Living Well with Parkinson's Disease: What Your Doctor Doesn't Tell You....That You Need to Know

by Michael J. Church, Winifred Conkling

Overview

A complete guide to Parkinson’s from two people with the disease who cofounded a national support and advocacy organization.

In Living Well with Parkinson’s Disease, Gretchen Garie and Michael J. Church, a couple who both have Parkinson’s and live daily with the effects of the disease, thoroughly discuss diagnosis, treatment options, and the emotional consequences of this difficult illness. With a conversational, pragmatic, and personal tone, they offer advice on such topics as:

• How Parkinson’s disease affects relationships
• The role of diet, supplements, and rest and relaxation
• Strategies for navigating professional life and the maze of the health-care system
• Handling everyday challenges such as buttoning a shirt or rolling over in bed
• And more!

Compassionate and inspiring, Living Well with Parkinson’s Disease offers knowledge and wisdom from those who understand the challenges of dealing with Parkinson’s every day.

“[Gretchen and Michael’s] firsthand knowledge as patients, coupled with their years of experience as experts and advocates, allow them to offer a unique perspective. Using the information provided by Gretchen and Michael in this book, you, too, can live well with Parkinson’s disease.” —John D. Campbell, MD, neurologist and medical director for PASFL, the Parkinson’s Association of Southwest Florida

Product Details

ISBN-13:	9780061748592
Publisher:	HarperCollins
Publication date:	12/15/2023
Sold by:	Barnes & Noble
Format:	eBook
Pages:	274
Sales rank:	610,529
File size:	801 KB

About the Author

Gretchen Garie is president of Movers and Shakers, a Parkinson's advocacy group, and Congressional Coordinator for the Parkinson's Action Network for the state of Florida. Her husband, Michael J. Church, is executive director of Movers and Shakers and is the Florida State Coordinator for the Parkinson's Action Network. They live with their children in Naples, Florida.

Winifred Conkling has written many nonfiction books for adults and children. She earned an MFA in writing for children and young adults from the Vermont College of Fine Arts. Winifred lives in Northern Virginia with her family. Visit her online at www.winifredconkling.com.

Read an Excerpt

Living Well with Parkinson's Disease
What Your Doctor Doesn't Tell You....That You Need to Know

Chapter One

What Is Parkinson's Disease?

For me, Parkinson's disease started with a twitch in the pinkie of my right hand. I stared down at my finger, willing it to behave but unable to stop the incessant flutter. I was 32 years old, and I never considered that I might have Parkinson's disease.

I did suspect that something was wrong with me. For months I had tired easily. My legs hurt during the day and felt restless at night. I felt like I was shaking on the inside and there was nothing I could do to make it stop. I went from one doctor to another, enduring tests for Lyme disease, lupus, Wilson's Disease, and sleep apnea. The results were all negative. Some people told me it was all in my head; I started to believe them. When your whole world feels crazy, it's easy to question your sanity.

Finally, a doctor wrote me a prescription for Sinemet, a drug used to treat Parkinson's patients. Within days, my fingers stilled, my insides quieted, and I felt like myself again. My doctor then told me two things: I definitely had Parkinson's disease—and I could not use the drug that gave me that brief period of physical relief. He explained that this was a strong medication but that it has side effects that appear after several years' use; I should use other, somewhat less effective medications for as long as possible, saving the stronger drugs for when I needed them most. I felt the double blow of a cruel diagnosis and a cruel treatment regimen.

Michael's diagnosis came as very unwelcome news on his 32nd birthday. For severalyears, his legs had shaken and wobbled uncontrollably during periods of stress or conflict. He tried to minimize stress by quitting his job as director of an insurance school in Florida and switching to a retail management position. "Sales quotas and other high-stress expectations seemed to trigger the same weak-in-the-knees symptoms, which I ignored again," he said. "A year and a half passed, and the symptoms grew progressively more frequent and more intense." He also noticed a twitch of the two smallest fingers of his left hand. The more intense the stress, the more intense his symptoms became.

Michael saw a morning television program that mentioned a thyroid disorder causing similar symptoms. His doctor performed various tests, all of which were inconclusive. He was referred to a neurologist, who prescribed a three-day course of Sinemet. At the follow-up appointment, he told his doctor he felt much better—and the doctor told him he had young-onset Parkinson's disease.

"I remember thinking, 'Is this right? Isn't that a senior's disease? There must be some mistake,'" said Michael. "This was an unwanted birthday present, and it began what I consider to be the biggest challenge of my life."

In the years since then, Michael and I have had to become experts on living with Parkinson's disease. We have learned a great deal about what it is and how it affects the body. This chapter will cover the basics of PD and how it affects the brain, muscles, and neurological system.

Dopamine and the Brain

In the simplest terms, Parkinson's disease is a movement disorder in which the brain doesn't have enough of the chemical dopamine to help transmit nerve impulses throughout the body. It is a degenerative condition; you'll have good days and bad days, but over the years, your condition will worsen as more and more dopamine-producing cells are destroyed.

In your day-to-day life, Parkinson's will present a number of physical challenges, depending on which symptoms you have. The three classic motor symptoms of Parkinson's disease are tremor (shaking), rigidity (stiffness), and bradykinesia (slowness). (The symptoms of Parkinson's disease are described in detail in Chapter 3.)

Doctors often claim that the symptoms of Parkinson's don't hurt, but I know for a fact that isn't true. On many days, my muscles and joints ache. Karen M., 56, agrees: "Parkinson's does hurt. Doctors may tell you it doesn't hurt, but they don't live with it so they don't really know. I haven't been comfortable for at least five years. My muscles tighten and become stiff. Sometimes it's very painful and other times it's just uncomfortable."

For most people with Parkinson's disease, their symptoms will come and go, hour by hour, day by day. "People see you when your medication is 'on' and you're walking around and looking almost normal, and so they think you're faking it when you're 'off,'" said Karen. "My daughter said to me, 'You can get up and get going when you want to go to the flea market, but not when we need to go where I want to go.' Unfortunately, it's hard for other people to understand that things can change from minute to minute."

When symptoms are active, Parkinson's disease can make it difficult to button a shirt, rise from a chair, roll over in bed, walk to the bathroom, or sign a letter. When symptoms are inactive or under control with medication, it may be impossible to detect that someone has Parkinson's disease.

Typically, the disease progresses slowly, taking several years before symptoms become significant enough to cause serious disability. However, Parkinson's disease will change your life from the moment of diagnosis. While the initial physical symptoms may be mild, the psychological challenges are often toughest to deal with early in the disease. Medication may hide the outward symptoms of Parkinson's disease for many years, but a person may be suffering emotionally during this time. Most people wrestle with feelings of betrayal ("How can my body do this to me?"), injustice ("Why me?"), anger ("It's not fair!"), and fear ("What will become of me? How will I survive?").

Marian, 60, has found it difficult to make other people understand how her condition can change throughout the day. "My friends and family expect me to be the same person I was before, but I'm not the same mentally or physically," she said. "When my medication controls my tremors and outward symptoms, I look like the same person I was, but I'm not inside. I look the same, but I'm not the same person anymore."

Living Well with Parkinson's Disease
What Your Doctor Doesn't Tell You....That You Need to Know. Copyright © by Gretchen Garie. Reprinted by permission of HarperCollins Publishers, Inc. All rights reserved. Available now wherever books are sold. <%END%>