Dreams and Lewy Body Dementia (Mayo Radio Minute)

One of our local Lewy Body Dementia caregiver support group members shared this Mayo Clinic Radio Health Minute.  The one-minute audio snippet is about Dementia with Lewy Bodies and REM sleep behavior disorder (RBD).  The Mayo neuroscientist speaking is Melissa Murray, PhD.

Listen here:


Dr. Murray’s research shows that in men, RBD is five times more likely to be seen in Dementia with Lewy Bodies.

The point made in the article is that if dementia is present, clinicians should screen for RBD.



PSP, CBD, MSA, and LBD Research Going On in Northern/Central California

Probably everyone in our group can find something of relevance in this post.

It has been awhile since Brain Support Network published a list of all of the MSA, LBD (DLB or PDD), PSP, or CBD research studies currently recruiting at non-profit institutions in Northern and Central California.  BSN staff member Arif H. helped compile the list below to encourage everyone our community to participate in at least one of these studies!

Listed below are studies for:  (if you don’t know what an acronym means, just skip over it!)
* those with a PDD, MSA, PSP, CBD, CBS, or DLB diagnosis
* those with RBD and no neurological diagnosis
* those with neurogenic orthostatic hypotension
* those whose parents or siblings had/have PSP
* healthy controls

We’ve listed studies from Stanford, UCSF’s Memory & Aging Center, and UC Davis.  All studies listed are open to anyone — you don’t have to be a patient of one of those centers to participate, and your family member doesn’t have to be a patient either.  (We did not list studies that don’t recruit from the wider community.)

We’ve provided brief info on the specific studies that are actively recruiting below.  Contact the study coordinator to learn what the specific inclusion and exclusion criteria are.

When we say “research study,” we are referring to:
* clinical trials where there is an intervention tested — a drug, therapy, or experimental treatment
* observational studies where participants are observed over time

You can always search for actively-recruiting clinical trials by visiting clinicaltrials.gov.  For good background on types of clinical trials, trial phases, why it is so important that more people volunteer for trails, etc, see this Michael J. Fox Foundation webpage:

Short note to the PSP and CBD families who participated in the February 8th seminar we organized with UCSF:  MAC researchers attended the seminar and were recruiting for three of the PSP and CBD studies mentioned below, so most will be familiar to you.  The clinical trial for PSP and CBS is brand new, and was just posted to clinicaltrials.gov last week.  This is the clinical trial that Dr. Boxer mentioned in February as “being in the works.”

Obviously if no one participates in research, we can never make progress towards finding treatment or a cure for these disorders!  Please check out the list below to see if you, a family member, or a friend can participate.




1-SU:  Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease

Purpose:  Our goal is to better understand brain networks and biological markers associated with memory changes in Parkinson’s disease, and to find ways of detecting these changes before memory problems develop.

Recruiting:  Primarily recruiting people with a diagnosis of Parkinson’s who have moderate to severe memory impairment (including PDD), ages 50 and up.  Also recruiting healthy control subjects, ages 65 and up.

Principal Investigator:  Kathleen Poston, MD, MS.  Funded by the Michael J. Fox Foundation for Parkinson’s Research.

Contact:  Anisa Marshall [no longer at Stanford]


2-SU:  Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis

Purpose:  To develop imaging markers that will more accurately diagnose parkinsonian disorders, such as Parkinson’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Corticobasal Degeneration.

We are recruiting:
1: People with an established clinical diagnosis of PD (diagnosed 2+ years)
2. People with an established clinical diagnosis of MSA, PSP, or CBD
3. Any person with REM Sleep Behavior Disorder (RBD), but no other neurological diagnosis.

Study participants will receive at no cost:  brain imaging (MRI and PET), a memory evaluation, and a clinical evaluation.

Principal Investigator:  Kathleen Poston, MD, MS.  Funded by the National Institutes of Health (NIH).

Contact Info:  Hadar Keren-Gill  [no longer at Stanford]



1-MAC:  Epileptiform Activity in Neurodegenerative Diseases

Purpose:  Assess the frequency of epileptiform abnormalities which we can measure using EEG and MEG.  The epileptiform activity we are exploring may be a sign of hyperexcitability in the brain related to seizures, and has been found in animal models of neurodegenerative diseases.  Furthermore, in animal models the use of an antiepileptic can sometimes improve cognition and this suggests a potential new therapeutic avenue for individuals suffering from neurodegenerative diseases in the future

Recruiting:  Currently recruiting DLB, early-onset variant AD (including PCA and language subtypes in addition to amnestic cases), and behavioral variant of FTD.

Principal Investigator:  Dr. Keith Vossel, MD, MS

Contact:  Alex Beagle, [email protected], phone 415-476-2906


2-MAC:  Four Repeat Tauopathy Neuroimaging Initiative (4RTNI)

Purpose: To identify the best methods of analysis for tracking PSP and CBD over time. The results from this study may be used in the future to calculate power for clinical drug trials, as this study aims to identify the most reliable outcome measures.  The study will also provide additional information about the relative value of different imaging techniques for diagnosis, and the value of imaging versus other blood, urine, and cerebrospinal fluid (CSF) biomarkers.

Recruiting:  PSP and CBD patients between 45 and 90

Webpage:  memory.ucsf.edu/research/studies/4rtni

Principal Investigator:  Adam Boxer, MD, PhD.  Sponsored by the National Institutes of Health (NIH) and Tau Research Consortium.

Contact:  Dan (Phi) Luong, [email protected], phone 415-476-9578

3-MAC:  Safety Study of TPI-287 to Treat CBS and PSP

Purpose:  To determine the safety and tolerability of intravenous infusions of TPI-287 administered once every 3 weeks for 9 weeks (for a total of 4 infusions) in patients with primary four repeat tauopathies (4RT), corticobasal syndrome (CBS) or progressive supranuclear palsy (PSP).

Webpage:  clinicaltrials.gov/ct2/show/NCT02133846

Principal Investigator:  Adam Boxer, MD, PhD

Contact:  Emmeline Chuu, [email protected], phone 415-476-0671


4-MAC:  FamPSP or Familial PSP Study

Goal: To identify genetic risk factors for PSP

1.  PSP patients with a first degree blood relative with a neurological or psychiatric disorder (e.g. PSP or related disorders, dementia, Parkinson’s, psychiatric illness)
2.  First degree blood relatives of such PSP patients who are either (a) healthy or (b) might have a neurological or psychiatric disorder.  Both affected and unaffected family members are eligible and can provide important information about PSP.

Participants will undergo a neurological exam, cognitive testing, and a blood draw

Principal Investigator:  Michael Geschwind, MD, PhD.  Funded by the Rainwater Charitable Foundation.

UCSF Contact:  Joe Winer, [email protected], phone 415-476-2909.  (Other study sites are UCSD and UCLA.)

5-MAC:  Sleep in PSP

Purpose:  To characterize sleep and daily activity patterns in individuals with PSP; to identify sleep as a biomarker for disease onset and progression; and to develop an intervention to improve sleep and daily activity patterns.

Recruiting:  Individuals with a diagnosis of PSP

Principal Investigator: Thomas Neylan, MD

Contact:  Christine Walsh, PhD, [email protected], phone 415-476-8676



1- UCD:  A Clinical Study of Patients With Symptomatic NOH to Assess Sustained Effects of Droxidopa Therapy

Recruiting Parkinson’s Disease, Multiple System Atrophy, parkinsonism, etc. with symptomatic neurogenic orthostatic hypotension (NOH).

Webpage:  clinicaltrials.gov/ct2/show/NCT01927055

Principal Investigator:  Lin Zhang, MD, PhD.  Sponsored by Chelsea Therapeutics.

Contact:  Virina De Jesus, CCRP, senior clinical research coordinator, phone 916-703-9174, email [email protected]

Register Now – LBD, PSP, MSA, CBD Caregiver Symposium – Sat July 12th, Foster City

Register Now for the


Saturday, July 12  –  8am to 4:15pm
Crowne Plaza Foster City

Family Caregiver Registration Website

Early-bird registration ends June 12th.  Space is limited.

Registration is online.  To register by phone, contact me.


Join us Saturday, July 12, 2014 for an all-day LBD, PSP, MSA, CBD, and Parkinson’s Caregiver Symposium, to be held at the Crowne Plaza Foster City.  We are confident the symposium will be both informative and personally enriching.

All three general session speakers — Drs. Kathleen Poston, Rosa Chuang, and Grace Liang — are knowledgeable about LBD, PSP, MSA, and CBD.  Many BSN support group members see these MDs for medical care.  The remarks by these three will not only keep Parkinson’s in mind but will also keep the atypical parkinsonism disorders in mind.

Our 2012 caregiver symposium got great reviews and we aim for even better reviews of our 2014 symposium.  All of the 2014 symposium speakers and nearly all of the topics will be different from 2012.

Check-in and continental breakfast (including fresh fruit) begin at 8am.  This is a good time to visit exhibitor and sponsor tables.  The program begins at 9am.  A delicious lunch will be served at noon.  During the hour-long lunch break, you’ll also have time to visit exhibitor tables.  We will end by 4:15pm.


This symposium is for family or friends who care for someone with Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, Corticobasal Degeneration, related diagnoses such as Parkinson’s Plus or atypical parkinsonism, and Parkinson’s Disease.

The word “caregiver” includes those who partner in caring, give hands-on care, manage someone’s care, are concerned about a friend or family member, or provide support to a primary caregiver.  Both current and former caregivers are welcome.

A few spaces have been allotted for healthcare professionals.  We hope to offer CEUs. Please check back about June 13th.

This event is NOT open to anyone WITH one of those diagnoses (LBD, PSP, MSA, CBD, atypical parkinsonism, PD).  The exception is if someone with one of those diagnoses is/was also a caregiver to a person with one of those diagnoses.


Space is limited.  There is no registration at the door.  For family caregivers, the deadlines and fees are:

June 12 – $35 early-bird registration deadline
July 8 – final $50 registration deadline

Family Caregiver Registration Website

Registration is online only.  If you need help registering or don’t have internet access, a BSN staff member is ready to help.  This takes no more than 10 minutes.  Please contact Beth Miller, cell phone 408-355-4497, email [email protected]  She is available to help in the evenings and on weekends too.


General session speakers include three Bay Area movement disorder specialists — Dr. Kathleen Poston and Dr. Rosalind Chuang, from Stanford’s Movement Disorders Center, and Dr. Grace Liang, from The Parkinson’s Institute, Sunnyvale.  All three speakers will give presentations tailored to family caregivers.

Dr. Poston will speak about what caregivers can do to help address cognitive, memory, and mood symptoms of PD and atypical parkinsonism disorders.  Dr. Chuang will speak about what caregivers can do to help address motor and autonomic symptoms of PD and atypical parkinsonism disorders.  And Dr. Liang will speak about advance care planning for PD and atypical parkinsonism families.

Throughout the day, there will be break-out sessions.  Topics include care options, positive family communication, self-care, mindfulness-based care, the many roles caregivers play, unacknowledged grief, coping with dementia, paying for long-term care, and getting your affairs in order.  Participants may select three sessions.  (We suggest you join forces with other attendees to share notes.)  Speakers include two social workers and an RN who facilitate PD caregiver support groups, Family Caregiver Alliance, UCSF, and more.

Our 2012 caregiver symposium got great reviews and we aim for even better reviews of our 2014 symposium.  All of the 2014 symposium speakers and nearly all of the topics will be different from 2012.

Here’s the full agenda:


For caregivers, there will be a small registration fee — $35 for early-bird registrants, and $50 thereafter.  That includes the day’s program, continental breakfast, and a hot lunch. Parking is free.

About Food. The organizers have been to many conferences where speakers talked about the need for good nutrition.  We have found it odd that the food served at these same conferences is mostly sweet danishes for breakfast and sandwiches for lunch.  Rest assured that the food we will serve is nutritious.  Fresh fruit will be included in the continental breakfast.  And there will be a delicious, hot lunch. At our 2012 caregiver symposium, the audience broke out in applause in appreciation for a sponsor paying for a wonderful lunch.  While the speakers are all different for 2012, we plan on the same menu as it was well-received.  No food is served besides the continental breakfast and hot lunch.


You can find all the details on this caregiver symposium online here:

Contact me ([email protected]) if you would like a flyer to spread the word.

Due to privacy concerns, this symposium will not be videotaped.


In volunteering?  We are looking for volunteers who can help out for the ENTIRE DAY.  Volunteers need to report no later than 7:30am (by 7am if you want continental breakfast beforehand) and are free to go at 5pm.  Registration is free for these day-long volunteers.  Those wanting to volunteer should contact Lauren Stroshane, email [email protected], with any questions.  (If you previously responded when we sent out the “Save the Date” message, no need to respond again.)

In staffing the Brain Support Network exhibitor table?  BSN will have an exhibitor table at the event.  This table should be staffed by one or two people who have attended our caregiver-only support group meetings (at Mimi’s Cafe) and is familiar with our brain donation mission.  You don’t need to be knowledgeable about all four atypical parkinsonism disorders in our group, but you at least need to know the names of these disorders.  Materials on our exhibitor table will include a flyer at the caregiver support group and a brochure about brain donation.  The BSN exhibitor table will likely be outside the ballroom.  We could certainly get a chair so that you could sit inside the ballroom for the general session speakers.  Exhibitors need to be at the event from 7:30am to 2:15pm.  Please contact Steven Russell, email [email protected], if you are interested.

In staffing a CurePSP, MSA Coalition, or LBDA exhibitor table?  We intend to approach each of these organizations as to whether they would like to have an exhibitor table at this event, or maybe one of our BSN group members is willing to sponsor an exhibitor table?  The fee for non-profits is $35 (earl-bird) and $50 (general registration).  We can help obtain display materials for this event.  Exhibitors need to be at the event from 7:30am to 2:15pm.  Please contact Robin Riddle, email [email protected], if you are interested.


Registration for Professionals.  Registration will open on or about June 13th for professionals.  We have applied through the Alzheimer’s Association for CEUs.  Stay tuned.

Exhibitor and Sponsor Registration is here:


This event is being organized by Stanford’s PD Caregiver Support Program.  I think most of you know that I work part-time coordinating this program at Stanford.  Given my involvement with Brain Support Network and atypical parkinsonism disorders, the Stanford program includes atypical parkinsonism as part of its support mission.

We look forward to seeing you on July 12th!  It’s going to be a great event!


‘I Don’t Want Jenny To Think I’m Abandoning Her’: Views On Overtreatment

The author of this article in Health Affairs (healthaffairs.org) is the director of the Center to Advance Palliative Care and a palliative care physician.  She shares the story of “Jenny,” a cancer patient and Jenny’s oncologist.  The author helps Jenny deal with her “death sentence” and helps the oncologist struggling with “abandoning” her patient.  The article is here:


‘I Don’t Want Jenny To Think I’m Abandoning Her’: Views On Overtreatment
Diane E. Meier
Health Affairs
May 2014, vol. 33, no. 5, pages 895-898



PSP, LBD, MSA, CBD Caregiver Symposium – Sat 7-12, Foster City – Save the Date!




The Stanford PD Caregiver Support Program is pleased to present an all-day Parkinson’s Disease and atypical parkinsonism caregiver symposium, to be held at the Crowne Plaza Foster City on Saturday July 12, from 9am to 4pm.  This hotel is right off highways 92 and 101.

Our 2012 caregiver symposium got great reviews and we aim for the same quality level or higher in 2014.  Nearly all of the 2014 symposium speakers will be different from 2012.

Symposium speakers will address one of these key topics:
* dealing with the emotional and psychological aspects of being a caregiver or care partner, and
* the practical aspects of dealing with a loved one’s symptoms.


One keynote speaker is Kathleen Poston, MD, MS, movement disorder specialist at Stanford, and a favorite guest speaker at many PD support group meetings.  She will speak on the topic of what caregivers can do to help address cognitive, memory, and mood symptoms.

Another keynote speaker is Rosalind Chuang, MD, movement disorder specialist at Stanford, and another favorite guest speaker at support group meetings.  She will speak on the topic of what caregivers can do to help address motor and autonomic symptoms.

Both speakers are very familiar with atypical parkinsonism disorders.  Many in our support group see these MDs for regular care or have seen them for a second opinion.

Breakout sessions are on topics including care options, coping with dementia, financial issues in elder care, etc. Presenters come from Family Caregiver Alliance and other great Northern California organizations.  Other general session and break-out session speakers are being finalized now.


There will be a small registration fee (probably $35 for early-bird registrants).  Once we finalize the agenda, we will launch a registration webpage.  Attendance will be limited to the first 150 registrants.  The symposium will run from 9am to 4pm.  Registration and continental breakfast (with fresh fruit) will start at 8am.  A delicious hot lunch will be provided (no more sandwiches!).


This event is for family or friends who care for someone with Parkinson’s Disease, Lewy Body Dementia, Progressive Supranuclear Palsy, Corticobasal Degeneration, Multiple System Atrophy, or atypical parkinsonism (also called Parkinson’s Plus).

This includes those who:
* live with someone with PD or parkinsonism, or
* consider themselves “care partners,” or
* have family members or friends with PD or parkinsonism, or
* give hands-on care, or
* manage someone’s care, or
* are concerned about a friend or family member, or
* provide psychological or practical support to someone with PD or parkinsonism.

Both current and former caregivers are welcome.  A small number of spaces will be allotted to professional caregivers.  We hope to offer CEUs.

One of the benefits of caregiver-only events is that caregivers can speak openly about the challenges associated with their role.  This event is NOT open to anyone WITH one of those diagnoses.  The exception is if someone with one of those diagnoses is/was also a caregiver to a person with one of those diagnoses.

If you have a neurological diagnosis and are reading this email, please pass this info along to the family members or friends who care about you!  They need support too.

Given privacy concerns, we do not plan on videotaping this event.


In attending:
If you are receiving this email, you are on the Brain Support Network email list.  All on this list will be notified when registration is open.  Stay tuned…

In volunteering:
As with our 2012 symposium, Brain Support Network may provide most or all of the volunteers.  Please email Steven Russell ([email protected]) if you’d like to volunteer at this event.  (Steven is also BSN’s treasurer.)


More info will be available soon.  When registration information is available, this webpage will be updated:

In the meantime, please SAVE THE DATE — Saturday 7-12-14.



Hippocampal sparing Alzheimer’s (Mayo Clinic)

One of Brain Support Network’s missions is to assist families around the United States with brain donation.  We have helped nearly 200 families donate a loved one’s brain.  Half of the confirmed diagnoses are different from the clinical diagnoses! We often see two diagnoses “wrong” more often than others – corticobasal degeneration and Lewy body dementia. Often, those with supposed CBD or LBD have an atypical form of Alzheimer’s confirmed through brain donation.  And we sometimes see the same pattern in frontotemporal dementia (FTD).

Yesterday, the Mayo Clinic announced that this atypical form of Alzheimer’s — called hippocampal sparing Alzheimer’s — is more widespread than previously thought.  Apparently 11% of all Alzheimer’s cases at the Mayo Clinic brain bank are this atypical form.

Mayo recently defined “hippocampal sparing Alzheimer’s.”  They say it is neither “well-recognized nor treated appropriately.”

We can certainly agree with the “well-recognized” part of their statement.

The press release from the Mayo Clinic is worth checking out as well as the associated five-minute interview with Melissa Murray, PhD, the neuroscientist at Mayo leading research into this atypical form of Alzheimer’s.  Here’s a link:


Plus the Mayo press release is copied below.


Mayo Clinic Press Release
By Kevin Punsky
Atypical Form of Alzheimer’s Disease May be Present in a More Widespread Number of Patients, Mayo Clinic Says
April 30, 2014

JACKSONVILLE, Fla. — Neuroscientists at Mayo Clinic in Florida have defined a subtype of Alzheimer’s disease (AD) that they say is neither well recognized nor treated appropriately.

The variant, called hippocampal sparing AD, made up 11 percent of the 1,821 AD-confirmed brains examined by Mayo Clinic researchers — suggesting this subtype is relatively widespread in the general population. The Alzheimer’s Association estimates that 5.2 million Americans are living with AD. And with nearly half of hippocampal sparing AD patients being misdiagnosed, this could mean that well over 600,000 Americans make up this AD variant, researchers say.

In an oral presentation at the annual meeting of the American Academy of Neurology in Philadelphia, scientists say hippocampal sparing AD often produces symptoms that are substantially different from the most commonly known form of AD, which affects the hippocampus, the center of memory.

The patients, mostly male, are afflicted at a much younger age, and their symptoms can be bizarre — behavioral problems such as frequent and sometimes profane angry outbursts, feelings that their limbs do not belong to them and are controlled by an “alien” unidentifiable force, or visual disturbances in the absence of eye problems, researchers say.

They also decline at a much faster rate than do patients with the most common form of AD.

“Many of these patients, however, have memories that are near normal, so clinicians often misdiagnose them with a variety of conditions that do not match the underlying neuropathology,” says the study’s lead author, Melissa Murray, Ph.D., an assistant professor of neuroscience at Mayo Clinic in Florida.

Many of these patients are diagnosed with frontotemporal dementia, a disorder characterized by changes in personality and social behavior, or corticobasal syndrome, characterized by movement disorders and cognitive dysfunction. Language dysfunction is also more common in hippocampal sparing AD, although patients do not have vocal or hearing deficits.

“What is tragic is that these patients are commonly misdiagnosed and we have new evidence that suggests drugs now on the market for AD could work best in these hippocampal sparing patients — possibly better than they work in the common form of the disease,” Dr. Murray says.

The researchers benefit greatly from one of the largest brain banks in the country — more than 6,500 brain donations — as well as a collaborative environment between neuroscience research and neurology at Mayo Clinic, she says.

Both hallmark proteins of AD — amyloid beta (Aβ), which forms Aβ plaques, and tau, which produces tangles — are found across all subtypes of AD, including hippocampal sparing AD. The researchers developed a mathematical algorithm to classify AD subtypes using tangle counts. “What is fascinating is that all the AD patient subtypes had the same amount of amyloid, but for some reason tau tangles were found in strategic cortical regions disproportionate to the hippocampus.”

In these patients, tau preferentially damages and eventually destroys neurons in parts of the brain involved in behavior, motor awareness and recognition, as well as use of speech and vision, Dr. Murray says.

She says she hopes this research, the second high-profile Mayo study to highlight hippocampal sparing AD, will “open the minds” of clinicians who are trying to diagnose dementia, helping them understand that loss of memory is not present in every AD patient.

“Our studies support the notion that dementia related to AD does not necessarily equate to a loss of memory, and points to the need for more research in amyloid and tau imaging biomarkers to help clinicians accurately diagnose AD — regardless of subtype,” Dr. Murray says.