Atypical Parkinson’s, PSP, MSA and CBS
Welcome to the new home of PSP Australia. Here you’ll find information and support for people diagnosed with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) and Corticobasal Syndrome (CBS), conditions often clinically defined as Atypical Parkinson’s. This information is also useful for family members, friends, carers, and health professionals. PSP Australia was established as a support group in 2002 by people with personal experience of living with PSP. Their deep understanding has informed our ongoing learnings about the Atypical conditions – PSP, MSA and CBS. It has reinforced to us how important clear and accurate information is in helping people with these conditions fight to live full and active lives for as long as their symptoms progress.
Fight Parkinson’s is now Australia's leading Atypical Parkinson’s support organisation, with a dedicated commitment to research, education, and support.
PSP, MSA and CBS may present with symptoms similar to those of Parkinson’s, but each condition progresses differently and affects people in different ways. There are no treatments and there is currently no cure.
Atypical Parkinson's Peer Support Group
Fight Parkinson’s 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 is welcome to attend, along with caregivers, 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 done through a Movement Disorder Clinic, however for many people this is not possible due to geographical location.
Specialist support beneficial for people with these conditions can include:
- a physiotherapist to assess mobility, provide appropriate walking aids and help maintain safe mobility as long as possible
- a speech pathologist to assess and manage saliva, swallowing and communication changes
- an occupational therapist to assess and provide equipment and strategies to maintain independence
- a social worker to help organise support systems and respite
- a psychologist and neuropsychologist to assist with emotional needs and mood changes and adapting to thinking difficulties and changes in behaviour
- a Parkinson’s Nurse who specialises in Atypical Parkinson’s.
YOU ARE NOT ALONE
No-one has to face Atypical Parkinson’s alone.
Our Health Team offers 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 or limited 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 Fight Parkinson’s on 03 8809 0400 from 9am – 5pm on weekdays (messages can be left after hours) or email firstname.lastname@example.org.