Caregiver Digest September 2020

Contributed by Kathy Mason

The Parkinson’ Disease (PD) journey has many twists and turns for persons with PD and caregivers alike. Knowledge is power. In order to live well with the disease, there is a need for both to understand it and what to expect with progression. The more you know, the better you are able to work with your medical team to find the best treatment options along the way.

 Our resource spotlight this month is on our own Dr. Michael Okun, Executive Director of the UF Health Fixel Institute for Neurological Diseases and a world expert in PD, who has authored a groundbreaking book on how to do just that. He’s teamed with co-authors Dr. Irene Malaty, leader of UF Health’s Parkinson’s Foundation Center of Excellence and Dr. Wissam Deeb, expert on PD and movement disorders, to provide persons with PD and their caregivers a step by step guide with essential tools on how to best manage the disease and its’ symptoms while continuing to find joy and fulfillment in life.

Book of the Month

living with pd

Dr. Michael Okun, Dr. Irene Malaty and Dr. Wissam Deeb have recently published a state of the art “how to” guide for treatment of people with PD and caregivers. The book is easy to read, has minimal medical jargon and contains clinical “pearls” of wisdom gathered from their many combined years of treating people with PD from all over the world. It presents an overview of the latest information on helpful therapies, medications, neuropsychiatric challenges, nutrition, exercise, sleep and many other patient and caregiver concerns.

 In the link below, Dr. Okun shares some top tips from the book for families living their best life with the moving target called Parkinson’s Disease:

Caregiver TIPS and Tools

In addition to running the household, caregivers often simultaneously wear the following hats: nurse, social worker, activity director, home companion, chief financial officer, administrator, safety officer, family counselor and lawyer. With even the strongest and most resilient among us, it can be exhausting!

10 Tips for Family Caregivers

Noone needs to tell caregivers they are tackling one of the toughest jobs there is! Check out this resource for some good advice: 1. Seek support. You are not alone! 2. Take care of yourself to remain strong. 3. Accept offers of help. 4. Communicate effectively with doctors.

Family Caregiver Alliance

A Caregiver’s Bill of Rights

Many caregivers can lose themselves and what brings them joy if they are not mindful of their own needs. Here’s some universal considerations for all caregivers…

Caregiver Bill of Rights

Available for Fixel Institute Patients and Families

COVID-19 Neuro Outreach Program

A new program designed to fill the needs of members of the community with neurological conditions, designed by UF DPT in conjunction with the COVID-19 Student Service Corps.

neuro outreach

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 Jana Unislawksi.

CARES program

Parkinson’s Helpline


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.

PF hotline flip

About the Author


Heather Simpson, OTR/L

Heather Simpson graduated with a B.S. in Exercise and Sport Science with a minor in Early Education from the University of Florida in 2007. Following…

Read all articles by Heather Simpson, OTR/L