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

Managing Anxiety in Parkinson's

Anxiety affects many people with Parkinson’s disease (PD) and can impact quality of life as much as movement symptoms. Recognizing

the signs of anxiety and understanding how it is connected to PD can help you manage symptoms and improve your well-being.

Quick Facts

  • About 40% of people with PD experience anxiety.
  • Brain changes that affect movement can also contribute to anxiety.
  • Anxiety often makes other PD symptoms more difficult to manage.

Signs of anxiety:

  • Ongoing fear or worry
  • Feeling on edge or overly alert
  • A sense of doom or dread
  • Irritability or restlessness
  • Unwanted, repetitive thoughts
  • Sudden panic or terror
  • Difficulty sleeping
  • Trouble focusing
  • Avoiding situations and places
  • Physical symptoms like fatigue, racing heart, dizziness or nausea
  • Excessive sweating
  • Internal shaking or buzzing

Understanding Anxiety in Parkinson's

Anxiety can develop at any stage of Parkinson's. For some, anxiety starts before diagnosis. For others, it becomes noticeable around diagnosis, often intertwined with the emotions of a major life change. Anxiety may also develop or worsen as symptoms progress.

While the exact causes of anxiety aren't fully understood, several factors can contribute, including family history, brain chemical imbalances, health conditions and stressful or traumatic experiences.

Parkinson's can also play a role in different ways:

  • Brain changes — Parkinson's causes a loss of dopamine, a chemical that regulates movement and mood. This loss, along with changes in other brain chemicals, can cause or worsen anxiety.
  • "Off" periods — PD medication increases dopamine, but its effects can wear off between doses. When dopamine levels drop, movement and some non-movement symptoms, like anxiety, can worsen — sometimes without warning.
  • Daily life with Parkinson's — Coping with symptoms often brings up a range of feelings, including frustration, fear and anxiety.
  • Sleep disturbances — Parkinson’s impacts sleep in different ways. Poor sleep can worsen anxiety and other symptoms.
  • Isolation — PD symptoms can make it more difficult to stay socially connected. This can increase feelings of loneliness and anxiety.
  • Uncertainty — Not knowing how Parkinson's will affect quality of life or independence can create anxiety.

Recognizing Anxiety in Parkinson's

Anxiety can show up in different ways, such as constant worry, fear of social situations or sudden panic attacks. Sometimes there's no clear cause — just a lingering sense of unease or dread. Anxiety can also cause physical symptoms like a racing heart, nausea or fatigue.

Just as Parkinson’s impacts anxiety, anxiety can worsen PD symptoms like tremor or sleep issues, creating a difficult cycle.

Feeling stressed or anxious from time to time is normal, especially when living with a chronic condition like Parkinson's. However, if these feelings stick around or start to interfere with daily life, it is important to talk with your healthcare team.

Managing Anxiety in Parkinson's

Anxiety can feel overwhelming, but you are not alone. There are strategies and treatments that can help:

  • Manage PD symptoms — If your anxiety is tied to “off” periods or symptoms in general, talk to your doctor about adjusting treatment. Tracking anxiety and medication timing can help identify patterns.
  • Support mental health — Focus on one task at a time, organize your space and prioritize rest, healthy eating and exercise. Mindfulness techniques like yoga, meditation and breathing exercises can also help.
  • Explore talk therapy — A therapist can offer support and tools like cognitive behavioral therapy for managing difficult thoughts and emotions. Ask your doctor for a referral or contact our Helpline.
  • Stay connected — Combat isolation by reaching out to friends, family and support groups. Consider joining PD-specific groups where you can share experiences and discover strategies for managing anxiety.
  • Consider medications — Antidepressants can help with anxiety and mood but may take time to work. Some also aid sleep or other symptoms. Talk with your doctor about options — and a psychiatrist if needed. Learn more at Parkinson.org/MedicationsBook.

Tips for Managing Anxiety

  • Keep a routine. Predictable timing for medications, meals and rest helps lower anxiety.
  • Have a plan. Work with your care team to develop strategies for managing anxiety when it arises.
  • Loop in others. Let family and friends know that anxiety is often part of PD and how they can support you.
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

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.

Books

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.

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

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.

Fact Sheets

Women and PD

Parkinson’s disease (PD) affects an estimated 10 million men and women 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 (“fluctuations”) and receive lower quality healthcare than men.

What explains these differences? Based on the evidence so far, researchers can make some educated guesses. Some differences may have to do with biology—the way men’s and women’s bodies react to the disease or to therapies. Others may be due to lack of access to healthcare or to unintended differences in the way women are treated for PD compared to men.

Why the Lower Risk?

Studies conducted around the world, and across race, ethnic and age groups, support the finding that women overall have a lower risk of developing PD than men, but we still don’t know why. Environmental factors could explain this lower risk. It may be that women are less likely than men to be exposed to pesticides or heavy metals, or to sustain a head injury—all of which may increase a person’s PD risk.

Biological differences between women and men may also play a role. Estrogen, the female sex hormone, may protect the brain against PD, but little is known about its influence. If estrogen is preventative, it may only be helpful at certain levels or for a specific time.

What Are the Symptom Differences Between Men and Women?

Parkinson’s symptoms vary enormously from person to person. PD symptoms include motor symptoms, like tremor and stiffness, and nonmotor symptoms, like depression and fatigue.

Although women report experiencing some symptoms (including depression) more often than men, research to date has not conclusively shown whether symptoms affect women and men differently. This may be because symptoms vary as much among women as between women and men.

Are There Differences in Parkinson’s Treatment Between Men and Women?

All current treatment options (including medications, surgical options and exercise) address PD symptoms, but they do not slow down or stop the progression of PD. Levodopa, often prescribed as Sinemet, is considered the gold standard therapy for Parkinson’s movement symptoms. However, many people with PD experience changes in the effectiveness of the drug as the disease progresses. And some studies suggest that women are more likely than men to report these fluctuations earlier in the disease course and more frequently overall.

In particular, it seems that women are more likely to have involuntary movements called dyskinesias that occur when levodopa levels are highest in the blood. There are several factors that could be contributing to dyskinesia, including dosage, body weight and age of onset. Lower body weight can affect how medications build up in someone’s system. Lighter people sometimes need a smaller dose of medication to feel its effect. On average, women weigh less than men. If women and men are receiving similar doses, this may explain how levodopa levels are causing dyskinesias.

Physicians have also suggested that they find it harder to fine-tune Parkinson’s medications for women than for men. Women more often experience large swings in symptoms from even small changes in medications or schedules.

Deep brain stimulation (DBS) is an accepted surgical therapy for both men and women whose symptom fluctuations are difficult to control. Yet, even though women are reported to have greater improvement in quality of life after DBS, studies have shown that they are less likely than men to receive this therapy.

Are There Differences in Parkinson’s Care Between Men and Women?

Women with PD may face more barriers to quality healthcare and social support than men. Women are less likely than men to be cared for by a Parkinson’s specialist, such as a neurologist or movement disorder specialist, and are also less likely to have a care partner. On the other hand, women with Parkinson’s are more likely to do the following:

  • Go to doctor’s appointments alone
  • Use home healthcare
  • Live in a skilled nursing facility

All these factors mean that women may not have access to adequate Parkinson’s care.

Conclusion

Research to date on women’s experience of PD underscores the need to focus more on this important part of the Parkinson’s community. Compared to men, women are diagnosed with PD less often, respond differently to current therapies, have less access to and lower use of expert care and are less socially supported. These combine so that women with PD have poorer quality of life than men. Studies that specifically address these issues are needed to improve the lives of all people affected by Parkinson’s.

Key Facts

  • Women have a lower risk of developing Parkinson’s.
  • There may be sex differences in PD symptoms, but the data are inconsistent.
  • Small changes in medications or schedule can cause women to experience big changes in their symptoms, with dyskinesias being the most frequently reported side effect.
  • Despite greater reported improvements to quality of life than men, women are less likely to receive deep brain stimulation (DBS).
  • Women are less likely than men to be cared for by a PD specialist, neurologist or movement disorder specialist.
  • Women with PD are accessing medical care for their Parkinson’s less than men.
Fact Sheets

Urinary Problems in Parkinson's Disease

Parkinson’s disease (PD) has many features that have little or nothing to do with movement. Among these non-motor symptoms are problems with the autonomic nervous system — the part of the nervous system that controls “automatic” bodily functions, such as heart rate, blood pressure, sweating, sexual function and both gastrointestinal and urinary function. These symptoms are often among the most serious and complex issues faced by people with PD.

Unlike bowel dysfunction (e.g., constipation), which often occurs before Parkinson’s movement symptoms, urinary dysfunction is not typically a problem until the later stages of the disease.

Bladder Problems in Parkinson’s

The primary function of the bladder is twofold — to store urine as it is made and then to empty the urine. With Parkinson’s, problems can emerge in both areas.

Recent studies suggest that 30-40% of people with Parkinson’s have urinary difficulties. Despite the frequency of urinary dysfunction, actual urinary incontinence is relatively uncommon. Troublesome incontinence develops in only about 15% of people with Parkinson’s.

The most common urinary symptoms experienced by people with Parkinson’s are:

  • The need to urinate frequently
  • Trouble delaying urination once the need is perceived, creating a sense of urinary urgency

These symptoms usually mean you have an irritable or overactive bladder. Your bladder is signaling the brain that it is full and needs to empty when, in fact, it is not. This can happen at any time, so you might have to get up multiple times during the night to go to the bathroom.

Impairment of bladder emptying is a less frequent but still troublesome feature of urinary dysfunction in Parkinson’s. This may be caused by delay or difficulty in relaxation of the urethral sphincter muscles. These muscles must relax for the bladder to empty. This can result in hesitancy in initiating urination, difficulty in generating a stream and incomplete emptying of the bladder. Dystonia – involuntary muscle contractions – of the urethral sphincter has also been described.

Treatment

Medications that work to block or reduce bladder overactivity can be useful in treating urinary frequency and urgency. These include oxybutynin, tolterodine, solifenacin and darifenacin.

These medications are not helpful for problems emptying the bladder and may actually aggravate the difficulty. Medications such as bethanechol can help, but intermittent self-catheterization is sometimes necessary. Before initiating these, a doctor must make sure that some unrelated process, such as an enlarged prostate, is not responsible for the problem.

You may benefit from seeing a bladder specialist (urologist) for help with medication and lifestyle adjustments.

Conclusion

Being aware that urinary problems, such as urinary tract infections, can be a symptom of Parkinson’s is the first step toward management. Do not hesitate to bring these problems to the attention of your healthcare team. Effective treatment is often available.

Fact Sheets

Understanding PD: Misconceptions, Reality and Facts

There are many myths and misconceptions about Parkinson’s disease (PD) and its treatment. Knowing what is fact or fiction can help optimize your care and quality of life.

Misconception: Parkinson’s ONLY affects movement, or motor symptoms like tremor, stiffness and slowness.

  • Reality: Many symptoms of PD are unrelated to movement. Non-motor symptoms are quite common and include impaired sleep, constipation, bladder symptoms, fatigue, pain, tingling, lightheadedness, cognitive difficulty, anxiety and depression.
  • Fact: Many motor and non-motor symptoms of Parkinson’s are highly treatable.

Misconception: You can judge how severe a person’s Parkinson’s is based on a single observation.

  • Reality: Many Parkinson’s symptoms can fluctuate and not all symptoms are visible.
  • Fact: Many people with Parkinson’s can experience ON times (when they feel well and medications are working) and OFF times (when symptoms are problematic and medications are not working). Keeping track of your symptoms in relation to your medication times and dosages can help your provider optimize your medication schedule.

Misconception: Levodopa stops working after a couple of years, so you should wait to start taking it.

  • Reality: Levodopa works for decades, treating many, but not all symptoms of PD.
  • Fact: Levodopa is an effective treatment for Parkinson’s and noticeably improves quality of life.

Misconception: Your doctor can predict your future and prognosis.

  • Reality: No person experiences the same Parkinson’s progression, symptoms or reaction to treatments, so even the best doctors cannot tell you exactly what lies ahead.
  • Fact: You can help change your future! Improve your disease at every stage by ensuring you stay fit and receive adequate sleep and nutrition. Exercise can improve mobility, stamina, mood and quality of life. People living with PD who seek expert care from a comprehensive team have better outcomes. Their complication risks are lower, and they enjoy better quality and longer lives. In fact, neurologist care saves about 4,600 lives each year in the U.S. alone.

Misconception: People experience Parkinson’s “flare-ups.”

  • Reality: Parkinson’s symptoms do not often suddenly worsen over days or weeks, if they do, it is critical to find the underlying cause with your healthcare team. Medication changes, infection, dehydration, sleep deprivation, stress, grief and other medical conditions can greatly impact and worsen PD symptoms.
  • Fact: Certain medications (prochloroperazine, metaclopramide, valproic acid and others) can worsen PD symptoms. Often, when infection and underlying medical or psychological issues are treated, PD symptoms improve.

Still have questions? Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473- 4636), to speak to a PD Information Specialist.

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