As promised, here’s the first installment of summaries of new, still-unpublished research from at the International Parkinson’s and Movement Disorders Society conference held in Copenhagen in August 2023. I’m starting with the presentations on treatment, the topic of most interest to this audience. As usual, I’ll be generous in sharing my own opinions on these developments, shown in italics.

A retrospective review of amantadine in progressive supranuclear palsy

N. McFarland, R. Farrukh, S. Mahn (Gainesville, Florida)

Amantadine is an old anti-Parkinson drug with modest symptomatic benefit but with some important side effects, including confusion and hallucinations in patients with existing cognitive symptoms, along with dry mouth, constipation, ankle swelling and other issues.  A few small, non-controlled series have shown benefit in some people with PSP.  Dr. McFarland and colleagues reviewed their own records, finding 44 patients with PSP who had been treated with amantadine and whose responses were adequately recorded.  Six claimed improvement and 31 claimed to be worse, but the change in the PSP Rating Scale over the 8 months of treatment was similar in the two groups.  It’s possible that the 14% improved in a way not measured by the PSP Rating Scale, or that much of the benefit was lost by the time of the follow-up exam, or that it was just placebo effect.  These unfavorable numbers do not change my own opinion that despite the possibility of side effects, a short trial of amantadine in non-demented patients who have reached maximal benefit on levodopa is worth trying until something better comes along.

Effects of exergaming-based tai chi and eye movement training on balance and gait in progressive supranuclear palsy: a case report

Y. Levitan-Marcus (Tel Aviv, Israel)

This is a case report of a 66-year old man with mid-stage PSP who underwent a 3-month course of 3 physical therapy sessions per week, 50 minutes each, over 12 weeks.  The therapy comprised “exergaming-based Tai Chi and eye movement training software.”  His frequency of falls and other measures of gait and balance improved noticeably, though quantification is not provided in the abstract.  This confirms previous case reports and small case series showing that eye-movement-based balance therapy can help the symptoms of PSP.  A randomized trial is now fully justifiable.

A tau-directed monoclonal antibody could alter the tau pathology of progressive supranuclear palsy

G. Beck, R. Yamashita, Y. Yonenobu, K. Ikenaka, S. Murayama, H. Mochizuki (Suita City, Japan)

You’ll recall that in 2019, the drug company AbbVie announced that its multi-center, controlled trial of tilavonemab, a monoclonal antibody directed against tau, had failed to slow the progression of PSP.  At about the same time, Biogen announced similar results for its own anti-tau antibody, gosuranemab.  Now, researchers in Japan have compared a brain autopsy from one of the patients randomized to active drug in the tilavonemab study to brains of three people with PSP who did not participate in the study.  They found that the brain’s immune system had been activated in the patient on tilavonemab, at least in the substantia nigra, one of the most important areas of damage in PSP.  The response comprised macrophages and microglia engulfing abnormal tau.  This is the sort of response hoped for, though clearly it was too little to help the patients.  Although this report includes only one patient to receive the treatment, it suggests that monoclonal antibodies against tau have potential against PSP.  Other drug companies are now testing antibodies directed against different parts of the tau molecule in hopes of improving upon tilavonemab’s results.

TEP-PSP: preliminary results of a therapeutic education program in progressive supranuclear palsy

A. Camara, C. Painous, M. Baixauli, J. Herrero, S. Pelaez, I. Martin, I. Quiñoa, C. Torregrosa, M. Carrasco, JC. Lopez Reyes, L. Maragall, Y. Compta (Barcelona, Spain)

This report describes what might be called “PSP 101” for patients and caregivers.  Researchers in Spain have organized a registry for PSP in Catalonia, the region of the country that includes Barcelona, with 5.5 million inhabitants.  So far, they have enrolled 15 patients, each with a caregiver.  They have administered a course of instruction comprising 5 sessions covering general knowledge of the disease, nursing care, speech and physical therapy, and occupational, psychological, and social support.  Patients’ and caregivers’ satisfaction with the sessions was very high, as measured by a standard scale.  Enrollment is continuing and the researchers plan a follow-up to assess long-term benefits of the program.  This sort of program can fill a need for patients and caregivers who may not be inclined to read (or remember) printed or on-line material, and its interactive nature may prove an advantage over those more passive methods of instruction.  If further observations continue to demonstrate success in Catalonia, and if a comparison with more traditional means of lay education proves favorable, PSP organizations elsewhere may want to adapt such a course to other languages, cultures, and systems of medical care and to scale it up to larger patient groups.