Three Stanford Studies Recruiting PDD, PSP, MSA, CBD or healthy controls

Two researchers at Stanford’s Movement Disorders Center are recruiting participants for three research studies who have PDD (rather than DLB), PSP, MSA, or CBD, or are healthy controls.

Dr. Kathleen Poston mentioned both of her studies are the October 2012 atypical parkinsonism symposium during the MSA break-out session, so that may not be new info to those who attended her session.  (And I know several in our group – both those with MSA and their healthy caregivers – have participated.  Thank you!)

You do NOT have to be a Stanford patient or Stanford family to
participate.  Details of the three studies follow.




Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease

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

Contact Info:  Sophie YorkWilliams, (650) 774-8688

We are recruiting:
1: Any persons with a diagnosis of Parkinson’s disease with all levels of memory ability.
2. Any healthy persons between the age of 45-95, who do not have PD, memory problems, or any other neurological disorder.

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

The purpose of this study:  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.


Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the NIH.

Contact Info:  Hadar Keren-Gille, (650) 724-4131

We are recruiting:
1: People with an established clinical diagnosis of PD, MSA, PSP, or CBD
2: Any person with a parkinsonian diagnosis within the last 2 years, who is not on any levodopa (sinemet) or dopamine agonists
(ropinirole/Requipe or pramipexole/Mirapex).  Rasagiline (Azilect) or selegiline are OK.
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.

The purpose of this study:  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.


Fine, limb and axial motor control study of people with MSA and PSP

Principal Investigator:  Helen Bronte-Stewart, MD, MSE

Contact Info:  Lauren A. Shreve, (650) 855-4656

We are recruiting:
1.  People with diagnosed MSA-P or -C and PSP, who can stand
unassisted in the off medication state.
2.  Healthy age-matched (older) control subjects.

Purpose:  We plan to compare fine and large motor kinematics with those from people with PD.


AFTD Series – First Person Accounts of Those with FTD

The Association of Frontotemporal Degeneration ( invites those who have been diagnosed with FTD to share their thoughts through short written pieces. contributor Alice Walton has written a series of five articles on people with FTD from their perspective. Here’s a link to the webpage with links to the five articles plus blogs of others with FTD:


40 Requests of Family, Friends, and Care Team (Jill Bolte Taylor, PhD)

Here’s another list of requests that those with neurological
conditions may have of their family, friends, and care team.

This list of 40 items was written by Jill Bolte Taylor, PhD, and is
part of her book titled “My Stroke of Insight.”  I highly recommend the book, if you haven’t read it before.  Or there is a good online video of Dr. Taylor giving a TED Talk.

I don’t think all 40 items will apply to those with PSP, DLB, MSA, or CBD.  For example, Dr. Taylor’s #17 is “Ask me multiple-choice
questions. Avoid Yes/No questions.”  Initially the maximum number of choices my father (PSP confirmed upon brain donation) could handle was two.  Later, he could only tolerate yes/no questions.  Later, when he could no longer respond, we’d tell him what choice we were making on his behalf,and said we thought it was the choice he would make.

Below, I’ve listed a few of Dr. Bolte Taylor’s 40 requests.


Excerpts from

“My Stroke of Insight”
by Jill Bolte Taylor, PhD

1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are
communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don’t raise your voice—I’m not deaf, I’m wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep
visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

“I’m Still Here” Approach to Those With Dementia

John Zeisel, PhD, has developed a philosophy called “I’m Still Here” about how we treat someone with dementia.  He says that people with dementia can have a life worth living.

There will be a PBS special in March titled “Hopeful Aging” that will review Dr. Zeisel’s philosophy.  There’s a 4-minute trailer to the PBS special here:

In the trailer, he notes that there are seven myths about people with dementia:

1.  They can’t remember.
2.  They lose their identity.
3.  They have no attention span.
4.  They can’t make decisions.
5.  There’s always an aggressive phase.
6.  They can’t enjoy anything because they forget.
7.  They can’t learn.

He says it’s natural to believe that our loved ones with dementia are not there, but it’s not always the case.

Here’s a blurb about “Hopeful Aging” published in Alzheimer’s Daily News:

“Journey through the aging brain with Dr. John Zeisel, explore the possibilities of learning and connection at any stage of life and discover proven strategies that help anyone get the best out of later life. Hopeful Aging is a program that focuses on the journey of brain aging. It brings together proven strategies to help everyone get the most out of their later life by harnessing the lessons of neuroscience with a revolutionary learning technique called C-MAP. Utilizing the principles in Hopeful Aging, viewers will see how a different approach to dementia and Alzheimers can help create a life worth living.”


Therapy Even if No Improvement – Big Change to Medicare Rules

Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

Here’s a link to the NYT article:

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am