Here’s what we’ve heard from the PSP community, and how we offer support to people who live with PSP, their loved ones, and healthcare professionals:
🗣️ There is a lack of visibility and awareness of Progressive Supranuclear Palsy as a neurological condition.
✅ Fight Parkinson’s will continue to recognise and promote PSP Awareness Month by sharing relevant resources and stories of lived experience.
As Australia’s leading organisation offering support for people with PSP, we also have a dedicated commitment to research, education, and support to help people with PSP live full and active lives for as long as possible.
Learn more about PSP by clicking here.
🗣️ There is a misconception that PSP is the same thing as Parkinson’s.
✅ Fight Parkinson’s recognises that a diagnosis of PSP is challenging, as early symptoms are similar to those of Parkinson’s, which may lead to misdiagnosis or delay of an accurate diagnosis, which in turn can then delay appropriate care.
Although PSP and Parkinson’s are different and there can be frustration around lack of recognition and validation, there are therapies and strategies available to help people with PSP—and their families and carers—to make the most of living with the condition.
The Fight Parkinson’s Multidisciplinary Health Team is honoured to provide guidance on how to access these therapies and strategies.
Free call: 1800 931 031*
*A free translation service is available on this line.
Email: [email protected]
🗣️ Continually explaining what your, or your loved one’s diagnosis is, can be fatiguing.
✅ No-one has to face PSP alone.
Fight Parkinson’s offers national specialist support for individuals and families and can help with information on symptom management, services, health-related benefits, and entitlements and everyday living.
As families and people affected by PSP often come into contact with healthcare 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 1800 931 031 from 9am – 5pm on weekdays.
🗣️ Having to explain my diagnosis to a healthcare professional does not instil confidence that they will deliver good care.
✅ Fight Parkinson’s offers comprehensive training and education for members of the community, as well as healthcare professionals.
Community members: Free Online Parkinson’s Courses | Fight Parkinson’s
Fight Parkinson’s Community Learning Hub hosts free online, on-demand courses for the Parkinson’s community. The courses have been designed so people can learn in their own time and at their own pace, pausing and continuing as suits them. Offering a free online education program means anyone can access the information they need, regardless of their personal circumstances.
Available and free courses include:
- Recently Diagnosed
- Exercise and Parkinson’s
- Women and Parkinson’s, and more.
Healthcare professionals: Fight Parkinson’s Health Professionals Learning Hub.
Each course has been developed in conjunction with Fight Parkinson’s subject matter experts and provides training that enhances the skills and capabilities of a wide range of healthcare professionals dedicated to supporting people living with Parkinson’s (including Young-Onset) and Atypical Parkinson’s (including PSP, MSA, and CBS).
Available courses include:
- Introduction to Progressive Supranuclear Palsy. This is a FREE course for people working in health and aged care settings. It’s an overview of PSP symptoms and strategies for symptom management. This course is available with heartfelt thanks to the John and Peta Seymour Foundation.
- Advanced and Palliative Care for Parkinson’s. The first section of this course is an introduction to Atypical Parkinson’s. It introduces PSP (and CBS and MSA) and then addresses complex Parkinson’s symptoms and their management. This course is a PAID course.
Whether you are someone who lives with Progressive Supranuclear Palsy, know a friend or family member with PSP, or care for someone with PSP, please remember that you are not alone.
