Living with Progressive Supranuclear Palsy

22/09/2021

Ms. Joellyn Fox discusses practical methods to improve everyday life for people dealing with progressive supranuclear palsy (PSP), corticobasal degeneration ...

25/01/2021

Dr. Golbe is a leading authority - if not the leading authority - on PSP diagnosis and treatment.

Join us today for Ask the Doctor with Lawrence I. Golbe, MD at 2pm EST! In this webinar, Dr. Golbe will cover the coronavirus (COVID-19) vaccine and discuss how PSP, CBD, and MSA are conditions that increase the risk of death from Covid-19, therefore, should qualify as underlying conditions warranting priority for receiving a Covid-19 vaccine. Lawrence I. Golbe, MD, is Emeritus Professor of Neurology at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ. He graduated from Brown University and New York University School of Medicine and did residency training at NYU/Bellevue before assuming his current position in 1983. He was Acting Chair of his department from 2000 to 2003 and was Program Director of its neurology residency from 2003 to 2018. His research is in the clinical genetics, clinimetrics, and epidemiology of parkinsonian disorders. Any medication referred to in this video should not be tried unless under a licensed professional's supervision. This webinar will be moderated by Joanna Teters, Community Outreach and Resource Manager at CurePSP. We encourage you to submit your questions prior to the start of the webinar to info@curepsp.org or through registration. We hope to connect with many of you!

https://www.eventbrite.com/e/ask-the-doctor-with-dr-lawrence-i-golbe-registration-135994000717?aff=erelpanelorg

13/08/2020

Interesting piece about potential PSP treatment.

We spoke to Asceneuron CEO and founder Dirk Beher about the remaining challenges of tackling CNS diseases like PSP and Alzheimer's

28/07/2020

In this webinar, Dr. Pantelyat discusses the connection between music and movement disorders like PSP, Parkinson's disease, and more.

07/07/2020

Lots of jargon here but the main takeaway is there may be better tools on the horizon for early PSP diagnosis! It's great it's being researched; PSP is often passed over versus other dementias.
https://jamanetwork.com/journals/jamaneurology/fullarticle/2768084?guestAccessKey=94f52cd9-b471-418b-8601-1b0c1cc4e03a&utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jamaneurology&utm_content=olf&utm_term=070720

This cross-sectional study investigates the potential of novel tau radiotracer 18F-PI-2620 as a biomarker in patients with clinically diagnosed progressive supranuclear palsy.

11/06/2020

Hello all - Live conversation with Dr. Lawrence Golbe, one of the world foremost PSP experts, online RIGHT NOW: https://www.facebook.com/watch/live/?v=1584513251705444¬if_id=1591905999148964¬if_t=live_video

21/04/2020

While not specifically about PSP, this may be helpful as there are similar symptoms.

Register for each free livestream webinar through the Zoom links below. Each webinar will be recorded. “What is Lewy body dementia and how is it treated?” by William Mantyh, MD Recording at youtu.be/Db5H0A_XiQw “Behavior and mood symptoms in Lewy body dementia” by Jennifer Merrilees, RN, PhD...

11/01/2020

21/10/2019

For those of us worried about genetic risks. I wonder if trying to exercise as much as possible throughout the course of the disease, too, may slow the effects of PSP? Note: This is behind a paywall but a certain number of articles are free. https://www.nytimes.com/2019/10/21/upshot/alzheimers-exercise-brain-apps.html?fallback=0&recId=1SWPyn0xh1y3gLuCKW8vmg5r20P&locked=0&geoContinent=NA&geoRegion=VA&recAlloc=control&geoCountry=US&blockId=home-discovery-vi-prg&imp_id=115396328&action=click&module=Discovery&pgtype=Homepage

Brain-training apps can’t match the several ways that exercise benefits the mind, research shows.

03/10/2019

Another very interesting study! Has anyone had an experience with chair yoga? https://www.sciencedaily.com/releases/2019/10/191002102800.htm

Researchers assessed the ability of older adults with advanced dementia to participate in non-pharmacological interventions and compared chair yoga with chair-based exercise and music therapy. Results showed that participants with moderate-to-severe dementia could safely adhere to non-pharmacologica...

02/10/2019

Interesting! I think this applies to other movement disorders.
When mom couldn't walk, she could still stand up and dance a little. Inthttps://www.artsandmindlab.org/music-parkinsons-brain/?mc_cid=c41345d311&mc_eid=9f9ae24093

21/09/2019

Unfortunately, PSP isn't included, but I'm glad to see that researchers are increasingly looking beyond Alzheimer's.

Walking may be a key clinical tool in helping medics accurately identify the specific type of dementia a patient has, pioneering research has revealed.

06/08/2019

Hello everyone - folks have been asking about posting themselves so I have created a related group. It is a closed and moderated group, so I'll have to wave you through. Hope the discussions are fruitful!

18/07/2019

A helpful primer. This magazine, Brain&Life, is free in the U.S., by the way - you can sign up on their website.

Not all dementia is Alzheimer's disease. Knowing the difference affects planning, management, and prognosis. Our primer breaks down the four most common types, as well as four not-so-common ones.

14/07/2019

Important. Caring can be very difficult and wearing, as many of us know.

A program of therapy and coping strategies for people who care for family members with dementia successfully improves the carers' mental health for at least a six-year follow-up, finds a new study.

03/05/2019

This is wonderful. Mom was able to sing long after she was unable to talk. https://www.bbc.com/news/stories-48124591?fbclid=IwAR0WaoiJdbSM3dB6oz1eVFXNCYSyl25C7ocbP-PoVHAaxlNTjiNKbp-dHik #

There's evidence music can ameliorate symptoms of dementia - and also bring vital moments of joy.

09/01/2019

Warning - emotional post coming. Have any of you ever dreamed of your loved one, or of yourself, healthy again? I had a dream in which mom got over her PSP. I remember thinking, in the dream, what a miracle it was. Waking up was wrenching. I also have dreams in which she's still in the mid-stages of it, and these are horrible. Nightmares, actually, though the events, or similar ones, actually occurred, so I suppose they are more like flashbacks. The dreams are traumatic, and I'm struggling to cope.

21/12/2018

Wishing you all a peaceful, love-filled holiday season!