Palliative Care and PD (presentation by Susan Heath, RN)

These are the notes I took from Susan Heath’s presentation and Q&A session at the June 29, 2007 Caregivers Appreciation Luncheon that five members from our Atypical Parkinsonism support group attended.

Susan Heath is an RN with the SF VA and works with their Parkinson’s Disease Research, Education and Clinical Center.  She is the co-organizer of the PD support group meeting held at the SF VA.

Her presentation was on the topic of Palliative Care and PD, but I found it much wider than that in terms of scope.  The short Q&A had nothing to do with palliative care.

You can find a copy of her presentation materials at:

Here are my notes on her presentation on palliative care and Parkinson’s Disease (PD).  (I’m not going to repeat the info that is on the slides.)



Robin’s Notes from

Palliative Care and PD
by Susan Heath, RN, SF VA
June 29, 2007

“Palliative care” is about the relief of suffering.  It includes “hospice” but it also includes “modern medicine.”  It is not synonymous with “hospice.”

“A good death is an accomplishment.”

“People don’t die ‘of’ PD, they die ‘with’ PD.”

There is ONE paper by a German pathologist named Braak who suggests that PD is infectious.  (She emphasized the word “one.”)  Braak believes that PD gets into the gut and works its way up to the brain.  Polio is like this.

There are subtypes of PD.  Two examples are the akinetic-rigid type and the tremor dominant type.

People with PD have a sensory integration problem.  One example of this is that those with PD are not aware they are speaking softly (hypophonia).  A second example is that those with PD don’t know how to pack a car well any more to take a trip.

“Young onset PD has a genetic component.”

A study was done by the Univ of IA on driving.  It was determined that 70% of those with an H&Y score between 2.5 and 3.0 are bad drivers.

After an H&Y score of 3.0, it is safer for PD patients NOT to walk.

“PD patients can’t multi-task, especially in advanced stages.”

“How do you know if your loved one has swallowing problems?  If they are choking or aspirating with meals.”  (Robin’s note:  I don’t like this answer because, with silent aspiration, there is no sound!  If you hear no sound but you suspect there might be aspiration, the only way to know is to have a modified barium swallow study done.)

The time to discuss advanced care planning is when you don’t need it, not when you need it.

A permanent NG tube is uncomfortable.

Based on her years of experience as an ICU RN, she says that the “guilty, non-involved family member” wants the most aggressive treatment.  Involved family members don’t want to prolong a loved one’s life.

Here are my notes on the Q&A session:

Mirapex is conducting a study called “Dominion,” which is looking into what relationship there is between compulsive behaviors and dopamine agonists, such as Mirapex and Requip.

In Europe (France?), there’s an injectable form of levodopa (Sinemet) available.

The SF VA will be getting a sleep center soon.

She mentioned a caregiver stress survey.

Visual Disturbances in PD

The Colorado Neurological Institute produces a publication called the CNI Review. The Fall ’05 issue contains a couple of articles that our group might find interesting. One is “Visual Disturbances in Parkinson’s Disease and Intervention,” written by an optometrist. All of the atypical Parkinsonism disorders in our group can experience these visual problems. I read about this today on a multiple system atrophy-related online support group.

Here’s what someone on that MSA-related online support group had to say about this article on visual disturbances:

“The important thing I got from the article was that double vision is
intolerable and it gives 3 options for treatment. To me the word
INTOLERABLE is what is important. We didn’t take my Dad’s complaints
seriously enough when he complained about the double vision. We just
thought it was one of those MSA symptoms that he would have to live
with. Finally, my Dad told the ophthalmologist himself and he was given
the prescription for the Fresnel Prism Overlay. Works well for him.”

You can find the full publication (5MB+) online: (takes about a minute to download, even with high-speed internet access)

Visual Disturbances in Parkinson’s Disease and Intervention
by Thomas Politzer, O.D, FCOVD, FAAO
CNI Review
Fall 2005

The visual disturbances article starts on page 10 of the CNI Review (which is page 12 of the PDF). Ironically, in the section on reading difficulty and skipping lines, there seems to be a problem in the article. I think some text is missing.