If you live with Parkinson’s disease (PD) and experience pain, you are not alone. Chronic pain is twice as common among people with PD as it is in people without it. In fact, more than 80 percent of people with PD report experiencing pain and many say it’s their most troubling non-motor symptom. Fortunately, there are many ways to manage pain in PD. As with other aspects of the disease, there’s no one-size-fits-all approach. The first step is to work with your healthcare team to understand what’s causing the pain and then work together to find the best treatment plan for you.

What Kinds of Pain Can Be Part of Parkinson’s?

At its simplest, pain means the body hurts. When a person feels pain, nerves in the skin, joints and organs alert the brain to the location of an injury. Researchers have found that in early PD, there are already changes in the way that the body detects and regulates pain. Pain is complex and can take many forms. In PD, pain tends to affect the side of the body where motor symptoms first appeared. If your PD started with a tremor in the right hand, you’re more likely to develop pain in the right shoulder, wrist or fingers. Here are a few common types.

Musculoskeletal pain

Musculoskeletal pain is experienced by up to 75 percent of people with PD and includes pain in the muscles, bones or skeleton. It is related to rigidity and decreased movement, and to arthritis. Many people with PD experience muscle cramps and tightness in the neck, spine and arms. Muscles may feel stiff or achy. Joint pain, especially in one shoulder, is also common. It’s not uncommon for people with PD to be diagnosed with frozen shoulder or rotator cuff problems, and even undergo surgery.

Dystonic pain

Do you have painful curling of your foot, toes or hands? This is dystonia, a painful muscle spasm. Up to 50 percent of people with PD experience this at some stage of the disease. Foot dystonia is one of the most common sources of dystonic pain in early PD. Severe, painful spasms also can occur in the neck, face or throat muscles. Dystonia may occur spontaneously or may be triggered by certain movements, but is very often experienced in the early morning. It can also be related to fluctuations in PD medications. Report dystonia to your doctor for evaluation or recommendations.

Neuropathic pain

Also called radicular pain, neuropathic pain occurs when a nerve is crushed or inflamed. Between five and 30 percent of people with PD experience neuropathic pain. It feels sharp, electric, tingling or like coolness or numbness. In people with PD, changes in posture, as well as dystonia, can cause nerves to be crushed. A common type is sciatica - lower back pain that extends down one leg. People with PD may also experience peripheral neuropathy - injury to nerve endings that begins with numbness in the toes or fingertips.

Central pain

Central pain affects about 10 percent of people with PD at some point. It can be difficult to describe but may include a vague, constant boring sensation; abdominal pain, reflux, shortness of breath or feeling flushed; painful sensations around the mouth, genital or rectal areas or simply “pain all over.”

Treating Pain

How can you make a specialized plan for your PD pain? Build a team that includes a PD doctor, nurse, physical therapist, occupational therapist, pain management specialist and in some cases, an orthopedic specialist.

Optimize PD Medications

It’s critical to ensure your PD medications are working optimally. Your doctor may want to examine you immediately before and after you take PD medications. To increase, decrease or change your medication to extend its effectiveness.

Exercise and Physical Therapy

Exercise is beneficial, particularly for musculoskeletal pain, but it can be a catch-22. It may be difficult to exercise when you’re in pain, but if you’re in pain and you stop moving, it gets worse! A physical therapist can recommend exercises or techniques to target the source of your pain. For example, if you experience neuropathic pain, the physical therapist can help improve your posture, which may alleviate pain.

Other Medications

Your doctor can prescribe medications that target specific sources of pain. For example, muscle relaxants can help dystonia, as can deep brain stimulation (DBS) and botulinum toxin (Botox®). Medications for epilepsy and depression, such as gabapentin (Neurontin®) or nortriptyline (Pamelor®) may be helpful for neuropathic and central pain. Anti-inflammatory medications like ibuprofen may ease musculoskeletal pain.

Treat Depression and Other Health Conditions

Chronic pain and depression are intertwined. If a person experiences depression, it may worsen pain and other PD symptoms. In addition, people who are depressed have a hard time taking medications properly, and this sets a vicious cycle in motion: with missed doses, medications don’t work well, and a person feels worse. Treating depression is essential for managing pain. It’s also important to treat other health conditions, such as osteoporosis or diabetes, that impact pain.

Self-Management for Pain

If pain begins suddenly or an injury occurs, it is considered acute, especially if there is swelling or bruising. Apply cold packs for 15-10 minutes several times daily for the first 48-72 hours. Elevate the area to decrease swelling.

If pain is long lasting (chronic), apply heat to the area for 15-20 minutes. Purchase a microwaveable hot pack that conforms to the area (or make your own with rice in a tube sock knotted at the opening). Heat pack according to directions; heat rice-filled sock for approximately two minutes in microwave.

If muscles feel tense or “knotted,” try self massage. Apply pressure to the area with a tennis ball, using your body weight against it for deeper pressure. Knobby plastic massage tools or a Theracane can be used to get better leverage on hard-to-reach areas. An appointment with a massage therapist may also be helpful.

Involving Your Team

When pain lasts longer than two weeks, interferes with sleep, or intensifies, it’s time to involve your team. Keep track of WHEN the pain started, WHERE it hurts, HOW long it lasts and WHAT it feels like (achy, sharp). It will be useful to also track when the pain starts in relation to when you take your medication. This information will help your healthcare team work more efficiently with you in designing a treatment plan.

Road to Recovery

Pain in PD is often overlooked and can have a significant impact on quality of life. The good news is that it can be managed. Tell your doctor about your pain so you can figure out what kind it is and find the best solutions for it. Once a cause is determined, you and your team can choose therapies that best fit your individual needs so you can feel your best.

A balanced diet is a foundation of good health. For people with Parkinson’s disease (PD), a balanced diet is even more important. In PD, there are some foods that may help to ease symptoms and help brain health, while others can affect the way medications work. While there are many things about PD that cannot be changed, the informed choice of diet can help people to live better with the disease.

Foods That Promote Brain Health

In the science of brain health, we often use the word neuroprotection: the process by which we can support the health of brain cells and their ability to communicate with one another. Over the years, various food groups have been studied in animals and in large epidemiological studies of human populations for their potential to promote brain health. Initial research has provided some evidence about possible benefits of certain foods. Although there isn’t yet evidence about the specific benefits for Parkinson’s disease, what we do know is that these foods are part of a healthy diet.

Neuroprotection

Of all the foods that have been studied for their potential to promote brain health, research into nuts and herbs has shown promise. Here is what we know.

• Walnuts. Walnuts contain an essential fatty acid called omega 3 and a variety of minerals, which early studies associate with a decreased risk for dementia. Try eating five to 10 each day.
• Pistachios. Emerging evidence shows these nuts (the vitamin K and antioxidants in them) may have potential for helping to reestablish lost connections between neurons. They also contain a small amount of lithium, which may help to improve mood. You can eat a few of them two or three times a week.
• Macadamia nuts. Oils in these nuts may increase the production of neurotransmitters that help brain cells communicate with each other. They are high in calories, but a few a day is good for you.
• Cashews. Iron, zinc and magnesium in cashews may boost serotonin — a neurotransmitter linked to good mood — and may reduce memory loss.
• Almonds. Although they have little effect on brain health, almonds contain fiber, which helps relieve constipation (a common symptom in PD).
• Brazil nuts. These nuts contain selenium, a mineral that may have the potential to counteract environmental toxins like pesticides and herbicides. Eat no more than one or two a day.
• Turmeric. This spice turns Indian food orange, and its active ingredient is curcumin. Add tumeric to food, but don’t take it as a supplement.
• Ceylon cinnamon. In animal studies, this spice has shown potential for normalizing neurotransmitter levels and other PD brain changes. Look for Ceylon cinnamon, which is grown in Sri Lanka and labeled as such. Organic cinnamon is also preferable.

Anti-Inflammatory Foods

Fighting inflammation can be another important strategy for keeping the brain healthy. The types of fats you consume may play a role in reducing inflammation in the body, and those known as “medium-chain triglycerides” may be particularly helpful. Coconut oil contains this fat. You can cook with it just as you would with olive oil. Other anti-inflammatory foods include rosemary, oily fish, like salmon, tuna and mackerel, dark leafy green vegetables, like kale, collard greens and spinach and soy products.

Benefits of Purple and Red

Foods that contain antioxidants may also protect brain health. Antioxidants counteract molecules known as “free radicals,” which can damage healthy cells including neurons. Fruits that are purple and red, like blueberries and raspberries, contain pigments called anthocyanins, which are well-known antioxidants. Some studies suggest that drinking green tea (three cups a day) is neuroprotective, because EGCG, found in green tea, is both an anti-inflammatory agent and an antioxidant.

Foods for PD Symptoms

Nutrition adjustments can help ease some of PD’s most common symptoms, both of a motor and a non-motor nature. If you experience digestive difficulties, especially constipation (which is very common in PD), try to drink more fluids, and increase your fiber intake with fruits and vegetables such as kiwi, apples, prunes, dates, figs, radishes, berries, nuts and beans. Probiotic supplements like Bifidobacterium (B. breve, B. adolentis and B. infantis), that add healthy bacteria to the gut, may also be helpful.

If drinking more water leads to urinary incontinence or urgency, increase your fluid intake by eating foods with a high water content such as tomato, cucumber, radish, celery, broccoli and grapefruit. If you struggle with weight loss or loss of appetite, try increasing your calorie intake by eating nuts and foods that contain healthy fats, like coconut and avocado. To stimulate your appetite, try bitter greens like collard and beet greens, or spicy foods. Exercise can increase muscle mass and hunger.

Fatigue and sleep difficulties are also common symptoms of PD. The culprit of these problems may be sugar. When eaten during the day, sweets briefly boost energy, but make you sleepy later. When eaten in the evening, they may keep you awake.

Another reason to limit sugar is that it causes a spike in blood glucose, which contributes to inflammation. When reaching for a snack, try foods that offer a balance of protein and fat, like nuts or avocado, or whole-grain complex carbohydrates, like brown rice and quinoa.

How Foods Affect PD Medication

Another benefit of dietary changes can be improvement in the effectiveness of PD medications. Taking medications at mealtime can affect how quickly they are absorbed into your system, and the rate at which your body uses, or metabolizes them. If you take carbidopa/levodopa (Sinemet) for PD symptoms, you may find that protein-rich foods such as meat, fish, eggs or dairy products, or high-fat foods, lengthen the time it takes for the medicine to kick in, or make the medication less effective.

The solution? Talk to your doctor about taking levodopa 30-60 minutes before a meal or 1-2 hours after finishing a meal. Be aware that high-protein and high-fat snacks can also interfere with levodopa. Your doctor or a nutritionist can give advice on how to schedule the protein you eat, to avoid having it interfere with levodopa.

Conclusion

People with PD need to eat a balanced diet in order to feel their best and maintain energy. Eating more nuts and berries, cutting back on fried food and sweets, and cooking with herbs are all elements of sound nutrition and they may also help you manage your PD.

Sponsored by Kyowa Kirin.

Parkinson’s disease (PD) has both motor and non-motor symptoms. Among the nonmotor symptoms of PD are cognitive changes, constipation, sleep issues and mood disorders. Some non-motor symptoms may improve with an adjustment to your Parkinson's medication. Exercise, dietary modifications, psychotherapy and other supportive therapies are also key to managing the non-motor symptoms of PD. In addition, there are medications available to help address these symptoms.

Parkinson’s disease (PD) not only affects movement; it also affects the autonomic nervous system, which controls and regulates many automatic bodily functions — such as breathing, digestion and body temperature — without us needing to think about them. One of these functions is blood pressure. When we get out of bed or stand up from a chair, our blood pressure drops. To keep blood pressure in check, the nervous system releases a chemical called norepinephrine, which causes our blood vessels to tighten, sending blood from the legs and trunk up to the brain, the “control center” of the body.

People with PD often have lower amounts of norepinephrine. Because of this deficiency, blood pressure may not return to normal immediately after standing, resulting in fatigue, dizziness or even fainting. This type of low blood pressure — caused by a change in position — is called orthostatic hypotension (OH). When it is related to a nervous system disease, like Parkinson’s, it is also referred to as neurogenic orthostatic hypotension (nOH).

Orthostatic Hypotension (OH) is a form of low blood pressure that happens when standing after sitting or lying down.

Symptoms of orthostatic hypotension can include:

• Lightheadedness
• Dizziness
• Fainting
• Falls
• Weakness
• Foggy thinking
• Headache
• Trembling
• Nausea
• Cold hands and feet
• Chest/shoulder pain
• Vision changes

To check for OH, your doctor should take three blood pressure readings: laying down, within 1 minute after standing, after standing for 3 minutes.

Causes of Orthostatic Hypotension

In addition to PD itself, the medications used to treat PD can contribute to OH. Other medications can lower blood pressure as well. These include some antidepressants, diuretics (water pills), drugs for urinary problems and erectile dysfunction and, of course, medications used to treat high blood pressure.

Heart disease, fever, anemia (low red blood cell count) and dehydration can also lower blood pressure. Dehydration is particularly important to watch out for. When people are dehydrated, their body water decreases. Low body water means less circulating blood, which generally leads to low blood pressure.

Diagnosis of Orthostatic Hypotension

If you feel symptoms such as lightheadedness, dizziness or weakness when you stand up after sitting or lying down, you may be experiencing orthostatic hypotension. Your doctor can measure your blood pressure to test for the condition — defined by a drop of at least 20 millimeters of mercury in systolic blood pressure (top number) and 10 millimeters of mercury in diastolic blood pressure (bottom number) within three minutes after standing up.

Treatment of Orthostatic Hypotension (OH)

This condition can put people with Parkinson’s at risk of fainting, losing balance and falling. Recognizing the signs of OH is key to developing strategies to prevent falls, which can result in serious injuries. Stay hydrated by drinking fluids, especially during hot- weather months. Also, when getting out of bed or standing up from a chair, move slowly to give your body time to adjust.

In addition, ask your doctor to review your medications and identify any that may be lowering your blood pressure. Your doctor may decide to reduce the dose of a medication or even eliminate it if no longer needed. 

Talk to your doctor about medications that can help you reduce OH symptoms. Be aware that medications that raise low blood pressure to normal levels when a person is standing may cause high blood pressure when a person is lying down. There may be additional side effects to discuss with your doctor.

Managing Orthostatic Hypotension

• Drink lots of water – at least one cup (8 ounces) with meals and several more throughout the day. Check with your doctor for the right amount for you.
• Practice regular, gentle exercise and avoid long periods of inactivity.
• Work with a physical or occupational therapist to learn exercises that increase blood flow to the heart.
• Eat small, frequent meals. Reduce alcohol and avoid hot drinks and hot foods.
• After consulting your doctor, increase your salt intake by eating prepared soups or pretzels. Note: People with heart disease should avoid this.
• If you expect to be standing for a long period of time, drinking two 8-ounce glasses of cold water quickly will increase blood volume and blood pressure will go up.
• Try wearing thigh or waist-high compression stockings or an abdominal binder.
• Move slowly from lying to sitting and then standing.
• Avoid overheating by limiting your exposure to midday sun during warmer months, very hot showers, hot tubs, saunas, etc.

If you feel dizzy or like you might faint or fall, sit back down immediately – even if you have to sit on the floor.

Parkinson’s disease (PD), like many chronic illnesses, can change the dynamics of a relationship, particularly when it comes to intimacy and sexuality. Exploring new ways to connect and communicate — whether you have PD or you care for someone who has PD — will help strengthen your relationship. Here are some suggestions for creating a deeper intimacy with your loved one.

Communication

Many couples do not openly talk about sex and intimacy, relying on predictable, nonverbal patterns of sexual expression (such as a look or touch). Given that PD may result in physical or emotional changes that can change these established patterns, maintaining open communication about feelings and emotions is essential.

PD may cause changes in facial expression that can be interpreted as lack of interest. This symptom, called “facial masking,” happens when the same stiffness and slowness that can impact walking and other activities impacts the muscles in the face of someone with PD. Because of this symptom, it is especially important to communicate your needs and listen openly to your partner’s needs.

We all have doubts about our appearance and insecurities about how our bodies may change over time. Express your love and appreciation for your partner regularly. Knowing that your partner still cares and needs you is of great comfort.

A strong friendship, based on caring and communication, is vital for any relationship. Share your thoughts, feelings and concerns, and encourage your partner to do the same. If you can learn to express your frustrations with one another, you will be less likely to build up anger and resentment.

Staying Close

Life and hectic schedules can get in the way of spending quality time together. Remember the things you enjoy doing together and remind one another what you love and appreciate about your loved one.

Parkinson’s can be unpredictable, so do not be disappointed if things do not go as expected. The most important thing is to remain flexible and sympathetic to our partner’s needs.

Patience and Understanding

As we grow older, our bodies may not respond or perform as they used to. Maturing is learning how to be comfortable with who you are and staying open to self-discovery.

Parkinson’s can either help bring you and your loved one closer together or push you apart, depending on how well you are able to cope with challenges. The strength of your bond prior to illness also plays a role. Acceptance and understanding play a large role in helping you both deal with any problems within your relationship.

Be patient. Remember that the goal in sexual intimacy is mutual enjoyment. Emphasize comfort and pleasure, not performance.

Sex

People with PD frequently experience sexual dysfunction. Any combination of Parkinson’srelated symptoms like pain, limitation of movement, fatigue and sleep disorders — coupled with emotional changes such as anxiety and depression — as well as medication side effects can trigger sexual dysfunction. PD symptoms can affect many aspects of sexuality, including intimacy and erotic experiences, thereby adding to a couple’s discord and general dissatisfaction.

People with PD and their partners are typically embarrassed and uneasy when bringing up sex to health care providers, often diminishing the topic because they feel it is not a life-threatening issue. However, when asked to rate a variety of disabling motor and non-motor symptoms, people with PD rated sexual dysfunction as the 12th out of 24 most bothersome Parkinson’s symptoms [Politis et al, 2010].

Expanding the Definition of Intimacy

Intimacy isn’t just about sexuality; it involves mutual respect for each other’s spirit and autonomy. You can still reap the benefits of closeness by sharing time together and using touch in affirming ways that are not reliant on sexual performance. Hold hands, hug or cuddle as an expression of love and intimacy.

Daily routine can be tireless and demanding. Take time for one another outside the required tasks. Simply sharing a meal or watching TV together can be a special event. Consider planning a day trip or a weekend getaway, to a destination that provides care assistance if necessary.

Hypersexuality and Parkinson’s Disease

One out of every six people with PD taking a dopamine agonist drug will develop compulsive behaviors. Known as impulse control disorders, these behaviors may include compulsive gambling or shopping, hoarding or hyper sexuality.

Hypersexuality can include demanding sex, talking about sex and your desire for sex at inappropriate times; cross-dressing; and having affairs outside of your committed relationship.

People living with PD who are taking dopamine agonists and have developed hypersexuality should discuss it with their neurologist. Usually decreasing the dose or complete discontinuation of dopamine agonists resolves impulse control problems.

Tips for Intimacy and Parkinson’s

Never be afraid to ask for help. Sex therapy, couples therapy and behavioral therapy can help you:

• Increase open sexual communication between partners.
• Plan the setting of sexual activity (including time, location, position and roles).
• Learn comfortable positions.
• Adapt new sexual roles.
• Find new solutions for physical limitations (such as, touch, arousal, orgasm).
• Perform intimacy training and erotic tasks.
• Practice sensate focus — a process of re-learning body sensations.
• Practice growing intimacy and satisfaction through sexual stimulation without intercourse, then begin to add it back in, known as the intercourse-outercourse approach.
• Work with medical staff to reduce the effects of medications on sexual function.

Not ready for therapy? Speak with your doctor or social worker about feelings of depression, concerns regarding changes in sexual performance or difficulties with current relationships.

Call our Helpline for more information at 1-800-4PD-INFO (473-4636).

For people with Parkinson’s disease (PD), managing the disease often comes down to a daily balance of dopamine — the neurotransmitter that is lost in PD. The challenge is to work with dopamine replacement therapies to find the right levels of dopamine. Dopamine medications have improved life for millions of people, but researchers believe that some people with PD on these medications can develop impulse control disorders (ICDs) — unhealthy levels of gambling, shopping, eating and sexual activity.

What are Impulse Control Disorders?

An impulse control disorder is the inability to stop doing something that is harmful, or could become harmful, to yourself or others. Performing the harmful activity is believed to relieve anxiety and tension.

How Common are Impulse Control Disorders?

Scientists have known for over a decade that dopamine-related drugs for Parkinson’s could be linked to ICDs in some patients. However, it was not until 2004 that people living with Parkinson’s began to learn that ICDs could be a rare side effect of dopamine agonists. Today, we know that one in six people taking dopamine agonists will experience impulse control disorders.

How Serious are Impulse Control Disorders?

For some people, ICDs may be mild, or just a minor nuisance (for example, increased focus on eating sweets). For others, the impact may be more severe. People who experience compulsive gambling and compulsive shopping may lose large sums of money, even to the point of bankruptcy. Those who binge eat may experience significant weight gain, causing discomfort and embarrassment and possibly increasing vascular disease risk factors. Some of those who experience compulsive sexual behaviors may begin engaging in unprotected sex or sex outside of an established relationship, placing themselves and others at risk physically and emotionally. ICDs typically impact not only the person living with PD, but loved ones as well.

What should I do if I suspect I have an ICD?

• Keep a drug diary and record changes in your mood or behavior, as well as physical responses.
• If you find yourself starting to engage in any of the behaviors listed above or doing things that you feel guilty doing, talk to someone about it. A support group member, your doctor or someone from your place of worship are potential resources.
• Let your family know what is happening, because the problem affects them too. ICDs could be a significant stressor on a marriage.

If the doctor determines that you have a medication-induced ICD and the medications in question are dopamine agonists or monoamine oxidase (MAO) inhibitors (ex. Pramipaxole, Ropinirole, Rasagiline, Rotigotine patch), the doctor can work with you to reduce your dosage or switch to another medication.

ICDs usually subside for people who clearly did not experience the ICD previous to that time and developed it in the context of taking a dopamine replacement therapy for Parkinson’s. There is a much smaller subset of people for whom ICDs persist despite the discontinuation of medications. There is another subset of individuals for whom going off a medication is not an option. Perhaps their Parkinson’s symptoms are too severe, or they are receiving psychological benefit from the medication. These individuals have other options. People who have significant motor fluctuations and have lived with PD for several years may be candidates for deep brain stimulation (DBS) surgery. Since a person can typically decrease his or her medications after DBS, this often will ease his or her ICD. A few other strategies have been explored, such as use of antidepressants, but there is little evidence at this point of their efficacy. Scientists are also investigating novel treatments to resolve ICDs but the evidence on these strategies is limited at this point.

Should people with Parkinson’s be concerned about their risk of developing ICDs?

It is now confirmed that dopamine agonists are associated with impulse control disorders. Data from the U.S. Food and Drug Administration and many other sources support this association. The large incidence (1:6) of impulse control disorders has been strongly associated with the use of dopamine agonists and should prompt practitioners to warn patients and family members about these issues. Remember, an impulse control disorder may be pleasurable, and therefore patients may hide the issue from friends and family. A prospective monitoring plan should be initiated along with the dopamine agonist therapy. The safest plans involve spouses, caregivers and friends who can provide feedback on any change in behavior directly to the prescribing physician. Remember, a person with Parkinson’s must consent to a prospective monitoring plan is necessary before implementation.

Call our Helpline for more information at 1-800-4PD-INFO (473-4636).

In this webinar, Dr. Janis Miyasaki reviews the WHO criteria for palliative care, the various models of palliative care delivery, hospice and hospice criteria in the US, the challenge of palliative care coordination with subspecialists and the people required to make palliative care work. She alsos review the symptoms of PD not often associated with symptom burden in addition to spouse and family challenges.

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Presenter

Janis M. Miyasaki, MD, MEd, FRCPC, FAAN
Director, Parkinson and Movement Disorders Program
University of Alberta

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

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Presentadora

Adriana Gonzalez, MSW, LCSW, University of California San Diego

About 75 percent of people with Parkinson's Disease (PD) experience changes in speech and voice at some time during the course of the disease. These changes usually come on gradually and can vary from mild to severe.

Communication is a vital part of daily life and extends beyond speech and voice abilities. It also includes the ability to formulate your ideas into a message, understand messages and words conveyed by others, and the ability to put your ideas into words. Communication also includes the ability to use body language, gestures, and voice pitch and loudness changes to emphasize ideas, add humor, and convey emotions. Problems communicating can lead to feelings of frustration, depression, and withdrawal. Learning how PD affects communication and what you can do about it can help you better cope with problems that you might experience.

Many of these problem areas can be improved with PD-specific exercise programs, devices that help communication, and strategies and techniques that can help you and your conversation partners to communicate more effectively and efficiently.

Listen Now

Like people with other chronic diseases, people with Parkinson’s disease (PD) often struggle with mental health. While the illness is known to impair many aspects of movement, research from the Parkinson’s Outcomes Project has found that two non-motor symptoms — depression and anxiety — play a key role in the disease and on people’s quality of life.

While feeling worried is an understandable reaction to a Parkinson’s diagnosis, when feelings of constant worry or nervousness go beyond a reasonable point, a person may experience anxiety, which is more serious.

Forms of Anxiety

Anxiety is a common non-motor symptom of PD. Anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in brain chemistry. Up to 40% people with PD will experience one of these forms of anxiety:

Generalized Anxiety Disorder (GAD) is characterized by feelings of nervousness and recurring thoughts of worry and fear. Physical symptoms that may accompany these feelings include butterflies in the stomach and nausea, trouble breathing or swallowing, racing of the heart, sweating and increased tremors.

Anxiety Attacks, or panic attacks usually start suddenly with a sense of severe physical and emotional distress. Individuals may feel as if they cannot breathe or are having a heart attack. These episodes usually last a few minutes to an hour, particularly when associated with “off” periods, though they can last for longer periods of time.

Social Avoidance, or social anxiety disorder, involves avoiding everyday social situations because of a fear of embarrassment caused by having having Parkinson’s symptoms, such as tremor, dyskinesias, or noticeable trouble walking in public.

Obsessive-Compulsive Disorder (OCD) may cause persistent, unwelcome thoughts or images (obsessions), and the urgent need to engage in certain rituals (compulsions) to try to control or rid themselves of these thoughts. Anxiety can begin before a PD diagnosis or develop much later on. While some people with PD experience anxiety on its own, many are diagnosed with anxiety along with depression. Anxiety is less well-studied than depression, but it may be just as common. If left unchecked, anxiety can worsen a person’s overall health condition.

Causes of Anxiety

Psychological Factors - Common fears and worries that go along with PD may trigger anxiety. One is a fear of being unable to function independently, particularly during a sudden “off” period (the time of day when medication is not working).

Biological Factors - Many of the brain pathways and chemicals affected by Parkinson’s are the same as those affected by anxiety and depression. In some cases, anxiety is directly related to changes in motor symptoms. Specifically, people who experience “off” periods can develop severe anxiety during these states, like anxiety attacks.

How Is Anxiety Diagnosed?

Anxiety is usually diagnosed by a primary care physician, or a mental health professional, who will ask questions about certain symptoms. The doctor usually asks questions about mood changes and behaviors. For people with an anxiety disorder, symptoms can become so intense that they are unable to function normally in life.

In general, symptoms of anxiety may include:

• Excessive fear and worry
• Uncontrollable or unwanted thoughts
• Sudden waves of terror
• Nightmares
• Ritualistic behaviors
• Problems sleeping
• Pounding heart
• Cold and sweaty hands
• Dizziness
• Nausea

In people with Parkinson’s, a diagnosis of an anxiety disorder is made only if the symptoms involve a clear change in a patient’s previous behavior and are not easily confused with motor symptoms. For example, even though there may be a legitimate concern that a tremor or change in walking ability may be noticed in public, a diagnosis of social avoidance is only made if the person realizes that the concern is excessive, the social situation is avoided, and it causes interference in the person’s social or work life.

Treating Anxiety

There are two main types of treatment options for anxiety: medications and psychological counseling (psychotherapy). Depending on the severity of symptoms, psychotherapy can be used alone or combination with medication. Care should be tailored to each person’s individual needs.

Psychotherapy

Psychotherapy or “talk therapy” refers to many varieties of counseling. This treatment can help people diagnosed with an anxiety disorder understand and better manage their symptoms. Psychotherapy offers two advantages: no drug side effects and coping skills that can be used over the long term.

Cognitive behavioral therapy (CBT) is effective at helping people change negative thinking patterns and behaviors to solve their problems and engage in life. CBT encourages people to develop more positive thoughts about themselves, the environment around them and their future: in this case the outcome related to their illness.

Counseling sessions can provide vital support, understanding and education. People with PD may be seen alone, as a couple or family, or in a group.

Non-Conventional Therapies for Anxiety

• Relaxation techniques
• Massage therapy
• Acupuncture
• Aromatherapy
• Meditation
• Music therapy

Tips for Living with Anxiety

• Educate yourself about PD and its symptoms, including anxiety.
• Keep a diary of your moods, medications and PD symptoms.
• Figure out what triggers your anxiety.
• Talk with your doctor about anxiety.
• Tell your care partner and family members how you are feeling, so they can understand your emotions better and help you cope.
• Find a support group for people with PD.
• Be flexible in your approaches to coping with anxiety; try different approaches.
• Understand that symptoms change; if a coping strategy stops working, try a new approach.
• Know that everyone experiences anxiety differently.

Call our Helpline for more information at 1-800-4PD-INFO (473-4626).