Parkinson's: Palliative Care

 

Snarky Parky & me

A Journey Into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu 

Palliative Care?

 Isn't that for the End? 

Image courtesy of Freepik by Rawpixel

Today I filled out another survey. This one I was glad to, it was for research by the Parkinson's Foundation about Parkinson's care. When I finished I thought, “Hmpf...(that's a snort, if you can't tell) this was strange.  The survey was mostly about Palliative Care. And what was stranger than that - was all my “no” answers to whether any of my professional care givers asked me questions about my non motor Parkinson's symptoms. Or had anyone, asked my husband, my wonderful care partner  how he was doing?  Nope, they didn't,.... ever.  And I have a Movement Specialist at a Parkinson's Center of Excellence.  Hmmmm.

OK, it may be just a time thing with my Doctor.  He is very generous with his time and is probably too busy answering the list of questions that we bring with us to ask any himself.

Still, I decided it was time to talk to you about Palliative Care. I have had it on my mind for a while.  A couple of months ago, I had listened online to a great talk about the role of palliative care in Parkinson's.  And since then, it has come up a couple of times: in a news letter from the Parkinson's Foundation; in a Care Partner book from the Davis Phinney Foundation: and at the Cleveland Clinic Expo. It was not a featured talk in one of the sessions.

In the multitude of papers I picked up, at the Exhibitor's tables, was one paper that talked about  “Care-PD: Palliative Care Clinic for Parkinson's Disease.”

Care-PD is at the Cleveland Clinic.  BUT the paper said: “The goal of this clinic is to provide palliative treatment  to patients with advanced Parkinson's disease...”  To me 'advanced' sounded like it was only for your end of life stage.  That stage is already covered by Hospice.,  (“In the US, Hospice refers to care provided either in-home or in day care  programs for those in the last 6 months of life. People may remain enrolled past the 6 month duration, but the expectation is that those enrolled in hospice are imminently dying.”)

What I had read or heard about had been palliative care that started with your diagnosis with Parkinson's. It is a team based approach. That was the kind of palliative care that I was interested in.

“Palliation means to ease the burden of the symptoms of a disease, whether that burden is physical, emotional, or spiritual, and that burden can extend beyond the person with the disease to caregivers.”

The Care-PD paper continued with a very familiar list of non-motor Parkinson's symptoms that they hoped to ease. “The Care-PD clinic focuses on relief of ….pain, depression, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and anxiety.”   Is anyone else's hand up?  Do any of you feel that some  of these are bug-a-boos that have stalked you for a long time?

In a study Released: November 6, 2018

•      “Palliative Care   provides relief from pain and other distressing symptoms.”

•       “Affirms life and regards dying as a normal process.  It intends neither to hasten or postpone death.”

•      “Integrates psychological and spiritual aspects of physical therapy care. “

•      “Offers support to help the family cope.”

•      “Uses a team approach to address needs.”

•      “Will enhance quality of life.”

•      “and may positively influence the course of illness.”

•      “Is applicable early in the course of illness “

 

“Benzi Kluger, MD, MS, director of the University of Colorado’s Neurology and Supportive Care clinics, says that palliative care should begin at the time of diagnosis.”

(I know, I said it before, but it is an important point to me.  I have gone to 1 Neurologist, 2 Movement Specialists, their wonderful Nurse Practitioners and a  Neuro Physical Therapist.  No one, has ever mentioned Palliative Care.)

Benzi Kluger describes the results of a new study on palliative care in Parkinson’s and how it benefited the study participants who received it and viewed it as ‘supportive care.’

So, I feel like this is something good, that Is on it's way.  There are studies being done on the real benefits of it. There are a few clinics that are already adding it into their services. (I was thinking that I would call one of the Doctors listed in the Cleveland Clinic Care-PD paper and ask some questions. That is kind of a stretch for me, so I'll tell you if I do.)

Does anyone have any thoughts, you would like to share, about Palliative Care? Have you been told about it by any of your Dr's? Is it available near you?

On Monday, I have an appointment with my Movement Specialist and this time one of my questions will be about Palliative Care.

Cheers,

Nancy and the Snark

Corrine's Footnotes:  Thank you for sharing this because I was also under the mistaken impression it was just like hospice. This is actually a much more holistic team approach that seems like it should be a given.