In January 2022, we began sharing the audio recordings from the sixth edition every Tuesday morning on The Parkinson’s Podcast. You can listen to the recordings on this page as well, which will continue to be updated as new chapters are released.
If you’d like to listen to the full collection of recordings from the fifth edition, you can do so here.
Foreword and introduction
Listen to the foreword of the newest edition of our Every Victory Counts manual, written by world renowned Parkinson’s expert Professor Bas Bloem, MD, PhD, along with the Introduction, which provides a roadmap to living well with Parkinson’s, a note from Davis Phinney, and much more.
Chapter 1- You Have Parkinson’s. Now What?
Hearing the words, “You have Parkinson’s,” is life changing. For some, a Parkinson’s diagnosis marks the end of a long and frustrating search to explain a collection of seemingly disconnected symptoms. For others, a Parkinson’s diagnosis is a complete shock, filled with feelings of disbelief and despair. For everyone, a Parkinson’s diagnosis brings a new and unexpected journey.
The good news is that there are numerous ways you can take action to make the journey a great one. Just a decade ago, researchers, clinicians, and people living with Parkinson’s alike did not stress the importance of exercise, stress management, nutritional choices, and other positive life choices on Parkinson’s. Today, we know your experience will be impacted positively by your choices and actions. This chapter shows you how to lay the foundation to live well with Parkinson’s today and for years to come.
Chapter 2- Parkinson’s 101
When you are first diagnosed with Parkinson’s, the sheer amount of information and the uniqueness of your experience can be overwhelming. We’re here to help. This chapter is designed to be a starting point for people newly diagnosed with Parkinson’s, answering some of the most common questions asked within the first year following diagnosis. It also provides some adaptive strategies to set you on the best path for living well with Parkinson’s, including staying engaged and informed about your health and about the actions you can take to improve your quality of life.
Chapter 3- Motor Symptoms
Although the motor symptoms of Parkinson’s tend to get the most attention and treatment, they often don’t appear until many of the brain’s nerve cells that produce dopamine have already stopped working. In this chapter, we’ll help you identify and learn about the primary Parkinson’s motor symptoms. Even though you may not experience all of them, knowing about common motor symptoms will help you be proactive in managing the motor symptoms you do experience so you can live well.
Chapter 4- Non-Motor Symptoms (Emotional)
While the effects of Parkinson’s on movement are often the most visible, non-motor symptoms, including emotional and cognitive challenges, can have an even more significant effect on your quality of life The effects of Parkinson’s not related to movement are called non-motor symptoms. Non-motor symptoms of Parkinson’s may outnumber motor symptoms and can appear years before motor symptoms. Non-motor symptoms include those that fall into three categories: emotional, cognitive, and autonomic. This chapter covers the most common non-motor symptoms related to emotional health, including depression, anxiety, and apathy. We’ll also explain how therapy, medication, and lifestyle changes can help you manage and treat these symptoms.
Chapter 5- Non-Motor Symptoms (Cognitive)
From memory problems to problem-solving challenges, cognitive changes are something that approximately 50% of people with Parkinson’s will experience. Cognition is a general term used to describe the mental ability to process information and apply knowledge. Not only can Parkinson’s slow down movement (bradykinesia), it can also slow down your ability to think and process information (bradyphrenia). In this chapter, we explain how Parkinson’s can impact cognition and how to manage these non-motor symptoms.
Chapter 6- Non-Motor Symptoms (Autonomic)
Some of the non-motor symptoms you may experience with Parkinson’s are connected to the effects Parkinson’s has on your autonomic nervous system, which regulates functions your body automatically does, like controlling blood pressure, managing sweat and temperature, managing digestion, and controlling heart rate. In this chapter, we discuss Parkinson’s impacts on the autonomic nervous system.
Chapter 7- medication
There are many different classes of medications that offer options for people with mild to advanced symptoms. Treatment discoveries are also progressing at a rapid pace, and new medications are continually added to this growing list. Currently, medication treatment can be divided into motor and non-motor symptom categories. In this chapter, we highlight the many categories of Parkinson’s medications, as well as what each category can help treat. For the most current, in-depth lists of medication names, side effects, contraindications, and additional information, be sure to head to the medication page of our Every Victory Counts website. We update that regularly as new information becomes available.
Chapter 8- Surgical Therapies
As Parkinson’s symptoms progress, increasing medications to address them can bring significant side effects, such as dyskinesia. Surgical therapies can be explored after medications are optimized, and the side effects of adding more medications start to outweigh the benefits the medications provide. Current surgical therapies include deep brain stimulation (DBS) and enteral suspension of carbidopa/levodopa. Focused ultrasound therapy (FUS) is a non-invasive image-guided therapy that’s an alternative to surgical interventions. In this chapter, we highlight these three procedures and why you may choose to get one at some point down the road.
Chapter 9- Exercise
Again and again, research and personal experience highlight the critical importance of exercise for people with Parkinson’s. Regular physical exercise can improve mobility and coordination, boost your mood, reduce stiffness, and minimize soreness and fatigue. And each year, more studies prove that exercise may slow the progression of Parkinson’s itself. This chapter digs into the importance of exercise in Parkinson’s, the type and intensity of exercise that might work for you, and how to create and stick to an exercise routine.
Chapter 10- Complementary Therapies
Living well with Parkinson’s requires a multi-dimensional approach, and while conventional medicine for the symptoms of Parkinson’s has come a long way, there are now more options than ever to live well with Parkinson’s. In this chapter, learn about many of the complementary therapies available and how they can help you live well with Parkinson’s.
Chapter 11- Nutrition
One of the most common questions we’re asked is this: “What should I eat now that I’ve been diagnosed with Parkinson’s?” The answer is that there is no one answer. Just as each person with Parkinson’s experiences different symptoms, each person reacts differently to different types of food. While there is no one-size-fits-all nutritional plan for Parkinson’s, there are sound guidelines that can serve anyone well. In this chapter, we look at the Mediterranean diet, the eating plan that many Parkinson’s experts recommend, frequently asked questions about nutrition and Parkinson’s, and more.
Chapter 12- Emotional Health
Parkinson’s impacts your whole self. Therefore, attending to your emotional health is just as important as taking care of your physical and mental health. In this chapter, we share ways to stay present, to view obstacles as opportunities, to ask for help when it’s needed, to give back, and to build self-care and compassion into your daily life.
Chapter 13- Social Connections, Relationships, and Community
Positive relationships and supportive environments play a significant role when it comes to facing adversity. The stronger our relationships and sense of connection to our communities, the better our health, outlook on life, and belief in our own self-efficacy and resilience. In this chapter, we look at relationships and community and how to stay connected to live well with Parkinson’s.
Chapter 14- General Health and Wellness
An important part of living well is to separate your Parkinson’s symptoms from other health- related issues. While Parkinson’s does impact your whole self, it is not your whole self, and there are many aspects of health unrelated to Parkinson’s that will impact you throughout your life. This chapter explores general health and wellness information to remember as you navigate your Parkinson’s, such as the importance of regular dental, vision, and skin screenings. It also explains how Parkinson’s may impact your vision, oral health, and skin, and how to ensure you stay on top of your preventative care routines.
Chapter 15- Long-Term Care and Financial Planning
Advanced preparation and planning is an essential part of living well with Parkinson’s, but sometimes it’s difficult to know where to start. This chapter will break down the what, how, and when of long-term care and financial planning and provide you with resources so you feel confident planning for the future.
Chapter 16 and the Appendix- Living Well with Parkinson’s Today and the Medical Bullshit Detector
Listen to chapter 16, “Living Well with Parkinson’s Today,” and the Appendix, “The Medical Bullshit Detector,” of the newest edition of our Every Victory Counts® manual. Living well with Parkinson’s is a choice and a constant effort, but as many people in our community would say, the effort is worth the result. In chapter 16, you’ll get advice and actions steps you can take right away to begin living well with Parkinson’s, today and in the future. A large part of living well with Parkinson’s is deciphering Parkinson’s fact from fiction. While there are many emerging therapies and treatments for Parkinson’s, there are also, unfortunately, many unsupported claims and “false” treatments out there as well. The appendix, titled “The Medical Bullshit Detector,” will help you learn how to vet the Parkinson’s research and stories you hear.