On Sunday, January 15, Kirk Hall spoke to my Sunday Mornings with Twitchy Woman group about Palliative Care, a concept that has been adapted from the oncology community for the Parkinson’s community. Kirk and his co-author, Dr. Benzi Kluger at the University of Colorado Hospital, define Palliative Care as a way to help you “live as well as you can, as long as you can.”
Ideally, Palliative Care will begin at the time of diagnosis, when you start to put your care team together. Your care team will include not only your Neurologist/MDS, but physical therapists, occupational therapists, psychologists and maybe even someone with PD who can help guide you through those first months when you are grappling with your new diagnosis. Your team will change over time as your PD progresses and your needs change.
Rather than trying to summarize what we learned, just watch the recording of our meeting with Kirk Hall and a presentation by Dr. Kluger last week for the Parkinson’s Foundation. I think you will find both well worth your time. You should also ask your care partner/giver to watch it as well.
Kirk has recommended the following to learn more about Palliative Care:
- Presentation: Living as Well as Possible: An Introduction to Supportive and Palliative Care
- Book: Being Mortal by Atul Gawande (this is a terrific book! SK)
- Blog: www.shakypawsgrampa.net
- Website: Ask Dr. Benzi: How do I find a (palliative care) specialist for my chronic condition? – Benzi Kluger
Melanoma & Vitamin D
Melanoma and Vitamin D supplements linked to reduced skin cancer risk.
As people with Parkinson’s, we are at higher risk for Melanoma and other skin cancers. I came across this article today in Medical News Today about studies showing that Vitamin D3 may reduce skin cancer risk. Some of the findings are controversial in the medical community, so you may want to talk to your MDS or Dermatologist about this before you add Vitamin D3 to your regimen.
Read the article here.
Fox Insight Survey for Women with Parkinson’s
I recently joined this working group at PD Avengers. We need to get as many women as possible to take this survey. Thank you in advance for helping us.
If you are a woman living with Parkinson’s disease (PD), we want to hear from you — again!
In the past, we invited women living with PD to complete a survey about their unique experience. The responses received will move us forward in our goal of understanding what women around the globe are experiencing across their lifespan when it comes to PD, and what improvements can be made.
Now, we want to learn more about your experience as it relates to menopause. Through this Fox Insight survey, we hope to better understand the impact of a PD diagnosis during specific phases of a woman’s life, and its influence on overall health and quality of life.
This Fox Insight survey has been created in collaboration with a working group of women living with Parkinson’s through PD Avengers, a global alliance of people affected by PD.
The survey should take between 5 to 10 minutes to complete.
For the best experience, we recommend completing this survey on a desktop computer or laptop, as some survey functions are limited when using a mobile or tablet device.
TAKE THE SURVEY NOW
Have a great week!