Videos & Webinars

Expert Briefing: Advanced Parkinson's and Palliative Care in the 21st Century

In this webinar, Dr. Janis Miyasaki reviews the WHO criteria for palliative care, the various models of palliative care delivery, hospice and hospice criteria in the US, the challenge of palliative care coordination with subspecialists and the people required to make palliative care work. She alsos review the symptoms of PD not often associated with symptom burden in addition to spouse and family challenges.

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Presenter

Janis M. Miyasaki, MD, MEd, FRCPC, FAAN
Director, Parkinson and Movement Disorders Program
University of Alberta

Audiobooks

Surgical Options: A Treatment Guide to Parkinson’s Disease

The aim of this book is to describe the various types of surgical treatment that can be utilized to reduce Parkinson’s disease (PD) symptoms in a subset of carefully selected individuals with a specific symptom or symptoms. This book will focus on the following potential therapies: deep brain stimulation (DBS), duopa therapy, lesion therapy, focused ultrasound.

This book was designed as a practical guide to explain the complete process required for people with Parkinson's and families considering surgical therapy. The content describes everything from the decision to have surgery, and the day of surgery, to surgical recovery. While the information contained in this book is intended to facilitate a discussion of surgical options with family, friends and healthcare team members, it is not meant to replace the advice of expert healthcare professionals involved in your care.

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Fact Sheets

Anxiety and PD

Like people with other chronic diseases, people with Parkinson’s disease (PD) often struggle with mental health. While the illness is known to impair many aspects of movement, research from the Parkinson’s Outcomes Project has found that two non-motor symptoms — depression and anxiety — play a key role in the disease and on people’s quality of life.

While feeling worried is an understandable reaction to a Parkinson’s diagnosis, when feelings of constant worry or nervousness go beyond a reasonable point, a person may experience anxiety, which is more serious.

Forms of Anxiety

Anxiety is a common non-motor symptom of PD. Anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in brain chemistry. Up to 40% people with PD will experience one of these forms of anxiety:

Generalized Anxiety Disorder (GAD) is characterized by feelings of nervousness and recurring thoughts of worry and fear. Physical symptoms that may accompany these feelings include butterflies in the stomach and nausea, trouble breathing or swallowing, racing of the heart, sweating and increased tremors.

Anxiety Attacks, or panic attacks usually start suddenly with a sense of severe physical and emotional distress. Individuals may feel as if they cannot breathe or are having a heart attack. These episodes usually last a few minutes to an hour, particularly when associated with “off” periods, though they can last for longer periods of time.

Social Avoidance, or social anxiety disorder, involves avoiding everyday social situations because of a fear of embarrassment caused by having having Parkinson’s symptoms, such as tremor, dyskinesias, or noticeable trouble walking in public.

Obsessive-Compulsive Disorder (OCD) may cause persistent, unwelcome thoughts or images (obsessions), and the urgent need to engage in certain rituals (compulsions) to try to control or rid themselves of these thoughts. Anxiety can begin before a PD diagnosis or develop much later on. While some people with PD experience anxiety on its own, many are diagnosed with anxiety along with depression. Anxiety is less well-studied than depression, but it may be just as common. If left unchecked, anxiety can worsen a person’s overall health condition.

Causes of Anxiety

Psychological Factors - Common fears and worries that go along with PD may trigger anxiety. One is a fear of being unable to function independently, particularly during a sudden “off” period (the time of day when medication is not working).

Biological Factors - Many of the brain pathways and chemicals affected by Parkinson’s are the same as those affected by anxiety and depression. In some cases, anxiety is directly related to changes in motor symptoms. Specifically, people who experience “off” periods can develop severe anxiety during these states, like anxiety attacks.

How Is Anxiety Diagnosed?

Anxiety is usually diagnosed by a primary care physician, or a mental health professional, who will ask questions about certain symptoms. The doctor usually asks questions about mood changes and behaviors. For people with an anxiety disorder, symptoms can become so intense that they are unable to function normally in life.

In general, symptoms of anxiety may include:

  • Excessive fear and worry
  • Uncontrollable or unwanted thoughts
  • Sudden waves of terror
  • Nightmares
  • Ritualistic behaviors
  • Problems sleeping
  • Pounding heart
  • Cold and sweaty hands
  • Dizziness
  • Nausea

In people with Parkinson’s, a diagnosis of an anxiety disorder is made only if the symptoms involve a clear change in a patient’s previous behavior and are not easily confused with motor symptoms. For example, even though there may be a legitimate concern that a tremor or change in walking ability may be noticed in public, a diagnosis of social avoidance is only made if the person realizes that the concern is excessive, the social situation is avoided, and it causes interference in the person’s social or work life.

Treating Anxiety

There are two main types of treatment options for anxiety: medications and psychological counseling (psychotherapy). Depending on the severity of symptoms, psychotherapy can be used alone or combination with medication. Care should be tailored to each person’s individual needs.

Psychotherapy

Psychotherapy or “talk therapy” refers to many varieties of counseling. This treatment can help people diagnosed with an anxiety disorder understand and better manage their symptoms. Psychotherapy offers two advantages: no drug side effects and coping skills that can be used over the long term.

Cognitive behavioral therapy (CBT) is effective at helping people change negative thinking patterns and behaviors to solve their problems and engage in life. CBT encourages people to develop more positive thoughts about themselves, the environment around them and their future: in this case the outcome related to their illness.

Counseling sessions can provide vital support, understanding and education. People with PD may be seen alone, as a couple or family, or in a group.

Non-Conventional Therapies for Anxiety

  • Relaxation techniques
  • Massage therapy
  • Acupuncture
  • Aromatherapy
  • Meditation
  • Music therapy

Tips for Living with Anxiety

  • Educate yourself about PD and its symptoms, including anxiety.
  • Keep a diary of your moods, medications and PD symptoms.
  • Figure out what triggers your anxiety.
  • Talk with your doctor about anxiety.
  • Tell your care partner and family members how you are feeling, so they can understand your emotions better and help you cope.
  • Find a support group for people with PD.
  • Be flexible in your approaches to coping with anxiety; try different approaches.
  • Understand that symptoms change; if a coping strategy stops working, try a new approach.
  • Know that everyone experiences anxiety differently.

Call our Helpline for more information at 1-800-4PD-INFO (473-4626).

Videos & Webinars

Veterans and PD: What You Need to Know

The VA estimates that 110,000 veterans have Parkinson’s disease. For some veterans, developing PD can be associated with exposure to Agent Orange or other herbicides during military service. Watch this on demand recording to learn more about the latest treatment advances from Parkinson’s experts and hear from veterans who are now living with Parkinson’s disease. The video explores the resources and support services that veterans have access to through the VA and the Parkinson’s Foundation.

For more information, visit Parkinson.org/Veterans.

Books

Hospital Action Plan

As you already know, getting diagnosed with Parkinson’s disease is a life-changing experience. What you may not know is that people with Parkinson’s disease are admitted to the hospital 50 percent more than their peers. And, once admitted, they typically have longer hospital stays.

Fortunately, there is a lot you can do to change that. When your Parkinson’s is well controlled—you get your medication on time, you receive consistently good medical care and you are an active participant in your treatment team—you are more likely to stay well. This lowers your chance of being hospitalized and improves your ability to recover more quickly from illness or surgery.

To help you get the high-quality hospital care you deserve, the Parkinson’s Foundation created a program called the Aware in Care campaign. This initiative is one of many that we have undertaken to help you gain control of your health. We believe that one of the first steps is education— including educating your doctors and nurses on how to take good care of you during a hospital stay.

This is your guide to prepare for both planned hospital visits and emergency treatment. The information in this kit is relevant even if your visit to the hospital is unrelated to your Parkinson’s diagnosis. In addition, these materials are useful beyond hospital walls. Bring your kit with you for any in-patient stay, whether it is a rehabilitation, assisted living, skilled nursing or other care facility.

Included in this guide are useful tips on how to use your Aware in Care kit to get the right care at the right time. We hope this blueprint to better care will help you and your family on your Parkinson’s journey. Read on to get started today.

Books

Women and Parkinson's Research and Care Agenda

Parkinson’s disease (PD) affects approximately one million men and women in the United States, and more than 10 million people worldwide. Women have been shown to have a lower risk of developing PD, and research suggests that there are differences in the way that men and women experience Parkinson’s. Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day and receive lower-quality healthcare than men. This publication aims to highlight the historically unmet research and care needs of women with Parkinson’s disease, and elicit action in addressing these needs in future research and care.

Audiobooks

Medications: A Treatment Guide to Parkinson’s

There is no standard treatment for Parkinson’s disease (PD). Treatment for each person with Parkinson’s is based on his or her symptoms. There are many medications available to treat the Parkinson’s symptoms, although none yet that reverse the effects of the disease.

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Books

Surgical Options: A Treatment Guide to Parkinson's Disease - Updated

The aim of this book is to describe the various types of surgical treatment that can be utilized to reduce Parkinson’s disease (PD) symptoms in a subset of carefully selected individuals with a specific symptom or symptoms. This book will focus on the following potential therapies: deep brain stimulation (DBS), duopa therapy, lesion therapy, focused ultrasound.

This book was designed as a practical guide to explain the complete process required for people with Parkinson's and families considering surgical therapy. The content describes everything from the decision to have surgery, and the day of surgery, to surgical recovery. While the information contained in this book is intended to facilitate a discussion of surgical options with family, friends and healthcare team members, it is not meant to replace the advice of expert healthcare professionals involved in your care.

This book is only available digitally to view, download or print. It is also available in Kindle and audiobook formats.

Abbott logo

This book has been made possible through generous Parkinson’s Foundation donors and a grant from Abbott.

Books

Speech & Swallowing: A Body Guide to Parkinson’s Disease

About 75 percent of people with PD experience changes in speech and voice at some time during the course of the disease. These changes usually come on gradually and can vary from mild to severe.

Problems communicating can lead to feelings of frustration, depression and withdrawal. Learning how PD affects communication and what you can do about it can help you better cope with problems that you might experience.

Many of these problem areas can be improved with PD-specific exercise programs, devices that help communication and strategies/techniques that can help you and your conversation partners to communicate more effectively and efficiently.

This book is only available digitally to view, download or print. It is also available in Kindle and audiobook formats.

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