Topic guides: Rare Dementia Support : Progressive Supranuclear Palsy

Books

Losing Kay: Living and Dying with Progressive Supranuclear Palsy by Keith B Simmons
Publication Date: 2022
The author writes about living with Progressive Supranuclear Palsy, a rare degenerative brain disease. This book chronicles the journey with the disease from earliest symptoms to diagnosis to life with the disease to loss and grief.
21st Century Progressive Supranuclear Palsy (PSP) Sourcebook
Publication Date: 2013
This comprehensive ebook provides authoritative information and practical advice from the nation's health experts about Progressive Supranuclear Palsy (PSP), also known as Steele-Richardson-Olszewski syndrome. Starting with the basics, and advancing to detailed patient-oriented and physician-quality information, the 21st Century Sourcebook series gives empowered patients, families, caregivers, nurses, and physicians the information they need to understand PSP.

PSP: Some Answers
Written in partnership with people living with PSP and healthcare professionals, this booklet provides answers to common questions around the diagnosis, symptoms, and management of progressive supranuclear palsy.
CurePSP Guidebook
The CurePSP Guidebook provides an in-depth look into the entire diagnosis journey and latest information on PSP, CBD and MSA.

Journal articles and papers

Progressive Supranuclear Palsy (2023)
Agarwal S, Gilbert R. Progressive Supranuclear Palsy. [Updated 2023 Mar 27].
Diagnosis and Management of Neurodegenerative Atypical Parkinsonism (2016)
Dolhun, R. (2016). Diagnosis and Management of Neurodegenerative Atypical Parkinsonism, The Michael J. Fox Foundation for Parkinson’s Research, https://www.michaeljfox.org/sites/default/files/media/document/WHITEPAPER_ATYPICAL_PARKINSONISM.pdf
The prevalence and incidence of progressive supranuclear palsy and corticobasal syndrome: a systematic review and meta-analysis (2023)
a systematic review of studies reporting incidence and prevalence of CBS and PSP. While some epidemiological studies have used the term corticobasal degeneration (CBD) we have used the term CBS throughout, as denoting the clinical syndrome. We have reserved the term CBD for the pathological diagnosis.
Lyons, S., Trépel, D., Lynch, T., Walsh, R., & O'Dowd, S. (2023). The prevalence and incidence of progressive supranuclear palsy and corticobasal syndrome: a systematic review and meta-analysis. Journal of neurology, 270(9), 4451–4465.
Quality of life in patients with progressive supranuclear palsy: a review of literature and implications for practice (2024)
Diagnosing PSP is challenging owing to the lack of tools for differential examination. Additionally, the pathomechanism of this disease is not sufficiently understood, and no treatment is currently available. Owing to the growing interest in the disease’s progression, evaluating the quality of life (QoL) for patients with PSP has become crucial. This review emphasizes the significance of QoL evaluation and its feasibility for practical implications, serving as an initial foundation for future research focused on the well-being of individuals affected by PSP.
Markiewicz, M., Madetko-Alster, N., & Alster, P. (2024). Quality of life in patients with progressive supranuclear palsy: A review of literature and implications for practice. Frontiers in Neurology, 15 https://doi.org/10.3389/fneur.2024.1476488

Websites

Living with Progressive Supranuclear Palsy (PSP)?
Informed about PSP including diagnosis, living PSP, resources and support.
Progressive Supranuclear Palsy - Monash Health
Progressive Supranuclear Palsy - Johns Hopkins
CurePSP
CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and fund critical research. Through our advocacy and support efforts, we enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP’s mission and all of our services.
PSP Association (UK)
PSP Association UK ihas some useful information. However, please note they are an international organisation and references to medication or support programs might not be applicable in Australia.