I’ve never used social media.  I did learn to write computer code in high school, but I guess I’m just too much of a Boomer to feel comfortable using the computer as a medium of social interaction.  What especially puzzles me is why anyone thinks that even close friends, much less peripheral acquaintances, are interested in a dutiful chronicle of their daily activities.

That said, here’s what I’m doing over the next seven days that’s PSP-related:

• Today, I listened in on the latest CurePSP “Ask the Expert” webinars.  This one was Dr. Kristy Borawski, a urologist at the University of North Carolina School of Medicine, with a superb, lay-language presentation on what goes wrong with the bladder in PSP, CBD and MSA, and what can be done about it.  Later today, I decided to write a blog post, which you’re reading.  (Bored yet?)
• CurePSP’s Centers of Care network has a special working group to create a convenient algorithm for general neurologists to use in diagnosing the atypical Parkinsonian disorders.  Dr. Michiko Bruno of Queen’s University Medical Group in Honolulu and I are leading that effort.  We had another exchange of emails today and a Zoom call tomorrow.  We’re making good progress on a first draft.
• Tomorrow morning I have a Zoom call with representatives of CurePSP, the Alzheimer’s Association and the Rainwater Charitable Foundation to continue planning a conference in April 2024 called “Tau 2024.”  Like Tau 2020 and Tau 2022 before it, it will be held in Washington, DC and should attract top lab scientists from all over the world.  Registration will be open to the public, but the presentations will be at a very high technical level.
• The next day, I have a Zoom call with a drug company that’s consulting me to help them plan a trial of a new drug for PSP.  Can’t reveal more than that, except that this drug would be the first in its class to be tried for PSP.
• The day after that, I have a Zoom meeting with another company that’s working on a new kind of PET scan technique to diagnose PSP.  Again, can’t say more.  That night I fly down to Charlotte, NC for the quarterly CurePSP Board of Directors meeting.
• After that one-day shindig, I fly directly to Boston for the semiannual meeting of the Tau Consortium.  That’s a group of about 50 world-class researchers working on the tau-based disorders with funding from the Rainwater Charitable Foundation.  Attendance at the conference is only for RCF-funded scientists (which I was for a couple of years, long ago), but now I’m invited as a representative of CurePSP, with which the Tau Consortium has multiple collaborations.
• On the second day of the three-day TC meeting, I’ll try to break away to join a Zoom meeting of the Parkinson Study Group’s Atypical Parkinsonism Working Group.  The PSG is a US/Canada clinical research consortium of academic centers.  Over the past couple of years, this particular sub-group has validated and published a telehealth-compatible version of the PSP Rating Scale and analyzed some old clinical trial data to show that concomitant benzodiazepine use may speed the progression of PSP.  At this meeting, Dr. Tao Xie of the University of Chicago will briefly present some data that he and I have gathered on irregularities of symptom progression in PSP.  The paper is under review at a journal right now.

I allegedly retired in 2020, but I think the only things I’ve really retired from are direct patient care, getting a paycheck, and being able to share personal chit-chat with colleagues in my old department at Rutgers.  But for that last one, I have you!  Want to know what kind of fruit I put in my oatmeal this morning?