Contributed by Kathleen Mason
In the wake of COVID -19, life over the past six months has drastically changed. Many aspects of everyday activities are on hold for the foreseeable future. A physically distanced world is the recommended indefinite “new normal” for those in the PD community to stay safe and well.
For persons with PD and their caregivers, the loss of regular interaction with friends and family can compound feelings of isolation that oftentimes accompanies this journey. PD experts are becoming concerned about an uptick in troublesome symptoms made worse by the lack of routine and regular interaction with the outside world for both persons with PD and caregivers.
This month’s Caregiver Digest spotlights the resources of Davis Phinney Foundation and PMD Alliance, two organizations devoted towards living well with the disease. Their positive messages take on a new significance and usefulness as we move forward together towards maintaining our physical, mental and spiritual wellness during this uncertain time.
Coffee Break: Being a Care Partner for a Person with Parkinson’s
Davis Phinney is an Olympic athlete and world renown cyclist – winning the Tour de France race twice – before being diagnosed with PD at age 40. In an effort to help himself and others, he established a non profit foundation that has reached millions. The foundation motto is “Every Victory Counts” and its’ mission is to live well, inspire action and connect the PD community.
In this 37 minute video, Connie Carpenter Phinney – his wife, caregiver and former Olympian herself, gives a close up look at their PD journey with its many twists and turns over the past decade since his diagnosis.
Pour yourself a cup of coffee and watch as she knowingly describes the life of a caregiver, while maintaining good humor and a grounded perspective on how to best move forward day by day, despite many challenges along the way.
Download the slides here: Care Partners Rewriting the Rulebook Slide Deck
Additional videos for both caregivers and persons with PD are available on the Foundation’s YouTube channel.
PArkinson & Movement Disorder Alliance (PMD Alliance)
This is a new non profit organization offering many valuable resources. Their philosophy is that the person with PD is at the center of an ecosystem made up of family, friends, medical professionals, therapies and community. The mission of the
organization is to advocate for a holistic approach to treatment in order to live more fully with movement disorder disease.
The PMD Alliance offers many essential webinars for caregivers, including their Stay Connected and Social Distancing COVID-19 Series designed to keep you connected, social and positive during this challenging time.
UF Health’s Dr. Irene Malaty, Director of our Parkinson’s Center of Excellence, recently hosted this excellent PMD Alliance presentation featuring herself and Dr. Wissam Deeb on useful tips for managing troublesome non-motor PD symptoms such as pain, slowed thinking, and decreased motivation that can potentially impact quality of life for persons with PD and caregivers.
Find additional webinars, events and online support groups at the PMD Alliance.
Caregiver TIPS and Tools
Keys to PD
“Keys to PD” features real life videos of persons with PD and caregivers sharing tips for what works well when symptoms flare in an ongoing series sponsored by the Parkinson’s Foundation. Two examples: versatile uses of walkers and freezing strategies.
Occupational Therapy
Occupational therapy (OT) focuses on improving quality of life for patients and caregivers. Use of assistive devices, often introduced by OT, can assist caregivers in encouraging independence and safety for persons with PD living at home.
PD Health @ Home
Join weekly seminars, exercise videos, group meditation and an online support community at PD Health@ Home created by the Parkinsons Foundation in response to COVID. Weekly events include Mindfulness Mondays; Wellness Wednesdays and Fitness Fridays.
For Patients of Fixel Institute Resource
C.A.R.E.S. Program
C.A.R.E.S (Caregivers Accessing Resources for Emotional Support) is free, 1-on-1 counseling to caregivers of patients in the Fixel Institute who are currently experiencing emotional and mental strain while caring for a loved one. Can be provided by Zoom online.To schedule this FREE service, call our office at 352-733-2410 or email below.
Parkinson’s Helpline
FREE
Parkinson's Foundation Helpline
Need immediate support? Staffed by nurses, social workers and therapists, the free Helplinenis available to answer caregiver questions and concerns. Just call 1-800-473-4636.
