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.