Progressive Supranuclear Palsy (PSP) Resources

If you or someone you know is having difficulty obtaining the necessities needed to address symptoms of PSP, please contact our nonprofit to request support: info@pspcbdfoundation.org

Oral Hygiene Is extremely important and we want to help!

Items we provide, but not limited to:

  • Toothbrushes/toothpaste
  • Dental Tips
  • Mouthwash
  • No-rinse mouth cleaner

Staying clean and dry is important! We are here to help!

Items we provide, but not limited to:

  • Bed pads
  • Depends
  • Z-guard paste
  • Cushion raised toilet seats

Staying safe matters! We can help with assistive equipment/products:

Items we provide, but not limited to:

  • bedside railings
  • sound-room monitors
  • Low-Tech Alternative Communication Cards
  • Nosey Cups
  •  SimplyThick Gel Thickener

Learn more about Progressive Supranuclear Palsy:

Resources/References for supporting the diagnosis:

* Disclaimer* Links/companies provided below are not affiliated with PSP&CBD Foundation Inc. and are meant to serve as a reference/resource for information provided on our website. Please proceed with caution when researching resources provided outside of our website below such as: assistive technology, companies, etc. and always consult with your local care team prior to trialing any assistive equipment, etc. Please contact us directly if you have any questions or concerns regarding information provided on our website. 

Individualized Care is Required!

Individualized care improves quality of life!! Multidisciplinary care team of support and professionals is extremely important. Individuals should have a multidisciplinary team of professionals to include, but not limited to:

  • Neurologist
  • General Physician
  • Neuropsychiatrist
  • Ophthalmologist
  • Nurse
  • Occupational therapist
  • Physical therapist
  • Speech-language pathologist
  • Dietitian
  • Social worker/care manager

Individualized care team will provide compensatory techniques, assistive equipment, and exercises to manage symptoms of PSP. These professionals will also ensure you are receiving any and all support and assistance available.

If you have not already, please check out: Best Practices of Clinical Management of PSP and CBS/CBD: A Consensus of CUREPSP Centers of Care

Advanced Care Planning Recommendations: Advanced Care Planning Knowledge for the Future Handout

Research & Clinical Trial Resources: 

  • AllStripes PSP Program for Accelerating Drug Development: Contributes to multiple PSP research efforts! *Caregivers of individuals who have passed away from PSP are able to sign up so that their medical records can be included in research. The policies around how long medical records of those who have passed are retained vary among hospitals and health systems, with the average being between 5–10 years. We greatly appreciate the caregivers/spouses who honor their loved ones by helping to advance research of PSP in memory of their beloved individual.*

  • Progressive Supranuclear Palsy Clinical Trial Search

Online Support Groups for PSP Resource:

Closed Facebook PSP Support Group

Pain Management Resource:

As people with PSP and CBD progress, they may be unable to accurately identify when they are in pain. This can possibly lead to overidentifying pain and mismanagement of pain. The PSP and CBD Foundation has provided a non-verbal pain scale from the Department of Health to help caregivers and medical professionals accurately identify pain in a person with PSP and CBD.: See: FLACC Pain Scale  

Communication & Augmentative and Alternative Communication Resources:

A few Communication strategies are provided below to assist a communication partner in communicating with an individual with PSP

  • Ask Yes/No Questions instead of open-ended questions
  • Speak slow and with short phrases
  • Provide plenty of “wait time” for responses
  • Watch their eye tracking and body language/gestures

People with PSP may present with dysarthria, aphasia, and/or apraxia of speech. Accessibility to Alternative communication helps improve one’s quality of life!! Consult your local Speech-language Pathologist who specializes in neurodegenerative diseases and ask about augmentative and alternative communication options available! Th SLP will determine best modes of alternative communication. Some companies utilized to support AAC determination are (not limited to):

Tobi Dynavox

Lingraphica

Coughdrop

 Talk To Me Technologies: We Go

Message and/or Voice Banking may also be an option depending on current expressive language function. Voice banking allows for a custom synthesized voice based on your speech samples. Message banking allows individual to record meaningful phrases that can be utilized for communication attempts or for individuals in the family to hear at a later date. See below a list of companies that provide voice and/or message banking, as well as a youtube video example of voice banking below.

Voice Banking Options (not limited to:) In order from least to most expensive. 

Creating Personal Voices For All (modeltalker.org)

HOME | The Voice Keeper

CereVoice Me Voice Cloning Service | CereProc Text-to-Speech

my-own-voice (acapela-group.com) 19+ different languages

VocaliD – Your voice AI company, bringing things that talk to life.

Ochsner Patient Story

Online Therapy Resources for Speech/language and Physical Exercise:

Speech/Language Therapy Resource: The Voice Project

Physical Therapy Exercise Resource: Home – SmartXPD

Pallative Care Resource:

Pallative Care in Progressive Supranuclear Palsy, 50 years of PSP

Reading Resources:

National Library Service (NLS) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical disability that prevents them from reading or holding the printed page. Through a national network of cooperating libraries, NLS circulates books and magazines in braille or audio formats, delivered by postage-free mail or instantly downloadable. National Library Service website

United States Social Security Information

Social Security website

Social Security Disability:

PSP is an approved diagnosis on the Compassionate Allowance Lists through Social Security Administration. Allowing the person with the condition to be more likely to receive benefits through Social Security Administration, given the person has a diagnosis.

Social Security Administration List of Compassionate Allowance Diagnoses:

 

Brain Donation Resource Information

Consider the gift of continued giving with Brain Donation and further research into Progressive Supra-nuclear Palsy for over a decade to come! Brain donations help scientists find the cause and cure for PSP, as well as other neurodegenerative diseases.

United States Brain Donation Information

The Mayo Clinic brain bank provides a postmortem report of confirmation of diagnosis to the family.

For questions concerning brain tissue donations please contact:

Rachel LaPaille-Harwood
Brain Bank Coordinator

Mayo Clinic Jacksonville, Florida

Office: 904-953-2439

Europe Brain Bank Information:

EUROPEAN BRAIN BANK Website

 

Other 501c3 Charity Organizations who Benefit those with PSP: 

CUREPSP

PSPA

Phone: 540-425-0467

Your contribution makes a huge difference in the lives of many!