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, slowing the degeneration of brain cells. 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 motor 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
• Motor 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.

Data from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s, suggest 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 (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.
• Consider joining an exercise class or group. Classes are good motivation and also provide an opportunity to socialize. Trained instructors give clear guidelines and offer modifications.
• Try exercise videos or home exercise equipment if it is difficult to get out.
• Music can enhance performance by providing rhythm to coordinate movement.
• Be creative with your fitness. Challenge yourself and have fun!
• Consider attending Moving Day, a Walk for Parkinson’s, in your area to keep moving and strengthen your PD fitness community.

Sponsored by Kyowa Kirin. Content created independently by the Parkinson's Foundation.

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.

Adult children of a parent with Parkinson’s disease (PD) often want to help their parent but do not know how to begin. If they get involved early, they can detect changes that need to be addressed later on. A good first step is learning about the disease, its symptoms, treatment, and course. From there, they may want to become an active part of the support team that each person with PD should have from the time of diagnosis. Adult children can help schedule doctor’s appointments; attend them with their parent, navigate insurance and other financial concerns, and keep their parent moving and socially involved by engaging in sports and activities with them. This all depends on the parent’s willingness to have their children help out with some aspects of their lives. 

In this episode, Social Worker Kelly Arney, MSSW, outreach coordinator for the Parkinson’s Foundation Center of Excellence at Vanderbilt University Medical Center in Nashville, has several good pieces of advice for different situations, including communicating with the parent about how much help they will accept without giving up their autonomy.

Released: December 27, 2022

A diagnosis of Parkinson’s disease (PD) is a life-changing experience not only for the person with PD, but also for the spouse, child, other family member or friend who becomes the person’s primary care partner. Care partners take on many different responsibilities — from accompanying a loved one on doctors visits and grocery shopping to more demanding ones like providing physical care. At the same time, you may be working, raising children, caring for grandchildren or coping with your own health or personal issues.

Because PD progresses slowly, the care partner’s role can last for decades. This journey can bring rewards, but it can also bring difficult times. It is important for every care partner to remember that taking care of oneself is not the same as being selfish. By renewing your own energy and staying healthy, you can better support your loved one who lives with PD.

Health of the Care Partner

As a care partner, you are likely focused on your loved one. Yet research shows that care partners in general, not just those who care for loved ones with PD, face risks to their own physical and emotional health. This elevated risk can show up in a higher-than-average incidence of heart disease, high blood pressure and visits to the emergency room. Care partners have been shown to experience decreased immunity and sleep deprivation. Lack of sleep can lead to irritability and frustration. In addition, care partners experience higher-than-average rates of depression, anxiety and grief.

Practicing the Art of Self-Compassion

With all that care partners do for their loved ones, it is still easy to be self critical and feel guilty for not doing more. Try to treat yourself with the same kindness you would extend to a friend who had a problem. Self-compassion is not an act of self-pity or self-indulgence. It will prevent burnout and will allow you to move forward with the things you need to do every day. Accept your own humanity. Give yourself a pat on the back for doing the best you can.

A Toolbox for Self-Care

Here are some tools for practicing self-compassion to help you maintain your physical and emotional health.

Identify Stress Triggers. A first step in self-care is identifying and acknowledging what causes your stress. Irritability, for example, may be triggered by certain situations, like having three things to do at once or having trouble getting your loved one out the door on time.

Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.

Determine your limits. What is your comfort level providing care? Some people determine they can provide care at home as long as others in the family can manage the disruptions. Everyone has limits. What are yours?

Build in regular breaks from caregiving and make them a priority. You cannot be a good caregiver to someone else if you do not take care of yourself.

Delegate. You may feel that you don't want to burden others, but in fact most people are willing to help if asked — they just need direction. Families, friends and caregiver support groups provide a network of people who can help.

Often, in the rush of errands and medication schedules, quality time gets pushed to the bottom of the to-do list. Try prioritizing your list of caring responsibilities. Take on the most important ones yourself and try to find someone else — paid or unpaid — to help out with the less important ones.

Focus on the Positive. This may sound unrealistic in the midst of a difficult situation. However, we all harbor some degree of optimism and there are proven techniques for nurturing it.

Seek out joy in your relationship with the person with Parkinson’s. Your hands-on duties, such as bathing and dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.

Develop a habit of participating in activities together outside of care tasks. Shared time as husband-wife, mother-daughter, siblings or other relationship — rather than as caregiver and care recipient — allows you to enjoy each other and build happy memories.

Treat Yourself With Care

Treating yourself with care is not a luxury, but a necessity. It helps us rediscover the purpose and meaning in our lives. Doing the things that bring us pleasure — whether they are small rituals like enjoying a morning cup of coffee, following an exercise routine, practicing meditation or simply spending time with positive friends — replenishes reserves of love, improves our health and adds depth to our experience of caring for a loved one.

For more information, read or order Caring and Coping, a comprehensive guide for caregivers of people with Parkinson’s at any stage at Parkinson.org/Books or by calling the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

You can also watch Parkinson’s Foundation Caregiver Summit educational sessions at Parkinson.org/Library.

Printing made possible with a sponsorship from Kyowa Kirin.

Stress is almost a constant in our lives and especially when coping with changing symptoms of Parkinson’s disease. Adding to the usual stresses are the pandemic with its social isolation and uncertainty of when it will be over, as well as the flood of local and international news. So we all deserve some time to focus on ourselves, and one useful technique is mindfulness meditation, in which a person focuses on being intensely aware of what they are sensing and feeling in that moment. This focus helps give insight into those senses and feelings without interpreting them or judging them. Various techniques can facilitate this practice to reduce stress, including breathing methods and guided imagery. In this episode, Crista Ellis, Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness meditation is, how people can begin the practice, including the Foundation’s Mindfulness Mondays sessions, and what it can do for them.

Released: February 22, 2022

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 impairments. 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® (amoxopine) 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.

Learn more about PD-related depression and other mental health symptoms by requesting a copy of our book Mood: A Mind Guide to Parkinson’s at Parkinson.org/Books. You can also request more information by calling 1-800-4PD-INFO (473-4636).

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.

People with Parkinson’s disease (PD) may experience mental health problems, such as depression, apathy, and anxiety more frequently than the general population. Psychosis, such as delusions or hallucinations, may occur as part of the disease or from medications used to treat it. Fortunately, these conditions are treatable if recognized. Unfortunately, clinicians may not screen for them, and therefore, the problems may be missed. In addition, people with PD may come to their clinic visits with a list of physical problems, so they may not make mental health a priority.

In this episode, geriatric psychiatrist Dr. Mary Hart Bryan of the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, explains some of the mental health conditions that people with PD may experience, and she emphasizes the importance of recognizing these conditions and seeing the proper health care professional for treating them, using psychotherapy, cognitive behavioral therapy, medication, or combinations of these approaches. She shares how care partners, too, often have mental health needs that should be recognized and addressed.

Released: December 14, 2021

Para las personas con la enfermedad de Parkinson (EP, o PD, por sus siglas en inglés), manejar la enfermedad a menudo se reduce a equilibrar diariamente la dopamina, el neurotransmisor que se pierde en la EP. El reto está en trabajar con terapias de reemplazo de la dopamina para encontrar un equilibrio entre los niveles altos y bajos. Los medicamentos de dopamina han mejorado la vida de millones de personas. Pero hay cada vez más discusión acerca de los trastornos de control de los impulsos (ICD, por sus siglas en inglés), una frase que se utiliza para describir niveles insanos de juego con apuestas, compra, ingesta de alimentos y actividad sexual. Los investigadores piensan que algunas personas con Parkinson que exhiben estos comportamientos pueden estar experimentando algún efecto secundario de las terapias de reemplazo de dopamina. ¿Le preocupa que usted o un ser querido pueda verse afectado? Para responder a sus preguntas, la Parkinson’s Foundation conversó con el Dr. Daniel Weintraub, quien en el 2010 publicó el estudio más grande acerca de los trastornos de control de los impulsos que se haya llevado a cabo.

¿Qué son los trastornos del control de los impulsos?

DW En el Parkinson, el término “trastorno de control de los impulsos”, se usa comúnmente para referirse a una serie de comportamientos. Apostar, ir de compras, comer y tener actividad sexual, que son compulsivos o impulsivos por naturaleza. A pesar de que el juego patológico ha sido el punto principal en la EP, nuestro informe y otros han mostrado que los cuatro son relativamente comunes.

¿Qué tan comunes son los trastornos de control de los impulsos?

DW Nuestro estudio demuestra que, al medir en un punto en el tiempo, alrededor del 14 por ciento de las personas con EP experimentan uno o más de los cuatro comportamientos mencionados. Creemos que la verdadera prevalencia de estos comportamientos que ocurren en cualquier momento durante la EP puede ser mayor, calculo que entre el 15 y 20 por ciento. También descubrimos que si una persona experimenta un trastorno de control de los impulsos, tiene de un 25 a un 30 por ciento de probabilidades de experimentar dos o más. Descubrimos que los hombres y las mujeres generalmente experimentan trastornos de control de los impulsos y apuestan de manera compulsiva en el mismo porcentaje. Sin embargo, encontramos que los hombres son más propensos que las mujeres a tener problemas con las conductas sexuales, mientras que las mujeres presentan mayores posibilidades de experimentar compras y alimentación compulsivas.

¿Cómo impactan los trastornos de control de los impulsos en las personas con EP?

DW Para algunas personas, los trastornos de control de los impulsos pueden ser leves o simplemente una molestia menor (por ejemplo, un aumento enfocado en la alimentación que lleva a una subida de peso de 10 libras). Para otros, el impacto puede ser más severo. Las personas que experimentan deseo compulsivo por las apuestas o las compras pueden perder grandes sumas de dinero, incluso llegar al extremo de la bancarrota. Aquellos que comen en exceso pueden experimentar significativos aumentos de peso, causando incomodidad y vergüenza, y posiblemente aumentando su factor de riesgo para las enfermedades vasculares. Algunas de las personas que experimentan conductas sexuales compulsivas pueden comenzar a tener actividades sexuales sin protección o fuera de una relación establecida, poniéndose a sí mismos y a otros en riesgo físico o emocional. Los trastornos de control de los impulsos típicamente afectan no solo a la persona que vive con la EP, sino también a sus seres queridos.

¿Son los medicamentos contra el Parkinson los que causan los trastornos de control de los impulsos?

DW Creemos eso porque las personas que viven con EP tienen una exposición a largo plazo a terapias de reemplazo de dopamina, y algunas pueden desarrollar hipersensibilidad. La hipersensibilidad puede, a su vez, provocar que una persona tenga una “reacción excesiva” a las medicaciones. Una reacción excesiva frecuente es la discinesia, los movimientos torcidos y retorcidos que afectan a algunas personas con la EP. Los trastornos de control de los impulsos pueden ser otros ejemplos de cómo el cuerpo tiene una reacción excesiva a la medicación con dopamina.

¿Qué medicaciones están relacionadas con los trastornos de control de los impulsos?

DW En nuestro estudio, mis colegas y yo descubrimos que los trastornos de control de los impulsos están relacionados en mayor parte con los agonistas de dopamina. Los dos de estos más usados por las personas con EP, y que estudiamos, son pramipexol (Mirapex®) y ropinirol (Requip®). También encontramos que los trastornos de control de los impulsos eran relativamente frecuentes en las personas que toman pergolida (Permax®), un agonista que ya no se prescribe en los Estados Unidos. Nuestro estudio sugiere que la levodopa, la medicación más eficaz contra la EP, que usualmente se toma como Sinemet®, puede estar asociada a los trastornos de control de los impulsos. Pero las posibilidades de tener este problema es menor con el uso de levodopa que con el uso de agonistas de dopamina.

Un medicamento de uso menos frecuente llamado amantadina (Symmetrel®) también está bajo sospecha. Sin embargo, algunos estudios han sugerido que en realidad puede ser eficaz como tratamiento para la urgencia incontrolable a jugar y apostar en la EP, así que se necesita mayor investigación.

¿Desarrollará una persona algún trastorno de control de los impulsos inmediatamente después de comenzar con alguna de estas medicaciones?

DW A veces una persona experimenta un trastorno de control de los impulsos meses después de comenzar con la medicación, pero con frecuencia hay un lapso de tiempo de un año o más. Creo que la mayoría de las personas con un trastorno de control de los impulsos saben que algo está diferente, pero no le pueden dar la misma importancia que sus seres queridos le dan.

¿Cómo trata usted los trastornos de control de los impulsos?

DW El tratamiento más frecuente es reducir la dosificación o retirar el medicamento que ha causado el problema, presumiblemente el agonista de dopamina. En casos leves a moderados, una persona puede optar por seguir con esa medicación, pero en casos moderados a severos, el médico se sentirá obligado a retirárselo completamente.

Los trastornos de control de los impulsos “por lo general” desaparecen para las personas que claramente no experimentaron trastornos de control de los impulsos anteriores hasta ese momento y los desarrollaron en el contexto de recibir una terapia de reemplazo para el Parkinson. He tratado a personas que dijeron sentirse nuevamente normales en cuestión de días a una semana, y otros que dijeron que el cambio demoró semanas o meses.

Hay un subconjunto mucho menor de personas para quienes los trastornos de control de los impulsos persisten a pesar de descontinuar la medicación. Hay todavía otro subconjunto de individuos para quienes quitarles la medicación no es una opción. Quizá sus síntomas de Parkinson son demasiado severos o están recibiendo beneficios psicológicos de la medicación.

Estas personas tienen otras opciones. Las personas que tienen fluctuaciones motoras significativas y han vivido con la EP durante varios años son candidatos para la cirugía de estimulación cerebral profunda (DBS, por sus siglas en inglés). Puesto que una persona puede por lo general disminuir sus medicamentos después de la cirugía cerebral profunda, esto a menudo calma su trastorno de control de los impulsos. Unas pocas estrategias adicionales han sido investigadas, tales como el uso de antidepresivos, pero hay poca evidencia en este momento sobre su eficacia. Los científicos también están investigando tratamientos nuevos para resolver los trastornos de control de los impulsos pero la evidencia sobre estas estrategias es limitada hasta el momento.

¿Qué aguarda en el futuro para el diagnóstico y el tratamiento de los trastornos de control de los impulsos en personas con Parkinson?

DW Esperamos que los nuevos compuestos en investigación ayuden a tratar los trastornos de control de los impulsos o que las nuevas terapias de reemplazo de dopamina puedan no tener los trastornos de control de los impulsos como una complicación. Además, pienso que necesitamos desarrollar herramientas para mejorar el diagnóstico y el cuidado, tales como instrumentos de monitoreo que puedan ser autocompletados por las personas con Parkinson y sus familias en la sala de espera. Éstos proporcionarían al médico datos que no tendría tiempo de reunir.

¿Deberían las personas con Parkinson preocuparse por su riesgo de desarrollar trastornos de control de los impulsos?

DW Pienso que deberían ser conscientes de que estos efectos secundarios existen y saber lidiar con cualquier preocupación por un nuevo comportamiento. Por ejemplo, un aumento en el uso de Internet (sitios web de apuestas o para adultos) podría ser una señal de un trastorno de control de los impulsos, pero esto no significa que todos los que usen Internet tengan un problema.

¿Cómo pueden las personas con Parkinson y sus familias hablar de este tema con sus médicos? DW Creo que los médicos tienen una obligación desde el día uno, y es la obligación de informar a las personas no solo acerca de los trastornos de control de los impulsos sino acerca de todo el espectro de efectos secundarios que pueden ocurrir con la levodopa y los agonistas de dopamina. Yo les digo a mis pacientes que quiero que ellos y sus familias sean conscientes de que un subconjunto de personas con Parkinson pueden experimentar cambios en el juego, las compras, la alimentación y el comportamiento sexual. Los aliento a que me informen sobre cualquier cambio en el comportamiento. De la misma manera, aliento a todas las personas con Parkinson, junto a sus familias, a que, si ellos han notado cualquier cambio en dichas conductas, traigan el tema inmediatamente a colación con sus médicos.

Llame a nuestra línea de ayuda, 1-800-4PD-INFO (473-4636), para aprender más.

Este video es de la lista de reproducción de la conferencia, “Hacia adelante: Navegando el mar del Parkinson.”

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Presentadora

Dra. Claudia Martinez, Barrow Neurological Institute