POLST – Genl Info and 1/11/12 Lecture

Some of you have seen the bright pink POLST form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  The form is to be filled out by someone with a life-threatening illness and signed by his/her physician.  It’s ideal if the physician and patient discuss the options raised in the form.


You can get general info on the California version of this form and download a copy at this website:


It’s available in many languages.  The form was recently revised. The latest version is dated 4/1/11.  All California care facilities have required this form for many years.

I plan to bring some to the next caregivers support group meeting on 12/4.


You can find some useful information on talking about advance care planning for the Coalition for Compassionate Care of California website:


On that page are many additional resources. I would like to highlight two of those:

* Five Wishes, fivewishes.org.  Many in our support group recommend using this advance care directive form.  My husband and I have purchased copies of this form for our family members, and discussed it with them.

* “Go Wish” cards.  I bought a couple of sets a year ago and have used them for advance care planning discussions with family members.  Let me know if you’d like to borrow a set prior to the next group meeting; I can bring a set with me if I have some advance warning!


The POLST form was developed at the Oregon Health & Science University. You can read about the POLST “paradigm” here along with a map of what states have POLST programs:



At the Palo Alto Parkinson’s Support Group meeting on January 11, 2012 (next year), a geriatrician at the Palo Alto Medical Clinic will be speaking about the theory behind the POLST.  An RN will be discussing how to fill out the form.  This meeting is held at Avenidas, the senior center in downtown Palo Alto, from 2 to 3:30pm.  No RSVP is required.  Anyone is welcome to attend.

PSP, CBD, MSA, + LBD are approved for Compassionate Allowance

I received this email today from Richard Zyne of CurePSP about PSP, CBD, and MSA being added to the list of disorders approved for Compassionate Allowance by the Social Security Administration.  In the attachment that accompanied the email (which I haven’t provided here), all four of the disorders in our support group — PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), MSA (multiple system atrophy), and LBD (Lewy body dementia) — are on the Compassionate Allowance list, effective 12/10/11.  This means that those diagnosed with any of these four disorders will have an easier time to be approved for Social Security Disability.


To All Board Members and Staff:

Good News—all of our Atypical Parkinsonisms have just been approved by the Social Security Administration for Compassionate Allowance.  Commissioner Astrue made the announcement today and I just got off the phone with Art Spencer, Associate Commissioner, Office of Disability Programs.

The four disorders include PSP, CBD, MSA, and ALS/PDC [ALS/Parkinsonism Dementia Complex].

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.

CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, SSA considered which conditions are most likely to meet current definitions of disability.

Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer’s disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.

The decision to include our neurodegenerative disorders was based on the clinical information which we have provided over the past couple of years (Thank you Drs. Golbe and Steele) and it became clearly obvious to the Commissioner that they qualified for this program.  I have attached the new list of disorders, which was sent to me by Art Spencer.  See the last four on the list.

I am very pleased that CurePSP has been able to advocate on behalf of our patients for this important benefit.


Richard Gordon Zyne, DMin

Treatment of DLB and PDD – A Literature Review

This set of authors writes a lot of medical journal articles and materials for laypeople on dementia.  This recently-published article is a review of what is known about pharmacological treatment of Dementia with Lewy Bodies and Parkinson’s Disease Dementia.  It’s relatively short and understandable.  I’ve copied the abstract below.


Drugs & Aging. 2011 Oct 1;28(10):769-77.

Treatment of dementia with lewy bodies and Parkinson’s disease dementia.

Ballard C, Kahn Z, Corbett A.
Kings College London, London, UK.

Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB) account for 10-15% of late onset dementias. Key treatment targets include cognitive and functional impairments, neuropsychiatric symptoms including intense and persistent visual hallucinations, and parkinsonism.

Six-month, placebo-controlled randomized controlled trials (RCTs) of the cholinesterase inhibitor rivastigmine have indicated modest but significant benefits in cognition, function, global outcome and neuropsychiatric symptoms in both PDD and DLB. The evidence base for other cholinesterase inhibitors from RCTs is inconclusive.

More recent RCTs with memantine in PDD/DLB patients indicate a benefit with regard to global outcome, with some suggestion of a specific benefit with respect to sleep disturbance.

Given the risk of severe antipsychotic sensitivity reactions, antipsychotics should be avoided.

A significant proportion of PDD/DLB patients are responsive to levodopa, but care needs to be taken with anti-parkinsonian treatments because of their potential propensity to exacerbate neuropsychiatric symptoms, particularly hallucinations.

PubMed ID#: 21970305  (see pubmed.gov for this abstract only)