A lot of people ask me for information that’s way above my pay grade – stuff not based on my own experience, but on what PSP actually is, what caregivers should do, and what symptoms to watch for. To help, I’ve put together a list of resources I know and have checked out. These are much better at dispensing fact-based information than I am.
This is just my personal list, but these are good resources. I’ll try to keep it up to date if I can, but please always consult your own medical advisor or professional. Note that each resource has its own style, data sources, and often refers to practices in a specific country. I’m not trying to be the owner of any master list, and I’m not employed by or partnered with any organization -except as a member of the support groups below. This is not a full or necessarily up-to-date list!
I don’t want to be the font of all knowledge, but in this list are support groups (private -you have to join) that I personally find very useful. And last but very much least, there’s some useful information in my own blogging: https://benlazpsp.com/about-me/ -(but it pales in comparison).
This link is also a button on my home page.
Guides to the Illness
- NIH/NINDS PSP Fact Sheet: Authoritative overview of PSP symptoms, diagnosis, management, and research. Link: https://www.ninds.nih.gov/health-information/disorders/progressive-supranuclear-palsy-psp
- PSP Association (UK) Personal Guide: UK-based resource with practical advice for living with PSP and supporting caregivers. Link: https://www.pspassociation.org.uk/wp-content/uploads/2024/02/Personal-Guide-to-PSP-Updated-address.pdf
- CurePSP Educational Resources: Comprehensive library of brochures, best practices, and patient/caregiver guides. Link: https://www.psp.org/educational-resources
- CurePSP Guidebook (PDF): Full-length guide covering PSP, CBD, and MSA with practical tips for patients and caregivers. Link: https://www.psp.org/assets/resources/items/65d6012f381852020-GUIDEBOOK_web.pdf
- Mayo Clinic PSP Guide: Clear guidance on diagnosis, treatment options, and symptom management strategies. Link: https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/diagnosis-treatment/drc-20355664
- UCSF Patient Guide: Plain-language guide to PSP symptoms, therapies, and lifestyle tips. Link: https://memory.ucsf.edu/sites/memory.ucsf.edu/files/wysiwyg/UCSF%20Dementia%20Patient%20Guide_PSP_11-3-17.pdf
Caregiver Guides
- CurePSP Care Partner Guidebook: Detailed guide for care partners with tips on daily care, emotional support, and planning. Link: https://www.psp.org/assets/resources/items/65d6015de072b2020-CAREPARTNERS-GUIDEBOOK_web.pdf
- CurePSP In-Home Care Guide: Step-by-step advice for managing professional in-home care and safety. Link: https://www.psp.org/assets/resources/items/65d6043a1fbfbIn-Home-Care_Final.pdf
- Compassion Crossing End-Stage PSP Guide: In-depth resource for families navigating late-stage PSP care and planning. Link: https://compassioncrossing.info/understanding-end-stage-psp-a-guide-for-families/
- Brain Support Network Top PSP Resources: Annotated PDF with curated PSP resources, webinars, and caregiver tips. Link: https://www.brainsupportnetwork.org/BSN-PSP-resources-2024-06.pdf
Support Networks & Practical Help
- PSP Awareness Caregiver Guide: Practical Q&A for caregivers of newly diagnosed PSP patients. Link: https://pspawareness.com/blogs/psp-q-a/a-guide-for-family-caregivers-of-loved-ones-newly-diagnosed-with-progressive-supranuclear-palsy-psp
- CurePSP Centers of Care & Support Groups: Find specialized care centers and connect with peer support communities – US. Link: https://www.psp.org/ineedsupport
- Clinical Trials Database of the NIH. Link: https://clinicaltrials.gov/
Online Support Communities I personally use
- PSP Awareness (Facebook): Active community sharing practical tips, emotional support, and real-life experiences. Link: https://www.facebook.com/groups/715872978888091
- CurePSP Support Group (Facebook): Official CurePSP group for patients and caregivers to connect and share resources. Link: https://www.facebook.com/groups/1113108690066631/
- PSP & CBD Support (Facebook): Group focused on PSP and CBD, offering advice and solidarity for families and patients. Link: https://www.facebook.com/groups/PSP.CBD/
- HealthUnlocked PSP Community: Forum-style platform for PSP discussions, questions, and peer support. Link: https://healthunlocked.com/psp
