Two PSP/CBD clinical trials beginning in 8 months?

Local support group member Sharon Reichardt and I were on a conference call yesterday with Adam Boxer, MD, neurologist at UCSF’s Memory & Aging Center. Dr. Boxer shared the news that two clinical trials with experimental drugs are in the works for PSP and, hopefully, CBD.  He suggested that they may be announced in 6-8 months.  But all is quite tentative so we shouldn’t hold him to it.  These would both be single-site studies.

I asked Dr. Boxer if one of the trials would be for Rember.  He said “no.”  The experimental agents are both new.

The Davunetide trial started out at UCSF’s MAC, and then expanded worldwide. Both the Davunetide and Nypta clinical trials ended in failure last year.  So this is good news that researchers are still actively interested in research with PSP and CBD.

One reason pharmaceutical companies are interested in studying tau-related drugs in PSP (rather than in Alzheimer’s) is because those with the Richardson’s Syndrome type of PSP experience faster declines and more brain atrophy than Alzheimer’s patients in the same timeframe.

Stay tuned….


Move before there’s a crisis

In this New York Times “New Old Age” blog post, the author discusses the importance of moving before there is a crisis.  Jane Gross had given this advice to many adult children in reference to their parents.  In this blog post, she is giving the advice to herself and taking it!

Here’s an excerpt:

As just about everyone who has cared for an aging parent knows, getting old is both an inexorable and maddeningly unpredictable forward march. Everything is OK. Then it’s not. Then it is again. What felt early on like a roller coaster becomes the new normal. In between swerves and plummets, it is almost possible to doze off.

And planning for all possible eventualities is useless — after the essential documents are in place, the family has talked openly and often about end-of-life wishes, they understand the difference between Medicare and Medicaid, they know how much money is available and that it is probably not going to be enough.

Caregivers and their elderly charges both know, in a spoken or unspoken way, that on the horizon is The Crisis. That’s the one that demarcates “before” and “after.” Your parents are at home, say, when they really shouldn’t be, and don’t want to leave. The Crisis, when it appears, will be an awful milestone for them and probably so for you, the adult child.

Then one day the roles shift and the crisis on the horizon could be yours. Maybe your parents are dead or maybe not, but you’re now an old person. It happens even if you’re diligent about antioxidants and fish oil, exercise both body and mind, have a cheery attitude, good genes and a wide social network. If you’re not there yet, you’ll have to take my word for it.

So this is put-up-or-shut-up time. I either take my own hard-won advice or I’d better stop dishing it out.

“Don’t wait for a crisis.”

Here’s a link to the full article:

New Old Age/Caring and Coping
The New York Times
Getting While the Getting Is Good
By Jane Gross
September 10, 2013 11:30 am

This is well worth reading!



5-Week Online Course in Dementia Care and Webinars Afterwards

Several local support group members sent me a link to an article from yesterday’s “New Old Age” blog in the New York Times.  (I faithfully read this blog as well.)  The article is about an online course in dementia care being offered at no charge.

The course starts on October 14, 2013, runs for 5 weeks, and is anticipated to take 3-5 hours per week of time.  Though the course is designed for healthcare professionals, anyone interested in dementia care may enroll.  “Some background or knowledge about caring for someone with dementia is helpful,” the co-instructors say in an introductory video.  Based on the title, it looks like the focus will be on Alzheimer’s Disease.

Here’s info about the course:

Care of Elders with Alzheimer’s Disease and other Major Neurocognitive Disorders
Instructors:  Nancy Hodgson, PhD, RN and Laura Gitlin, PhD, both with Johns Hopkins University

This is a state-of-the-art course designed to accommodate the learning needs of health professionals including nurses, social workers, psychologists, occupational and speech therapists, health care administrators and recreational therapists. It is also intended for students who are interested in learning more about dementia care. The 5 units provide an overview of Alzheimer’s Disease and related dementias and the impact on quality-of-life issues for individuals with dementia and their families. Emphasis will be placed on exploring innovations in care through an ecological model of dementia-care  throughout the trajectory of the disorder

Workload: 3-5 hours/week

Begins:  Oct 14th 2013 (5 weeks long)

At the link above, you can watch a 3-minute video introducing the course.

The “New Old Age” blog post has some helpful details.  See:

The New Old Age: Caring and Coping
Online Lessons in Dementia Management
The New York Times
By Judith Graham
September 5, 2013, 6:00 am

According to the “New Old Age” blog post, each class will be broken into 15-20 minute segments.  During the week of October 21st, Dr. Peter Rabins, author of “The 36-Hour Day,” will talk about assessing caregivers’ needs.  During the week of November 6th, Dr. Gitlin will review non-pharmacologic interventions to treat troublesome behavioral symptoms.  “After the course, Johns Hopkins will offer a series of Web-based seminars to caregivers and health professionals following up in more detail on the issues raised. Potential topics include safety in the home, activities for people with dementia and end-of-life care.”

Both the course and the follow-on webinars sound very worthwhile.  I don’t know if those actively caregiving can fit 3-5 hours per week into their lives, however.  If anyone participates, please share highlights or things you learned so I can share with everyone in our group.