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?
PSP Blog 
Thank you for sharing your week. It is very impressive and appreciated how involved you are in sharing and growing information around PSP. I am on the opposite spectrum of your week. I am caring for my husband with PSP so I am thankful for all your work toward a cure. So I understand how you feel about sharing on social media but I wanted you to know how much I learn from your blog. All the best and enjoy your week. Strawberries????
I appreciate the thoughts, Linda. Regarding my fruit choice, see my reply to the next post from Emma.
Well it’s summer so I’ll say mango. PS thanks for all the updates.
Thank you for all you’ve done and continue to do even in retirement. Your dedication and tireless work on this terrible disease is greatly appreciated.
I have strong opinions about oatmeal but will keep them to myself.
That post has elicited more comments than any of the previous 132. Thanks for the kind word, Myrna. I’m also grateful to you for your oatmeal-related sense of discretion.
Excuse me, but I don’t speak English and I want to make sure I have understood a point in your text correctly. Do benzodiazepines accelerate the progression of PSP?
Dear Rocio:
Your English is excellent but you’re over-interpreting. I reported that a new, retrospective look at a group of patients who were observed over a 12-month period (in a drug trial published back in 2014) showed that of all the medications they were taking for their various symptoms, benzodiazepine use was more common among those who had progressed fastest. The original study wasn’t designed to answer that question (it was a randomized trial of a different drug) and the statistical techniques the new researchers applied to compensate for potential confounders in that old data may not have been sufficient. Besides, the new analysis hasn’t even fully passed peer review. Bottom line: People with PSP should not stop their benzos unless with the advice and consent of their physicians. I’ll discuss this in more detail in a blog post if and when the new paper is published.
Dr. Golbe
Thank you very much for your answer and for all the contents of your blog. Although I no longer have my mother physically, I am interested in continuing to learn about the PSP. But I must admit that it is a bit frustrating to have to read everything in English and that all the scientific articles end up clarifying that their conclusions require more investigation.
On a few occasions I have read some comment about certain behavior of the person with PSP to put more food in his mouth than he tolerates and / or to develop a certain predilection for sweet foods. I would be very grateful if at some point you could explain more about these matters or if you could recommend a specific article on the subject. Thanks again.
Greetings from Argentina