Understanding and Navigating Progressive Supranuclear Palsy (PSP): A Resource Guide
Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease that affects movement, balance, vision, and speech. This resource guide aims to empower you and your loved ones with essential information and support options as you navigate this journey.
Understanding PSP
CurePSP: https://www.psp.org/ - The leading source of information and support for PSP, CBD, MSA, and other atypical Parkinsonian disorders. Offers comprehensive resources and a patient registry.
National Institute of Neurological Disorders and Stroke (NINDS): https://catalog.ninds.nih.gov/publications/progressive-supranuclear-palsy - Provides in-depth information on PSP causes, symptoms, diagnosis, and treatment options.
Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/care-at-mayo-clinic/mac-20355668 - Delivers a patient-centered overview of PSP, including symptoms, diagnosis, and treatment approaches.
Living with PSP in Maryland:
National Organization for Rare Disorders (NORD): https://www.psp.org/ineedsupport/online-support-groups/ - Connects individuals with PSP to resources and support groups. Consider contacting NORD to inquire about Maryland-specific support groups.
The Michael J. Fox Foundation: https://www.michaeljfox.org/ - While focusing on Parkinson's, the foundation also offers resources and support for those living with PSP and other atypical Parkinsonian disorders.
Caregiver Resources: https://www.caregiver.org/ - Provides practical guidance and support for caregivers of individuals with PSP.
Maryland Movement Disorders Specialists:
University of Maryland, Baltimore Movement Disorders Clinic: https://www.umms.org/ummc/health-services/neurology/services/parkinsons-disease - While their focus is on Parkinson's, some movement disorder specialists may also have experience with PSP.
Estate Planning: Ensure your wishes are known and your assets are protected, especially if long-term care is needed.
Long-Term Care Planning: Explore options for future care needs and potential financial implications.
Power of Attorney & Advance Directives: Designate someone to make decisions on your behalf if you are unable to do so.
Legal and Financial Considerations:
Clinical Trials and Research:
ClinicalTrials.gov: https://clinicaltrials.gov/ - Search for ongoing clinical trials for PSP and other neurodegenerative diseases, filtering by location to include Maryland.
CurePSP Research Updates: https://www.psp.org/ - Stay informed about the latest research efforts in PSP by following CurePSP.
Remember: You are not alone. While PSP is a challenging disease, a network of resources and support exists to help navigate this journey.
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