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A person’s life story changes after a diagnosis of Parkinson’s. There begins a chapter of collaboration in care that eventually evolves into more hands-on caregiving. And whether you are caring with or for that person, it is guaranteed to involve you more and more over time and increase your understanding of the experience of another person.

We use the term Care Partnering in recognition that this journey is about successfully meeting both your needs and those of the person receiving the care.

Care Partnering: Managing Parkinson’s Disease Together

This practical, insightful book is an invaluable resource. It delivers supportive, accurate information to caregivers, and references to other resources that are a big help when navigating a Parkinson’s journey.

Sail On with Parkinson’s – A Care Partner Story

In 2010, Steve Van Vlaenderen realized his lifelong dream of buying a sailboat. A year later, Steve was diagnosed with Parkinson’s disease and he was devastated. Doctors told him the sailboat was not a good idea.

It was hard for his partner, Darlene Hildebrand, to watch.

“I just wanted to encourage him to keep going and not give up, because I knew what he was capable of,” Hildebrand said.

Two years later he made the decision to take back control of his life. In 2017, Steve and Darlene started Sail On with Parkinson’s, a fundraiser for Parkinson Canada. Over two summers, they sailed 3,200km on the Great Lakes starting in Duluth, Minnesota finishing in Gananoque, Ontario in the summer of 2019.

Table of Contents

Introduction | 10
What is Care Partnering? | 10
Chapter 1: The Care Partner Identity | 14
Chapter 2: Care for the Care Partner | 31
Chapter 3: Tips and Strategies | 55
Getting organized
Communicating with health professionals
Safety Considerations
Chapter 4: ACT on Time™ Program | 71
Chapter 5: Tips and Strategies | 83
Secondary Care Partnering
What Not to Do
Long-Distance Primary Care Partnering
Chapter 6: Paid Help | 83
Chapter 7: Advanced Parkinson’s | 101
Chapter 8: Planning Ahead | 131
Chapter 9: Planning and Decision-Making | 143
Chapter 10: When Care Partnering Ends | 151
Resources | 156
Appendices | 194
CarePartner Worksheets
Glossary of Terms