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
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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.
Brain Support Network 
When ready to ship, the frozen specimen is packed in 48 hours worth of dry ice in a Styrofoam shipping container. The formalin fixed specimen is wrapped in paper towels that are damp with formalin, put into a leak-proof plastic bag in a separate shipping container, wrapped separately from the frozen one.
Last Updated: July 2022
4. The formalin fixed-specimen (left hemibrain) should be wrapped in formalin-soaked towels and double-bagged. Take care not to over-fill the “inside” bag with formalin as leakage/spoilage was a recent problem that resulted in FedEx suspending transport of a shipment.
7. Dry ice only should be used for the right hemibrain (frozen half). Under no circumstances should wet ice be used for shipping.
We’ve also had the situation where FedEx has accepted a container with dry ice, only to return it or delay delivery. Once, in January 2016, a regular FedEx location accepted the package containing dry ice and then returned it to the pathology specialist’s address a few hours later, offering no explanation as to why it had been accepted earlier at the FedEx location only to be rejected later. Twice in May 2016, FedEx delayed the delivery to Mayo of two containers where the label showed dry ice (“ICE”) was included. Fortunately in both cases, tissue was shipped out on a Monday so we had a couple of days’ leeway to address the problem with FedEx.
10. Immediately after shipping, please send a cell phone photo via text to Brain Support Network (cell phone 650-814-0848 – accepts texts) of the tracking numbers of the two containers. Or, send an