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

Resources for Progressive Supranuclear Palsy:

 

Pain Management:

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.

Augmentative and Alternative Communication

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!

Consider Message and/or 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

Participate in Research from the comfort of your home:

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

The caregivers of patients who have passed away are able to sign up so that their medical records can be included in research. The policies around how long medical records of deceased patients are retained vary among hospitals and health systems, with the average being between 5–10 years according to our operations team. We appreciate the caregivers who honor their loved ones by helping to advance research in their condition.

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

Johns Hopkins is looking for individuals with PSP or PD to participate in the “Biomarker Discovery and Validation in Progressive Supranuclear Palsy (PSP)” study which is nicknamed the DIVA-PSP study for short. The recruitment flyer is attached. The study is also interested in healthy volunteers including spouses and other non-blood related relatives or caregivers, though please note that if you are a blood relative of someone who has PSP, you cannot participate.

If you have any questions or would like to participate, please contact AJ Hall, who is in charge of this study. She works for John Hopkins Neurological department and is Senior Research Program Coordinator within the Movement Disorders Clinic. AJ Hall can be reached by email anytime at ahall52@jhmi.edu or phone at (410) 616-2813.

*Given the COVID-19 safety guidance and current travel policy, they are not actively seeing patients for in-person screening or baseline visits, but they are always happy to speak with interested individuals or their family members to conduct a telephone screening to determine eligibility and provide more details about the study in anticipation of resuming in person recruitment.*

Support Groups:

Closed Facebook PSP Support Group

Advanced Care Planning:

Advanced Care Planning Knowledge for the Future Handout

Pallative Care:

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 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, 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

Phone: 540-425-0467

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