Learn More About Corticobasal Syndrome/Degeneration:

• What is CBD Handout

• AFTD: Corticobasal Syndrome & Corticobasal Degeneration: The Basics and What you need to know.

• Visual signs and symptoms of corticobasal degeneration

• Criteria for the Diagnosis of CBD

• Corticobasal degeneration and corticobasal syndrome: A review

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 CBS/CBD. These professionals will also ensure you are receiving any and all support and assistance available!

Resource for Best Practices:

Best Practices of Clinical Management for PSP and CBS/CBD: A Consensus Statement of the CUREPSP Centers of Care

Advanced Care Planning:

• Advanced Care Planning, Knowledge for the Future Handout

Mental and Physical Health:

• Fostering Mental and Physical Health with PSP and CBD

Support Groups on Social Media:

Closed Facebook Support Group for CBD

References to support 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. 

Clinical Trial Information: 

• Clinical Trials for Corticobasal Degeneration

GENETIC TESTING:

Probably Genetics NO cost Testing with Pre and Post Genetic Counseling: Probably Genetic is a group of geneticists, engineers, and patients seeking to help people with rare diseases access affordable genetic testing. The company has recently launched a no cost genetic testing program for people with neurodegenerative and dementia conditions as part of the The Bluefield Project to Cure Frontotemporal Dementia (FTD). Individuals who meet the criteria can receive whole genome sequencing (WGS) and C9orf72 (C9) hexanucleotide repeat testing at no cost. This testing analyzes the entirety of your DNA for disease-causing mutations associated with FTD and and other conditions. Learn more about Probably Genetics and No Cost Testing and how to start your testing here: 

Pain Management: 

As people with CBS/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.  Please see FLACC Pain Scale as a reference:  FLACC Pain Scale 

Communication & Augmentative and Alternative Communication:

A few Communication Strategies are listed below for the communication partner to support an individual diagnosed with CBD:

• Ask yes/no questions, instead of open-ended questions
• Speak slow and with short phrases
• Provide plenty of “wait time” for response 
• Watch their eye tracking and body language/gestures

People with 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! Message and/or Voice Banking may be an option if expressive language is still fluent. Eye gaze technology may also be an option as well, depending on difficulty with ocular motor movements. The SLP will determine best modes of alternative communication. Some Companies utilized to support AAC determination are (not limited to):

Tobi Dynavox

Lingraphica

CoughDrop

wego™ Speech Generating Devices (talktometechnologies.com)

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.

Online Classes for Speech/language and Physical Exercises, Resources:

Speech/language: Daily Online Speech Exercises (parkinsonvoiceproject.org)

Physical Therapy: Free Resources – SmartXPD

Mobility Supports: 

Car Transfer Aids :: help getting in & out of a car. (mobility-aids.com)

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

United States: Social Security Disability Help:

CBS/CBD 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 SSA, given the person has a diagnosis.

Social Security Administration List of Compassionate Allowance Diagnoses

You may consider the gift of continued giving with Brain Donation and further research into Corticobasal Syndrome/Degeneration 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. Please see below resources to retrieve more detailed information related to brain donation options. 

USA BRAIN BANK INFORMATION:​

The brain bank at the Mayo Clinic in Jacksonville, Florida provides a smooth process for people
and families to generously give the gift of resources desperately needed to investigate these neurodegenerative diseases. The Mayo
Clinic brain bank provides a postmortem report of confirmation of diagnosis to the family.

For questions concerning brain tissue donations please contact:

Other 501c3 nonprofit organizations benefitting CBS/CBD:

CUREPSP

PSPA