa, on its own or in combination with anticholinergics. […] – Antidepressants such as fluoxetine and amitriptyline can help with mood disturbances. […] – Patients may also use walking aids because of their tendency to fall backwards. Bifocals or special glasses called prisms are sometimes prescribed for PSP patients to remedy the difficulty of looking down. […] – Gastrostomy is used where swallowing difficulties interfere with nutrition. […] – The speech, vision, and swallowing difficulties do not usually respond to any drug treatment.

• #23

  https://www.brain.northwestern.edu/dementia/psps/treatment.html

  There are a number of non-pharmacologic ways to support those with Progressive Supranuclear Palsy Syndrome (PSPS). Speech therapy can improve swallowing, language and communication. Occupational therapy can help provide strategies and techniques to compensate for the cognitive and motor changes associated with PSPS. Physical therapy can also improve aspects of motor function. […] Though there is no cure for progressive supranuclear palsy syndrome (PSPS), some medications can be prescribed with the goal of symptom reduction. Levodopa (Sinemet) can be trialed to address the motor symptoms of PSPS. Unfortunately, the response to levodopa is usually very limited. […] Medications can be prescribed to address mood and anxiety symptoms associated with PSPS. These medications can provide relief for affected individuals and their caregivers. Antidepressants can be given to treat depression, anxiety, or irritability. Low doses of antipsychotics may also be considered to help address delusional thinking or aggression.

• #24 Progressive Supranuclear Palsy

  https://www.uspharmacist.com/article/progressive-supranuclear-palsy

  Disability develops in PSP patients within 3 to 5 years of diagnosis; death usually occurs within 10 years of symptom onset, often secondary to infection (e.g., pneumonia) or other complications of immobility.2,6,7 Advance directives, such as a living will or durable power of attorney (see Reference 8), should be prepared by patients diagnosed with PSP so that they have the opportunity to indicate the type of medical treatment they wish to receive as part of their end-of-life care plan.6,8 […] Treatment is supportive and far less effective than that for Parkinson’s disease.2 The treatment of PSP remains unsatisfactory, since only occasionally do levodopa, dopamine agonists, amantadine, or amitriptyline partially relieve rigidity.1,2 It is presumed that the reason PSP is not responsive to dopamine replacement or dopamine agonist therapies is that dopamine receptors are decreased as a result of postsynaptic damage beyond pathological changes seen in PD.12 Symptomatic treatment with drugs and other therapies should be targeted at reducing morbidity and improving quality of life (e.g., depression can be treated with selective serotonin reuptake inhibitors).5,7 Pharmacists should note that prior to initiating any treatment, the overall benefit-to-risk ratio to the individual patient must be considered.

• #25 Progressive Supranuclear Palsy

  https://www.uspharmacist.com/article/progressive-supranuclear-palsy

  Disability develops in PSP patients within 3 to 5 years of diagnosis; death usually occurs within 10 years of symptom onset, often secondary to infection (e.g., pneumonia) or other complications of immobility.2,6,7 Advance directives, such as a living will or durable power of attorney (see Reference 8), should be prepared by patients diagnosed with PSP so that they have the opportunity to indicate the type of medical treatment they wish to receive as part of their end-of-life care plan.6,8 […] Treatment is supportive and far less effective than that for Parkinson’s disease.2 The treatment of PSP remains unsatisfactory, since only occasionally do levodopa, dopamine agonists, amantadine, or amitriptyline partially relieve rigidity.1,2 It is presumed that the reason PSP is not responsive to dopamine replacement or dopamine agonist therapies is that dopamine receptors are decreased as a result of postsynaptic damage beyond pathological changes seen in PD.12 Symptomatic treatment with drugs and other therapies should be targeted at reducing morbidity and improving quality of life (e.g., depression can be treated with selective serotonin reuptake inhibitors).5,7 Pharmacists should note that prior to initiating any treatment, the overall benefit-to-risk ratio to the individual patient must be considered.

• #26 Progressive Supranuclear Palsy (PSP) – Brain Foundation

  https://brainfoundation.org.au/disorders/progressive-supranuclear-palsy/

  Physiotherapy is extremely important to maintain physical strength as long as possible and minimise falls risk. […] A dietician can be very important in ensuring people with PSP have adequate nutrition. […] Caregivers can improve the safety of the person with PSP by keeping pathways in the home clear of objects such as toys, floor rugs, or low furniture that are difficult to see without looking down. […] PSP gets progressively worse but is not itself directly life-threatening. It does, however, predispose patients to serious complications such as pneumonia secondary to difficulty in swallowing. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #27

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  A physical therapist (PT) helps people with movement symptoms. This is done through exercises during appointments that help strengthen or correct movements that are important for balance and coordination and continuing them at home. […] An occupational therapist (OT) helps people continue doing tasks and activities that prolong independence and help maintain joy and meaning in their lives. […] A speech-language pathologist (SLP) works with people who are having issues with speech, swallowing and language. Their goals are to improve and prolong communication skills, assess and help adapt to swallowing changes. […] A feeding tube can be a safe and helpful option for people with PSP who are experiencing difficulties with swallowing. A feeding tube can be considered when someone is no longer able to take in necessary amounts of nutrition and calories by eating or drinking. They can prevent unnecessary weight loss and decrease risk of breathing in food or drink, known as aspiration.

• #28

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #29

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #30 Progressive Supranuclear Palsy

  https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/psp.html

  Management of PSP starts with the correct diagnosis, through clinical examination by a movement disorder specialist. […] Since PSP is a gradual progressive disease, it does not cause any sudden symptoms unless there are complications. Currently, the main goal of treating PSP is to prevent complications and improve the quality of life. The most important complications that need to be prevented are falls and choking. Because of those dangers, a multidisciplinary approach is essential in the management of PSP. Along with a movement disorder specialist, speech, language, and occupational therapists and dietitians should be involved in the management plan. […] Working with a physical therapist can provide effective measures and techniques to avoid falls and their consequences. Physical therapists can provide tips on ways to improve walking and balance (i.e., using a weighted walker and using low-heel nonstick shoes).

• #31

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #32 Progressive Supranuclear Palsy

  https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/psp.html

  Speech therapists evaluate the swallowing function (modified barium swallow study) and make sure to prevent choking in the future by teaching specific techniques like head posturing and modifying diet. In addition, speech therapy can also improve voice projection. […] Working with an occupational therapist is essential to promote and extend independence. Eating and reading both can be improved in patients with severe limitation of eye movement by using special glasses called prisms to remedy the difficulty of looking down. […] Several drugs have been studied for the treatment of the motor aspects of the PSP. Unlike Parkinson’s disease, treating PSP patients with levodopa usually has no significant benefits, however, if there is parkinsonism, it is important to administer it for at least a month at high doses to be sure of the response. […] These can effectively be used to treat various forms of focal dystonia and eyelid drop. These injections may help to decrease the disability and improve quality of life; however there is always the risk of side effects.

• #33 Progressive Supranuclear Palsy

  https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/psp.html

  Speech therapists evaluate the swallowing function (modified barium swallow study) and make sure to prevent choking in the future by teaching specific techniques like head posturing and modifying diet. In addition, speech therapy can also improve voice projection. […] Working with an occupational therapist is essential to promote and extend independence. Eating and reading both can be improved in patients with severe limitation of eye movement by using special glasses called prisms to remedy the difficulty of looking down. […] Several drugs have been studied for the treatment of the motor aspects of the PSP. Unlike Parkinson’s disease, treating PSP patients with levodopa usually has no significant benefits, however, if there is parkinsonism, it is important to administer it for at least a month at high doses to be sure of the response. […] These can effectively be used to treat various forms of focal dystonia and eyelid drop. These injections may help to decrease the disability and improve quality of life; however there is always the risk of side effects.

• #34 Progressive Supranuclear Palsy (PSP) – Brain Foundation

  https://brainfoundation.org.au/disorders/progressive-supranuclear-palsy/

  Progressive supranuclear palsy (PSP) is a rare brain disorder that affects movement, balance, and eye movements. […] There is no cure or disease-modifying treatment for progressive supranuclear palsy. Instead, treatment is focused on managing symptoms and giving the patient the best possible quality of life. […] Several medications can be helpful, as well as multidisciplinary care such as speech therapy or physiotherapy. As the disease progresses, patients may need a walker or other assistive devices. […] Non-drug support is equally as important as medication for managing PSP. Patients and families will require input from a diverse multidisciplinary team to help manage physical, emotional and mental symptoms. […] A speech therapist can teach safer swallowing techniques and advise on the need for dietary adjustment to minimise swallowing problems and maximise safe eating.

• #35

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  A physical therapist (PT) helps people with movement symptoms. This is done through exercises during appointments that help strengthen or correct movements that are important for balance and coordination and continuing them at home. […] An occupational therapist (OT) helps people continue doing tasks and activities that prolong independence and help maintain joy and meaning in their lives. […] A speech-language pathologist (SLP) works with people who are having issues with speech, swallowing and language. Their goals are to improve and prolong communication skills, assess and help adapt to swallowing changes. […] A feeding tube can be a safe and helpful option for people with PSP who are experiencing difficulties with swallowing. A feeding tube can be considered when someone is no longer able to take in necessary amounts of nutrition and calories by eating or drinking. They can prevent unnecessary weight loss and decrease risk of breathing in food or drink, known as aspiration.

• #36

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #37

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  A physical therapist (PT) helps people with movement symptoms. This is done through exercises during appointments that help strengthen or correct movements that are important for balance and coordination and continuing them at home. […] An occupational therapist (OT) helps people continue doing tasks and activities that prolong independence and help maintain joy and meaning in their lives. […] A speech-language pathologist (SLP) works with people who are having issues with speech, swallowing and language. Their goals are to improve and prolong communication skills, assess and help adapt to swallowing changes. […] A feeding tube can be a safe and helpful option for people with PSP who are experiencing difficulties with swallowing. A feeding tube can be considered when someone is no longer able to take in necessary amounts of nutrition and calories by eating or drinking. They can prevent unnecessary weight loss and decrease risk of breathing in food or drink, known as aspiration.

• #38 Progressive Supranuclear Palsy | Memory and Aging Center

  https://memory.ucsf.edu/dementia/progressive-supranuclear-palsy

  Speech therapy may be helpful for people with PSP who have problems with speaking and expression. […] Physical therapy and stretching exercises may help strengthen stiff muscles and improve some movement difficulties. […] A professional should evaluate fall risks at the home of the person with PSP and make changes as necessary, such as installing rails, removing carpets or adding a shower chair. […] Using a walking aid with a heavy front to prevent falling backward, eating more solid foods and less thin liquids, and physical therapy or exercise programs to improve mobility may be helpful. […] If swallowing problems become severe, insertion of a feeding tube directly into the stomach can significantly decrease the risk of pneumonia.

• #39 Progressive Supranuclear Palsy

  https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/psp.html

  Speech therapists evaluate the swallowing function (modified barium swallow study) and make sure to prevent choking in the future by teaching specific techniques like head posturing and modifying diet. In addition, speech therapy can also improve voice projection. […] Working with an occupational therapist is essential to promote and extend independence. Eating and reading both can be improved in patients with severe limitation of eye movement by using special glasses called prisms to remedy the difficulty of looking down. […] Several drugs have been studied for the treatment of the motor aspects of the PSP. Unlike Parkinson’s disease, treating PSP patients with levodopa usually has no significant benefits, however, if there is parkinsonism, it is important to administer it for at least a month at high doses to be sure of the response. […] These can effectively be used to treat various forms of focal dystonia and eyelid drop. These injections may help to decrease the disability and improve quality of life; however there is always the risk of side effects.

• #40 Progressive supranuclear palsy: nursing care implications – PubMed

  https://pubmed.ncbi.nlm.nih.gov/2976788/

  Progressive supranuclear palsy (PSP) is an uncommon, but debilitating, neurological disease. Characterized by paralysis of eye movements, difficulty talking and swallowing, body trunk rigidity, gait ataxia, and dementia, the disease progresses rapidly over a 6-8 year time span. Death usually occurs from aspiration pneumonia. To provide meaningful care for the PSP patient and his/her family, the neuroscience nurse must first understand the disease pathophysiology, then the appropriate care interventions.

• #41 Progressive supranuclear palsy (PSP): Management and prognosis – UpToDate

  https://www.uptodate.com/contents/progressive-supranuclear-palsy-psp-management-and-prognosis/print

  Progressive supranuclear palsy (PSP) is an atypical parkinsonian disorder characterized by vertical supranuclear gaze palsy and postural instability with unexplained falls. This topic will review the management and prognosis of PSP. […] There are no treatments that alter the natural history of disease in PSP and no drugs that provide significant symptomatic benefits as seen with levodopa in Parkinson disease. However, several nonpharmacologic and pharmacologic supportive measures are available for the treatment of PSP. […] A multidisciplinary approach is essential, involving health care professionals from neurology, physical therapy, occupational therapy, speech pathology, nutrition, neuropsychology, psychiatry, social work, and palliative care. […] Dietitians as well as speech and language therapists can help to manage dysphagia and dysarthria. Specific modalities for dysarthria include facial exercises, Lee Silverman Voice Treatment, written communication, and a talking keyboard. Some experts advise routine swallowing evaluations (eg, every six months) to assess the risk for dysphagia and aspiration, which are major causes of mortality in patients with PSP. Treatments for dysphagia include head posturing, dietary changes, and percutaneous gastrostomy tube placement in more advanced cases. However, a gastrostomy tube does not diminish the risk of aspiration.

• #42 Progressive supranuclear palsy (PSP): Management and prognosis – UpToDate

  https://www.uptodate.com/contents/progressive-supranuclear-palsy-psp-management-and-prognosis/print

  Progressive supranuclear palsy (PSP) is an atypical parkinsonian disorder characterized by vertical supranuclear gaze palsy and postural instability with unexplained falls. This topic will review the management and prognosis of PSP. […] There are no treatments that alter the natural history of disease in PSP and no drugs that provide significant symptomatic benefits as seen with levodopa in Parkinson disease. However, several nonpharmacologic and pharmacologic supportive measures are available for the treatment of PSP. […] A multidisciplinary approach is essential, involving health care professionals from neurology, physical therapy, occupational therapy, speech pathology, nutrition, neuropsychology, psychiatry, social work, and palliative care. […] Dietitians as well as speech and language therapists can help to manage dysphagia and dysarthria. Specific modalities for dysarthria include facial exercises, Lee Silverman Voice Treatment, written communication, and a talking keyboard. Some experts advise routine swallowing evaluations (eg, every six months) to assess the risk for dysphagia and aspiration, which are major causes of mortality in patients with PSP. Treatments for dysphagia include head posturing, dietary changes, and percutaneous gastrostomy tube placement in more advanced cases. However, a gastrostomy tube does not diminish the risk of aspiration.

• #43

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  A physical therapist (PT) helps people with movement symptoms. This is done through exercises during appointments that help strengthen or correct movements that are important for balance and coordination and continuing them at home. […] An occupational therapist (OT) helps people continue doing tasks and activities that prolong independence and help maintain joy and meaning in their lives. […] A speech-language pathologist (SLP) works with people who are having issues with speech, swallowing and language. Their goals are to improve and prolong communication skills, assess and help adapt to swallowing changes. […] A feeding tube can be a safe and helpful option for people with PSP who are experiencing difficulties with swallowing. A feeding tube can be considered when someone is no longer able to take in necessary amounts of nutrition and calories by eating or drinking. They can prevent unnecessary weight loss and decrease risk of breathing in food or drink, known as aspiration.

• #44 Treatments for Progressive Supranuclear Palsy | Stanford Health Care

  https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/progressive-supranuclear-palsy/treatments.html

  No medication or procedure is available to cure progressive supranuclear palsy (PSP) or completely control its symptoms, but strategies and methods can help manage many of the symptoms. […] To improve balance and improve flexibility of the muscles, medications used to treat Parkinson’s disease may be effective. […] If you have PSP, you may be able to use certain aids to make life easier. […] Physical therapy and exercise may slightly improve flexibility in some people. […] When symptoms are advanced and swallowing becomes too difficult, you may need a feeding tubea tube that goes from an opening made in the skin of your abdomen into the stomachto provide you with needed nutrition. […] PSP can cause serious complications when symptoms affect your ability to swallow.

• #45 Progressive Supranuclear Palsy | AFTD

  https://www.theaftd.org/what-is-ftd/progressive-supranuclear-palsy/

  There is currently no effective treatment for PSP. In some patients, the slowness, stiffness, and balance problems of PSP may respond to anti-parkinsonian agents such as levodopa, or levodopa combined with anticholinergic agents, but the effect is usually temporary. […] Management of PSP symptoms can take many forms. Patients frequently use weighted walking aids to counteract their tendency to fall backward. […] Although formal physical therapy is of no proven benefit in PSP, exercises can be done to keep the joints limber. Prevention of injuries related to recurrent falls is a major focus of physical therapy. […] PSP predisposes those affected to serious complications such as pneumonia followed from difficulty in swallowing (dysphagia). […] A surgical procedure involving a gastrostomy tube may be done when there are significant and severe swallowing disturbances. This surgery involves the placement of a tube through the skin of the abdomen into the stomach for feeding purposes. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #46 Progressive supranuclear palsy (PSP): Management and prognosis – UpToDate

  https://www.uptodate.com/contents/progressive-supranuclear-palsy-psp-management-and-prognosis/print

  Progressive supranuclear palsy (PSP) is an atypical parkinsonian disorder characterized by vertical supranuclear gaze palsy and postural instability with unexplained falls. This topic will review the management and prognosis of PSP. […] There are no treatments that alter the natural history of disease in PSP and no drugs that provide significant symptomatic benefits as seen with levodopa in Parkinson disease. However, several nonpharmacologic and pharmacologic supportive measures are available for the treatment of PSP. […] A multidisciplinary approach is essential, involving health care professionals from neurology, physical therapy, occupational therapy, speech pathology, nutrition, neuropsychology, psychiatry, social work, and palliative care. […] Dietitians as well as speech and language therapists can help to manage dysphagia and dysarthria. Specific modalities for dysarthria include facial exercises, Lee Silverman Voice Treatment, written communication, and a talking keyboard. Some experts advise routine swallowing evaluations (eg, every six months) to assess the risk for dysphagia and aspiration, which are major causes of mortality in patients with PSP. Treatments for dysphagia include head posturing, dietary changes, and percutaneous gastrostomy tube placement in more advanced cases. However, a gastrostomy tube does not diminish the risk of aspiration.

• #47 Progressive Supranuclear Palsy (PSP) – Brain Foundation

  https://brainfoundation.org.au/disorders/progressive-supranuclear-palsy/

  Physiotherapy is extremely important to maintain physical strength as long as possible and minimise falls risk. […] A dietician can be very important in ensuring people with PSP have adequate nutrition. […] Caregivers can improve the safety of the person with PSP by keeping pathways in the home clear of objects such as toys, floor rugs, or low furniture that are difficult to see without looking down. […] PSP gets progressively worse but is not itself directly life-threatening. It does, however, predispose patients to serious complications such as pneumonia secondary to difficulty in swallowing. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #48

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  When living with a serious and progressive disease, its normal to experience sadness, uncertainty and fear about what the future may hold. These are normal emotions to process after receiving a life altering diagnosis it requires a lot of emotional and physical energy to continually adapt to physical and mental changes! Like all feelings, these emotions are often temporary. However, when these normal emotions regularly interrupt your daily life and prevent you from participating in activities that you previously enjoyed, this could be a sign of a mental health issue. […] People with PSP tend to experience depression and anxiety, but the most common mental health and mood symptom for people with PSP is apathy. Impulsivity and personality changes can also occur with PSP. While these symptoms can be isolating and scary, there are some treatment options to consider.

• #49

  https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy

  When living with a serious and progressive disease, its normal to experience sadness, uncertainty and fear about what the future may hold. These are normal emotions to process after receiving a life altering diagnosis it requires a lot of emotional and physical energy to continually adapt to physical and mental changes! Like all feelings, these emotions are often temporary. However, when these normal emotions regularly interrupt your daily life and prevent you from participating in activities that you previously enjoyed, this could be a sign of a mental health issue. […] People with PSP tend to experience depression and anxiety, but the most common mental health and mood symptom for people with PSP is apathy. Impulsivity and personality changes can also occur with PSP. While these symptoms can be isolating and scary, there are some treatment options to consider.

• #50

  https://www.brain.northwestern.edu/dementia/psps/treatment.html

  There are a number of non-pharmacologic ways to support those with Progressive Supranuclear Palsy Syndrome (PSPS). Speech therapy can improve swallowing, language and communication. Occupational therapy can help provide strategies and techniques to compensate for the cognitive and motor changes associated with PSPS. Physical therapy can also improve aspects of motor function. […] Though there is no cure for progressive supranuclear palsy syndrome (PSPS), some medications can be prescribed with the goal of symptom reduction. Levodopa (Sinemet) can be trialed to address the motor symptoms of PSPS. Unfortunately, the response to levodopa is usually very limited. […] Medications can be prescribed to address mood and anxiety symptoms associated with PSPS. These medications can provide relief for affected individuals and their caregivers. Antidepressants can be given to treat depression, anxiety, or irritability. Low doses of antipsychotics may also be considered to help address delusional thinking or aggression.

• #51 Get Progressive Supranuclear Palsy (PSP) Care | Cleveland Clinic

  https://my.clevelandclinic.org/services/progressive-supranuclear-palsy-treatment

  Coping with the progressive symptoms of PSP can be overwhelming. […] We’ll support you and your family throughout this journey. We’ll help you learn as much as possible about PSP and offer counseling and personalized care. […] Your providers will develop a treatment plan that matches your specific needs. And we also support your loved ones as they learn how to become caregivers now and into the future. […] Treating a chronic condition, like PSP, is about managing your symptoms. Our expert care team is ready to help you live as comfortably as possible. […] In addition to medications, there are other ways we can help you manage the symptoms and stress of PSP. We might recommend counseling to help cope with mental health issues. […] Coping with the progression of PSP can be challenging not only for you, but for your family, too. The condition can lead to severe disabilities and sometimes complications within several years. We’re here to support those you love throughout this journey.

• #52

  https://pspawareness.com/blogs/psp-q-a/the-pillars-of-support-psp-and-hospice-care?srsltid=AfmBOopdTxRp_hOG80nczJZjC7rcTFYBY0wjojP4nszfGtO3yZnfJ0Ao

  Progressive Supranuclear Palsy (PSP) is a rare neurological disorder, leading to difficulties with balance, movement, vision, speech, and swallowing. […] One of the primary benefits of hospice care is symptom relief. The hospice team works tirelessly to ensure that pain, discomfort, and other symptoms are well-managed, making the patients life as comfortable as possible. […] Hospice care provides counselling and emotional support not just to the patient but also to their families, helping them navigate the challenges. […] Many hospice programs offer therapeutic activities that can be beneficial for PSP patients, such as music or art therapy. […] Hospice offers respite care, allowing families and caregivers a much-needed break, ensuring they remain strong and refreshed to support their loved ones.

• #53 Get Progressive Supranuclear Palsy (PSP) Care | Cleveland Clinic

  https://my.clevelandclinic.org/services/progressive-supranuclear-palsy-treatment

  Coping with the progressive symptoms of PSP can be overwhelming. […] We’ll support you and your family throughout this journey. We’ll help you learn as much as possible about PSP and offer counseling and personalized care. […] Your providers will develop a treatment plan that matches your specific needs. And we also support your loved ones as they learn how to become caregivers now and into the future. […] Treating a chronic condition, like PSP, is about managing your symptoms. Our expert care team is ready to help you live as comfortably as possible. […] In addition to medications, there are other ways we can help you manage the symptoms and stress of PSP. We might recommend counseling to help cope with mental health issues. […] Coping with the progression of PSP can be challenging not only for you, but for your family, too. The condition can lead to severe disabilities and sometimes complications within several years. We’re here to support those you love throughout this journey.

• #54

  https://link.springer.com/article/10.1007/s40120-022-00420-1

  Caregivers often feel frustrated, sad, alone or unsupported and feelings of guilt arise from self-perceptions of giving inadequate care. […] Caregivers will provide constant care for patients at this stage of the disease, and it is not uncommon for them to wish for the situation to come to an end. […] POs play a crucial role in providing patients and caregivers with support from diagnosis through to end-of-life. […] The authors cannot emphasise enough the enormous impact PSP has on the caregiver and would suggest more helplines are set up for on-demand support. […] The study findings suggest that compared with other countries, patients/caregivers in Japan receive more information upon PSP diagnosis and better support options. […] The authors also suggest that closer collaboration between POs and HCPs may be beneficial, with POs providing intensified outreach to time-constrained HCPs. […] Caregiver health, as well as the patients health, is a major public health concern that physicians and other HCPs need to address.

• #55

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #56 Progressive Supranuclear Palsy (PSP): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/6096-progressive-supranuclear-palsy

  Theres currently no cure for PSP and no way to slow it down. But several treatments can help manage your symptoms and improve your quality of life. […] Treatments include: Oral medications, Movement therapies, Eye treatments, Percutaneous endoscopic gastrostomy (PEG), Palliative care. […] Antiparkinsonian medications are oral (taken by mouth) medicines typically used to help people with Parkinsons disease. They can sometimes help manage progressive supranuclear palsy symptoms, too. […] Physical therapy can help you manage symptoms like pain, stiffness and discomfort that make it hard to move. […] An occupational therapist is a healthcare provider who helps you improve your ability to perform daily tasks. […] Speech therapists can help you improve speaking and swallowing issues. […] Palliative care is a specialized form of care that provides symptom relief, comfort and support to people living with serious conditions, including PSP. It also provides support to caregivers and those impacted by a loved ones condition. […] Cleveland Clinic can help you manage progressive supranuclear palsy (PSP) by easing your symptoms and offering emotional support for you and your family.

• #57

  https://pspawareness.com/blogs/psp-q-a/the-pillars-of-support-psp-and-hospice-care?srsltid=AfmBOopdTxRp_hOG80nczJZjC7rcTFYBY0wjojP4nszfGtO3yZnfJ0Ao

  Progressive Supranuclear Palsy (PSP) is a rare neurological disorder, leading to difficulties with balance, movement, vision, speech, and swallowing. […] One of the primary benefits of hospice care is symptom relief. The hospice team works tirelessly to ensure that pain, discomfort, and other symptoms are well-managed, making the patients life as comfortable as possible. […] Hospice care provides counselling and emotional support not just to the patient but also to their families, helping them navigate the challenges. […] Many hospice programs offer therapeutic activities that can be beneficial for PSP patients, such as music or art therapy. […] Hospice offers respite care, allowing families and caregivers a much-needed break, ensuring they remain strong and refreshed to support their loved ones.

• #58

  https://pspawareness.com/blogs/psp-q-a/the-pillars-of-support-psp-and-hospice-care?srsltid=AfmBOopdTxRp_hOG80nczJZjC7rcTFYBY0wjojP4nszfGtO3yZnfJ0Ao

  Progressive Supranuclear Palsy (PSP) is a rare neurological disorder, leading to difficulties with balance, movement, vision, speech, and swallowing. […] One of the primary benefits of hospice care is symptom relief. The hospice team works tirelessly to ensure that pain, discomfort, and other symptoms are well-managed, making the patients life as comfortable as possible. […] Hospice care provides counselling and emotional support not just to the patient but also to their families, helping them navigate the challenges. […] Many hospice programs offer therapeutic activities that can be beneficial for PSP patients, such as music or art therapy. […] Hospice offers respite care, allowing families and caregivers a much-needed break, ensuring they remain strong and refreshed to support their loved ones.

• #59

  https://pspawareness.com/blogs/psp-q-a/the-pillars-of-support-psp-and-hospice-care?srsltid=AfmBOopdTxRp_hOG80nczJZjC7rcTFYBY0wjojP4nszfGtO3yZnfJ0Ao

  Hospice care teams educate families about PSP, its progression, and ways to support their loved ones better. […] Hospice care often integrates a holistic approach, incorporating physical, emotional, spiritual, and social aspects, ensuring all areas of a patient’s well-being are catered to. […] In the journey with PSP, hospice care acts as a beacon of hope, support, and solace. […] If swallowing continues to decline hospice will only do orally dissolving meds for comfort. […] I disagree that hospice cannot accept patient who may need a peg tube soon I do not feel quality of life and comfort care cannot be accepted in PSP when a rare terminal disease that has NO CURE may need a pegs tube.

• #60 Progressive supranuclear palsy (PSP) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/progressive-supranuclear-palsy-psp/

  Progressive supranuclear palsy (PSP) is a neurological condition. Its caused by the loss of nerve cells in parts of the brain. This can lead to problems with balance, movement, vision, speech and swallowing. […] Although theres no cure for PSP, there are lots of ways you can manage your symptoms. […] Its likely youll have a multi disciplinary team (MDT) wholl work together to help manage your symptoms. […] A physiotherapist can give you regular exercises to do. This can help strengthen your muscles and prevent your joints from stiffening. […] A speech and language therapist will try to help with your problems with speech and swallowing (dysphagia). […] An occupational therapist will assess your home for hazards that could cause you to fall and injure yourself. […] You can choose to have palliative care at any stage of PSP in addition to other treatments. […] Palliative care aims to relieve pain and other symptoms along with psychological, spiritual and social support.

• #61 Progressive supranuclear palsy & Parkinson’s disease | APDA

  https://www.apdaparkinson.org/progressive-supranuclear-palsy-corticobasal-degeneration/

  Since its recognition as a distinct neurodegenerative disorder in 1964, PSP has undergone more than one reorganization into various subtypes based on the increased recognition of its clinical symptoms. […] The progression of PSP is typically more rapid than PD, leading to dysphagia (difficulty in swallowing), falls causing injury, and immobility much earlier in the course than in PD. Therefore, advanced care planning and palliative care should be initiated as soon as possible to mitigate discomfort and maintain patient and care partner quality of life. […] As in PSP, there is no specific medication for CBD and symptoms are typically not responsive to Levodopa. Treatment is focused on ensuring the motor and nonmotor symptoms of the disease are treated in a multidisciplinary manner with continuous rehabilitation, patient comfort, and care partner concerns addressed as frequently as possible. There is a special need for advanced care planning and timely initiation of palliative care and hospice in CBD, especially when self-care, swallowing, or independent mobility are affected.

• #62 Progressive supranuclear palsy – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/diagnosis-treatment/drc-20355664

  Our caring team of Mayo Clinic experts can help you with your progressive supranuclear palsy-related health concerns […] Although there is no cure for progressive supranuclear palsy, treatments are available to help ease symptoms of the disorder. The options include: […] 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. […] 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.

• #63

  https://link.springer.com/article/10.1007/s40120-022-00420-1

  Caregivers often feel frustrated, sad, alone or unsupported and feelings of guilt arise from self-perceptions of giving inadequate care. […] Caregivers will provide constant care for patients at this stage of the disease, and it is not uncommon for them to wish for the situation to come to an end. […] POs play a crucial role in providing patients and caregivers with support from diagnosis through to end-of-life. […] The authors cannot emphasise enough the enormous impact PSP has on the caregiver and would suggest more helplines are set up for on-demand support. […] The study findings suggest that compared with other countries, patients/caregivers in Japan receive more information upon PSP diagnosis and better support options. […] The authors also suggest that closer collaboration between POs and HCPs may be beneficial, with POs providing intensified outreach to time-constrained HCPs. […] Caregiver health, as well as the patients health, is a major public health concern that physicians and other HCPs need to address.

• #64 PSP Progressive Supranuclear Palsy | Definitions, Symptoms, Help

  https://www.pspassociation.org.uk/information-and-support/what-is-psp/

  Caring for someone with PSP involves understanding various stages and adapting to changing needs. Initial shock and adjustment to the caregiving role are common, as is the feeling of loss regarding future plans and relationship changes. Acceptance and finding a routine in caregiving are crucial, alongside managing personal health and wellbeing. […] It’s important to recognise the need for and seek practical help, like a Carers Assessment, and to balance work with caregiving responsibilities. Support from organisations like PSPA, offering emotional support, and connections to others in similar situations, is invaluable. […] At PSPA, we have numerous resources to offer support to caregivers. We are committed to ensuring that family and unpaid carers of all ages who support people with PSP have access to a network of support and high-quality, reliable information.

• #65 PSP Progressive Supranuclear Palsy | Definitions, Symptoms, Help

  https://www.pspassociation.org.uk/information-and-support/what-is-psp/

  Caring for someone with PSP involves understanding various stages and adapting to changing needs. Initial shock and adjustment to the caregiving role are common, as is the feeling of loss regarding future plans and relationship changes. Acceptance and finding a routine in caregiving are crucial, alongside managing personal health and wellbeing. […] It’s important to recognise the need for and seek practical help, like a Carers Assessment, and to balance work with caregiving responsibilities. Support from organisations like PSPA, offering emotional support, and connections to others in similar situations, is invaluable. […] At PSPA, we have numerous resources to offer support to caregivers. We are committed to ensuring that family and unpaid carers of all ages who support people with PSP have access to a network of support and high-quality, reliable information.

• #66 PSP Progressive Supranuclear Palsy | Definitions, Symptoms, Help

  https://www.pspassociation.org.uk/information-and-support/what-is-psp/

  Caring for someone with PSP involves understanding various stages and adapting to changing needs. Initial shock and adjustment to the caregiving role are common, as is the feeling of loss regarding future plans and relationship changes. Acceptance and finding a routine in caregiving are crucial, alongside managing personal health and wellbeing. […] It’s important to recognise the need for and seek practical help, like a Carers Assessment, and to balance work with caregiving responsibilities. Support from organisations like PSPA, offering emotional support, and connections to others in similar situations, is invaluable. […] At PSPA, we have numerous resources to offer support to caregivers. We are committed to ensuring that family and unpaid carers of all ages who support people with PSP have access to a network of support and high-quality, reliable information.

• #67

  https://pspawareness.com/blogs/psp-q-a/the-pillars-of-support-psp-and-hospice-care?srsltid=AfmBOopdTxRp_hOG80nczJZjC7rcTFYBY0wjojP4nszfGtO3yZnfJ0Ao

  Progressive Supranuclear Palsy (PSP) is a rare neurological disorder, leading to difficulties with balance, movement, vision, speech, and swallowing. […] One of the primary benefits of hospice care is symptom relief. The hospice team works tirelessly to ensure that pain, discomfort, and other symptoms are well-managed, making the patients life as comfortable as possible. […] Hospice care provides counselling and emotional support not just to the patient but also to their families, helping them navigate the challenges. […] Many hospice programs offer therapeutic activities that can be beneficial for PSP patients, such as music or art therapy. […] Hospice offers respite care, allowing families and caregivers a much-needed break, ensuring they remain strong and refreshed to support their loved ones.

• #68

  https://pspawareness.com/blogs/psp-q-a/the-pillars-of-support-psp-and-hospice-care?srsltid=AfmBOopdTxRp_hOG80nczJZjC7rcTFYBY0wjojP4nszfGtO3yZnfJ0Ao

  Hospice care teams educate families about PSP, its progression, and ways to support their loved ones better. […] Hospice care often integrates a holistic approach, incorporating physical, emotional, spiritual, and social aspects, ensuring all areas of a patient’s well-being are catered to. […] In the journey with PSP, hospice care acts as a beacon of hope, support, and solace. […] If swallowing continues to decline hospice will only do orally dissolving meds for comfort. […] I disagree that hospice cannot accept patient who may need a peg tube soon I do not feel quality of life and comfort care cannot be accepted in PSP when a rare terminal disease that has NO CURE may need a pegs tube.

• #69

  https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/treatment/

  Antidepressants can help with the depression that’s often associated with PSP. […] A physiotherapist can give you advice about making the most of your remaining mobility using exercise, while making sure you don’t overexert yourself. […] Your physiotherapist can advise about equipment that could benefit you, such as a walking frame or specially designed shoes to reduce the risk of slipping and falling. […] A speech and language therapist (SLT) can help you improve your speech and swallowing problems (dysphagia). […] An occupational therapist (OT) can advise you about how you can increase your safety and prevent trips and falls during your day-to-day activities. […] Palliative care can be offered at any stage of PSP, alongside other treatments. […] Many people with PSP consider making plans for the future that outline their wishes (both medical and other decisions), and make these known to both their family and the health professionals involved in their care. […] If someone you know develops PSP, you may need information and advice about caring for them.

• #70 Progressive Supranuclear Palsy: Symptoms, Causes, Treatments

  https://www.webmd.com/parkinsons-disease/progressive-supranuclear-palsy-psp

  Progressive supranuclear palsy, or PSP, is a rare neurodegenerative disease that is often misdiagnosed as Parkinson’s disease because its symptoms are similar. […] The advanced stage usually lasts from year 3 to year 6. The symptoms include: […] At this point, if you’re a caregiver for someone with PSP, you might need to make decisions about your loved one’s treatment based on the wishes they had in the past (advance decisions to refuse treatment). […] There is no cure for PSP. Care for this condition focuses on creating the best quality of life for as long as possible. […] Talk to your doctor about ways to manage these risks. For example, you can use a feeding tube to avoid aspiration or choking. You can also get a walker or wheelchair to help avoid falls. […] There are ways you can make life with PSP a little easier: […] Support groups for progressive supranuclear palsy. To find more support and connect with others, you can visit websites such as psp.org or brainsupportnetwork.org.

• #71

  https://movementdisorders.ufhealth.org/2011/10/01/six-things-every-family-and-sufferer-need-to-know-about-progressive-supranuclear-palsy-psp/

  6 Things Every Family and Sufferer Need to Know about PSP […] The mainstay of treatment, however, is primarily supportive and involves multiple disciplines, including physical, occupational, and speech therapists. […] Evaluation early on by a trained physical therapist, knowledgeable in Parkinsonism, is critical to help with gait, balance, and prevent falls. […] Routine formal swallow evaluation is critical and should be performed about every 6 months or more often as needed. […] It is vitally important that before that happens you should discuss with your doctor your wishes regarding a feeding tube. […] Treatment often initially includes antidepressants. […] Start with your doctor. It is important that you always communicate your needs and concerns.

• #72 Progressive supranuclear palsy & Parkinson’s disease | APDA

  https://www.apdaparkinson.org/progressive-supranuclear-palsy-corticobasal-degeneration/

  Since its recognition as a distinct neurodegenerative disorder in 1964, PSP has undergone more than one reorganization into various subtypes based on the increased recognition of its clinical symptoms. […] The progression of PSP is typically more rapid than PD, leading to dysphagia (difficulty in swallowing), falls causing injury, and immobility much earlier in the course than in PD. Therefore, advanced care planning and palliative care should be initiated as soon as possible to mitigate discomfort and maintain patient and care partner quality of life. […] As in PSP, there is no specific medication for CBD and symptoms are typically not responsive to Levodopa. Treatment is focused on ensuring the motor and nonmotor symptoms of the disease are treated in a multidisciplinary manner with continuous rehabilitation, patient comfort, and care partner concerns addressed as frequently as possible. There is a special need for advanced care planning and timely initiation of palliative care and hospice in CBD, especially when self-care, swallowing, or independent mobility are affected.

• #73 Progressive Supranuclear Palsy (PSP)

  https://www.massgeneral.org/neurology/treatments-and-services/progressive-supranuclear-palsy

  Our team of physicians is actively involved in research to better understand the causes of PSP and to identify new treatments. […] Clinical trials for new investigational drugs: our physicians are involved in research studies to move treatments forward for PSP. […] We have over 70 years of history providing diagnosis, treatment and support to adult and pediatric patients with a variety of movement disorders.

• #74 Progressive Supranuclear Palsy (PSP)

  https://www.massgeneral.org/neurology/treatments-and-services/progressive-supranuclear-palsy

  Our team of physicians is actively involved in research to better understand the causes of PSP and to identify new treatments. […] Clinical trials for new investigational drugs: our physicians are involved in research studies to move treatments forward for PSP. […] We have over 70 years of history providing diagnosis, treatment and support to adult and pediatric patients with a variety of movement disorders.

• #75 Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence: HDSA Huntington’s Disease Center of Excellence at University of Florida » Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence »

  https://fixel.ufhealth.org/getting-care/centers-of-excellence/progressive-supranuclear-palsy-atypical-parkinsonism-center-of-excellence/

  The UF CurePSP Center of Care (PSP/Atypical Parkinson clinic) is fully integrated with the Fixel Institute for Neurological Diseases and collaborates with the UF Center for Translational Research in Neurodegenerative Diseases and the Clinical Trials Research Center. […] We aim to offer patients opportunities to participate in clinical trials that may lead to advancements in diagnosis and treatment for these challenging conditions, ensuring the best possible care and research experience.

• #76 OHSU among 25 centers treating debilitating movement disorder | OHSU News

  https://news.ohsu.edu/2021/07/01/ohsu-among-25-centers-treating-debilitating-movement-disorder

  The consensus paper highlights the value of accurate diagnosis and early intervention. […] It does extend patients longevity to be on the right regimen of therapies early on, Dale said. Many patients take a long time to get a diagnosis. An astute physical therapist or ophthalmologist might pick it up, but it gets missed a lot.

• #77 OHSU among 25 centers treating debilitating movement disorder | OHSU News

  https://news.ohsu.edu/2021/07/01/ohsu-among-25-centers-treating-debilitating-movement-disorder

  Oregon Health Science University is among 25 specialized centers around North America to treat a rapidly degenerative form of parkinsonism that may be more common than generally understood. […] In an effort to improve diagnosis and treatment, a trio of OHSU clinicians and researchers joined with other experts across the U.S. and Canada in co-authoring a consensus of best practices around the disorder. […] Clinicians hope the new consensus document will raise awareness of PSP and a related disorder called corticobasal syndrome especially among primary care physicians, geriatricians and general neurologists, said co-author Marian Dale, M.D., M.C.R., assistant professor of neurology in the OHSU School of Medicine and director of OHSUs CurePSP Center of Care. […] With early diagnosis, Dale said its possible to extend longevity and reduce symptoms through targeted approaches such as speech therapy, physical therapy and occupational therapy. OHSU, which established the only CurePSP Center of Care in Oregon or Washington in 2019, coordinates patient care through a multidisciplinary team.

• #78 OHSU among 25 centers treating debilitating movement disorder | OHSU News

  https://news.ohsu.edu/2021/07/01/ohsu-among-25-centers-treating-debilitating-movement-disorder

  The consensus paper highlights the value of accurate diagnosis and early intervention. […] It does extend patients longevity to be on the right regimen of therapies early on, Dale said. Many patients take a long time to get a diagnosis. An astute physical therapist or ophthalmologist might pick it up, but it gets missed a lot.

• #79 OHSU among 25 centers treating debilitating movement disorder | OHSU News

  https://news.ohsu.edu/2021/07/01/ohsu-among-25-centers-treating-debilitating-movement-disorder

  Oregon Health Science University is among 25 specialized centers around North America to treat a rapidly degenerative form of parkinsonism that may be more common than generally understood. […] In an effort to improve diagnosis and treatment, a trio of OHSU clinicians and researchers joined with other experts across the U.S. and Canada in co-authoring a consensus of best practices around the disorder. […] Clinicians hope the new consensus document will raise awareness of PSP and a related disorder called corticobasal syndrome especially among primary care physicians, geriatricians and general neurologists, said co-author Marian Dale, M.D., M.C.R., assistant professor of neurology in the OHSU School of Medicine and director of OHSUs CurePSP Center of Care. […] With early diagnosis, Dale said its possible to extend longevity and reduce symptoms through targeted approaches such as speech therapy, physical therapy and occupational therapy. OHSU, which established the only CurePSP Center of Care in Oregon or Washington in 2019, coordinates patient care through a multidisciplinary team.

• #80 Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence: HDSA Huntington’s Disease Center of Excellence at University of Florida » Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence »

  https://fixel.ufhealth.org/getting-care/centers-of-excellence/progressive-supranuclear-palsy-atypical-parkinsonism-center-of-excellence/

  In response to the growing need for specialized care and research, our team came together in 2010 to consolidate resources and establish a Center of Excellence for Progressive Supranuclear Palsy (PSP) and Atypical Parkinsonian Disorders. […] Key needs in this area include: […] Establishing centers that offer comprehensive, interdisciplinary care, support, education, and research opportunities for patients and families affected by these disorders. […] We have developed a model of excellence in care, research, and education for PSP and atypical parkinsonism. […] Patients and their families have access to a full range of interdisciplinary services in one location, including: […] Our goal is to offer these services as needed during the clinic visit, ensuring comprehensive and integrated care.

• #81 Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence: HDSA Huntington’s Disease Center of Excellence at University of Florida » Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence »

  https://fixel.ufhealth.org/getting-care/centers-of-excellence/progressive-supranuclear-palsy-atypical-parkinsonism-center-of-excellence/

  In response to the growing need for specialized care and research, our team came together in 2010 to consolidate resources and establish a Center of Excellence for Progressive Supranuclear Palsy (PSP) and Atypical Parkinsonian Disorders. […] Key needs in this area include: […] Establishing centers that offer comprehensive, interdisciplinary care, support, education, and research opportunities for patients and families affected by these disorders. […] We have developed a model of excellence in care, research, and education for PSP and atypical parkinsonism. […] Patients and their families have access to a full range of interdisciplinary services in one location, including: […] Our goal is to offer these services as needed during the clinic visit, ensuring comprehensive and integrated care.

• #82 Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence: HDSA Huntington’s Disease Center of Excellence at University of Florida » Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence »

  https://fixel.ufhealth.org/getting-care/centers-of-excellence/progressive-supranuclear-palsy-atypical-parkinsonism-center-of-excellence/

  In response to the growing need for specialized care and research, our team came together in 2010 to consolidate resources and establish a Center of Excellence for Progressive Supranuclear Palsy (PSP) and Atypical Parkinsonian Disorders. […] Key needs in this area include: […] Establishing centers that offer comprehensive, interdisciplinary care, support, education, and research opportunities for patients and families affected by these disorders. […] We have developed a model of excellence in care, research, and education for PSP and atypical parkinsonism. […] Patients and their families have access to a full range of interdisciplinary services in one location, including: […] Our goal is to offer these services as needed during the clinic visit, ensuring comprehensive and integrated care.

• #83 Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence: HDSA Huntington’s Disease Center of Excellence at University of Florida » Progressive Supranuclear Palsy & Atypical Parkinsonism Center of Excellence »

  https://fixel.ufhealth.org/getting-care/centers-of-excellence/progressive-supranuclear-palsy-atypical-parkinsonism-center-of-excellence/

  In response to the growing need for specialized care and research, our team came together in 2010 to consolidate resources and establish a Center of Excellence for Progressive Supranuclear Palsy (PSP) and Atypical Parkinsonian Disorders. […] Key needs in this area include: […] Establishing centers that offer comprehensive, interdisciplinary care, support, education, and research opportunities for patients and families affected by these disorders. […] We have developed a model of excellence in care, research, and education for PSP and atypical parkinsonism. […] Patients and their families have access to a full range of interdisciplinary services in one location, including: […] Our goal is to offer these services as needed during the clinic visit, ensuring comprehensive and integrated care.

• #84 CurePSP Center of Care | Columbia Neurology

  https://www.neurology.columbia.edu/research/research-centers-and-programs/curepsp-center-care

  The Neurological Institute at Columbia University Irving Medical Center has been designated a Center of Care by CurePSP since 2021. This designation acknowledges our excellence and leadership in comprehensive patient care, clinical research, professional education, and patient outreach related to atypical parkinsonian syndromes, including Progressive Supranuclear Palsy (PSP) […] The CurePSP Center of Care offers patients and their families comprehensive, specialized care for atypical parkinsonian syndromes. Our interdisciplinary team of experts is trained to address the neurological, behavioral, cognitive, and emotional needs of those coming to our clinical offices. We actively work with patients and their families to develop individualized treatment plans and recommendations. […] The CurePSP Center of Care at CUIMC is also actively engaged in outstanding basic science, translational science, and clinical research in atypical parkinsonian syndromes.

• #85 Progressive Supranuclear Palsy: Symptoms, Causes, Treatments

  https://www.webmd.com/parkinsons-disease/progressive-supranuclear-palsy-psp

  Progressive supranuclear palsy, or PSP, is a rare neurodegenerative disease that is often misdiagnosed as Parkinson’s disease because its symptoms are similar. […] The advanced stage usually lasts from year 3 to year 6. The symptoms include: […] At this point, if you’re a caregiver for someone with PSP, you might need to make decisions about your loved one’s treatment based on the wishes they had in the past (advance decisions to refuse treatment). […] There is no cure for PSP. Care for this condition focuses on creating the best quality of life for as long as possible. […] Talk to your doctor about ways to manage these risks. For example, you can use a feeding tube to avoid aspiration or choking. You can also get a walker or wheelchair to help avoid falls. […] There are ways you can make life with PSP a little easier: […] Support groups for progressive supranuclear palsy. To find more support and connect with others, you can visit websites such as psp.org or brainsupportnetwork.org.

• #86 Progressive Supranuclear Palsy | AFTD

  https://www.theaftd.org/what-is-ftd/progressive-supranuclear-palsy/

  There is currently no effective treatment for PSP. In some patients, the slowness, stiffness, and balance problems of PSP may respond to anti-parkinsonian agents such as levodopa, or levodopa combined with anticholinergic agents, but the effect is usually temporary. […] Management of PSP symptoms can take many forms. Patients frequently use weighted walking aids to counteract their tendency to fall backward. […] Although formal physical therapy is of no proven benefit in PSP, exercises can be done to keep the joints limber. Prevention of injuries related to recurrent falls is a major focus of physical therapy. […] PSP predisposes those affected to serious complications such as pneumonia followed from difficulty in swallowing (dysphagia). […] A surgical procedure involving a gastrostomy tube may be done when there are significant and severe swallowing disturbances. This surgery involves the placement of a tube through the skin of the abdomen into the stomach for feeding purposes. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #87 Progressive supranuclear palsy | Nursing Times

  https://www.nursingtimes.net/neurology/progressive-supranuclear-palsy-21-02-2006/

  – At present there is no cure for PSP although certain symptoms can be managed. […] – Motor difficulties may respond to medications such as levodopa, on its own or in combination with anticholinergics. […] – Antidepressants such as fluoxetine and amitriptyline can help with mood disturbances. […] – Patients may also use walking aids because of their tendency to fall backwards. Bifocals or special glasses called prisms are sometimes prescribed for PSP patients to remedy the difficulty of looking down. […] – Gastrostomy is used where swallowing difficulties interfere with nutrition. […] – The speech, vision, and swallowing difficulties do not usually respond to any drug treatment.

• #88 Progressive Supranuclear Palsy | Memory and Aging Center

  https://memory.ucsf.edu/dementia/progressive-supranuclear-palsy

  Speech therapy may be helpful for people with PSP who have problems with speaking and expression. […] Physical therapy and stretching exercises may help strengthen stiff muscles and improve some movement difficulties. […] A professional should evaluate fall risks at the home of the person with PSP and make changes as necessary, such as installing rails, removing carpets or adding a shower chair. […] Using a walking aid with a heavy front to prevent falling backward, eating more solid foods and less thin liquids, and physical therapy or exercise programs to improve mobility may be helpful. […] If swallowing problems become severe, insertion of a feeding tube directly into the stomach can significantly decrease the risk of pneumonia.

• #89 Progressive Supranuclear Palsy: Symptoms, Causes, Treatments

  https://www.webmd.com/parkinsons-disease/progressive-supranuclear-palsy-psp

  Progressive supranuclear palsy, or PSP, is a rare neurodegenerative disease that is often misdiagnosed as Parkinson’s disease because its symptoms are similar. […] The advanced stage usually lasts from year 3 to year 6. The symptoms include: […] At this point, if you’re a caregiver for someone with PSP, you might need to make decisions about your loved one’s treatment based on the wishes they had in the past (advance decisions to refuse treatment). […] There is no cure for PSP. Care for this condition focuses on creating the best quality of life for as long as possible. […] Talk to your doctor about ways to manage these risks. For example, you can use a feeding tube to avoid aspiration or choking. You can also get a walker or wheelchair to help avoid falls. […] There are ways you can make life with PSP a little easier: […] Support groups for progressive supranuclear palsy. To find more support and connect with others, you can visit websites such as psp.org or brainsupportnetwork.org.

• #90 Progressive Supranuclear Palsy: 4 Stages, Symptoms & Care | Plexus

  https://plexusnc.com/progressive-supranuclear-palsy-an-overview/

  Nutritional Support to help with safe swallowing and adequate calorie intake. […] At Plexus, we offer regenerative cell therapy programs that explore the potential to slow degeneration and restore lost neurological function in PSP patients. […] A PSP diagnosis can be overwhelming but with the right support and mindset, life can still be meaningful and dignified. […] For Caregivers: Understand the disease: Knowing what to expect helps you stay proactive, not reactive. […] Modify the environment: Install rails, remove rugs, and adjust furniture to improve mobility and safety. […] Seek support: Caregiver support groups, both online and offline, can provide emotional relief and helpful advice.

• #91 Progressive Supranuclear Palsy | AFTD

  https://www.theaftd.org/what-is-ftd/progressive-supranuclear-palsy/

  There is currently no effective treatment for PSP. In some patients, the slowness, stiffness, and balance problems of PSP may respond to anti-parkinsonian agents such as levodopa, or levodopa combined with anticholinergic agents, but the effect is usually temporary. […] Management of PSP symptoms can take many forms. Patients frequently use weighted walking aids to counteract their tendency to fall backward. […] Although formal physical therapy is of no proven benefit in PSP, exercises can be done to keep the joints limber. Prevention of injuries related to recurrent falls is a major focus of physical therapy. […] PSP predisposes those affected to serious complications such as pneumonia followed from difficulty in swallowing (dysphagia). […] A surgical procedure involving a gastrostomy tube may be done when there are significant and severe swallowing disturbances. This surgery involves the placement of a tube through the skin of the abdomen into the stomach for feeding purposes. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

• #92 Progressive Supranuclear Palsy (PSP) – Brain Foundation

  https://brainfoundation.org.au/disorders/progressive-supranuclear-palsy/

  Physiotherapy is extremely important to maintain physical strength as long as possible and minimise falls risk. […] A dietician can be very important in ensuring people with PSP have adequate nutrition. […] Caregivers can improve the safety of the person with PSP by keeping pathways in the home clear of objects such as toys, floor rugs, or low furniture that are difficult to see without looking down. […] PSP gets progressively worse but is not itself directly life-threatening. It does, however, predispose patients to serious complications such as pneumonia secondary to difficulty in swallowing. […] With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond.

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