Falls often become more common as Parkinson's disease (PD) progresses. Some falls cause only minor scrapes or bruises, but others can have a lasting impact on mobility and independence. Understanding how PD affects balance and taking steps to reduce your fall risk can help you stay safer and more independent.

Are you at risk for falling?

If you answer yes to any of the following questions, talk to your doctor.

• Have you fallen before?
• Are you afraid of falling?
• Do you tend to trip?
• Do you feel unsteady when walking?
• Do you experience freezing episodes?
• Do you ever feel dizzy or lightheaded after standing up?
• Do you take medications that may affect balance?
• If you rely on a mobility aid, like a walker, do you ever neglect to use it?
• Do you make nighttime bathroom visits?

Reasons for Falls in Parkinson’s

Parkinson's changes the way people move, which can affect balance, walking and posture, and may lead to falls. Since PD affects everyone differently, getting to know your own challenges can help you take steps to improve safety. Some common reasons for falls in PD include:

• Walking changes — Shorter, slower or shuffling steps can affect balance and increase the chance of tripping.
• Balance issues — PD can disrupt natural movements, posture and reflexes that help you stay steady and upright.
• Freezing — For some people with PD, it may feel like their feet are stuck to the floor, especially when passing through doorways, turning, feeling stressed or hurried or when medications wear off. Those who experience freezing are at a higher risk of falling.
• Low blood pressure — PD can affect the autonomic nervous system, which controls heart rate and blood flow. As a result, some people may experience a sudden drop in blood pressure when they stand up. This can cause dizziness, lightheadedness or tiredness, and increase the risk of falls.
• Medication side effects — Medications, including those prescribed for PD, can sometimes cause sleepiness and confusion, which can increase the risk of falling.
• Muscle weakness — PD symptoms can make it more difficult to stay active, which can weaken the muscles in your legs and core. This can affect your balance.
• Thinking changes — PD can affect focus, making multitasking even trickier. Walking while distracted can increase fall risk.
• Vision and perception issues — PD can cause blurry or double vision and difficulty judging distances, both of which can affect spatial awareness and balance. Though not directly linked to PD, hearing loss can also impact balance.

Strategies for Improving Balance and Reducing Falls

1. Talk to your healthcare team about fall risks.

Work to identify fall risks together, talking through issues that may lead to falls, like medication side effects, low blood pressure, thinking changes or freezing — and how to manage them.

2. Screen for hearing and vision changes.

Changes in hearing and vision can affect balance. Your doctor may refer you to specialists for evaluation if needed.

3. Stay active.

Exercise improves balance, mobility, strength and brain health, all of which can reduce fall risk. Ask your doctor for a referral to therapy.

Physical and occupational therapists help address fall risks through:

• Personalized exercises for balance and mobility.
• Strategies for managing PD challenges like freezing and short steps.
• Mobility aid suggestions like walking poles, canes or walkers.
• Home safety evaluations and modifications.
• Tips for making daily activities easier and safer.

4. Make your home safer.

Remove tripping hazards (clutter, loose rugs, cords). Install grab bars in the bathroom and add nightlights along the path to help you get there safely. Review our home safety checklist at Parkinson.org/HomeSafety.

What to Do After a Fall

1. Stay calm, check for injuries and call for help if needed.

2. Plan your moves before getting up.

3. If possible, crawl or scoot to a sturdy piece of furniture for support.

Tips for Safer Movement

• Move with care. Take your time when sitting, standing or turning.
• Improve balance. Widen your stance and take bigger steps.
• Arrange your space. Place everyday items within easy reach to avoid overreaching.
• Stay focused. Keep your hands free and concentrate on walking.
• Boost safety with technology. Use fall detection systems, such as medical alert devices or smart watches.

Exercise is an important part of healthy living for everyone, but for people with Parkinson’s disease (PD), exercise is medicine! Physical activity has been shown to improve many PD symptoms, from balance and mobility issues to depression, constipation and even thinking skills.

In addition, research shows that exercise may have a protective effect on the brain and help slow the progression of the disease. It is also an active way of coping with PD. Establishing early exercise habits is an important component of overall Parkinson’s management.

Benefits of Exercise

Research has shown the following positive impacts of exercise:

• Engaging in any level of physical activity is beneficial and can improve motor symptoms.
• For people with mild to moderate PD, targeted exercises can address specific symptoms. For example: aerobic exercise improves fitness, walking exercises assist with gait and resistance training strengthens muscles. One study showed that twice-a-week tango dancing classes helped people with PD improve movement symptoms, balance and walking speed.
• Aerobic exercise can improve age-related changes in executive function, a type of thinking that is affected in Parkinson’s.
• People who start exercising earlier experience a significant slower decline in quality of life than those who start later.
• People with advanced PD who exercise show greater positive effects on health-related quality of life, so it is particularly important to keep exercising and finding new ways to facilitate exercise as the disease progresses.

Reported benefits of exercise include improvements in the following areas:

• Gait and balance
• Flexibility and posture
• Movement coordination
• Endurance
• Working memory and decision-making
• Attention and concentration
• Quality of sleep

And reductions in the following concerns:

• Falls
• Freezing of gait
• Depression and anxiety

Types of Exercise

There is no one exercise prescription that is right for every person with Parkinson’s. The type of exercise you do depends on your symptoms and challenges. For sedentary people, just getting up and moving is beneficial. More active people can build up to regular, vigorous activity.

Research suggests that people with PD do at least 2.5 hours of exercise every week for a better quality of life.

To help manage the symptoms of PD, be sure your exercise program includes a few key ingredients: aerobic activity, strengthening exercises and stretching. There are many types of exercises you can do to incorporate all three elements, including but not limited to the following:

• Running and walking
• Biking
• Tai chi, yoga, Pilates or dance
• Weight training
• Non-contact boxing

Some exercise programs focus on functional movements – things that are part of daily life, such as walking, standing up or lifting and reaching for objects. Researchers are also studying the impact of novelty: trying something new. When you begin a new activity, your brain – not just your muscles – learns the movements. So be creative, and vary your routine: exercise indoors and outside, by yourself, in a class setting, or one-on-one with a trainer or physical therapist. Just be sure to get guidance from your healthcare team.

If you’re just starting an exercise program, build up to the recommended 30 minutes of exercise five times a week. For example, walk for 10 minutes three times a day instead of one 30-minute walk.

Involving Your Team

Any form of physical exercise you can do without injuring yourself will provide benefit. Even gardening and housework count! Before beginning any new exercise, consult with your physician and, if available, a physical therapist that has experience with Parkinson’s. Check with your physician if you have health concerns that affect your ability to exercise. Seek a physical therapy referral for help planning your exercise program.

Conclusion

Many approaches work well to help maintain and improve mobility, flexibility and balance and to ease non-movement PD symptoms such as depression and constipation. The most important thing is to exercise regularly. To find exercise classes in your area, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).

Fitness Tips to Manage PD Symptoms

• Choose an exercise program that you will actually do! Don’t design a great, Parkinson’s-specific program and then skip it because it’s too hard or not fun.
• Follow a varied routine. Perform simple stretches and posture exercises daily, and make sure to include aerobic and strengthening exercises several times per week.
• Keep intensity at a level that feels “somewhat hard” for you. You will get stronger by increasing the difficulty of the exercise.
• Consider joining an exercise class or group. Classes are a good motivation and also provide an opportunity to socialize and receive guidance from trained instructors.
• Try exercise videos or home exercise equipment if it is difficult to get out. Exercise at home can be just as valuable as at a gym or in a class.
• Music can enhance performance by providing rhythm to coordinate movement.
• Be creative with your fitness. Challenge yourself and have fun!
• Consider attending a Moving Day Walk for Parkinson’s in your area to keep moving and strengthen your PD fitness community.

For many people, one of the first questions after a Parkinson’s disease (PD) diagnosis is, “How long will I be able to work?” This question is especially important to people with young-onset PD, who may be far from retirement. A Parkinson’s diagnosis does not mean your career is over.

As with most aspects of Parkinson’s, there is no one-size-fits-all answer. Factors in the decisionmaking process include the nature and physical demands of a job, the acceptance and support offered by employers and coworkers, response to medication, financial issues and the rate of disease progression. Some people continue to work for many years after a Parkinson’s diagnosis, while others may find that the physical and mental stresses of their job become too challenging, too quickly.

To tell or not to tell?

Deciding when to inform your employer and coworkers about your condition is a decision only you can make. Telling your boss sooner rather than later has its advantages, especially if your symptoms start to get worse and begin to affect your performance. By making your boss aware of your condition, he or she can then work with you to accommodate your needs.

Many newly diagnosed people with Parkinson’s avoid telling their employers and coworkers about their condition because they fear they will be unfairly treated. But the Americans with Disabilities Act (ADA) was created, in part, to keep employers from discriminating against people with disabilities or certain health conditions when they are hired, on the job or being fired. Every work setting is different. It is important that you feel comfortable with your choice.

Workplace Accommodations

TIPS: Job Comfort and Safety

• Because PD Depression is so common, the Parkinson’s Foundation recommends that all people with PD:
• Consider all required tasks within your workday. If possible, schedule the most challenging tasks at the time of day you feel most rested and mobile. Schedule breaks as needed.
• Make tasks easier by using technology. Investigate computer hardware/software adaptations. Try a Dictaphone if your handwriting makes writing messages difficult or use a headset on the telephone to improve posture and mobility.
• Seek an ergonomic assessment to make sure your desk or work station is designed to reduce unsafe or inefficient movements. Change position often, taking frequent stretch breaks.
• Use good body mechanics when lifting, carrying, bending and stooping. Use a cart to transport items if carrying things becomes more difficult.
• Delegate or trade more challenging tasks with others when possible.
• Maximize the benefits of your medication. Use a pill timer to make certain you are on time with every dose.
• Intersperse sedentary tasks with more active ones.
• Explore job share or flex time options if available.

By law, people with Parkinson’s are protected against discrimination in employment practices. The ADA requires employers to make reasonable accommodations for employees, as long as they do not impose an “undue hardship” on the employer’s business. A reasonable accommodation is defined as “any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions.”

Some other examples of workplace accommodations that can be helpful for people with Parkinson’s include the provision of adaptive computer equipment, such as an ergonomic work station, voice recognition software or a trackball. Speech amplifiers or mobility devices, such as a scooter or cane, might be requested. Depending on the nature of the job and company, requests for a more flexible work schedule, a part-time arrangement or telecommuting might be options. Accommodations to help deal with cognitive problems could include arranging for a workspace away from noise or other distractions, and the use of memory aids such as schedule planners and written instructions. An Occupational Therapist can help identify different tools and tricks to adapt the work environment to meet your needs as the disease progresses.

One source of information about the workplace is the Job Accommodations Network (JAN) — a free consulting service provided by the U.S. Department of Labor. JAN works to increase the employability of people with disabilities by providing individualized worksite accommodations solutions; providing technical assistance regarding the ADA and other disability related legislation; and educating callers about self-employment options. Contact JAN at 1-800-526-7234 for suggestions for accommodations under the ADA.

Dystonia is a continuous or repetitive muscle twisting, spasm or cramp that can happen at different times of day. Curled, clenched toes or a painful, cramped foot are telltale signs of dystonia. Dystonia can occur in different stages of Parkinson’s disease (PD). For example, dystonia is a common early symptom of Young Onset Parkinson’s, but it can also appear in middle to advanced stages of Parkinson’s.

What is Dystonia?

Dystonia often happens when the person with PD tries to perform an action with the affected body part. For example, if you have dystonia of the foot, you may feel fine when sitting, but you may develop toe curling or foot inversion (turning in of the foot or ankle) when trying to walk or stand. Dystonia can also happen when you are not using the involved body part. Some dystonia happens unrelated to an action or movement — like toe curling while sitting.

People with PD often experience a painful dystonia on the side of their body with more Parkinson’s symptoms. This frequently happens first thing in the morning when dopamine levels are at their lowest, or as nighttime medications wear off, or may come and go throughout the day. This painful cramp may go away after the first daily dose of Parkinson’s medications or may not relate to timing of medication at all.

Foot dystonia is one of the most common sources of dystonic pain, specifically in early PD, but dystonia can affect other body parts. In addition to cramping, it can cause forceful twisting movements. A common example is when a person’s arm feels pulled behind their back or their head is pulled to the side or toward the chest. Severe and painful spasms also can occur in the neck, face or throat muscles.

These movements are different from the flowing, writhing movements of dyskinesia (involuntary, erratic, writhing movements of the face, arms or trunk) which are not usually painful.

Although dystonia can be a Parkinson’s symptoms, people can experience dystonia without having Parkinson’s. Whether or not a person with dystonia has Parkinson’s, it is often treated with the same medications.

Parts of the Body Affected by Dystonia

• Arms, hands, legs and feet: Involuntary movements, spasms or twisting and "curling"
• Neck: May twist uncomfortably, causing the head to be pulled down or to the side. This is called cervical dystonia or spasmodic torticollis
• Muscles around the eyes: May squeeze involuntarily, leading to a person to blink too much or to have difficulty opening the eyes. This is also called blepharospasm
• Vocal chords and swallowing muscles: May cause a person's voice to sound softened, hoarse or breathy
• Jaw: May open or close forcefully or there may be grimacing of the face
• Abdominal wall: May cause sustained contractions and involuntary, writhing movements of the abdominal wall

Managing Dystonia

It can be helpful to keep track of when dystonia occurs to find a relationship between the onset of dystonia and the timing of your medication. Your doctor may ask you some of the following questions to see if there is a pattern:

• Do you experience dystonia when levodopa (Sinemet) is at a peak (also known as an "on" period)?
• Do dystonia symptoms happen before the first dose in the morning or when medication is wearing off?

With your physician’s direction, adjusting the dose or frequency of medication may help relieve dystonia. Those with morning dystonia (before the first dose of levodopa kicks in), may be advised by their doctor to add a bedtime dose of controlled- release carbidopa-levodopa or a long-acting dopamine agonist.

Therapies to Manage Dystonia

Physical and occupational therapy are also options for managing dystonia. It may be difficult to exercise when you are in pain. However, if you are in pain while moving and suddenly stop, the pain can get worse. A physical or occupational therapist can recommend exercises or techniques to target the source of your pain and to stretch and strengthen the body parts most affected by dystonia.

Botulinum Toxin Injections

If various therapies fail and your dystonia is not helped by altering medication timing, you and your healthcare provider may consider Botulinum toxin.

(BOTOX®) injections. Botulinum toxin weakens muscles, which helps calm the overactivity caused by dystonia. By targeting the overactive muscles, your physician can decrease the discomfort and pain caused by dystonia. It can take several injections to work well and it may not always be effective. When it does work, the benefit can last for several months before it wears off and re- injection is necessary.

Botulinum toxin A (BOTOX®): Can be used to treat dystonia as it stops unnecessary nerve signals from firing. It can also be used to decrease saliva production for people who have issues with drooling.

Botulinum toxin B (Myobloc): Primarily used to treat dystonia. Botulinum toxin B can cause dry mouth when used for dystonia, but unlike Botulinum toxin A, it is not approved by the U.S. Food and Drug Administration (FDA) for drooling.

Deep Brain Stimulation

Deep brain stimulation (DBS) surgery may also, in some cases, help dystonia in Parkinson’s. DBS is a standard treatment for specific types of dystonia when it is not associated with Parkinson’s. Its role as a treatment for dystonia in Parkinson’s is being researched.

For dystonia, the electrical leads can be placed in the same brain regions used in Parkinson’s disease. Health practitioners are also trying to use new DBS technologies that better target Parkinson’s symptoms.

Driving a car is a powerful symbol of independence that is closely to a person's self- esteem. Driving is a practical skill that allows us to get to and from work and is necessary to transport children and grandchildren. It can also allow us to visit friends and engage in other activities on our own time.

While the symptoms of Parkinson’s disease (PD) and the side effects of its medications may affect a person’s driving ability, the diagnosis alone does not mean the person with PD needs to stop driving immediately. Many people with PD continue to drive safely long after their diagnosis. The question of driving depends on specific symptoms, along with other changes that may come with aging.

The Impact of PD on Driving Skills

Driving is a complex task that can be impacted by other things going on, such as our physical, mental or emotional state. It requires:

• Physical strength
• Visuospatial processing, or the ability to judge space between cars
• Agility
• Good reaction times and reflexes
• Good hearing and eyesight
• Ability to keep track of multiple things at once

Most people have perfected these skills over time and are able to automatically perform the complicated tasks needed for driving. However, the aging process affects driving skills, and several PD-related symptoms may impact driving ability:

Movement symptoms: Tremors and dyskinesias (abnormal movements that cannot be controlled) may make it difficult for people with Parkinson’s disease to get into the car, or to control it. Bradykinesia, or slowness of movement, can make it dangerous to drive, because driving often requires quick reaction time.

Cognitive changes: Changes in executive function (the ability to manage multiple tasks) and reduced ability to judge the distance between objects have the greatest impact on driving. People with PD may have difficulty multi-tasking – for example, driving while listening to the radio. Not being able to judge the distance between cars or the lines on the road can result in parking difficulties, misjudging turns, clipping side view mirrors, and misjudging the speed of other vehicles. This change in the ability to process what one is seeing, or visuospatial impairment, is one of the key reasons that passengers become concerned about a driver’s abilities. Lastly, memory difficulties may make it hard for people with PD to focus, particularly when you are driving in unfamiliar places.

Vision changes: People with PD may have trouble separating objects from their backgrounds, otherwise known as contrast sensitivity. This is particularly important at night, or when driving in fog or with glare. It may also be difficult for people with PD to visually scan the environment quickly enough to anticipate and react – for example, having to suddenly step on the brakes if a car ahead of you quickly changes lanes.

Drowsiness: Sleep difficulties and the side effects of medications can cause a person to become suddenly tired or sleepy. Research shows that sleepy drivers can be dangerous drivers, whether or not you have PD.

Are You a Safe Driver?

One way to find out how you are driving is to ask a trusted person to observe you at the wheel. Then review your own record. Have you had any crashes or near misses in the last year? Are other drivers honking their horns because your driving is unpredictable?

Signs that you should reconsider your driving:

• Dings on car
• Getting lost
• Attention/memory problems
• Significant “off” periods
• Family concern
• Crashes

Testing Driving Skills

If you are having difficulty driving, talk to your doctor. You may want to complete a formal driving test.

Some tests may be taken in an office setting. These tests focus on visual abilities, ability to multi-task, speed of response, ability to maintain focused attention, and mental flexibility. Visual and motor reaction times are measured with computer tasks and physical activities, such as pressing down on a fake brake pedal when a red light comes on.

A more common option is to take a road test, with an instructor in the front seat and sometimes an occupational therapist in the back. The road test will include driving on large and small roads, making turns, and stopping at signs. And will evaluate your ability to maintain a steady speed and stay in the correct lane.

Where to Find a Specialist

Ask your hospital’s occupational therapy department if they offer assessments, or if there is a driving remediation instructor affiliated with the hospital. You can also call the Association of Driver Rehabilitation Specialists at 1- 866-672-9466 (toll free in the U.S. and Canada) or go to their website at www.aded.net. Health Insurance does not typically cover a driving assessment.

When to Give up Driving and Who Decides?

The decision to give up driving is much less well-defined than the decision to get a license. States and individual Departments of Motor Vehicles vary in terms of how they handle license renewal for older drivers. Most people do not want to be told they can’t drive anymore. And no one wants to be the “bad guy” who tells a person that they are not driving safely. But if there are concerns, it is important to start these conversations early. The decision to stop driving can evolve over time, rather than being made suddenly.

A driving test can help you and your family make a decision about giving up driving while avoiding the tension that comes from involving loved ones. If and when the decision is made to stop driving, there are programs available to help you get where you need to go:

• Call the ElderCare Locator at 1-800-677-1116 and ask for your local Office on Aging, or go to their website at www.eldercare.gov and search under the topic “Transportation.”
• Senior centers, religious organizations, and other local service groups often offer transportation services for older adults in the community.

You may also work out a schedule to get rides with family and friends or consider taxis or ride-sharing services like Lyft and Uber.

Conclusion

The biggest challenge is finding the right balance: you do not want to deny yourself the privilege of driving sooner than is necessary, but you do not want your driving to put yourself or others in harm’s way. All of these decisions can be less stressful if you plan ahead.

It is estimated that at least 50 percent of people living with Parkinson’s Disease (PD) experience depression at some time during the course of their disease. The Parkinson’s Foundation Parkinson’s Outcomes Project found that together, mood, depression and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease. The persistent sadness and hopelessness that accompanies depression make the challenges of living with PD even greater. The good news is that depression is a Parkinson’s symptoms that can be controlled. No one chooses Parkinson’s, but you can choose how to cope with it.

Learn the skills that will empower you take control of your mood, worry less and find meaning in daily life. These skills are modeled on a non-drug therapy called cognitive behavioral therapy, which has been proven helpful for Parkinson’s-related depression. To cope with depression, you can put the skills you’ll learn in therapy into action.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefing about depression, hosted by Roseanne D. Dobkin, PhD, from Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School.

What Is Cognitive Behavioral Therapy?

Cognitive behavioral therapy (CBT) is a non-drug approach to developing the skills and actions that change patterns of thought and behavior related to depression.

Many factors can cause a person to become and stay depressed. How we think about things and interpret what goes on around us influences how we feel. So does our behavior—what we do, or don’t do, in response to the stresses of life. Depression can have a biological cause. Brain changes that underlie PD are also thought to contribute to depression. But biology is not the only cause. Learning how to consciously change your thoughts and behaviors can help treat your depression.

Focus on Goals to Change Behavior

The first step is to make plans and set goals for activities. Emotions can take control when we feel depressed or anxious. Instead, let your behavior — your activities — guide you. Think strategically about increasing your involvement in meaningful activities — avoiding being busy for the sake of it. Goals should be small and realistic.

Focus on these three areas when setting goals:

• Exercise. Identify a reasonable daily exercise goal, whether it’s walking for 15 minutes, doing Tai Chi or seated exercises, or going to an exercise class. Ask for guidance from a physical or occupational therapist.
• Socialize. Keep socializing goals small and do-able. Don’t jump in to hosting a dinner party—it could be as simple as answering the phone or saying hello to a cashier.
• Self-soothe. Take time every day for an activity that will lead to a positive emotion—something that just feels good. For instance, relax with a cup of hot tea, soak in the bath or listen to music.

While planning activities that guide your day, consider these questions:

• Are there things you used to love to do that fell off the radar with your PD diagnosis? Consider re-introducing those activities.
• If the daily activities you used to enjoy are no longer feasible, are there new activities that can replace them?
• Can you modify an activity that used to be enjoyable and work it back into your life?

Here’s how my friend Howard used CBT to gradually take control over and improve his mood. Howard was a career firefighter. Five years into his PD diagnosis, he was no longer physically able to fight fires. He became depressed and withdrawn, cutting off ties with his firefighter friends, who were like family to him.

During therapy, we tested different ways he could re-connect with his friends. First, he went to a chili dinner—and it wasn’t embarrassing like he thought it would be. Then, although he couldn’t participate, he began attending weekly training sessions to shoot pool afterward. Gradually, Howard began to reconnect. He even helped with the fire department’s fundraising campaign. He realized that even though he couldn’t ride a fire truck, he could stay connected and contribute.

Tips to help you set daily goals:

• Make them small and meaningful.
• Choose activities that make you feel productive and satisfied.
• Plan around your physical limitations and “off” time.
• Pace yourself.
• Be flexible. If you can’t walk for 30 minutes, start with 15.
• Ask your doctor for referrals to physical, occupational and speech therapy.

Examine Negative Thoughts to Achieve Balance

When depressed or anxious, thoughts tend to include a lot of negative predictions—we begin to think that things will not go right. Most of the time, these predictions are not as accurate as we believe. Yet negative thoughts influence what we do.

Cognitive behavioral therapy aims to recognize, analyze and test negative thoughts, evolving them into a more balanced, healthier mindset. Try these steps:

• Catch the negative thoughts and write it down (for example, “my PD makes my friends uncomfortable”).
• Share the thought with a loved one. Recognize that it is your opinion and ask, “do others share my perception? Is there evidence against it?”
• Revise your thought or prediction in a way that helps you cope with the challenges of PD more objectively.
• Fight back against worst-case thinking.

If possible, find a way to test your thinking. Perhaps you think you can’t eat at a restaurant because of your tremor. Find out. Make plans to test your thought. Increase your chances of success by taking your symptoms into account— for example, go when the restaurant is not crowded, order food you don’t need to cut or ask for a lid and straw for your drink.

Then see what happens. Identify what worked. Can you revise your original negative thought? Going forward, try using more balanced, accurate thoughts to guide how you feel during the day. Healthy thoughts will help you cope with PD, whereas destructive ones derail your efforts.

Care Partners

Caregivers play an essential role in supporting people with PD who cope with depression. Research has shown people with Parkinson’s using CBT have more improvement in their depression and see results last longer when their care partners receive educational sessions on CBT. Additional benefits for people with PD included less anxiety, fewer negative thoughts and better ability to reframe them, more social interaction and better motor function. The more a loved one was involved with therapy for a person with PD, the better the outcome.

Reinforcing Success

For a person who is depressed, taking action is hard. A surprising effect of cognitive behavioral therapy is that it is self-reinforcing. Set small, specific goals and let the goal guide your behavior, no matter how you feel. When you feel a glimmer of success, your enthusiasm to do more will kick in. A small change in activity can improve a person’s mood. A better outlook can inspire more activity, and a more objective assessment of the future.

Conclusion: Don’t Suffer in Silence

Your mood is a critical aspect of living with PD that you can control. Talk to your friends, family and doctor if you feel persistently sad or hopeless. If symptoms are severe, you and your medical team might consider one of the many antidepressant medications. But effective, non-drug treatments also are available, both in combination with drug therapies and on their own. If you are depressed, speak up and seek help. For more information on depression, anxiety and treatment, read the Parkinson’s Foundation book, Mood: A Mind Guide to Parkinson’s Disease or call the foundation’s free Helpline at 1-800-4PD-INFO (473-4636) to speak with a Parkinson’s specialist.

Tips for Taming Anxiety

Many people with PD experience both anxiety and depression. Visit Parkinson.org to learn more about anxiety and ways to treat it. Try some of these non-conventional techniques:

• Breathing exercises
• Massage therapy
• Music therapy
• Guided imagery
• Meditation

CBT: How to Find a Therapist

• Ask your doctor or neurologist for a referral
• Ask support group members for recommendations
• Call the Parkinson’s Foundation’s free Helpline at 1-800-4PD-INFO (473-4636)

Tips for Better Sleep to Help Ward Off Anxiety and Depression

• Go to bed and get up at around the same time every day.
• Use the bed for sleep only.
• Limit daytime naps.
• Don’t lie in bed unable to sleep for long periods — get up and do something else until you feel tired, then try to sleep again.
• Limit caffeine and alcohol in the evening.
• To learn more about Parkinson’s and Sleep read the Parkinson’s Foundation book, Sleep: A Mind Guide to Parkinson’s Disease or call the Foundation’s free Helpline at 1-800-4PD-INFO (473-4636) to speak with a Parkinson’s specialist.

Among the many kinds of outreach and activities that help people with Parkinson’s disease (PD), art programs are popular and beneficial. They can provide social interaction, creativity, and movement, with the potential to enhance emotional and physical wellbeing. One program, Smile Through Art, benefited from a Community Grant from the Parkinson’s Foundation, allowing it to continue to reach people with PD and their care partners throughout the pandemic. Smile Through Art Workshops encourage creativity and movement, using art to address problems of fine motor control, rigidity, and tremors while providing cognitive stimulation. The goals are to foster confidence, mood, and optimism.

In this episode, Saba Shahid, the Chief Smile Officer and President of Creative Neurology, the company that developed the Smile Through Art program, discusses what the workshops entail, the success that they have had, and how a Community Grant from the Parkinson’s Foundation allowed the program to continue to reach people with PD during the pandemic.

Released: April 5, 2022

As you know, Parkinson’s disease (PD) affects many body systems, not just movement. This includes the autonomic nervous system — that is, 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 can be among the most serious and complex issues faced by people with PD.

Constipation, cramping and bloating are all common among people with Parkinson’s. These issues can be caused both by the disease itself and by the medications used to treat it. The good news is that there are steps that you can take to lessen its impact on your life.

Stomach Problems

Impaired ability to empty the contents of the stomach, called gastroparesis, is a potential complication of PD. This may produce a bloated sensation and cause you to feel full even if you have eaten very little. Sometimes nausea may develop.

Failure of the stomach to empty in a timely fashion may also impair or delay the effectiveness of PD medications, especially levodopa. Levodopa is absorbed from the small intestine and cannot get to its destination if it is trapped in the stomach.

Unfortunately, treatment of gastroparesis in PD has not been extensively studied, and there are not many treatment options. Domperidone is an effective medication, but it is not available in the US. FDA approved Duopa®, a form of levodopa designed to be delivered directly into the small intestine, may be helpful for some people experiencing gastroparesis. New levodopa delivery methods that bypass the stomach might help in the future, such as a skin patch, supplemental treatment with DBS, sublingual, or subcutaneous agonists.

Constipation

Constipation means difficulty passing stools (bowel movement, feces), a decrease in the number of stools, or both. It is often accompanied by one or more of the following symptoms:

• No stool (bowel movement) for days
• Distention (bloating) of abdomen, cramping, a feeling of pressure in the lower abdomen
• Straining to eliminate
• Incomplete evacuation of stool
• Hard, pellet stools

Constipation can be acute (sudden onset of short duration) or chronic (persisting for several weeks or longer). In PD, constipation is likely to be chronic. When constipation is severe, the stool stays in the colon and “backs up”, causing a condition called impaction.

Most healthcare providers describe constipation as having less than three bowel movements a week and recommend treatment after three days without a bowel movement, but everyone is slightly different. The frequency of bowel movements depends on what you have been eating and drinking, and the unique functioning of your own body. If you are experiencing fewer than three bowel movements in a week or have any of the symptoms listed, talk to your healthcare provider.

Why Do I Get Constipated?

We are still learning about constipation in PD and why it happens. Here is what we know:

Parkinson’s Disease

The same changes that occur in brain cells in Parkinson’s disease may also occur in nerve cells in the spinal cord and the intestinal wall. These changes may slow down the muscles that push food through the intestines.

Medications

Medications used to treat PD — in particular, the class called anticholinergics and the medication amantadine, used to treat dyskinesia — are known for causing constipation. If you are on these medications, your healthcare provider may be able to reduce your dose or switch you to a different one. But for some people, the benefits of the medication outweigh the possibility of constipation.

Decrease in Physical Activity

Because people with Parkinson’s disease experience difficulty with their movement, they often become less active. People with PD who increase their movement experience better overall functioning, which includes their digestive system.

Decreased Water Intake

Many people with Parkinson’s disease limit their fluids to avoid making frequent trips to the bathroom. When a person drinks less liquid, the gut may not have the lubrication it needs to have a bowel movement, which contributes to constipation.

Genetic Predisposition

It is possible to have a family predisposition to constipation. Ask family members what solutions work for them. Your body may respond to the same strategies.

Individual Body Chemistry

Genetics aside, you are unique. Pay attention to your body and what is normal for you.

Preventing Constipation

Will your constipation get better? It is possible, but it depends in part on your own efforts.

Of course, your healthcare provider and the medications he or she recommends play an important role. Still, constipation may persist despite your doctor’s recommendations. That’s where you come in.

It is critical to put a daily plan in place — one that can even prevent constipation before it begins. This is called creating a bowel program - Here are some strategies:

• Drink a lot of fluid (i.e., at least eight 8-oz glasses, excluding caffeine and alcohol, which act as diuretics and can aggravate constipation). It can be especially helpful to drink warm liquids, such as flavored sparkling waters or lemonade, on rising and with breakfast, as warm liquid and food start bowel activity.
• Eat meals at the same times each day.
• Increase your fiber (e.g., cooked dried beans or fruits and vegetables with edible skins).
• Eat more foods that create bulk (e.g., whole grains and vegetables).
• Minimize your intake of low fiber starchy foods (e.g., breads, cookies, cake) or avoid them completely. Starchy foods do a great job at plugging up the digestive system!
• Try to establish a relaxed, regular time of the day for bowel movements. (About 1/2 hour after a meal is best as there is normally greater bowel activity at this time.) However, it also will help to train yourself to “honor the urge” to have a bowel movement. It may not always occur first thing in the morning or only at home!
• Be aware that the natural position for evacuating the bowel is squatting. Raised toilet seat devices may aid mobility but are not ideal for bowel function. Try hiking your feet up on a small bench while sitting on the toilet.
• Exercise more. Walk, dance, ride bikes or swim.

Keep in mind that what works for one person may not work for another. You are unique. Pay attention to your body’s individual habits and needs.

The best way to do this is to keep an activity log or diary, where you can keep track of when you experience constipation. Record what else happened that day — what you ate, if you exercised, when you took medications — and look for patterns. This will help you figure out what triggers your constipation, how long it lasts, and what it responds to under varying circumstances. Then take steps to help prevent the constipation.

It may take trial and error, but with time (can take weeks to months) and effort, you can begin to understand what works for you.

Managing Constipation

If you have tried the tips above but they did not work, what should you do next? The primary goals will be to manage your symptoms, avoid complications (such as impaction, hemorrhoids and a dependence on laxatives), and prevent future constipation.

Treatments fall into two categories: over-thecounter and prescription therapies. Remember: consult with your healthcare provider before deciding on how to treat your constipation.

The best treatment for constipation will vary from person to person, taking into account a variety of factors, including: other medical condition(s), medications or allergies that impact your treatment, the cost of treatment, the type of treatment used, how often the treatment must be taken/done in a day and your own convenience and preference.

Over-the-Counter Products

Over-the-counter treatments for constipation can be purchased at your local pharmacy. There are several categories listed on the following pages, all of which work in different ways. They are offered in a variety of forms including capsule, powder, granule, syrup, gum, tablet, liquid and wafer.

The best choice for you will depend on personal preferences and how your body responds. Preferred products are those that mimic the way the body works normally, i.e., by increasing bulk, fluids or lubricants in the intestines.

It is important to note that stimulating laxatives, enemas, suppositories and combination products create dependence and are considered a last option, and should be used only when all others have been exhausted. Here are some things to keep in mind before selecting any products to address your constipation

• Relatively mild laxatives may be used while establishing a bowel program, but they are NOT a replacement for diet and bulk formers. Use them sparingly while you continue with your program. All laxatives should be used with caution. They activate the bowel by chemical irritation. Long-term use may actually harm the bowel.

• The bowel can easily become dependent on enemas. We recommend that you use enemas only when nothing else works.

• You may need to use suppositories while establishing a bowel program. If needed, use Glycerin daily or every other day. DO NOT use Dulcolax®, as it is habit-forming and irritates the bowel.

The following are listed in order of ease of consumption, cost, volume of therapeutic dose, taste. See list of common side effects.

Senna Teas (caffeine free)

These teas are herbal products whose use dates back to Arabian physicians in the ninth century! Drink a cup with dinner or in the evening and you should experience gentle, overnight relief from constipation in PD. Use senna teas with caution if you have a heart condition and are using Lanoxin® (digoxin) or a diuretic. It also comes as a capsule (Senna Leaf Smooth Move®).

Emollients (stool softeners)

These work by allowing more fluid into the fecal material. They contain “wetting agents” that improve the ability of water to mix with stool, which softens the stool. They do not stimulate bowel movements or increase bowel movement frequency. They make the stool softer and easier to pass. These can be used long term but should not be used in combination with products containing mineral oil. Some people with PD find the stool is soft, but difficult to pass as the muscles in the lower abdomen may not be strong enough or the momentum is slowed due to the disease. Examples include docusate (Colace® and Surfak®).

Bulk Formers

These work by creating bulk in the intestinal tract. Many types of fiber products bind with water in the intestine, keeping the water in the intestine to soften the stool, while adding bulk/volume to it. They must be taken with at least eight ounces of water. Bulk formers produce results in 12 to 72 hours and are safe for long-term use. Examples include guar gum (Benefiber®); inulin (FiberSure®); methylcellulose (Citrucel®); malt soup extract (Maltsupex®); polycarbophil (Fibercon®); psyllium (Konsyl®).

Lubricants

These work by lubricating the intestinal tract. They contain mineral oil, which coats the particles of stool, making it softer. Mineral oil does not stimulate a bowel movement or increase bowel movement frequency. Like emollients, it makes the stool easier to pass. They should only be used for short periods of time or periodically, as the oil can absorb some vitamins. They should not be used when taking warfarin (Coumadin®). An example is mineral oil (Fleet®). When purchasing, be sure to purchase just mineral oil, without any additives.

Osmotic Laxatives

These work by drawing fluids into the intestinal tract. They are indigestible, nonabsorbable compounds that assist in retaining water in the colon, thereby softening the stool. Osmotic laxatives produce a bowel movement within one to three days. They may cause gas initially, but this usually resolves. Osmotic laxatives are safe for long-term use. Diabetics need to be especially careful in their choice of an osmotic laxative as large sugar molecules (e.g. sorbitol) are sometimes used. Examples include lactulose (Kristalose®); polyethylene glycol 3350 (MiraLax®); polyethylene glycol (GlycoLax®); sorbitol.

Saline Laxatives

These contain magnesium, sulfate, phosphate or citrate. They cause a softening of the stool by retaining water in the colon. They generally work within several hours. In general, they should not be used on a regular basis as they can cause dehydration and electrolyte problems. People with kidney disease, congestive heart failure, or those who are advised by their healthcare provider to control salt and water intake should not take saline laxatives. For mild results, examples include magnesium hydroxide (Milk of Magnesia®), sodium biphosphate and sodium phosphate (Fleet®, Phospho-Soda®, Visicol®). For strong results, examples include magnesium sulfate (Epsom salt).

Stimulant Laxatives (Not for long-term use)

These should be used sparingly with PD and only after other remedies have failed. Among the over-the-counter laxatives, they are most likely to cause diarrhea and cramping. Chronic use can lead to colon damage. They work by causing the muscles of the small intestine and colon to propel their contents more rapidly. Some stimulant laxatives increase the absorption of water in the small intestine. Examples include bisacodyl (Dulcolax®, Correctol®); castor oil; casanthranol; cascara (Nature’s Remedy®) senna.

Enemas

Enemas stimulate the colon to contract and eliminate stool. They are useful in PD when there is impaction. In most cases, routine use should be avoided as they affect the fluid and electrolyte balance in the body. Soap suds enemas, commonly used in the past, should not be used as they can damage the rectum. Examples of common enema preparations include docusate sodium (Colace®), saline enema, microenema, tap water enema, mineral oil enemas.

Suppositories

A suppository is a “wax-like” form which is lubricated and inserted directly into the rectum as high as the finger can put it. Suppositories provide rectal stimulation to empty the bowel. Stool must be present in the rectum for suppositories to be effective. Suppositories must make contact with the inside wall of the rectum to work. They should be refrigerated until used or they can melt. Glycerin suppositories provide lubrication, while bisacodyl suppositories contain the stimulant laxative bisacodyl. Examples include bisacodyl (Dulcolax®) and glycerin.

Combination Products

These products combine two or three of the previously mentioned ingredients and stimulate bodily and intestinal functions. They can be convenient and effective. Those containing artificial stimulants should not be used in most long-term situations. Examples include casanthranol (Sof-Lax Overnight®); docusate (Peri-Colace®, Senokot®); glycerin; senna; senna and glycerin (Fletcher’s Laxative®); and senna and psyllium (Perdiem®).

Common Side Effects of Over-the-Counter Products for Constipation

Emollient (Stool Softeners)

• Skin rash
• Stomach and/or intestinal cramping Bulk Forming
• Skin rash or itching
• Difficulty swallowing
• Intestinal blockage
• Difficulty breathing

Lubricant

• Skin irritation surrounding rectal area
• Aspiration (medication sucked into lungs)

Osmotic

• Bloating
• Cramping
• Gas
• Increased thirst
• Nausea

Saline

• Confusion
• Dizziness or lightheadedness
• Irregular heartbeat
• Muscle cramps
• Unusual tiredness or weakness

Stimulants

• Belching
• Cramping
• Diarrhea
• Nausea
• Confusion
• Irregular heartbeat
• Muscle cramps
• Discoloration of urine (for cascara and/or senna only), e.g. pink to red, red to violet, red to brownish color
• Skin rash
• Unusual tiredness or weakness

Note: side effects very from person to person. Please consult your healthcare provider if you have concerns about any side effects listed.

Prescription Products

When over-the-counter remedies fail, your healthcare provider may recommend prescription products to treat constipation.

Right now, there are two remedies approved by the U.S. Food and Drug Administration (FDA). They are often available by generic name or trade name (the trade name product is generally more expensive).

• Lubiprostone (Amitiza): works by increasing stool water content. Side effects include headache, nausea, diarrhea, abdominal pain and vomiting.
• Linaclotide (Linzess): increases bowel movement frequency. Its most common side effect is diarrhea.

What’s Right for Me?

Your objective is to be as comfortable as possible.

Know What to Avoid

• Impaction (i.e., solid bulk of stool in the rectum that must be manually removed).
• Hemorrhoids (distention of veins in area of anus).
• Chronic dependence on laxatives.
• Complications from other diseases you have that can be worsened by treatments for constipation.

Know Your Normal Habits

• Assess your “normal” by logging your elimination habits versus your dietary intake, the fluids you consume and exercise for one normal week.
• Note any changes in your bowel movements early, so you can intervene sooner rather than later (consult your healthcare provider as appropriate).

Select the Right Management Plan

• Consult your healthcare provider. Discuss a trial and error process that considers your medical condition(s), all the drugs you take, and your preferences (form in which taken, frequency/ time of administration, taste, effectiveness, etc.).

Special Precautions

For your safety, consult your healthcare provider before taking any products. Of particular concern should be any of the following:

Over-using laxatives could create dependence.

Watch for:

• Signs and symptoms of appendicitis, which could include fever, abdominal pain, loss of appetite.
• Rectal bleeding from unknown cause.
• Intestinal blockage.

Be careful if you have any of these conditions:

• Colostomy: potential for diarrhea when bag fills quickly.
• Ileostomy: potential for diarrhea when bag fills quickly.
• Type 2 diabetes: some laxatives are high in sugar.
• Heart disease: straining to eliminate stool can strain the heart, and it may not be able to compensate.
• High blood pressure: some laxatives are high in sodium.
• Kidney disease: some laxatives have magnesium and potassium in them.

Swallowing difficulty: of concern would be aspiration of the laxative into the lungs causing pneumonia or blockage of the esophagus.

Living with PD can be challenging. Motor and non-motor symptoms impact daily life, but there are many things a patient can do to lessen this impact. Daily attention to bowel function is important to feeling one’s best and to avoid serious complications such as impaction. If you need further guidance, please contact your health care provider.

Hay muchos síntomas que no son motores que se presentan en la enfermedad de Parkinson. Estos síntomas pueden incluir depresión, ansiedad, trastornos del sueño y signos cognitivos.

En este episodio, hablamos con la doctora Irene Litvan, Profesora de Neurociencias y Directora del Centro de Parkinson y Otros Trastornos del Movimiento (PMDC) de la Universidad de California San Diego (UCSD), sobre la causa de los síntomas no-motores de la enfermedad de Parkinson, como pueden detectar estos síntomas y formas de aliviar los síntomas de parte de un ser querido o cuidador.

Lanzado: de febrero de 2020

Parkinson’s disease (PD) does not exclusively affect the older population. In fact, about four percent of people with PD in the United States developed the disease before age 50. This is called Young-Onset Parkinson’s disease (YOPD). While the disease in younger people resembles in many ways PD in the older age group, it presents some unique challenges, including issues with employment, sexuality, pregnancy, family life, financial planning and parenting. In this episode, the second of two on YOPD, Dr. Bart Post of Radboud University in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, focuses on some of the social and interpersonal issues, including work, family, and women’s issues. He also describes the Phase of Life Dependent Support Program that he has developed at his university to meet the special needs of people with YOPD.

Released: March 22, 2022