Maria De Leon MD - Parkinsons Diva

Parkinsons Diva

A Womans Guide to Parkinsons Disease

Maria L. De Len, MD

Parkinsons Diva: A Womans Guide to Parkinsons Disease

Copyright 2015 Maria L. De Len, MD

All Rights Reserved

This book or any portion thereof may not be reproduced without the express written permission of the publisher, except for the use of brief quotations in a book review and certain other noncommercial uses permitted by copyright law.

First edition 2015

Published in the USA by thewordverve inc. (www.thewordverve.com)

eBook: 978-1-941251-48-5

Paperback: 978-1-941251-49-2

Library of Congress Control Number: 2015944766

Parkinsons Diva: A Womans Guide to Parkinsons Disease

A Book with Verve by thewordverve inc.

Cover artwork by Ros Webb

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Cover and interior design by Robin Krauss

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eBook formatting by Bob Houston

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This book is dedicated first and foremost to my God without whom I would not be here. Secondly, to my grandmother, whom I resemble most and who also suffered from Parkinsons disease and did it with such panache. I only hope to live life half as good as she did; to my loving husband; my precious daughter Victoria, who is the joy of my life; and the women of the DNC-De Leon Neurological Clinic, who are the epitome of courage. Even in the face of insurmountable odds they continue to persevere in their faith and spirit of hope, smiling until the bitter end, saying, All is well! I also dedicate this book to my friends and colleagues who are women healers in their own right, who lead by example. Their spirit gives me strength to carry on the good fight even when my body fails me, as it often does.

It is their hope which I want to infuse and impart to all who read this book. After all, it is HOPE which makes a dismal today bearable because of the promise of the brighter tomorrow. Life can come at you fast, but despite the curve balls along the way, I would not miss the rainbows nor a Plan B left behind as a gift from Parkinsons disease, because they are all an opportunity for new beginnings or a second chance, if you will, and neither should you.

Your journey begins now in finding your rainbows behind the storm known as Parkinsons disease.

Love you, Dad. Thank you for always believing in me!

It is tough being a woman and having Parkinsons... sometimes it makes me feel like I am an enchilada short of an enchilada platter!

Yet, I am a product of my sweet grandfathers unconditional love and upbringing, which has given me the strength to persevere. He was the love of my life and I his. He taught me two very important things in life: 1) the love for an almighty God, and 2) the love for the arts and sciences. From an early age, he raised me to understand that knowledge was the key to mastering the world, as long as I always looked and acted as a lady of distinction, ready for any occasion. I was always welcome to join him in his business world of wheeling and dealing... but not until I was properly dressed! Along with my first poetry and history books, he included a book on etiquette. So, he created the roots of the diva in me, and I carry on his lessons as best I can every day. Who would send a Glamour Shot picture of herself to a residency interview? Me! Who would buy a car without even having a drivers license? Me! Each time life throws me a curveball or a bunch of lemons, I not only make lemonade but a lemon pie, and depending on my whimsy, maybe Ill even throw in a margaritajust to show life whos boss.

To all the beautiful women with Parkinsons disease around the world: I pray this book provides guidance and encouragement on how to maintain control of your lives and let your inner divas sparkle.

Facts & Demographics About Women

Parkinsons Women Improperly Represented in Clini cal Studies

History and Symptoms of Parkinsons Disease

Parkinsons Disease Presentation Varies Depending on Age of Onset and Gender

Misdiagnosing PD in Young Women

Coping with Parkinsons: Spirituality, Religion & Health

Raising Children When Mom Has Parkinsons

Pregnancy and PD: What to Expect When You Are Expecting

Love and Marriage in PD (Till Death Do Us Part)

Sex and Parkinsons: The Bedroom Goddess

Parkinson Medication Effect on the Female Patient

Beauty Tips for the Parkinsons Diva

Tools & Gadgets Every Parkinsons Diva Should Own

Domestic Diva and PD

What Every Woman with Parkinsons Should Have

Four Keys to Unlocking Happiness in the Midst of PD

Exercise and PD

Emotional exhaustion in PD

Art Therapy: An Alternative Therapy for Treatment of PD

Current Treatments: The Good, the Bad & the Promised Land

Nutrition Matters in PD

Caregiving in Parkinsons

Wrap-up

There are a lot of books on the subject of Parkinsons, but there are few dedicated to young onset Parkinsons disease (YOPD), and even fewer focusing on the subject of women issues in PD as a whole.

For years, we in medicine have been practicing and dispensing advice on therapies, treatment plans, and dictating prognoses for YOPD, based on studies that do not reflect the patients makeup. Most Parkinsons studies reflect the experiences of predominantly white, male, and older patients... because up until recently, that was what the medical books showed as characteristic of a typical Parkinsons patient.

As a woman who just happens to have Parkinsons and as a neurologist, I know for a fact that man and women are NOT wired the same. So we should take into account both gender and hormone differences, including whether a woman is lactating or is pre- or postmenopausal, when dispensing medical advice and deciding which medical treatment suits the young female Parkinsons patient best.

The face of Parkinsons disease today is not the same as when I started my training in neurology, which was not that long ago. Less than twenty years ago, I encountered my first young Hispanic Parkinsons patient. She had just turned forty and already had been suffering from Parkinsons for at least fifteen years. At that time, I was young and nave, and other than being sad and impressed by her disease and age of onset, I did not think to inquire about her social life struggles. How did her marriage and family life survive such a long and debilitating illness? Did she have trouble conceiving or difficulties during pregnancies? What other history could she share with me? This patient is special to me in so many ways, starting from the first time we met and going all the way through the journey of her being the first patient I ever supervised from beginning to end for a pallidotomy, including assisting in the operating room. A pallidotomy is a surgically induced brain lesion in the globus pallidus, performed prior to the advent of deep brain stimulation (DBS) to control involuntary muscle movements (dyskinesia). The memory of this patient stays with me all these years later, throughout my journey as a physician, and now as I write this book. Later, when I became a fellow at Baylor College of Medicine, under the tutelage of world-renowned movement disorders specialist, Dr. Joseph Jankovic, I encountered a second patient who came to us with Parkinsons, in her twenties, and in a pregnant state. None of us, including the medical experts with whom Id trained and been practicing for over twenty years had ever witnessed this unprecedented event. Most of us were at a loss as to how to treat her because the potential for harming the fetus with the treatment options back then was not known.