Parkinson’s disease (PD) impacts people in different ways. Not everyone will experience all the symptoms of Parkinson’s, and if they do, they won’t necessarily experience them in quite the same order or at the same intensity. There are typical patterns of progression in Parkinson’s disease that are defined in stages. Joseph Jankovic, MD discusses those patterns in terms of the forms and stags of Parkinson's disease.

If you experience fatigue and sleep problems, you are not alone. These are common symptoms of Parkinson’s disease (PD). In fact, fatigue can occur at any stage of Parkinson’s, and many people report that fatigue is one of the symptoms that affects them the most. It can have a greater impact on your quality of life than motor symptoms like stiffness, slowness or walking problems.

But doctors don’t always ask about fatigue, and people with Parkinson’s and their care partners don’t always know to bring it up. So how can you cope with and manage fatigue to feel your best? First, it is important to understand the causes. Then you can learn strategies to ease its impact.

What Is Fatigue?

Fatigue is a feeling of being extremely tired, of being either physically or mentally weary. Most people talk about fatigue as a result of some type of exertion—being tired from working or from thinking—but sometimes it is there all the time. It is different than sleepiness. When you’re sleepy, you want to fall asleep and can do so easily. No matter how extreme, fatigue does not usually result in sleep, even in sedentary situations.

People who are fatigued struggle to get through normal daily activities. They have difficulty concentrating and sleeping, decreased stamina, issues with memory and productivity, and even anxiety and depression. You might find yourself skipping social engagements because you feel like you just don’t have the energy or motivation. If you notice any of these symptoms and feel fatigued, talk to your healthcare provider.

Causes of Fatigue

Biology
In Parkinson’s, fatigue is not just your body’s reaction to PD symptoms, or not sleeping well. Fatigue can be a result of the same brain changes that lead to motor symptoms, though the level of fatigue is not necessarily related to the severity of motor symptoms. People who have severe fatigue early in their Parkinson’s tend to stay fatigued.

Lifestyle
While it might sound counterintuitive, not exercising and leading a sedentary lifestyle can actually increase your fatigue.

Tip: Fight Parkinson’s and fatigue by exercising at least 2.5 hours per week for a better quality of life.

Medications
Dopamine agonists (e.g., ropinirole/Mirapex and pramipexole/Requip) can cause fatigue and daytime sleepiness.

Tip: Reducing these medication may help. However, it is a delicate balance between good motor symptom control and excessive fatigue.

Akinesia
Akinesia, or trouble starting a movement, often feels like fatigue. A person with this symptom must move slowly and will find it hard to finish a task in a regular amount of time. Everyday tasks such as getting dressed can take a lot of effort, as it takes more concentration to perform tasks that are no longer automatic.

Tip: Keep track of times during the day when akinesia is better and medications are working well. Energy-consuming tasks can then be done at these times when movement is easier.

Muscle Fatigue
PD symptoms like muscle stiffness, cramping, tremor or shaking, and akinesia put stress on a person’s muscles. To move with these symptoms, muscles have to work hard and often against each other. With tremor, the constant shaking can quickly fatigue muscles. On the other hand, muscles that do not move enough are not well-conditioned, and they can become smaller (atrophied). Loss of muscle strength decreases stamina and endurance. For many people, this decrease feels like fatigue.

Tip: As described above, some Parkinson’s motor symptoms can cause fatigue. Anti-Parkinson’s medications treat motor symptoms, which in turn can help reduce fatigue. However, after being on dopaminergic therapy for a while, many people experience dyskinesia (fidgety, involuntary movements). Like tremor, these movements can also cause fatigue. The only treatment available to keep muscles well-conditioned is a regular exercise program. People who include exercise as a part of their daily routine have less fatigue!

Changes in Mobility
Many people with Parkinson’s disease experience changes in their ability to move throughout the day. These changes are often related to when you take your medications. You are better able to move after your medications take effect, and you might find it more difficult to move as the medication wears off, before your next dose.

Tip: Often, people try to get everything done in the morning after their first dose of medication, when they feel well and rested. But too much activity in the morning can lead to fatigue. Time your periods of activity for maximum mobility, but also pace yourself and allow for rest periods.

Insomnia
Some sleep disorders, like sleep apnea and restless legs syndrome, contribute to daytime sleepiness, but people with insomnia complain of fatigue.

Tip: If nighttime insomnia is a problem, avoid naps during the day, which can make you less sleepy at night.

Depression
It is estimated that at least 50% of people with Parkinson’s will experience some form of depression during their illness. Fatigue is a common symptom of depression and is often reported as a lack of motivation or a loss of energy.

Tip: A combination of counseling and medication is most effective at treating depression. When successful, people begin to feel less tired and are more willing to participate fully in activities.

Working with Your Healthcare Provider to Manage Fatigue

If you are experiencing fatigue, ask yourself the following questions. Record the answers in a notebook or on your smartphone, and bring this information to your next doctor’s appointment.

• When do I feel fatigued?
• How long do my feelings of fatigue last each day?
• Does my fatigue change with my PD symptoms?
• Does my fatigue change with the time that I take my medications?
• On a scale of one to ten, how fatigued am I in the morning, around noon, and in the afternoon?

The answers to these questions can help you and your doctor work together to identify possible causes of the fatigue you are experiencing. To understand and address it, and to rule out non-Parkinson’s causes, your healthcare provider will take a complete health history and do a physical exam. Sometimes problems not associated with PD, such as anemia, can explain the fatigue. If necessary, Parkinson’s medications can be adjusted.

The Parkinson’s Foundation is committed to better understanding how to help people with PD overcome Fatigue. In 2017, we provided funding to two researchers studying fatigue.

Hengyi Rao, Ph.D. at University of Pennsylvania is studying Multi-modal Neuroimaging of Fatigue in Parkinson’s Disease.

This study will use neuroimaging to observe the brain changes underlying fatigue and will explore the use of blue light as a potential treatment. A therapy exposing the eyes to blue light has proven to decrease daytime sleepiness in people with traumatic brain injuries. This study will explore whether this remedy may also be beneficial for in people with PD.

Milton Biagioni, M.D. at New York University is studying Remotely Supervised Transcranial Direct Current Stimulation (tDCS) for At-home Treatment of Fatigue and Cognitive Slowing in Parkinson’s Disease.

This study looks at whether a non-invasive, brain stimulation device paired with online cognitive training could alleviate fatigue and cognitive slowing in people with PD. This study uses a specially designed tDCS device through a new method of remote supervision.

Treating Fatigue

Medications for Parkinson’s motor symptoms do not necessarily improve fatigue, although one study found that levodopa slowed the worsening of fatigue.

Research in this area is in its early stages. Testosterone replacement and modafinil were tested but proved unsuccessful in the treatment of fatigue. In a small trial, methylphenidate (Ritalin) was found to be effective, but this and other stimulants have not been approved for treating Parkinson’s disease. More studies are needed.

To date, exercise is the best known therapy for fatigue. People with Parkinson’s often say that they are too fatigued to exercise, but you will likely find that you actually feel more energetic after you exercise! When exercising, you should have reasonable expectations. Start slowly by walking or using an exercise bicycle for five minutes, and build up to 30 minutes a day.

Done safely, there is no down side to exercise. It not only helps improve fatigue, but also can have a positive impact on overall sense of well being, depression and sleep quality at night.

TIP: Maximize Energy and Endurance

• Try to identify and reduce the major sources of stress and fatigue in your daily routine.

• Exercise regularly to build endurance and stamina.
• Keep mentally active. Boredom often leads to fatigue.
• Schedule adequate time for rest and sleep in your daily routine.
• Plan the highest level of activity and the most difficult daily tasks at times you are well rested and medications are working well.
• Take frequent breaks.
• Know your limits. Forcing too many activities into one time period will cause fatigue.
• Get help when needed. Delegate or hire help for tasks you find particularly stressful or tiring.
• Involve Your Team. Consult with an occupational therapist for an assessment and individual recommendations for energy conservation and enhancement.

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.

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.

Regular visits to the dentist are important for all of us. For a person with Parkinson’s disease (PD), dental care is particularly critical as PD can impact the health of the mouth, teeth and jaw and make dental care challenging. Poor dental hygiene can affect nutrition and increase risk for stroke, cognitive impairment and weight loss. People of all ages with PD face similar challenges, but for those who are older, the problems can be especially serious. Read below and follow the tips to enjoy eating foods you prefer for as long as possible, rather than limiting yourself to what your teeth will tolerate.

Barriers to Dental Health in PD

Physical Barriers:
Because of the physical effects of Parkinson’s, such as rigidity and tremor, nearly half of all people with PD have difficulty with their daily oral hygiene regimen. These symptoms also make going to the dentist more difficult and uncomfortable. Weakened swallowing ability can increase the risk of aspiration (choking) during treatment. Additionally, people with PD who have been on medications like levodopa for several years may begin to develop dyskinesias (involuntary movements), which can affect the jaw (oro-buccal dyskinesias) and cause cracked teeth and teeth grinding. This may create problems during dental exams and at home.

Difficulty swallowing saliva can lead to a fungal infection at the corners of the mouth, which is easily treated. On the other hand, people with PD may experience dry mouth, which can increase the risk of cavities and add to chewing difficulties or denture discomfort. In fact, people with Parkinson’s are less likely than others in their age group to clean their dentures daily

Behavioral Barriers

Non-motor symptoms of Parkinson’s, such as apathy, depression, and forgetfulness, may lead a person with PD to pay less attention to his or her daily dental health. Other behavior changes can affect nutrition. People with PD require greater caloric intake than those without PD, but some people experience decreased appetite. Combined with poor dental hygiene, this often leads to a tendency to avoid nutrient-rich foods, like vegetables, that require the ability to chew well. Some people may also develop a “sweet tooth,” which may put them at greater risk for cavities.

People who experience cognitive changes also may be more likely to miss dental appointments and less likely to report dental pain to their care partners or dentist, leaving issues unaddressed for too long.

Strategies for Improving Dental Care

It is easier to prevent a problem than to fix one.

Maintaining Dental Care at Home

Try using a toothbrush with a large-handled grip and soft bristles. A small brush head reaches the corners better. To make the toothbrush easier to grasp, place the handle inside a bike handlebar grip or tennis ball. Another option is to use an electric toothbrush. It will provide the fine, repetitive motions that protect teeth most effectively.

Aim to brush after every meal for two minutes, and also brush the tongue. It’s best to brush one-handed, using the stronger side of the body. To be thorough, be organized and consistent with your brushing pattern. Start on one surface, going from right to left, or vice versa, before moving to the next. And don’t rush! If it’s not possible to brush after a meal, simply rinsing the mouth with water will help. Flossing is important, but may mean getting help from a care partner.

Mouthwashes are discouraged for people with PD because of the risk of choking, but in cases where they are still an option, look for one that is non-alcohol based and that uses either chlorhexidine (an antiseptic) or baking soda. If swishing and spitting are difficult, the dentist may recommend a brush or sponge applicator. A fluoridated toothpaste or rinse can also be used. Fluoride helps increase the resistance of teeth to the harmful effects of bacteria. Prescription-strength, topical stannous fluoride gel treatments can also be a good preventive strategy, as directed by your dentist.

If you have dentures, remove them after each meal, then brush and rinse them. At night, brush or clean them in a solution. If it becomes hard to hold the dentures to brush them, a useful trick is to attach a nailbrush to a household surface with a suction cup and move the denture back and forth across the brush.

Improving Dental Visits

TIPS: Maintaining and Improving Dental Health

• Use an electric toothbrush.
• Try one-handed strategies that allow you to use the stronger side of your body.
• Try non-alcohol based mouthwashes using chlorhexidine or baking soda.
• Schedule dental appointments in the morning, about 60-90 minutes after a levodopa dose.
• Ask to keep the dental chair more upright, to make swallowing easier.
• Plan several, shorter dentist visits, rather than fewer, longer ones.
• Get check-ups/cleanings every 3–6 months.
• If you wear dentures, the dentist should screen for oral cancer and evaluate the fit of the dentures as part of the routine visit.

There are several ways to improve visits to the dentist, beginning with strategic timing. Schedule early morning visits, when waiting times tend to be shorter. Take levodopa 60 to 90 minutes before the office visit to have your best “on” time. This should make the dental examination easier and more comfortable for both you and the hygienist or dentist.

It is helpful to tell the office about Parkinson’s and your symptoms when you schedule the appointment(s). It is difficult and dangerous for dentists using drills and other sharp instruments to complete procedures on a moving target that can be caused by uncontrolled tremors. It is also a challenge for the dentist when individuals have difficulty sitting in a dental chair or keeping their mouths open for long periods, or when impaired swallowing risks choking or aspiration. Your dentist will value your direction about the timing, length and other aspects of your appointments. No one knows you better than you do.

The office should have someone on staff that can record vital signs upon arrival. Make sure to tell the dentist if you are taking an MAO-B inhibitor (rasagiline or selegiline), as these may interact with anesthetics.

As PD progresses, the amount of time during which a person responds optimally to PD medications will become less and less. For this reason, it may be helpful to plan a series of brief office visits rather than one longer visit. Also consider scheduling the replacement of old fillings, crowns and bridges, and ill-fitting dentures during the early stages of PD. In particular, if invasive procedures such as tooth restoration are needed, they should be done as early as possible in the progression of PD, to minimize risk. If general anesthesia is required, know that the recovery period for a person with Parkinson’s may be prolonged. And if you are not sure if the risks outweigh the benefits for a certain intervention, your neurologist may be able to help.

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

Depression is one of the major, and most common, challenges for people living with Parkinson’s disease (PD). Everyone feels sad from time to time and it is normal to experience stress when faced with a difficult disease such as PD. However, sadness can become a significant problem if it manifests into clinical depression and is left untreated.

We have only recently begun to recognize how common PD-related depression is and its impact on daily life. The Parkinson’s Outcomes Project, the largest clinical study of PD through the Parkinson’s Foundation Centers of Excellence, found that taken together, mood, depression and anxiety have the greatest impact on health status — even more than the motor impairments commonly associated with the disease. Fortunately, previous studies have also shown that treating depression is one of the most significant ways to improve quality of life.

It is especially important for people with PD to discuss even subtle changes in mood with their doctor as soon as they arise because, for many doctors, diagnosing depression can be difficult to differentiate from symptoms of Parkinson’s — such as a masked facial expression, sleep problems and fatigue — which overlap with symptoms of depression.

Sadness Versus Depression

While sadness is temporary, depression is persistent, and the people who experience it find that they cannot enjoy life as they used to. At least 40 percent of people with PD experience clinical depression at some time during the disease. It may occur early or late in the course of the disease and the person who is depressed may find that some days are better than others.

Depression causes personal suffering and also appears to intensify problems with mobility and memory. A person with PD, or his or her care partner or physician, may at first dismiss the signs of depression because they assume that it is normal to be depressed when faced with this illness. This can lead to feelings of helplessness and confusion, which may make the problem worse.

Causes of Depression in PD

There is no clear cause of depression but most specialists agree that it is probably a combination of factors. Research suggests that experiencing depression early in the disease may be directly due to PD-related chemical changes in the brain. Parkinson’s causes changes in areas of the brain that produce serotonin, norepinephrine and dopamine — chemicals that are involved in regulating mood, energy, motivation, appetite and sleep. In addition, the frontal lobe of the brain, which is important in controlling mood, is known to be underactive in PD.

It is very important to address depression because it can affect other symptoms and quality of life. If you are concerned that you or a loved one may be depressed, discuss symptoms with your doctor. There are several ways to treat clinical depression. It is important to find the method that works best for you.

Tips

Because PD Depression is so common, the Parkinson’s Foundation recommends that all people with PD:

• Get screened for depression at least once a year.
• Discuss all changes in mood with their healthcare professional and doctor.
• Bring a family member to doctor’s appointments to discuss changes in their mood.

Treating PD Depression

People with PD who experience uncontrolled “on-off” periods and freezing episodes are more prone to depression, so speak with your doctor about the best approach to controlling these symptoms first. The same is true of some other, non-motor symptoms of PD — for example, poor sleep, constipation and fatigue — that need to be treated to decrease the burden of living with the disease.

Regular exercise can help treat the symptoms of depression and PD. Eating a healthy diet is another approach that can help your overall wellness. Staying involved in social and recreational activities is also important. Have something to look forward to, whether a hobby or socializing with friends and family.

Receiving help from professionals and peers can help you learn to cope with stress, improve social relationships and find solutions to practical day-to-day difficulties. The Parkinson’s Outcome Project found that rates for depression were lowest among patients receiving care from clinics with the most active approach to counseling. Cognitive behavioral therapy, a type of counseling, has been shown to be especially effective in people with PD.

Lastly, know that there are many medications available for depression in PD. Studies have suggested that one class of antidepressants, called “dual reuptake inhibitors,” which affect both serotonin and norepinephrine, improve depressive symptoms in people with PD.

The pharmacological treatment of depression in PD needs to be individualized and may involve a variety of strategies. Make sure your doctor knows that Asendin® (amoxapine) is not an appropriate antidepressant for people with PD. If you or your loved one is currently taking an antidepressant that does not appear to be helping, ask your doctor if a different agent may work better.

For more information about PD-related depression and other mental health symptoms, read a copy of our book Mood: A Mind Guide to Parkinson’s. You can also request more information by calling our Helpline.

Why do some people with Parkinson’s disease (PD) experience reduced interest, motivation or enthusiasm? It could be apathy. In Parkinson’s the same changes in brain chemistry that can cause movement symptoms can also affect a person’s mood, energy and motivation.

A recent study found that about 40 percent of people with PD experience apathy, a motivational disorder in which people have trouble getting interested in daily activities. Until recently, apathy was largely misunderstood as a form of depression. Today the medical community defines apathy and depression as distinct syndromes with overlapping features.

It is important that people with PD, their care partners and their health teams be able to distinguish between apathy and depression. Medications used for depression can actually make apathy worse. Both apathy and depression can intensify the movement and cognitive symptoms of PD. Treating apathy is critical to improving health and well-being. Continue reading to learn about apathy — how it differs from depression and how people with PD can cope with its effects.

What is Apathy?

Apathy is defined as a lack of motivation. In PD, it shows up in three forms:

• Cognitive. Loss of interest/curiosity in new things.

• Emotional. A lack of passion or reaction to news or situations that normally would evoke an emotion.

• Behavioral. Trouble initiating activity, a need for others to prompt one to complete tasks.

In one study, people with PD who also had apathy spent almost no time pursuing hobbies and spent twice as much time watching TV as those without apathy. People with apathy may find themselves less able to take care of themselves independently and less able to manage their PD effectively. For example, a person with apathy may not be motivated to take medications on time. Apathy in PD can be stressful for care partners and family members who may be unaware of apathy and may instead view the person with PD as lazy or stubborn.

Diagnosis

Care partners may be the first to notice signs of apathy, although they may have trouble differentiating it from depression or sleep issues. Care partners often play an important role in urging the person with PD to seek a diagnosis. There is no universal test for diagnosing apathy. The one most widely used is the Apathy Scale, a questionnaire that people with PD fill out in the doctor’s office. Another is the Lille Apathy Rating Scale, which is administered as an interview between the person with PD and a medical professional.

Is It Apathy or Depression?

Both apathy and depression can lead people to lose pleasure in daily life and enthusiasm for their usual interests. Given this overlap, how can we tell if a person has apathy or depression? In short: sadness, guilt and being worried or hopeless all point to depression, not apathy. By contrast, the inability to “get up and go” may point to apathy. It is possible to experience both and finding ways to cope with each is important to living successfully with PD.

Treatment

The first thing a person with PD and his or her care partner should do upon experiencing apathy is to consult the movement disorder specialist to ensure that PD medications are working optimally. The primary goals for treating apathy are similar to those used for treating PD movement symptoms: increase dopamine in the brain and improve the effect of anti-PD medications. There is no one-size-fits-all therapy for apathy, but research provides some insights.

For example:
• A trial comparing the two most commonly used dopamine agonists found pramipexole (Mirapex®) to be more effective for apathy than ropinirole (Requip®).

• A study found that the rivastigmine (Exelon®) “patch,” a treatment for Alzheimer’s, was effective for treating apathy in people with PD who did not have dementia.

• Another study of repetitive Transcranial Magnetic Stimulation (rTMS) showed that people who received the experimental treatment and those who received a placebo both improved dramatically. The act of participating in the study itself may have boosted motivation.

Better Understanding Apathy

The Parkinson’s Foundation is committed to better understanding how to help people with PD overcome Apathy. In 2017, we funded Nabila Dahodwala, MD, at University of Pennsylvania to study goal-directed behavior in Parkinson’s. This study will test a new way of measuring goal-directed behavior in Parkinson’s. It will also use brain imaging to observe brain changes that occur when people experience apathy and cognitive impairment. The hope is that the study will shed light on the mechanisms underlying apathy and cognition in PD and help in more easily diagnosing them. This knowledge will ultimately allow for the development of targeted PD treatments.

Restorative sleep is vital for optimal physical, mental, and emotional health. Sleep problems affect a large proportion of the general population and take many forms, so the consequences of poor sleep are widespread. In particular, sleep disturbances affect more than 75 percent of people with Parkinson’s disease (PD). And according to our expert guest, Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, these problems are under reported by patients and under diagnosed by health professionals. The causes of sleep problems include recurrent symptoms of PD, disordered breathing, REM sleep behavior disorder, restless leg syndrome, and periodic limb movement disorder, among other factors and may be multifactorial. In this episode, Dr. Videnovic addresses some of the most frequent sleep problems – insomnia, REM sleep behavior disorder, and daytime sleepiness.

Released: January 25, 2022

Among the non-motor symptoms of Parkinson’s disease, cognitive and behavioral challenges also can be troubling and disabling. Medication, surgery, and other therapies can help alleviate motor symptoms, but the treatment of mental changes lags behind. Addressing cognitive, behavioral, emotional, and other neuropsychiatric issues may be daunting both for physicians and for the people with Parkinson’s whom they treat. Through a Parkinson’s Foundation grant, Dr. Jennifer Goldman has set up an Integrated Cognitive Behavioral Movement Disorder Program at Rush University Medical Center in Chicago, a Parkinson’s Foundation Center of Excellence. Its mission is to support people with PD and their care partners who need to treat and cope with non-motor as well as motor symptoms of the disease. She discusses some of the care challenges and offers advice for ways to address them.

Released: April 24, 2018