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PD Take Three: Tips from the Health Care Team

Are you looking for tips for managing the challenges of Parkinson's? Find tips and tools from the health care team in PD Take 3.

For each question about Parkinson's below, find three tips from three health care professionals, including doctors, nurses and physical, speech and occupational therapists. Do you have additional questions? Find answers by calling PDF's toll-free HelpLine at (800) 457-6676 or emailing us at info@pdf.org. Our team is available Monday through Friday, from 9:00 AM to 5:00 PM ET.

[+] How Can I Cope with Pain in Parkinson's?

The Movement Disorders Specialist

Pain is a common symptom of Parkinson’s, yet it often goes unrecognized by people living with the disease, their families and health professionals.

Keep a Pain Diary. Write down such events as when you take medications, when you experience the pain, where it is located (neck, shoulder, foot, etc.), how long it lasts and any intervention that makes it better or worse. Is the pain dull and achy, or is it sharp and stinging? Does it happen in the morning or when medications wear off? Share the diary with your doctor to help you both better understand and manage your pain.

Talk to Your Doctor. Ask your movement disorder specialist if pain might be due to PD-related rigidity. People with PD often experience shoulder tightness and pain, and may resort to injections and surgeries before realizing it’s related to PD. Yet the PD-related rigidity that causes “frozen shoulder” often improves with medication, physical therapy and exercise ... no scalpel needed!

Stay Active. This may seem counterintuitive to a person who is experiencing PD-related pain, but physical therapy and exercise can be a big help. Research shows that people who are active rate pain as less severe and less bothersome than people who are not. Try gentle exercises such as yoga, tai chi, stretching or swimming.

Jori Fleisher, M.D., M.S.C.E., Assistant Professor of Neurology and Population Health, Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders at NYU Langone, New York, NY.


The Physiatrist

Pain can have a significant impact on quality of life for a person with Parkinson’s. If you experience pain, make sure your health care team is aware of it.

Ask Your Doctor if Your Medications Should be Adjusted. Pain can occur in PD as a nonmotor “off” symptom, meaning that it fluctuates with the schedule of your PD medications. If this is a problem for you, it may help to adjust those medications. Pain can also be aggravated by under-treatment of PD motor symptoms (e.g., rigidity) or as a consequence of severe dyskinesia, a common side effect of PD medications.

Maintain Your Exercise Schedule. Studies show that exercise can help with pain management for various reasons, including the release of natural opioids in the body. There is also some evidence to support the idea that exercise may help people with Parkinson’s because of its likely effect on the brain’s pain-reducing pathways.

Consider Consulting a Pain Psychologist. Psychotherapy has been shown to be beneficial in managing pain. Not only that, it’s also helpful in treating depression. Since depression is known to weaken tolerance for pain, addressing it may help in the overall treatment of PD-related pain.

Heather Baer, M.D., Associate Professor, Physical Rehabilitation Medicine and Neurology, University of Colorado School of Medicine, Denver, CO


The Psychologist

It is now well understood that the overwhelming majority of people who live with Parkinson’s experience disabling nonmotor symptoms, such as acute and chronic pain.

Chart Your Course. Like Dr. Fleisher, I recommend that my patients keep a diary for as long as two weeks. Use it to record the impact of stress, and of negative feelings (e.g., anger, depression and anxiety) on pain. Identify the experiences that trigger your pain at its worst, to help you find ways of getting it under control.

Stop Pain in Its Tracks. Develop a list of “go-to” coping strategies (e.g., listening to music, meditating, finding distractions) and try using them at the very first sign of pain. It is much easier to control pain when it is in its early, mild stages than to wait until it becomes severe.

Try to Put Pain in Its Place. Living with pain is not easy. But focusing on it intently may make it even worse. If you notice negative thoughts, think of all you can do — for example, “I don’t like this, but I can stand it!” or, “Here are strategies that I can use to manage it and live well.”

Roseanne D. Dobkin, Ph.D., Associate Professor of Psychiatry, Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School, Piscataway, NJ.

[+] How Can I Cope with Depression in Parkinson's?

The Nurse Specialist

Rebecca Martine, M.S.N., R.N.We now know that Parkinson’s can affect individuals in ways beyond the well-known symptoms of tremor, gait changes and balance issues. Mood disorders, specifically depression, are extremely common yet often overlooked and undertreated.

Keep an Open Mind. Sadly, the stigma of depression often prohibits individuals from seeking help. Remember that depression is caused by chemical imbalances in the brain and is not a sign of weakness. While measures such as exercise and counseling can be effective, medications may be needed to restore appropriate chemical levels. Ask your doctor about your options.

Become Educated and Empowered. Although depression does not occur in every person with PD, it is helpful for all to be informed of the risk of depression and its symptoms. A higher level of awareness will mean quicker identification of a problem, and in turn, timely treatment and better quality of life. After all, treating depression is essential to ease other Parkinson’s symptoms.

Put it Out There. Many movement disorders specialists now incorporate questions about mood in their exams. If your doctor does not, raise the topic to ensure a comprehensive assessment at every visit.

Rebecca Martine, M.S.N., R.N., Associate Director of Education/Clinical Nurse Coordinator, PD Research, Education and Clinical Center, US Dept. of Veterans Affairs, Philadelphia, PA.


The Social Worker

Elaine Book, M.S.W., R.S.W.Depression can be a very real part of daily life with Parkinson’s disease. In fact, the sooner it is addressed, the sooner you will feel better.

Share Your Feelings. Your doctor needs to know how you are feeling in order to recommend coping strategies, whether medical or non-medical — for example, a referral to a psychiatrist or counselor. Look for a therapist through your employee assistance program or your local Parkinson’s clinic. Asking for help takes courage, but it can also make you feel empowered to help manage your disease.

Plan Your Day. Set reasonable goals every day — for example, designing your exercise routine, managing your email, or planning household chores. Accomplishing little things can help give you a feeling of self-worth and a sense of fulfillment. Reward yourself with a pleasurable activity. Remember, he who laughs … lasts!

Stay Socially Connected. Studies show that people feel happier when they are with others. Look for positive relationships where you can give and receive support. Consider taking on some volunteer work, or reignite an old friendship. Strong social bonds provide nourishment for your sense of well-being.

Elaine Book, M.S.W., R.S.W., Clinical Social Worker, Pacific Parkinson’s Research Centre, University of British Columbia Hospital, Canada.


The Psychologist

Roseanne D. Dobkin, Ph.D.No one with Parkinson’s has control over their diagnosis. Focusing on the aspects of Parkinson’s disease over which you do have some control can help.

Take Back Control. If your mood is not as good as you would like it to be, you don’t need to suffer in silence — seek professional help. Both psychotherapy and antidepressant medications can help people with PD and should be covered by insurance. Ask for referrals for professionals from national and local psychological associations, your insurance carrier or your health care team.

Reframe Thinking. It is common to experience sadness or negative thoughts. But when we hold on to these thoughts (e.g., a feeling of helplessness) and let them play over and over, it can make coping with PD more difficult. If you notice such thoughts arising, “press pause,” rewind them and try to replay them in a different way (“There are many things I can do to enhance my quality of life”).

Treat Yourself to Meaningful and Pleasurable Activities. People who stop or decrease the activities that bring them joy are likely to feel depressed. Try social and leisure activities, whether ones you enjoyed before PD or new ones. Then gradually increase involvement with the ones that you find the most gratifying.

Roseanne D. Dobkin, Ph.D., Associate Professor of Psychiatry, Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School, Piscataway, NJ.

[+] How Can I Help a Loved One with PD?

Special edition in recognition of November’s National Family Caregivers Month

The Social Worker

Elaine Book, M.S.W., R.S.W.Life can be challenging for individuals with PD and the family members who support them. It is not about waiting for the storm to pass, but about learning to dance in the rain.

Learn About the Diagnosis. Seek out information on the basics of PD from reputable sources such as PDF. Learn about symptoms — both motor and nonmotor — to help manage the disease. Remember, no two people with Parkinson’s are the same — and not everyone will get every symptom.

Communicate. Have open, honest conversations with the family about the impact of PD to ensure emotions are addressed, and to avoid anger, resentment and guilt. Also have regular conversations with your loved one’s health care team. These interactions will provide you with valuable information about PD and give you the opportunity to advocate for therapies and resources for your loved one.

Take Care of Yourself. To be your best for your loved one with Parkinson’s, maintain your own wellness — social, emotional and physical. Accept support — it is not a sign of weakness, but one of strength. Acknowledge any feelings of guilt you may have about taking care of yourself.

Elaine Book, M.S.W., R.S.W., Clinical Social Worker, Pacific Parkinson’s Research Centre, University of British Columbia Hospital, Canada.


The Movement Disorder Specialist

Christina Vaughan, M.D., M.H.S.Parkinson’s is slowly progressive and symptoms are quite variable from person to person. Your loved one’s needs will vary over the course of the disease.

Be Flexible. The symptoms of PD can fluctuate within a single day or moment. Even when medications are taken as directed, on/off periods can be unpredictable. If your loved one encounters unexpected changes in his or her PD, be open to rescheduling plans or making new ones.

Be Present. Your perspective can be invaluable to your loved one’s doctor, so try to attend the visits. It may be useful for you to take notes, since a lot of information is discussed in a short period of time.

Encourage Social Activities. Remaining engaged in meaningful activities and personal relationships is paramount to maintaining quality of life. Research has shown that reducing the frequency of social interactions is a strong predictor of motor decline in PD. In addition, new experiences are known to excite dopaminergic brain cells (the ones that are involved in PD). Use this as an opportunity to engage in new activities together — knowing that you’re stimulating dopamine activity while you’re at it!

Christina Vaughan, M.D., M.H.S., Assistant Professor, Department of Neurosciences Medical University of South Carolina, Charleston, SC.


The Care Partner and Nurse

Elaine Casavant, R.N.There is no road-map for this uncharted journey we take as care partners. Life with PD can be more positive with compassion, collaboration and comic relief.

Be Compassionate. Help to preserve your loved one’s dignity and sense of self-worth. Avoid answering questions on their behalf unless they ask you to do so. Encourage them to exercise. Plan activities around on/off periods. Allow your loved one to vent frustrations. Extend your compassion to yourself by getting adequate rest.

Collaborate. Prepare for the future together. Set up the “what if?” list. What if I (the care partner) am unable to provide care? What if my partner (person with PD) should develop dementia or need an alternative living arrangement? These issues are better addressed by the two of you as a team in the early stages of the disease.

Allow for Comic Relief. You will both need diversions, especially during difficult moments. For my husband and me, our diversion is comic relief. We joke about the gravitational pull of the floor, or the fact that someone keeps moving the toilet around. When sitting down for a meal, my husband jokes that a napkin will do unless you have a raincoat handy. We sing oldies to exercise the voice and dance to improve balance. Whatever works for you, be adaptable to the moment and the day.

Elaine Casavant, R.N., member, PDF People with Parkinson’s Advisory Council, care partner, Lansing, MI.

[+] How Can I Ease Constipation Related to PD?

The Movement Disorder Specialist

Ronald Pfeiffer, M.D.Constipation is a decreased frequency of bowel movements that is defined as fewer than three movements per week. It is estimated that up to 80 percent of people with PD experience constipation. Fortunately, there are some practical strategies that can help.

Move. Remember that movement begets movement. Physical activity may ease constipation — along with many other aspects of Parkinson’s disease — so get out there, be active and exercise!

Try a Laxative. One simple home remedy is the “Keep It Moving” or “Colon cocktail” (recipe and directions: 1/2 cup bran; 1/2 cup prune juice; 1/2 cup applesauce. Mix together and refrigerate. Take one or two tablespoonsful each evening). If that does not work, taking MiraLAX® — once a day, if needed — may provide relief.

Time It Right. If possible, try to time bowel movements during “on” periods when Parkinson’s medications are working. During these periods, there may be improved function and relaxation of the anorectal sphincter
muscles, which can aid bowel movements.

Ronald Pfeiffer, M.D., Professor and Vice Chair, Department of Neurology, University of Tennessee Health Science Center, Memphis, TN.


The PD Nurse Specialist

Heidi Watson, R.N.It is imperative to manage constipation in Parkinson’s disease to prevent bowel impaction. A healthy diet filled with fiber, fluids and plants can help.

Increase Fluid Intake. Drink eight to 10 eight-ounce glasses of fluid per day, especially if you are taking a fiber supplement. Water or herbal/green tea are the healthiest options. Try drinking sparkling water with a splash of juice or tea and a lemon slice to keep your taste buds active.

Boost Fiber. A daily intake of 25-35 grams of fiber is recommended. Fiber is present in whole grains, fruits, vegetables, nuts and seeds. Strive for nine to 11 servings of fruits and veggies daily. Add two tablespoons of ground flax seeds to oatmeal, soup or salad which, for the value, is the best constipation-easing item to buy.

Eat More Plants. Plant-based foods add meaningful nutrients to your diet (think antioxidants and fiber) without the extra fat and cholesterol that are present in meat and dairy products. Trade your morning egg and cheese for a bright green smoothie. Blend a banana, fruit, two heaping handfuls of greens (kale, spinach or Swiss chard), lemon juice and water. Add ground flax seeds and/or a handful of nuts for a protein boost.

Heidi Watson, R.N., Certified, Plant Based Nutrition, Clinical Nurse Coordinator, PD Research, Education and Clinical Center, US Dept. of Veterans Affairs, Philadelphia, PA.


The Gastroenterologist

Eamonn M. Quigley M.D., F.A.C.P., F.A.C.G.Many people think of constipation as a single symptom, or as having a single cause. It is more often than not the result of several issues, such as infrequent bowel movements, hard stools straining, a feeling that you need to go but cannot, or a feeling that you have not finished.

Single Out Symptoms. Since so many factors can contribute to constipation in PD, they all need to be considered in developing a treatment plan that is specific to your needs, or before deciding whether
further testing is needed. Begin with a detailed conversation with your movement disorder specialist or gastroenterologist about which of the symptoms or causes are bothering you.

Try a Laxative. By the time a gastroenterologist sees a person with PD, changes in diet or fiber supplements have usually already been tried. I like to start by prescribing a dissolvable laxative such as PEG 3350 (MiraLAX®) or lactulose. I generally prefer the former as lactulose may cause gas or bloating.

Find the Right Medication. There are drugs for constipation that can be used in PD if other strategies fail. These include clear liquids, syrups, tablets or capsules, and new medications that go directly into the gut (instead of entering the bloodstream) thus preventing interactions with other medications.

Eamonn M. Quigley M.D., F.A.C.P., F.A.C.G., Medical Director, The Lynda K. and David M. Underwood Center for Digestive Disorders, Houston Methodist Hospital, Houston, TX.

To learn more on this topic, see PDF's free resources below:

View PD ExpertBriefing: When PD Interferes with Gastrointestinal Function

Download Fact Sheet: Gastrointestinal & Urinary Dysfunction

[+] How Can I Break or Avoid a “Freeze” in Parkinson’s?

The Movement Disorder Specialist

Blair Ford, M.D.For some people, the problem of freezing can be solved by a simple readjustment of levodopa. But for others, mechanical strategies may be needed.

Avoid known triggers. Freezing is often triggered by space constraints (e.g., a crowded area or a narrow doorway), and can occur when the person is pivoting or approaching a target. Avoid these situations. Wait for crowds to pass before you begin to walk. Instead of trying to execute a pivot, walk in a deliberate circle.

Develop stepping “cues.” Because people with PD sometimes have difficulty generating their own internal cues to prompt a step, using external cues may help to end a freezing spell. The cues can be physical, visual or auditory (e.g., an object to step over, a stripe on the floor, or a rhythmic marching tune).

Practice stepping. Attempt a deliberate, exaggerated step, as if you were deliberately moving in slow motion. Practice stepping, even when you are not experiencing a freezing episode.

Blair Ford, M.D., Professor of Clinical Neurology, Columbia University Medical Center and PDF Scientific Editor, New York, NY.


The Physical Therapist

Heather J. Cianci, P.T., M.S., G.C.S.A freeze, if not handled properly, can be dangerous. One way to find new strategies for reducing the risk of freezing is physical therapy.

Focus on yourself — not on the people or things that are around you. Do not worry that you may be delaying someone, or that the elevator may close. Right now, keep your focus on stopping the freeze — and once this is achieved, safely restart movement.

Never “fight the freeze.” When your feet feel stuck to the ground, your natural instinct may be to force them to move. Resist this temptation. Instead, as soon as you feel the freeze coming on, try to stop, stand tall and take a deep breath. Shift your weight from one foot to the other until you can take one big, complete step at a time.

Use your head — and your feet — but not your hands. Reaching forward during a freeze, or allowing your walker to move too far ahead of you, will move your weight to the balls of your feet, and may lead to a forward fall. Instead, reach backwards, or to the side, to stop yourself. Stay within your walker. Control your movement by “telling” your feet what to do.

Heather J. Cianci, P.T., M.S., G.C.S., founding therapist, Dan Aaron Parkinson’s Rehabilitation Center, Good Shepherd Penn Partners, Philadelphia, PA.


The Occupational Therapist

Since freezing occurs in part because of the body’s inability to plan movement, try strategies that make your movement more automatic.

Use an interactive metronome. This therapeutic tool can be used to establish a unique rhythm for each user. After programming the device, place it on a nearby surface. Then, perform tasks — for example, chores or exercise — to its beat. It will help your movements to become more fluid.

Dance. The movements of the waltz and other dances will encourage you to step in various directions, and this will strengthen your muscles and improve both your balance and your ability to step sideways (even backwards!). Dancing can also establish a rhythm or internal beat that your body can follow automatically. By preparing you to start and stop movement without thinking, dance will help reduce freezing.

Ride a stationary bike. Practice interval training, in which you change the direction, or rate, of pedaling in two-minute intervals. Work on stopping and starting the pedals after a rest break of five to 10 seconds. These practices will help improve your strength and motor function, which in turn will help to reduce freezing.

Stacy Hodges, O.T., Director, Rehab Services, Virginia Gay Hospital, Vinton, IA.

[+] Are There Strategies to Help With My Changing Voice?

Gwyn Vernon

The PD Nurse Specialist

Yes, there are many things you can do on a daily basis to improve your communication. But first, you must become aware of the problem.

Be Self Aware: Tape record yourself speaking in front of a mirror. Take note of the issues you discover. Perhaps you are experiencing a lack of expression, low volume or monotone voice. Note your “emotional tone” or lack thereof. Then focus on these issues … and practice, practice, practice.

Improve your "speaking behavior:" Straighten your posture, face and look at your listener, keep your chin up, take deep breaths before speaking and when completing a phrase or sentence. Focus on big and loud sounds and slow and short phrases.

Practice Daily: Read aloud one newspaper article a day, while practicing the breathing and phrasing techniques mentioned above. Sing to improve facial tightness, volume, rhythm and clarity. Develop a subtle cue your partner/family can use in public to let you know you need to focus on your speech. Consider placing a voice amplifier on your lapel, and on the telephone.

Gwyn M. Vernon, M.S.N., C.R.N.P., Penn Medicine Neuroscience Center, University of Pennsylvania School of Nursing, Philadelphia, PA.


Angela Roberts-South

The Speech Language Pathologist

Upwards of 80 percent of people with PD may experience voice-related changes, such as reduced loudness, reduced pitch variability, and breathy/hoarse voice quality. Coping with these changes requires a combination of approaches.

Exercise: Try the Lee Silverman Voice Treatment program, an intense, evidence-supported, systematic exercise program that improves voice loudness in PD. Also, look into the Expiratory Muscle Strength Training, which uses a device designed to increase voice volume by improving respiratory support for speech.

Talk above the crowds: Try devices and therapies that use “The Lombard effect,” the involuntary tendency to elevate your voice loudness above others in a noisy environment. These include devices such as SpeechVive and computer apps such as iParkinsons, which deliver background noise that only you can hear, so you will involuntarily speak more loudly.

Amplify the positive: Try a voice amplifier, which uses a mic and a speaker in your ear. Even better, try wireless FM and soundfield systems, which discriminately amplify voice loudness to one or to many listeners.

Angela Roberts-South, M.A., Ph.D. Candidate, Health and Rehabilitation Sciences, Western University, Ontario, Canada


Blair Ford, M.D.

The Movement Disorder Specialist

Speech is an intricate process that involves many of the body’s structures. This means that problems with speech in PD can vary greatly from person to person. To improve your speech, it’s necessary to understand and treat your specific symptoms.

Understand your problem: Common issues include softness of speech, excessively rapid speech, slurred speech and difficulty finding words. Ask your doctor if medications are causing problems. Visit an ENT specialist to evaluate your vocal cords. Most importantly, see a speech therapist who specializes in PD.

Improve soft speech: Use techniques similar to those employed by actors and singers for projecting on a stage: improve body posture, exercise the vocal cords, practice articulation exercises, focus on your breathing, and push a lot of air from the lungs when speaking.

Slow down rapid speech: This is the most challenging situation to treat. You may find that rapid speech improves in practice sessions with a therapist, but deteriorates in real life. It may help to use a device that allows you to hear your speech on a time delay, transmitted through headphones.

Blair Ford, M.D., Professor of Clinical Neurology, Columbia University Medical Center and PDF Scientific Editor, New York, NY.

[+] How Can I Lessen my Risk of Falls with Parkinson's Disease?

The Movement Disorder Specialist

Blair Ford, M.D.

On one hand, falls are very dangerous. On the other hand, they are completely preventable.

Understand when falls happen. Common scenarios include: freezing while trying to pivot, resulting in a toppling to one side; freezing when starting to walk, stepping through a doorway, or approaching a chair, leading to a forward fall; a fall caused by a tendency to lean backwards; toppling while squatting; tripping over an uneven surface; falling on stairs while carrying something in both hands; falling when moving without your walker.

Assess why falls happen for you. Ask your neurologist to assess your risk by conducting an exam. Review the history and pattern of your falls, perhaps by keeping a diary: What happened right before you fell? Were you rushing?

Find ways to lessen your risk. Work with your neurologist to adjust medications in order to reduce freezing. He or she may suggest physical therapy, balance exercises or improvement of fitness. Consider using "cues" for freezing, a cane or a walker or — if you cannot stand unsupported — a wheelchair.

Blair Ford, M.D., Professor of Clinical Neurology, Columbia University Medical Center, PDF Scientific Editor, New York, NY


The Occupational Therapist

Stacy Hodges, O.T.

Make your floors safe. Remove all throw rugs in the home. If floors are a dark color, wear white shoes to promote contrast. If floors are light, wear black! Use electrical tape on steps to improve depth perception. It is preferable to use a color tape that contrasts with carpet /floor. If you have hardwood flooring, place non-skid strips in front of chairs and toilets to prevent feet from sliding.

Use adaptive equipment in riskier rooms. Install railings on stairwells. Keep a walker/cane on each level of the home so you don't have to maneuver it on stairs. Place vertical grab bars beside the shower. Replace sliding glass doors in your bathtub with a shower curtain to create more space when you step over the tub.

Dress for success. Wear shoes that fit your feet. Avoid flip flops or slide-ons. Instead of sitting on the edge of the bed for dressing, sit in a chair with bilateral arm rests. When putting on socks, utilize a sock aid, reacher or a dressing stick. Use a walker tray or basket to carry items around the home.

Stacy Hodges, O.T., Director, Rehab Services, Virginia Gay Hospital, Vinton, IA


The Physical Therapist

Heather Cianci, P.T.

Pursue a serious exercise regimen — one that gets you doing some type of exercise every day. Include a form of exercise that gets your heart rate up — dancing, water aerobics or walking at a good pace with BIG steps. Do balance exercises like tai chi, standing on one leg or shifting weight from one leg to the other. Perform strengthening exercises, especially for your legs and posture.

Unclutter your home, your office ... and your mind! Clear your floor of objects that are likely to trip you. Rearrange furniture to give you more space to walk. Do not try to do — or to think about too many things at once. Multitasking makes walking more challenging.

Learn how to walk and move properly — that means seeing a physical or occupational therapist. Stand TALL and look where you are going — NOT at your feet. Take BIG steps and land on your heels. DO NOT PIVOT when you turn — take a BIG step in the direction you want to go. To turn right, step with the right foot first.

Heather J. Cianci, P.T., M.S., G.C.S., founding therapist, Dan Aaron Parkinson's Rehabilitation Center, Good Shepherd Penn Partners, Philadelphia, PA

[+] How Can People Cope with Cognitive Changes in Parkinson’s Disease?

The Movement Disorder Specialist

Rebecca Gilbert, M.D., Ph.D.Cognitive changes in Parkinson’s are common and can be frustrating. Focus on the ways that you can maximize your abilities. Here are some things to consider.

Talk with Your Doctor. Your doctor may order blood work to make sure that any reversible causes of cognitive decline can be discovered — such as low thyroid levels or low levels of Vitamin B12. He or she may order formal testing to assess your difficulties and may prescribe medications to ease symptoms.

Ensure Depression is Adequately Treated. Depression is a common symptom of Parkinson’s disease and needs to be addressed, at times with the use of a medication. Depression can sometimes masquerade as pseudodementia, a cognitive disability that improves along with improvement of mood.

Keep the Body and Mind Active. The brain stays nimble through novelty and activity of all forms — physical, mental and social. Try to make sure that varied activities fill all the days of the week. Move in whatever way you can as often as you can. Stimulate your mind by learning something new. Listen to music. Engage socially with others, in and out of the home.

Rebecca Gilbert, M.D., Ph.D., Clinical Associate Professor of Neurology, NYU Langone Medical Center, Parkinson’s and Movement Disorders Center, New York, NY.


The Psychiatrist

Laura Marsh, M.D.Most people with PD experience some degree of cognitive change during the course of the disease. Common complaints include slowed thinking, memory problems, difficulty with attention and issues with executive dysfunction (e.g., problems with multitasking).

Identify and Treat Reversible Causes. Talk to your doctor about conditions (e.g., infections) and medications, including those for PD, that can cause or aggravate cognitive changes. Common offenders include anticholinergics, dopamine agonists, benzodiazepines and opiates.

Plan Ahead. Pace your activities and get adequate rest. Focus on one thing, topic or task at a time. Do more challenging cognitive activities during the times of the day when your PD symptoms are optimally controlled. Talk to family and friends about how to communicate in ways that reduce frustrations.

Play to Your Strengths. Focus on your abilities, rather than your impairments. This allows for successes and helps maintain a positive attitude. Treating depression and anxiety with medications and/or behavioral therapies helps keep a positive attitude, and can reduce cognitive change associated with mood.

Laura Marsh, M.D., Executive Director, Mental Health Care Line, Veterans Affairs Medical Center & Professor of Psychiatry, Baylor College of Medicine, Houston, TX.


The Care Partner

Elaine Casavant, R.N.We often think of PD as a disease of subtraction. It can also be one of addition. Even with loss of cognitive abilities, there are ways for you and your partner to add to life with PD.

Take Care of the Care Partner. Cognitive changes can be an added stressor on a relationship. Care partners, it is essential for you to stay healthy. Find a care partner support group or start one. Arrange for an alternate care partner to relieve you one hour a day or during an emergency. Ensure that this person has all PD medical information. The break will relieve stress and enable you to spend more time enjoying each other’s company.

Keep Your Partner Involved. Care partners may feel that the responsibility for household tasks rests on their shoulders, but there are still many things the person with PD can accomplish. Ensure the partner with PD still participates in activities, such as folding towels, sorting photos or drying dishes. Encourage their involvement in exercise, crafts, audiobooks, walking and swimming. Even better? Find something you can do together.

Stay Compassionate. Laugh Together. Compassion and humor will carry the day. None of us chooses PD. Keep calm and ask ‘how would I want to be treated if the situation were reversed?’ Find the humor in everyday life. Chuckle with the ups and downs that PD brings. If all else fails, put on some music and dance or sing.

Elaine Casavant, R.N., member, PDF People with Parkinson’s Advisory Council, care partner, Lansing, MI.

[+] How Can I Ease Dystonia in Parkinson's Disease?

The Movement Disorders Specialist

Rebecca Gilbert, M.D., Ph.D.While not a cardinal symptom of PD, dystonia is very common. It is defined by sustained twisting movements that are often painful. The most common type is curling or extension of the toes but it can occur anywhere: limbs, back, face or the throat.

Leverage Levodopa. The key to alleviating dystonia is to figure out whether it is caused by or relieved by levodopa. Do this under your doctor’s care. When dystonia occurs in the morning or as levodopa wears off, it may be caused by PD. In this case, it may help to take a small, earlier dose. When dystonia is mixed with dyskinesias, it may be caused by levodopa. In this case, it can help to reduce levodopa and avoid drugs that prolong its effects.

Add New Medications. If levodopa adjustments are not sufficient in easing dystonia, your doctor may recommend additional medications such as amantadine (Symmetrel®), botulinum toxin injections (if dystonia is limited to one body part), muscle relaxants, pain medications or, if dystonia is intractable, deep brain stimulation.

Get Active. There are many effective non-drug strategies that can ease dystonia in PD. Ask your doctor about occupational therapy, physical therapy, yoga and tai chi.

Blair Ford, M.D., Professor of Neurology, Columbia University Medical Center, PDF Scientific Editor, New York, NY.


The Physical Therapist

Laura Marsh, M.D.Don’t let the frustration and discomfort of dystonia stop you from living your life. Learn how to manage your symptoms and keep moving.

Get a Physical Therapy Assessment. Physical therapists have intimate knowledge of where muscles are located and what functions they perform. Your therapist can help you learn which muscles are specifically affected by dystonia, which will help you understand how to better stretch, strengthen and relax. Your therapist can also show you new ways of moving during dystonia episodes to help prevent injury and possibly limit pain.

Try Massage. Depending on the muscles affected, a therapist can teach you self-massage, partner massage, or how to use devices to provide temporary relief. Massage helps make muscles and surrounding tissue more pliable. Some people find that massage after exercise can make future dystonia episodes less severe.

Become Physically Fit. An inactive lifestyle makes PD more challenging. Being sedentary leads to slower and smaller movement, worsening posture and weak muscles. These changes can worsen dystonia and make it difficult to manage. Learn a fitness routine and feel more in control of dystonia, and your life.

Heather J. Cianci, P.T., M.S., G.C.S., founding therapist, Dan Aaron Parkinson's Rehabilitation Center, Good Shepherd Penn Partners, Philadelphia, PA.


The Occupational Therapist

Elaine Casavant, R.N.Even if you cannot eliminate your dystonia, there are things you can do to reduce its impact on your daily life.

Relax. Many people report that being relaxed helps with their dystonia. Find stress-reducing activities that you can incorporate into your daily routine to promote general physical and mental relaxation, or to use on-the-spot when you experience dystonia. Examples include yoga, tai chi, mindfulness/meditation, diaphragmatic breathing, progressive muscle relaxation and guided imagery/visualization.

"Trick" It. Some people use “sensory tricks” involving gestures, positions or touch to temporarily relieve dystonia. Examples include touching the chin for neck dystonia or holding the pen differently for writer’s cramp. While sensory tricks do not work for everyone, you may find it worthwhile to try some out. If you are working with an occupational therapist, ask them for additional ideas that might work for you.

Plan Around It. If you have predictable periods of dystonia, organize your day around it. Plan your “must-do,” more challenging, or social activities for when you do not have dystonia, and take the opportunity to rest or engage in more sedentary activities when you do.

Erin R. Foster, O.T.D., M.SCI., O.T.R./L., Assistant Professor of Occupational Therapy, Neurology and Psychiatry, Washington University School of Medicine, St. Louis, MO.

Back to Contents for Spring 2016 News & Review