Monthly Archives: February 2026

Tele-PSP

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Here’s great news:  The new Federal spending bill, which the president has now signed into law, includes a continuation of Medicare’s payment for tele-health visits, including  audio-only visits, through December 2027.  It essentially cancels, for now, the planned return to Medicare’s pre-Covid telehealth policy.

This is especially important for those with PSP, where neurologists familiar with the condition are few and far between and where many of those affected have difficulty traveling, even by car.

PSP is in a better position now than it was pre-Covid to adapt to telehealth.  Two versions of the PSP Rating Scale that omit the items difficult to perform by video were validated in 2023.  Disclosure: I was a co-author.  The original version of the PSPRS, published in 2007, has 28 items and I’ll refer to it as the “PSPRS-28.”  (Disclosure: I developed it and validated it with the help of statistician Pam Ohman-Strickland). One video-friendly modification, the PSPRS-25, omits the three items that require the “laying on of hands,” to use a term that shows my age.  The other, the PSPRS-21, omits those plus the four others relating to eye movements and dystonia.  With the sub-optimal technical situation in the patient’s home, video’s image resolution is not adequate to assess those items, even with the caregiver’s assistance. 

The procedure applied the PSPRS-25 and PSPRS-21 to records from PSPRS-28 administration to two patient groups.  One was the placebo group from the 12-month davunetide PSP study published in 2014 .  The other was my own patients with PSP seen from 1994 to 2020, where I applied the PSPRS-28 at each visit.  The result was that there was excellent correlation with the PSPRS-28 in the 12-month trial database and with long-term prognosis in the long-term database.  That project was led by Drs. Alexander Pantelyat of Johns Hopkins and Anne-Marie Wills of Mass General. 

Other support for video visits for PSP was provided by a study from 2020 where two neurologists independently evaluated a series of patients with various atypical Parkinsonian disorders by live video and compared diagnoses.  The degree of agreement was excellent, with a kappa score (the standard statistical test for inter-rater agreement) of 0.83.    A kappa of 1.0 is perfect agreement and anything over 0.75 or 0.80 is considered excellent. That study is from the University of Rochester, led by Drs. Christopher Tarolli and Jamie Adams.

It’s great to know that an accurate PSP Rating Scale exam is feasible by video, and to know that neurologists almost agree on their video diagnosis of atypical Parkinsonian disorders.  But there’s a lot more to the care of someone with PSP than diagnosis and symptom rating. But hey, maybe tele-health, with a hand from AI, will learn to do all that, too.  Give it a few years.

A smorgasbord of PSP information

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Every so often I’ll make the rounds of what’s out there on the Web by way of PSP information.  So I thought a nice use of a cold day would be to share my latest observations with you all.

Every proper scientific literature review starts with a description of methods.  Mine was to type “progressive supranuclear palsy” into Google and to go with the first seven sites listed.  They’re allegedly the most-visited unless the sponsor has paid to be listed on top, which is the case for one of these.  I added CurePSP’s main page on PSP information, which didn’t make the top seven probably because people new to PSP have heard of the other organizations but not CurePSP.  I also added what ChatGPT had to say, which was a high-level summary that offered users some search terms for further details.

Clearly, CurePSP and Wikipedia were the winners, but many users could be stressed or confused by their level of detail. If that’s you, my next recommendation would be ChatGPT, but if you don’t like their very terse, outline style, I’d go with Penn Medicine.  But I advise checking out more than one.

Again, like every proper scientific paper, this one has a disclaimer statement, which is that I helped write the material in the CurePSP website and am the guy lecturing in its videos mentioned here.

The sources are listed alphabetically.

Source (alpha-betical)Word countNumber of links to more infoAccuracy (absence of incorrect state-ments)Compre-hensiveness (relative to others here)Technical level (relative to others listed here)Quality/quantity of illustrations, charts, graphs, videosMonths since last updateCom-ments
ChatGPT302096ModerateNone0Offers examples of search terms for more detail
CurePSP4,116Dozens1010Moderate2 videos of lectures,
1 of an affected family		ContinualOne page in a very large website on PSP, CBS & MSA
Davis-Phinney Founda-tion1,4612465Moderatenone29Paid for Google search place-ment
Mayo Clinic1,477397Easynone useful24  No statistics; 8th-grade reading level
NIH1,8031095Moderatenone10No statistics or lab science
National Health Service (UK)708895Easynone6Very super-ficial
Penn Medicine7989104Easynone?Basic but well-pre-sented
UC San Diego955098DifficultIncludes excellent video interview with expert?Outdated; few topics in text but more in video
Wikipedia4,593Dozens1010DifficultA useful tableContinualMissing non-tau genetics & current diagnostic criteria

URLs:

Spread the word

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A reader just commented on the need to improve public awareness of PSP and asked how that could be accomplished.

CurePSP devotes a large chunk of its budget and staff to raising awareness of PSP.  For example, a few months ago, some of CurePSP’s leaders, including myself, met on Capitol Hill with 12 members of the House and Senate from both parties to make them aware of PSP, CBD and MSA and to discuss ways the Federal Government might help.

The Michael J. Fox Foundation is certainly aware of PSP and this year is co-funding multiple research projects in PSP alongside CurePSP. Its website mentions PSP as a condition related to PD that needs to be considered as a diagnostic possibility alongside PD.

Celebrities, certainly not exempt from PSP, have stepped forward:

  • In 2020 and 2021, “Zoey’s Extraordinary Playlist” was a series on NBC. One of its producers had a relative with PSP and arranged for the main character’s father, played by Peter Gallagher, to be similarly affected.  The actor did a reasonable job mimicking its disabilities and the effects on his family were portrayed in an accurate, thorough and sympathetic way. 
  • Linda Ronstadt announced that she has PSP in 2019, six years after receiving an initial diagnosis of PD.  The long survival and initial misdiagnosis as PD suggest that she has the “PSP-Parkinsonism” subtype, but I have no inside information.
  • Back in 1999, the British-American comic actor and musician Dudley Moore was diagnosed with PSP.  A few months before he passed away in 2002, he and his family organized a high-profile fundraiser for CurePSP at Carnegie Hall in New York City.
  • In 2023, Congresswoman Jennifer Wexton of Virginia announced that she had PSP.  She retired in 2024, but not before using an AI-powered speech enhancement device to deliver a speech on the House floor.  She was instrumental in adding PSP, CBD and MSA to a bipartisan bill establishing a way to efficiently coordinate all Federally-supported research in that area. The bill easily passed and is now the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act.
  • Rev. Jesse Jackson, the 84-year-old civil rights leader and activist, announced his diagnosis of PSP in 2025.

I have no doubt that once a drug shows promise against PSP and looks like it will be approved, the sponsoring pharma company will cover the Earth with PSP awareness.  Let’s all hope that happens soon, but until then, anyone can help. Just mention something about PSP on social media platforms and other Websites. Include links to CurePSP (psp.org) and to other reputable sources of information and support (hint – hint).

A neurodegenerative panacea? Maybe so!

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In a reply to a commenter back in July 2022, I expressed pessimism about the neuroprotective potential of buntanetap, formerly known as posiphen.  That drug is claimed to reduce genetic transcription of multiple neurodegeneration (NDD)-related proteins, including tau, at the messenger RNA (mRNA) level.  I thought it unlikely that one drug could do that without impairing production of other proteins necessary to health and life. 

Later in the same year, 2022, a double-blind trial of buntanetap in Parkinson’s disease and Alzheimer’s disease was published. The N was small, with 54 participants with PD and 14 with AD.   The treatment period was very short, only 25 days, which means that any result would reflect only symptomatic, not neuroprotective (disease-slowing), effects. That’s because the progression of PD and AD are too slow to be measured over only a 25-day period.  However, the main purpose of the trial was to study safety and tolerability, not efficacy.  The trial also checked spinal fluid levels of multiple proteins associated with the diseases – i.e., biomarkers.

The result were small but statistically significant improvement in some of the cognitive and motor measures in PD and some of cognitive measures in AD.  Most of the biomarkers showed improvement, but none were statistically significant.

Some cell/molecular biology here, folks: The authors argue that previous attempts to treat NDDs by targeting only one protein at a time have failed because all the diseases actually include defects in multiple proteins.  They point out that the mRNAs of multiple NDD-related proteins and iron-metabolizing proteins share a section called an iron-responsive element (IRE).  But the mRNA for the iron-metabolizing proteins is very slightly different from that for the NDDs. IREs are not translated into any part of its parent protein, but they do regulate that protein’s production by the ribosomes: When the level of iron in the cell is too high, the IRE prevents the ribosomes from making the protein. The butanetap molecule binds to a specific part of the IRE, mimicking a high-iron effect.  Luckily, the drug does not bind to mRNA of actual iron-metabolizing proteins – only to that of NDD-related proteins.   

So, if you skipped that nerd interlude, the executive summary is that there’s a good scientific rationale for why buntanetap could work.

But there are some potential issues with the 2022 clinical trial:

  • Many of the patients experienced minor side effects such as headache, rash or muscle spasms.  This could have impaired the blinding scheme and produced a placebo effect.  That issue could have been addressed by asking the patients at study’s end, before the randomization assignments were revealed, whether they thought they had been on placebo or active drug. 
  • Some of the spinal fluid markers that improved related to neuro-inflammation.That, and the improvement in the NDD-related markers, would not have been directly caused by a placebo effect. However, the increased mobility resulting from a placebo effect might have reduced neuro-inflammation, reducing in turn the markers of brain tissue damage.  (Only the patients with PD, not AD, received testing for physical mobility and there was no record of the patients’ exercise habits.) 
  • Like many drug trials at this early stage, this one was not only sponsored by the drug company, but the first and last authors were company employees.  I found no evidence of dishonesty in reading the paper, but a potential financial and professional conflict-of-interest does exist.
  • As stated, this trial was only 25 days long, and we really need to know the longer-term side effects of depriving the brain of a whole raft of normal proteins, even if some of those molecules later cause mischief.

Enough for now.  My next post will discuss the results of a larger, more recent trial of buntanetap that has not yet been published in a peer-reviewed journal.  Cliffhanger.