Welcome to PSP Blog !
Summary:
I am a movement disorders neurologist retired in 2020 from my position at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ. I volunteer as Director of Research and Clinical Affairs for CurePSP in New York City. PSP Blog is aimed at two groups:
- lay readers able to understand scientific concepts and who have done some reading on PSP in places like http://www.curepsp.org and
- clinicians, including movement disorders specialists, seeking some familiarity with the latest on PSP
_________________________________
Background
Basic research on tauopathies in general and on PSP in particular is moving quickly. Even translational research in PSP is ramping up, and while the Internet doesn’t need another blog, PSP-ology does need more communication and maybe some crowdsourcing.
I’m a clinician and don’t pretend to be able to evaluate the latest findings on tau templating, PERK expression or neural networking. But I do keep up at some level and I have many friends who are legitimate experts in all those areas and lots more. I communicate with them regularly and won’t hesitate to ask them to provide input. My roles as CurePSP’s Director of Clinical Affairs and as chair of its grant review provide unique access to some of the latest unpublished thinking and news in the field.
No, I won’t violate standard confidentiality or IP rules, in case you were wondering.
Methods
PSP Blog will discuss not only new research findings, but also will report news about new technologies and new scientific ideas — both the knuckle-headed and those worthy of future Nobels — it’s just that I don’t yet know which are which.
I hope that the Comments feature will allow our ideas to be kicked around frankly but respectfully. Please use the Comments feature to provide me with feedback and new ideas. Please don’t use it as a source of specific neurological advice, which I shouldn’t and can’t give via this medium. But I do appreciate the occasional personal story.
Results
To be determined.
Conclusions
Thanks for reading!
Lawrence I. Golbe, MD
PSP Blog 
Have you happened to look into the drug trial RT001? IT prevents mitochondrial cell death, and is one of the factors of “progressive” supra nuclear palsy. Have you had the chance to read the Progressive Supra nuclear Palsy: Clinical and Research Approaches published by Oxford University Press? Its a fascinating book, even though i don’t recognize some of the words since I am only 16. I noticed while my grandma struggled with PSP that she deteriorated over the course of 6 years. It was devastating to watch, but her diagnosis made me familiar with a disease i never knew existed, and makes a great research paper to publish! It was kind of weird, because none of the doctors had realized she had it! Thankfully at some point a doctor realized her symptoms and we finally had a diagnosis for her.
Dear Mady:
I’m sorry to hear about your grandma. But the silver lining is that you’ve been stimulated to learn about PSP, which could lead to much bigger things for you in science and medicine.
The book you mention is excellent (disclosure: I wrote one of the chapters) but it’s from 1992, so it’s outdated. I suggest keeping up with the latest on the CurePSP website (www.curepsp.org). A good place to start is with their document called “PSP: Some Answers.” https://www.psp.org/wp-content/uploads/2023/10/PSP-Some-Answers-2023.pdf (Disclosure: I wrote it.) If that’s too basic for you, take a look in PubMed for open-access review articles: https://pubmed.ncbi.nlm.nih.gov/?term=progressive+supranuclear+palsy+&sort=date&filter=pubt.review (PubMed is an up-to-the-minute list of biomedical research papers.)
CurePSP has an on-line support group for grandchildren of patients. You and others your age could share things at both scientific and emotional levels. https://docs.google.com/document/d/1rcN66MmzOBKRikfZibulgrIzVgrcfxPQFyqD4mTia_8/edit#
As for RT-001: Unfortunately, an early-phase clinical trial in PSP found that drug to be ineffective. The result has not been published. See my blog post from a year ago: https://psp-blog.org/2023/01/12/we-just-have-to-keep-trying/.
Let me know if you need any advice on your research paper!
Dr. Golbe