“A Lesser-Known Dementia That Steals Personality”

This is a terrific article in The Atlantic magazine (theatlantic.com) about frontotemporal dementia (FTD):

A Lesser-Known Dementia That Steals Personality
Frontotemporal dementia, unlike Alzheimer’s, often hits people in the prime of their lives, and can make them act like a completely different person.
The Atlantic
Erika Hayasaki
January 9, 2014


Well worth reading,


Autonomic Dysfunction Webinar (orthostatic hypotension,, etc)

This post will primarily be of interest to those dealing with LBD or MSA, but since constipation and swallowing may be addressed in this webinar, this email may be of interest to everyone in our local support group.

A webinar on how Parkinson’s Disease affects the autonomic system will be held on Thursday 2-20-14 from 9-10am California time.  In particular, researchers will describe what treatments are in development to address symptoms such as orthostatic hypotension (OH) and constipation.

This is one of the few webinars I’m aware of that will look at research on treatments for OH.  OH can be a disabling symptom in dementia with Lewy bodies (DLB) or multiple system atrophy (MSA).  My layperson’s definition of OH is:  a sudden drop in blood pressure that results when you sit up from a prone position or when you stand up from a seated position.

If you aren’t able to attend this webinar, the organizer, the Michael J. Fox Foundation (MJFF), typically posts a recording of its webinars on the following Monday on its website, michaeljfox.org.

Generally, MJFF’s webinars are of very high quality but remember that they are focused on Parkinson’s Disease, not any of the atypical parkinsonism disorders.  DLB and MSA — two disorders in our local support group — are similar to PD in terms of brain pathology, neuro-transmitters, and symptoms, so many of the MJFF webinars will be applicable to people dealing with those two disorders.

Here are details of the February 20th webinar:

Parkinson’s Disease: What Else Goes Wrong?
February 20, 2014 @ 12-1 p.m. ET

Dave Iverson talks to a Parkinson’s patient and researchers about how PD affects the autonomic nervous system, which controls involuntary functions such as swallowing, heart rate and digestion. Our panelists review current treatments in development to address symptoms such as orthostatic hypotension and constipation.

Click on the orange “Register Now” button on this page:



“Caregiving Packet” – good checklists and good info

Long-time group member Lily Shih, whose mom had MSA (confirmed through brain donation), sent me a link to this very helpful Caregiving Packet from John Muir Health:


The 36-page packet includes checklists or sheets for the caregiver (defined as anyone helping another with the challenges of everyday life) to complete on:

* important personal info
* home safety and security
* care receiver’s needs
* caregiver’s job description
* nursing home evaluation
* legal documents

(Note that the PDF is only 19 pages.  Most pages are “doubles,” so you’ll have to scroll to the right to see the second page.)

The packet also shares info on:

* Medicare (what each part covers)
* hiring in-home help for the two types of care (skilled and custodial), with questions to ask agencies
* types of senior housing and care facilities
* how to choose a nursing home
* legal documents for managing financial affairs and managing healthcare decisions
* end-of-life care considerations
* caregiver resources

There’s almost nothing in this packet that is specific to John Muir Health.  So it’s a great resource for us all.

Happy reading!


Webinar on Swallowing and Dental Challenges (in Parkinson’s)

This post is about a webinar on swallowing and dental challenges in Parkinson’s Disease, to be held on Tuesday, January 14th, from 10am to 11am California time.  My guess is that much of what is said will be applicable to those coping with the four atypical parkinsonism disorders in our support group — PSP (progressive supranuclear palsy), LBD (Lewy body dementia), MSA (multiple system atrophy), and CBD (corticobasal degeneration).  If you aren’t able to attend this webinar, the organizer, Parkinson’s Disease Foundation, typically posts a recording of the webinar within one week on its website, pdf.org.

Here are the details of the webinar:

PD ExpertBriefing: Swallowing and Dental Challenges
Organized by:  Parkinson’s Disease Foundation (pdf.org)

Tuesday, January 14, 2014, 10am – 11am California time   (1:00 PM – 2:00 PM ET)

Register here:

Michelle R. Ciucci, Ph.D., University of Wisconsin, and Jane Busch, D.D.S.

Goals for Participants:
* Understand the potential swallowing difficulties related to Parkinson’s, including the onset, progression, and nature of these issues
* Discuss how common treatments for Parkinson’s (surgical, pharmacological and behavioral) may impact swallowing
* Learn common ways to evaluate and treat dysphagia, a swallowing disorder associated with Parkinson’s
* Understand the dental challenges caused by the oral and facial effects of Parkinson’s disease
* Explore practical ways to manage dental treatment in Parkinson’s and achieve a more effective home oral hygiene regimen

When you are ready to join the webinar on January 14th —

Join online by clicking here (if you have pre-registered):


Call this tollfree number if you want to hear the audio portion over your phone:
Toll-free 1 (888) 272-8710 and enter the passcode 6323567#

PSP and CBD Research Update at UCSF, Sat. Feb 8, 8:30am-12:30pm, SF

If you, family members, and friends are interested in learning more about the PSP (progressive supranuclear palsy) and CBD (corticobasal degeneration) research underway at UCSF’s Memory and Aging Center, please RSVP now and join us on February 8th:

PSP and CBD Research Update:
What Have We Learned and What Research is Underway at UCSF?

Free, Half-Day Seminar
For Those with PSP or CBD, Family Members, and Friends

Organized by:
UCSF Memory and Aging Center (memory.ucsf.edu)
Brain Support Network (brainsupportnetwork.org)

Date:  Saturday, February 8th

Time:  Continental breakfast starts at 8:30am.  Speakers are from 9am to 12:30pm.

Location:  UCSF Mission Bay Conference Center
Fisher Banquet Room
1675 Owens Street
San Francisco, CA 94143-3008

Agenda:  Dr. Bruce Miller, Director of the UCSF Memory and Aging Center (MAC), will welcome us at 9am.  Then five MAC MDs will describe the latest cutting-edge research on PSP and CBD.  One of the MDs will be Dr. Adam Boxer, who led the worldwide Davunetide study in 2012.  A PhD researcher interested in sleep issues will be describing a study she’s conducting at the MAC.  A speech/language pathologist will be addressing swallowing issues.  And the MAC’s terrific RN, Robin Ketelle, will be addressing PSP and CBD caregiving.  Talks will be 5-10 minutes in length with Q&A time at the end.  The event ends at 12:30pm.

Parking:  There is a parking garage adjacent to the conference center.  There is a fee for parking.

Continental breakfast will be provided from 8:30am to 9am.  Lunch is NOT provided.  See “Food Tips” below.

RSVP by January 27th to:

Sharon Reichardt
Brain Support Network
[email protected]

Please provide a contact name, phone number, email address, and the number of people attending with you.

Interested in volunteering?  We could probably use a few volunteers for check-in, directing people to the meeting room and restrooms, and perhaps picking up surveys.  If you’d like to volunteer, please contact Brain Support Network at [email protected]

Interested in joining Brain Support Network’s PSP or CBD support group (if you aren’t already a member)?  Please contact Robin Riddle at Brain Support Network.

Food Tips for February 8th:

There is a casual eatery called “The Pub” in Mission Bay Conference Center.  The lunch menu is here:


Here’s a link to other casual eateries nearby: