“The Givers” – article on caregiving (Scientific American Mind)

There’s a nice article in the current issue of Scientific American Mind magazine focuses on caregiving.

The author notes that “experts emphasize four key elements for managing the stress and maximizing the rewards of caregiving”:

Mastery: Learn as much as possible about the disorder you are dealing with.

Coping strategies: Turn to advocacy and support groups, counselors and therapists to learn specific skills such as how to develop a more positive view of a loved one’s behavior and how to think about one’s own journey as a caregiver. Learn to focus on good care for your relative rather than making the person happy, which is often an impossible job.

Social support: Set aside any notion that you should be able to handle the responsibilities on your own. Reach out to family, friends, religious organizations, volunteer organizations and illness-specific support groups for sympathy, for humor and for hands-on help.

Stress reduction: Do exercise and do use respite programs. Also, try mindfulness training.

Here’s a link to the Scientific American Mind website; you can pay about $7 to obtain the article.


The Givers
Scientific American Mind, Vol. 27, Issue 6
Nov/Dec 2016
by Francine Russo


CurePSP Announces 2017 International Research Symposium

I’m currently at the CurePSP International Research Symposium in NJ.  It was just announced that next year’s symposium will be in San Francisco, at UCSF Mission Bay.  The symposium will be all day (8am to 8pm) on Friday, October 27th.  There’s a reception at a restaurant near Union Square on Thursday night.  The event is free, though CurePSP asks for a donation.

You can register now, if it’s of interest:


This event is for researchers — the top geneticists, stem cell biologists, and others from around the world.  Ninety percent of the content is well over my head (as it’s mostly basic science not clinical work) but I try to attend when I can to feel buoyed by the great minds working on PSP and CBD research.  Of the 100 or so people in the room, there are only three or four of us laypeople in attendance every year.

I’m thinking we can try to figure out a Brain Support Network PSP/CBD support group gathering in conjunction with the event.  Stay tuned….


PSP story – “The Falls Were Bad. The Diagnosis Was Worse.”

Thursday’s New York Times has a nice article about progressive supranuclear palsy (PSP).

The story is about a Filipina named Betty whose “unexplained falls” began at the age of 72.  An eye test with a neurologist plus the falls led to a diagnosis of PSP.

The article mentions “Last Dance at the Savoy,” a beautiful new book about PSP by actress Kathryn Leigh Scott, whom I had the pleasure to meet at the February 2016 CurePSP conference in San Mateo.  Kathryn Leigh Scott says about PSP:  “The biggest takeaway is to have patience. PSP has no treatment, no cure. It’s important to enjoy every precious moment.”

The article describes PSP as follows:

“The condition can present with multiple symptoms: loss of balance, swallowing problems, slurred speech, an inability to walk or talk. Difficulty moving the eyes, especially up and down, and poor bladder control are also common. Depression, memory and thinking problems or loss of inhibition can also occur. All get worse with time.”

Five years later, Betty can no longer walk or talk.

Here’s a link to the article:


The Falls Were Bad. The Diagnosis Was Worse.
By Sylvia Rupani-Smith
New York Times
Oct. 20, 2016



“Hospitals struggle to address terrifying, long-lasting ‘ICU delirium'”

The ICU can be a dangerous place for neurologically normal people.  Imagine how much worse it is for our loved ones who are neurologically impaired!

Here’s an excerpt from a recent article in STAT (statnews.com):

“Anywhere from a third to more than 80 percent of ICU patients suffer from delirium during their hospital stay. And one-quarter of all ICU patients suffer from post-traumatic stress disorder once they leave, a rate that’s comparable to PTSD diagnoses among combat veterans and rape victims. Patients with ICU delirium are less likely to survive and more likely to suffer long-term cognitive damage if they do.”

One critical care physician quoted in the article calls ICU delirium a “massive, massive public health problem.”

Read the full article here:


Hospitals struggle to address terrifying and long-lasting ‘ICU delirium’
By Usha Lee McFarling
October 14, 2016