PSP

If you or someone you know are struggling with the necessities needed to address symptoms with PSP and/or CBD please contact the nonprofit to request support: info@pspcbdfoundation.org.

Items we provide based on financial need:

  • Depends
  • Simply Thick Thickener
  • Bed pads
  • Dental Tips
  • Toothpaste
  • Mouthwash
  • No-rinse cleaner
  • gait belts
  • Z guard paste
  • bedside railings
  • sound/room monitors
  • Low Tech Alternative Communication Cards
  • Nosey Cups
  • Cushion raised toilet seats

Resources for Progressive Supranuclear Palsy:

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.

FLACC Pain Scale

Individualized Care

Individualized care improves quality of life!! Make sure to consult with your local:

  • speech-language pathologist
  • occupational therapist
  • physical therapist

They can offer compensatory techniques and exercises to manage the symptoms of PSP and CBD.

Augmentative and Alternative Communication

People with PSP and CBD may present with 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!

Consider Voice Banking!

Preserve your voice to utilize down the road on an alternative communication device or as a gift for your family to have forever: Voice Banking is not just for the neurodegenerative diseases ALS, it can be utilized for other neurodegenerative diseases as well!! See youtube videos below for examples of voice banking and consult your local Speech-language Pathologist who specializes in neurodegenerative diseases to ask about Voice Banking.

Ochsner Patient Story

 Support Groups:

Closed Facebook PSP Support Group

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 and CBD are approved diagnoses 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 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 and CBD, 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

 

Participate in Research from the comfort of your home:

RDMD is looking for patients with PSP to participate in their research program! 

To Find out more go to: www.rdmd.com/psp 

Phone: 757-896-3980

Connect: 

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