The benefits of music therapy for Parkinson’s disease have been well established over the years. Rhythm and rhythmic cuing can help with initiation, coordination, and maintenance of movement. Benefits can extend to cognitive functions, communications abilities, and mood. As established professionals, some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s. Music therapist Dr. Concetta Tomaino, Executive Director and co-founder of the Institute for Music and Neurologic Function in Mount Vernon, New York, discusses who can benefit from music therapy, how it is done, what neuroscience research has found, and where to find information on music therapy. She expands on the multiple ways the therapy can alleviate some of the problems associated with Parkinson’s.

Released: November 20, 2018

Cuando existe una barrera del lenguaje entre una persona con Parkinson o, realmente, con cualquier tipo de enfermedad, y su equipo médico, la calidad de atención médica que recibe esa persona puede sufrir.

En este episodio, conversamos con la doctora María Luisa Moro, neuróloga del Centro de Trastornos del Movimiento Chase Family, Hartford Healthcare y directora de la Clínica Hispana del mismo Centro, localizada en Hartford, CT. Ella nos habla acerca de su trabajo para mejorar la atención de los pacientes hispanohablantes con Parkinson, con la creación de una clínica totalmente dirigida a esta comunidad; la primera de este tipo en Connecticut.

La doctora Moro comparte cómo identificó la necesidad de desarrollar un centro especializado para la comunidad hispanohablante con Parkinson, al notar que la falta de servicios para hispanos y la barrera cultural y del lenguaje puede prevenir que las personas con la enfermedad de Parkinson reciban un tratamiento integral, personalizado y multidisciplinario, con los últimos avances de la ciencia. También nos explica no solamente la importancia de la atención médica en un mismo idioma, sino de contar con un equipo de profesionales de la salud que entienden su cultura y necesidades.

Lanzado: 20 de julio de 2021

La telemedicina es el uso de la tecnología para permitir conectar con los doctores de manera remota; es decir, poder usar la computadora como un medio para conectar con su doctor y tener una cita clínica. La telemedicina ha revolucionado el acceso y la calidad de las consultas en los tiempos del coronavirus. Por mucho tiempo, la tecnológica ha estado disponible, pero había muchas limitaciones en el acceso. Ahora, con la pandemia, se han abierto las puertas al uso de esta tecnología.

En este episodio, hablamos con el doctor Adolfo Ramirez-Zamora, neurólogo especialista en la enfermedad de Parkinson (EP) y jefe de división del área de trastornos del movimiento en la Universidad de Florida, acerca de la telemedicina, cómo funciona y cómo superar los posibles obstáculos.

Lanzado: 6 de abril de 2021

The Parkinson's Foundation is committed to working with health care professionals to improve the way care is delivered to families affected by Parkinson's disease. One way is through the Foundation’s signature program, Allied Team Training for Parkinson’s (ATTP), developed to increase knowledge of PD and build capacity for comprehensive interprofessional care in the treatment of Parkinson’s disease.

Physicians, physician assistants, nurses, nurse practitioners, social workers, speech language pathologists, physical, occupational and music therapists learn the best techniques in PD care through a team-based approach in this intensive three to four-day program. The goal is to give attendees the knowledge and tools to deliver interprofessional, patient-centered care at the right time throughout the continuum of the disease.

Ruth Hagestuen, founder of the ATTP program, has worked in the Parkinson’s community for many years as a movement disorders nurse and was instrumental in ATTP from the beginning. In this podcast, she describes how the program came about, its goals, what it involves, and how it has spread team training in expert care around the country and around the world.

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.

Parkinson’s disease is a complex condition, involving more than just movement. And to ensure the best outcomes and quality of life, people with PD should have a coordinated team of health professionals to help with their physical, social, and emotional needs. Since PD is a progressive disease, this array of health professionals can keep a constant eye on the changing condition and provide appropriate therapies as needs arise. Today, Lisa Mann, the nurse and education director for the Oregon Health and Science University Parkinson’s Center in Portland, a Parkinson’s Foundation Center of Excellence, discusses who should be part of the core team and how other rehab therapists and health care professionals can be brought onto the team as needed.

Released: June 5, 2018

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.

Medicare, the U.S. government health insurance program, covers more than 63 million people, with more than 49 million people also receiving prescription drug coverage. It provides health insurance for adults over 65 as well as people with some medical conditions or disabilities. The system has many moving parts, and beneficiaries need to understand it to derive the most benefit, know what it covers and does not cover, and what costs they will be responsible for. An important time is the initial enrollment period, when people need to decide what kind of plan they want to select, either “original” Medicare through the government or a Medicare Advantage plan with a private insurer. Receiving prescription drug coverage is another decision, one that is particularly important to someone with Parkinson’s disease.

Fortunately, there are several resources to help people sort out all the options, and once enrolled, the year-to-year coverage decisions are much less burdensome. In this episode, Jane Sung, JD, a senior strategic policy advisor at the AARP Public Policy Institute, explains some of the intricacies of the Medicare system and helps to sort out the kinds of decisions people need to make about Medicare coverage.

Released: May 3, 2022

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.