Living with PSP, MSA or CBS
Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) and Cortico Basal Syndrome (CBS) are conditions that initially present like Parkinson’s but progress and affect people differently.
They are commonly referred to as Atypical Parkinson’s.
It is not yet known what causes PSP, MSA or CBS and there are currently no treatments to cure or slow their progression.
Progressive Supranuclear Palsy (PSP) is a rare condition affecting parts of the brain that control walking, eye movements, balance, speech and swallowing.
Progressive - means symptoms get worse over time
Supranuclear - refers to the part of the brain that’s affected
Palsy - means a weakness or paralysis in part of the body
Other terms sometimes used to describe PSP are Steele-Richardson-Olszewski Syndrome, Richardson’s Disease, Parkinson’s Plus, PSP-Parkinsonism (PSP-P) and Pure Akinesia with Gait Freezing’.
Multiple System Atrophy (MSA) is a rare neurological (brain) condition caused by a gradual loss and shrinkage of brain cells. This loss of cells occurs in the parts of the brain that control movement, balance and automatic functions of the body such as bladder and blood pressure.
Multiple - many (parts of the brain)
System - the brain structures that control different functions
Atrophy - cell shrinkage or damage
Other terms sometimes used to describe MSA are Olivopontocerebellar Atrophy, Striatonigral Degeneration, Parkinson’s Plus’ and ‘Shy-Drager Syndrome’.
Cortico Basal Syndrome (CBS) is most commonly caused by a disease called Cortico Basal Degeneration (CBD).
It is a rare neurological (brain) condition which involves a gradual loss of brain cells in the areas of the brain that look after movement and thinking. CBS is a progressive condition meaning that symptoms worsen over time.
Cortico Basal - refers to the parts of the brain affected. The cortex is the outer layer of the brain and the basal ganglia lies deeper in the brain.
Atypical Parkinson's Peer Support Group
Parkinson’s Victoria runs a national online Atypical Parkinson’s Support group (PSG).
Families affected by a diagnosis of PSP, MSA or CBS can feel isolated by the rarity of these conditions, with many themselves unaware of their existence prior to diagnosis.
This support group provides specialist information and facilitates communication and information sharing between members, who can experience unique challenges and experiences.
Anyone with PSP, MSA or CBS are welcome to attend, along with care-givers, family members and friends – anyone needing support, feeling alone or who can benefit from being with others who understand what they are going through.
Meetings are held bi-monthly on the Zoom platform.
To attend, contact us via the 1800 644 189 health line and register your email details to receive your Zoom link.
Treatments and Professional Support
Current treatments for PSA, MSA and CBS are symptom driven, so therapies and strategies are required to help people with Atypical Parkinson’s and carers to make the most of living with the condition.
The best practice approach requires a neurologist specialising in movement disorders, an understanding GP and a multi-disciplinary team. This is optimally through a Movement Disorder Clinic, however for many people this is not possible due to geographical location.
Specialist support beneficial for people with Atypical Parkinson’s can include a:
- physiotherapist to assess mobility, provide appropriate walking aids and help maintain safe mobility as long as possible
- speech pathologist to assess and manage saliva, swallowing and communication changes
- occupational therapist to assess and provide equipment and strategies to maintain independence
- social worker to help organise support systems and respite
- psychologist and neuropsychologist to assist with emotional needs and mood changes and adapting to thinking difficulties and changes in behaviour
- Parkinson’s Nurse who specialise in Atypical Parkinson’s.
YOU ARE NOT ALONE
No-one has to face Atypical Parkinson’s alone.
Our Health Team offers a national specialist support for individuals and families and can help with information on symptom management, specialist support services, health-related benefits and entitlements and everyday living.
As families and people affected by one of these conditions often come into contact with health professionals with no knowledge of their condition, we can also provide specific information for, and advocate on your behalf, to medical and healthcare professionals.
This service is available by phoning 1800 644 189 from 9am – 5pm on weekdays (messages can be left after hours) or email, firstname.lastname@example.org.
People living with Atypical Parkinson’s – and their carers – need to continue to take precautions to prevent exposure to the coronavirus. This is because COVID-19 can infect the entire respiratory system and is likely to cause pneumonia, especially in people living with pre-existing conditions
This can cause complications for people with Atypical Parkinson’s, particularly those with more advanced symptoms, which may include difficulty swallowing or coughing up secretions, which can collect in the throat causing a gurgly voice or drip into the lungs causing chest infection and sometimes pneumonia.
In addition, a person with Atypical Parkinson’s may have some difficulties coughing up of the lung’s secretions, allowing the secretions to fill spaces in the lungs where air should be flowing, reducing the ability of oxygen to reach the tissues.
Keep track of all the latest Victorian updates via the Department of Health and Human Services.
COVID-19 vaccination program
People with Atypical Parkinson’s – as well as their carers – are eligible for COVID-19 vaccination in Stage 1B, which has commenced roll-out.
Parkinson’s Victoria recommends you discuss the COVID-19 vaccination with your GP or Neurologist and in line with recommendations of the International Movement Disorder Society and Australian Government advice, encourages people living with Parkinson’s and Atypical Parkinson’s to receive the COVID-19 vaccination.
This recommendation is given because of the overwhelming benefits, with the risks being the same for people living with Parkinson’s as with the aged matched general population.
Read Parkinson’s Victoria’s COVID-19 vaccination statement.
Ask the Doctor webinar
On 6 April, the US-based CureforPSP, hosted a webinar with Lawrence I. Golbe MD, one of the world’s leading clinical experts in PSP and related neurodegenerative conditions.
Dr. Golbe is the author of A Clinician’s Guide to Progressive Supranuclear Palsy. In the webinar, Dr. Golbe answered questions submitted by patients and families about PSP, MSA, and CBS.
A world-wide approach
Parkinson’s Victoria is one of 12 associations working as a single international body to deliver an increased focus into PSP|CBD research.
PROMOTUS, the PSP|CBD Global Alliance was formed in June 2019 to:
- represent the views of national PSP|CBD associations, providing a single point of contact for pharmaceutical companies and researchers
- provide best practice care and support for people affected by the conditions
- encourage research into PSP|CBD and ensure that research outcomes are disseminated around the world
- partner with pharmaceutical companies and bio-techs to facilitate easier access to patients for clinical trials
- grow the network of PSP|CBD associations around the world to reach and support more people affected by the conditions.
PSP on Primetime TV
A musical “dramedy” streaming in Australian on Stan features a main character with PSP. Zoey's Extraordinary Playlist is about a young woman who starts hallucinating – hearing people’s inner-most thoughts in song - after having an MRI. This allows her to re-connect with her father, who has PSP and is unable to communicate.
The series follows Zoey as she struggles with her new “superpower,” fearing it may be a symptom of her own potential impending neurological disease diagnosis, while also using it to communicate with her father again and see the world in a whole new light.
The show was created by Austin Winsberg, who was inspired to write it after his father died in 2011 following a battle with PSP.
“For the last six months that my dad was alive, we didn’t really know how much he was processing, if he was processing what was really going on, in his brain.” Winsberg told US media.
Treatments and Professional Support
Information about medications, surgical options and professional support available for people living with Parkinson’s
Information For You
Personal stories and information about resources and publications in English and other languages, to assist people living with Parkinson’s feel more informed.