Navigating Advanced Stages
With progressive diagnoses like PSP, CBD and MSA come discussions and decisions around care needs, worsening symptoms and logistical considerations. CurePSP has resources to help sort through the advanced stages of PSP, CBD and MSA.
Support Group for Care Partners of People with Advanced PSP/CBD/MSA
Webinars
"What to expect" and "how to plan ahead" are often difficult questions to answer, yet they remain important and frequent questions asked by our community members. In this webinar from Spring 2024, Dr. Jori Fleisher, CurePSP Center of Care director at Rush University, discussed several of the key symptoms that may arise as people move farther in their journeys with a diagnosis of PSP, CBD or MSA, as well as potential strategies for managing them. She also talked about prognosis, end-of-life care, and optimizing quality of life regardless of where someone is in the disease course.
Recording can be viewed here.
Navigating the uncertainties of the future when living with PSP, CBD and MSA can be overwhelming. In this webinar from Spring 2022, Adriana Gonzalez, LCSW, palliative care-specialized social worker of the CurePSP Center of Care at the University of California San Diego, provided information on the types of decisions that families may be faced with in a medical emergency and offered tools to have open conversations with support networks and documenting wishes.
Recording can be viewed here.
"What to expect" and "how to plan ahead" are often difficult questions to answer, yet they remain important and frequent questions asked by our community members. In this webinar from Spring 2024, Dr. Jori Fleisher, CurePSP Center of Care director at Rush University, discussed several of the key symptoms that may arise as people move farther in their journeys with a diagnosis of PSP, CBD or MSA, as well as potential strategies for managing them. She also talked about prognosis, end-of-life care, and optimizing quality of life regardless of where someone is in the disease course.
Recording can be viewed here.
"What to expect" and "how to plan ahead" are often difficult questions to answer, yet they remain important and frequent questions asked by our community members. In this webinar from Spring 2024, Dr. Jori Fleisher, CurePSP Center of Care director at Rush University, discussed several of the key symptoms that may arise as people move farther in their journeys with a diagnosis of PSP, CBD or MSA, as well as potential strategies for managing them. She also talked about prognosis, end-of-life care, and optimizing quality of life regardless of where someone is in the disease course.
Recording can be viewed here.
Navigating the uncertainties of the future when living with PSP, CBD and MSA can be overwhelming. In this webinar from Spring 2022, Adriana Gonzalez, LCSW, palliative care-specialized social worker of the CurePSP Center of Care at the University of California San Diego, provided information on the types of decisions that families may be faced with in a medical emergency and offered tools to have open conversations with support networks and documenting wishes.
Recording can be viewed here.
Navigating the uncertainties of the future when living with PSP, CBD and MSA can be overwhelming. In this webinar from Spring 2022, Adriana Gonzalez, LCSW, palliative care-specialized social worker of the CurePSP Center of Care at the University of California San Diego, provided information on the types of decisions that families may be faced with in a medical emergency and offered tools to have open conversations with support networks and documenting wishes.
Recording can be viewed here.
Educational Resources
There is often confusion about the purposes of palliative and hospice care, and when to consider them. This resource explains the benefits of both palliative care and hospice care and when to seek them out. While each person PSP, CBD or MSA will have their own unique disease journey, there are some general paths that each of these diseases tend to follow. These disease-specific documents on the four disease stages can help with preparations for future changes. Deciding whether, when and how to seek additional support within the home can be a big decision to make. This guide can help assess what level of care is currently needed and future, identify desired services and considerations for future care.
Advance healthcare planning can be daunting. This resource provides clarity and can help start discussions about a person’s wishes for advanced disease stages and end of life.
Brain Donation
Brain donations, or the donation of brain tissue, can help researchers understand what happens to brains with neurodegenerative diseases. Brain donations have led, and will lead, to breakthroughs in science and the development of treatments and—ultimately—cures for PSP, CBD, MSA and related diseases.
Through the CurePSP Brain Donation program, people with PSP, CBD or MSA can donate their brain tissue to help advance research on these diseases.
Learn more about CurePSP's Brain Donation Program by visiting this page.
Quality of Life Respite Grant
Brain donations, or the donation of brain tissue, can help researchers understand what happens to brains with neurodegenerative diseases. Brain donations have led, and will lead, to breakthroughs in science and the development of treatments and—ultimately—cures for PSP, CBD, MSA and related diseases.
Through the CurePSP Brain Donation program, people with PSP, CBD or MSA can donate their brain tissue to help advance research on these diseases.
Learn more about CurePSP's Brain Donation Program by visiting this page.
Quality of Life Respite Grant
The CurePSP Quality of Life Respite Grant offers 100-hours of in-home care to those living with PSP, CBD or MSA. To learn more, click here to see the eligibility requirements and access the application on the Quality of Life webpage.
Assistive Devices Webpage
The CurePSP Quality of Life Respite Grant offers 100-hours of in-home care to those living with PSP, CBD or MSA. To learn more, click here to see the eligibility requirements and access the application on the Quality of Life webpage.
Assistive Devices Webpage
CurePSP has collected a list of assistive devices and adaptive equipment from patients and families. See suggestions for adaptations for specific sets of symptoms by clicking here.
CurePSP has collected a list of assistive devices and adaptive equipment from patients and families. See suggestions for adaptations for specific sets of symptoms by clicking here.