Living with PSP, CBS or MSA
There are a number of conditions which look like Parkinson’s at first, but progress differently, and are actually a separate condition altogether.
Sometimes these conditions are referred to as “atypical Parkinson’s” or “Parkinson’s plus”. However, the way they progress and the way they affect people is very different to Parkinson’s.
Progressive Supranuclear Palsy (PSP) is a rare condition affecting parts of the brain that control walking, eye movements, balance, speech and swallowing.
- Progressive - means the symptoms get worse over time
- Supranuclear - refers to the part of the brain that is affected
- Palsy - means a weakness or paralysis in a part of the body
Currently there are no known treatments to cure PSP or ways to prevent it from occurring. Treatments, therapies and strategies are available to help people with PSP and their families and carers to make the most of living with the condition.
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
Treatments and therapies are available to help manage symptoms of MSA, however there is no cure or ways to prevent it from occurring or slow its progression.
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), but "Syndrome" is the preferred term.
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 (CBD) 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.
Treatments and therapies are available to help manage symptoms of CBS, however there is no cure or ways to prevent it from occurring or slow its progression.
Support for you
PSP and Aytical Parkinson's Peer Support Group
Anyone living with PSP is welcome to attend Parkinson’s Victoria Peer Support Group meetings.
However, there is also a Peer Support Group that meets to specifically address the needs of those living with PSP and other Atypical Parkinson's conditions, as well as their family and carers.
The PSP Peer Support Group meetings offer an informal environment for information sharing and socialisation, as well as presentations by professionals.
Meetings are held at the Cheltenham Library, 12 Stanley Ave, Cheltenham from 10am.
NOTE: This group is currently not meeting due to COVID-19 restrictions. Call the Parkinson's Victoria Health Team on 1800 644 189 for information, support and advice during this time.
Help from around the world
In June 2019, seven PSP and CBD (CBS) associations from around the world founded PROMOTUS, the PSP|CBD Global Alliance.
The main objectives are 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.
Since founding PROMOTUS, the Alliance has been joined by representative associations from five other nations, including PSP Australia, auspiced by Parkinson’s Victoria.
The PROMOTUS International PSP Directory includes links to member organisation websites, offering an even wider range of information and resouces to people living with PSP and CBS and their carers and families.
People living with Atypical Parkinson’s – and their carers – should be taking precautions to prevent exposure to the coronavirus. That is because COVID-19 can infect the entire respiratory system and from what we have been able to observe in other countries, 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.
In March, the Association of British Neurologists published advice which indicated neurological conditions associated with weakness of the swallowing mechanism (bulbar weakness), weakness of respiratory muscles or cardiac function (such as motor neurone disease and some myopathies) increased the risk of more severe infection.
Good hygiene and taking care when interacting with other people are the best defences against coronavirus:
- cover your coughs and sneezes with your elbow or a tissue
- dispose of used tissues immediately into a rubbish bin and wash your hands
- if you need assistance, your carer should wash their hands thoroughly before and after assisting you
- wash your hands often with soap and water, including before and after eating and when you have been out to shops or other places
- use alcohol-based hand sanitisers (60% alcohol), where available
- clean and disinfect surfaces you have touched
- stay at home and avoid contact with others but if out, stay 1.5 metres away — 2 arms’ length — from other people
Assistance with food and meals
Commonwealth funded providers, such as Meals on Wheels, provide access to regular food supplies and prepared meals. If you are in urgent need of support, call My Aged Care on 1800 200 422 and they can refer you directly to these services in your local area.
If you are not registered with My Aged Care and are 65 years or over, you can call My Aged Care on 1800 200 422 to register. Services can be set up quickly for up to 6 weeks without the need for an assessment.
If you are already receiving aged care services, you can also arrange this directly with your provider.
Prioritised online grocery ordering
The Commonwealth Government has worked with a number of grocery suppliers on priority access to their online and telephone shopping service for older and vulnerable people.
If you are registered with My Aged Care, you can provide your My Aged Care ID number to access priority delivery. If not registered, and aged 65 years or over, call My Aged Care on 1800 200 422.
As of 22 April 2020, Coles and Woolworths have also re-introduced their online delivery services. IGA also has a priority grocery delivery service for vulnerable people.
Ordering prescription medications from home
Your doctor can give you a prescription via telehealth (you can access bulk-billed telehealth services from your doctor, nurse or mental health professional via phone or video-conference until September 2020).
A digital copy can be used to fill your prescription (your doctor will send the paper copy to the pharmacy within 15 days). If you already have a paper prescription/repeat at home, you can send a digital copy to your pharmacy to fill – and send them the paper copy within 15 days.
Most medicines can be supplied this way. Your doctor will tell you if your medication is restricted.
Home delivery for medicines
Call your pharmacy to check they have your medicine in stock (or can order it for you) and deliver it to your home. Once the pharmacy has received the digital copy, they can deliver it the address on the prescription.
Make sure your doctor and pharmacist have your correct address.
If you need a prescription medication but cannot leave your home, you can have it delivered from your regular pharmacy through the Home Medicines Service. Speak to your local pharmacist for details.
Carer contingency planning
There are a range of supports that can be rapidly put into place if your carer became unwell. If you already receive some support, ask your care provider to outline there contingency plan. If you currently only receive care from your family, find out more information on supports at Carers Victoria.
Along with maintaining our physical health and strength during this time, we also need to focus on mental health – particularly as restrictions on our lives outside our primary residences continues for the foreseeable future.
The Department of Health and Human Services has a range of COVID-19 specific information and video resources to help people look after their mental health during the restrictions.
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.
PSP on Primetime TV
A musical “dramedy” currently 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.
We are here to help
Parkinson’s Victoria supports all Australians living with PSP, MSA and CBS, and their families and carers. If you have any questions or concerns, the Parkinson’s Victoria Health Team is here to help. Call 1800 644 189 9am – 5pm Monday to Friday. Messages can be left after hours.
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.