Lianna Marie - The Complete Guide for People With Parkinsons Disease and Their Loved Ones

Lianna Marie

Purdue University Press West Lafayette, Indiana

For Mom.
Thirty years with Parkinsons and your faith
and determination never wavered.

Copyright 2020 by Lianna Marie. All rights reserved.

Printed in the United States of America.

Library of Congress Cataloging-in-Publication Data

Names: Marie, Lianna, 1974 author.

Title: The complete guide for people with Parkinsons disease and their loved ones / Lianna Marie.

Identifiers: LCCN 2020010428 (print) | LCCN 2020010429 (ebook) | ISBN 9781557536600 (paperback) | ISBN 9781557536686 (epub) | ISBN 9781557536860 (pdf)

Subjects: LCSH: Parkinsons diseaseHandbooks, manuals, etc. | Parkinsons diseasePatientsCareHandbooks, manuals, etc. | CaregiversHandbooks, manuals, etc.

Classification: LCC RC382 .M367 2020 (print) | LCC RC382 (ebook) | DDC 616.8/33dc23

LC record available at https://lccn.loc.gov/2020010428

LC ebook record available at https://lccn.loc.gov/2020010429

This book is sold with the understanding that neither the author nor the publisher is engaged in tendering legal, accounting, medical, or other professional advice. If such advice or other assistance is required, the personal services of a competent professional should be sought.

A trained nurse, Lianna Marie served as her mothers caregiver and advocate for over 20 years through the many stages of Parkinsons disease. She founded AllAboutParkinsons.com, an online community that has connected and helped thousands of people with the disease, their families, and their caregivers.

The Complete Guide for People With Parkinsons Disease and Their Loved Ones is written for people recently diagnosed and their family members; Everything You Need to Know About Caregiving for Parkinsons Disease is a go-to resource for all caregivers of those suffering from Parkinsons. Both books share the goal of educating and helping everyday people with no specialized training, providing comprehensive information, practical tips, and guidance about how to deal with the emotional toll of the disease.

Marie speaks frequently to fellow caregivers, guardians, and nurse practitioners. Born and raised near Toronto, Marie now lives with her husband in Seattle. When not writing or speaking, she can be found in the swimming pool, training for her next competition. To learn more about Lianna Marie, her upcoming books, and her speaking schedule, visit www.liannamarie.com.

Everything You Need to Know About Caregiving for Parkinsons Disease

The Parkinsons Path: Your Guide to Finding Hope, Happiness, and Meaning on Your Journey With Parkinsons Fighting Parkinsons: 15 Vital Exercises to Help You Fight the

Progression of Parkinsons How to Parkinsons Proof Your Home: The Essential Guide to

Making Your Home Safer for Living With Parkinsons

Find these books and free resources at AllAboutParkinsons.com.

If you enjoy this book or find it helpful, I would be very grateful if you would post a short review where you purchased it. Your support really does make a difference, and I personally read all the reviews.

Parkinsons has been a part of my life for the past 30 years. Throughout that time, Ive been sharing my moms story about her experiences with the disease, as well as my own as her caregiver and advocate.

Her name was Val and she had the disease for 22 years before she developed dementia as well. Along her journey with Parkinsons she learned a lot, both about how to live and cope with the disease, and about herself.

As her daughter and caregiver, I learned a lot too.

When she was diagnosed, there wasnt a lot of information available to help us understand what it meant to have Parkinsons. We found a couple of medical books, but it was hard to find anything written by someone whod actually lived with the disease. So instead, we learned about Parkinsons by living with Parkinsons.

In 2005 when I wrote Everything You Need to Know About Parkinsons Disease, Mom had been living with Parkinsons for 15 years. She told me back then she wished there were more information available to help her understand and deal with her disease as it was progressing, and written in a way that she could understand. At that point no one had told us how powerful music could be in helping her mobility, or that there are reasons not to join a support group (there are definitely pros to joining one, but there are also cons), or that sometimes symptoms could disappear just by being really happy. We discovered these and many other useful nuggets on our own.

Together we came up with the idea of asking people with Parkinsons, as well as their families, friends, and caregivers, the most important questions they had about the disease. We received a lot of questions, both general and specific, and then answered them in the book.

Now, 20 years later, theres so much available to us online. You can pretty much Google anything you want and be inundated with information. The problem is, how do you know where to go? With so many websites out there (not to mention the ones whose main goal is to sell you some kind of drug therapy), it can be overwhelming.

In The Complete Guide, Ive answered new questions and updated old answers and tried to keep the information as succinct as possible. Each chapter begins with a tip or observation from one of my readersone of the many Ive received over the years. Whether you have Parkinsons or you know or care for someone who does, I hope this book will help you get the most important information in a way that you can understand.

Though Mom has now passed, my reason for writing the book remains the same: I want everyone who is affected by this disease to be as informed as possible so they can continue to lead happy, hopeful, and meaningful lives.

Lianna

Acetylcholine: a chemical found in nerve cells that transmits electrical impulses in the brain, the peripheral nerves, the heart, the bladder, the gut, and the muscles

Antioxidant: an enzyme or other organic substance, such as vitamin E or beta-carotene, that is capable of counteracting the damaging effects of oxidation to the cells in the body

Bradykinesia: slowness of movement

Dopamine: a chemical substance (neurotransmitter) found in the brain that sends impulses from one nerve cell to another and helps to regulate movement, balance, attention, learning, and emotional responses; the substance that is lost with Parkinsons

Dopamine agonists: drugs that imitate the effects of dopamine

Dyskinesia: an involuntary movement that can accompany peak doses of levodopa; the most common and disruptive side effect of Parkinsons medications

Dystonia: sustained muscle contractions or cramps that some people with Parkinsons experience

Excessive daytime sleepiness (EDS): a condition that causes people with Parkinsons to fall asleep or doze frequently during normal waking hours