When hospitalized, three out of every four people with Parkinson’s disease (PD) do not receive their medications on time. Most develop serious complications as a result. In 2011, the Parkinson’s Foundation launched Aware in Care to help people with Parkinson’s get the best care possible during a hospital stay, and it worked.

Surprisingly, 70% of hospital staff are still unaware of which medications worsen PD motor symptoms or are contraindicated (works against existing medication or makes Parkinson’s symptoms worse) for people with Parkinson’s, and only 25% of hospitals have a protocol in place to contact the patient’s doctor treating their PD upon admission.

The Aware in Care campaign aims to help everyone be better informed ― people with PD, care partners and family, healthcare providers and hospital staff. Since launch, the Parkinson’s Foundation has distributed more than 75,000 Aware in Care kits, providing people with Parkinson’s the tools they need to get the best care. 

Recently, the Parkinson’s Foundation conducted a survey of Aware in Care kit recipients to see how we can improve care for the PD community. More than 95% of responses rated the kit as useful, while almost 60% recommended it to others with Parkinson’s and 39% said they would recommend it.

“The Aware in Care kit is an excellent educational tool that supported my explanations for everyone that crossed my path from EMT to discharge, as none of them knew any Parkinson’s symptom except for shaking,” said a survey respondent.  

“Having the kit adds a level of confidence and a feeling of preparedness should the need arise to go to the hospital or evacuate in an emergency,” said another survey respondent.

Aware in Care kit survey responses also included:

• 80% of kit users felt comfortable telling hospital staff about the importance of receiving medication on time, every time.
• 52% of kit users said that they actually received medications on time, every time. (Statistically, only 25% of people with PD receive medications on time, every time when hospitalized.)  
• 44% of kit users said that staff knew about the hospitalization risks for people with PD
• 48% of kit users felt that hospital staff were willing to learn about Parkinson’s

Among the survey results, one thing was clear: the kits work, but they are not enough. “The kit is great, but hospital staff need to be educated about PD,” said a survey respondent.  

To better address this critical care situation, the Parkinson’s Foundation is excited to announce a new initiative: Aware in Care Ambassadors. We are looking for dedicated volunteers to help us launch this new pilot program to bring Aware in Care into more communities and hospitals around the country.

“We have these lifesaving kits that are helping tens of thousands of people with Parkinson’s, but it’s time we go further and tell our communities and hospitals about them through advocacy,” said Anne Wallis, Parkinson’s Foundation associate director of education.

Aware in Care Ambassadors will train and work together in their communities to educate others about Aware in Care kits and to help the Foundation lay the groundwork for making changes in their local hospitals.

If you or your loved one want to advocate for Parkinson’s or have had a negative hospital experience or a positive experience using the Aware in Care kit and want to get more involved, please apply to be part of the Parkinson's Foundation Aware in Care Ambassador Pilot Program.

Ambassadors will work directly with the Parkinson’s Foundation. We are looking to establish teams in up to four cities and ask that volunteers commit to 10 hours a month. With our help, you will share the Aware in Care kit with your local community and create connections in local hospitals to help change the culture and policies around Parkinson’s care. Together, we can make life better for people with Parkinson’s.

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation.

Every year, the Movement Disorder Society (MDS) hosts an international congress where the top minds in the field share ideas and the latest in research. The 2018 congress took place this October in Hong Kong, China, where we found three particularly promising new Parkinson’s disease (PD) studies that not only provide hope and direction for the future, but also a new avenue you may want to explore with your healthcare provider, right now.

Inject

People tend to think of Parkinson’s as an overall body movement disorder. However, it’s not uncommon for PD to negatively impact the facial muscles, mouth, throat and even vocal cords — which can make it difficult to chew, eat, swallow, and speak with audible volume. A medical procedure where a collagen gel is injected directly into the vocal chords may help. Called vocal fold augmentation, the gel filler (specifically, carboxymethylcellulose) provides a thicker, more resilient cushion for the vocal cords. This is not a new procedure being tested, it’s a treatment that has been used for many years to treat vocal cord atrophy, just not in people with PD.

Inspired by a patient who told his otolaryngologist that he wished something could just be injected in his throat, a clinical trial began using the injected gel in 29 people with PD. Researchers measured results in: overall severity, roughness, breathiness, strain, pitch and loudness. They also measured glottis closure timing (essential in airway protection, so food won’t go down the wrong pipe), and supraglottic constrictions, which involves throat constriction above the vocal chords.

In the one-month follow-up, statistically significant improvements were achieved in overall severity, breathiness, loudness and glottic closure time. People’s eating and swallowing ability remained the same. According to the study authors, the positive effects of the gel will wear off in about three months; thereby, providing proof that the injection worked. If that is indeed the case, their next step involves injecting a calcium hydroxyapatite paste, which the researchers suggest could last up to 18 months – at which time, patients may receive another injection.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about speech, swallowing now or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

Cool Tech

Innovations in personal, portable technology to improve Parkinson’s care, health outcomes and overall management for diseases such as diabetes, epilepsy and asthma, have become a major focus of research. And now, researchers may have identified a technology to help people with certain aspects of PD. Called a Parkinson's Kinetigraph (PKG), this wearable device contains an accelerometer that measures and records information on motor patterns, impulsiveness, periods of sleep and medication response. In a recent study involving 70 people with PD, doctors were asked to provide what their management plan for each person would be, before and after receiving the PKG results.

The clinical findings and the PKG were essentially the same for 80% of participants. However, utilizing the additional PKG data resulted in 24 of the PD participants (34%) receiving changes in their clinical management, including altering their medication dosing, as well as recommending advanced therapies such as apomorphine or deep brain stimulation. For two participants, based on their poor response to therapy recorded by the PKG, their Parkinson's diagnosis was questioned. As to whether or not these PKG-inspired clinical management changes will lead to longer-term improvements in people’s health outcomes and/or quality of life has yet to be determined. However, if it does, this technology could be life-changing.

Learn More

Learn more about wearable technology by visiting Assistive Technology & Devices.

Keto Effect

We all know that following a healthy diet is essential for overall health. But which diet is best for people with Parkinson’s? A recent pilot study sought to compare a low fat, high carbohydrate diet (which is thought to increase dopamine levels in the brain), with the high fat, low carbohydrate ketogenic diet (or ‘keto’ as it’s usually referred) — which may help with diminished mitochondrial energy metabolism. A total of 47 study participants with PD were randomly assigned to follow one of the two diets over an eight-week period. The total calories were identical, as was the total protein content — because protein interferes with levodopa absorption.

Overall, following both diets resulted in improvements in movement and non-movement symptoms. However, the group following the keto diet experienced a greater improvement in non-motor symptoms, as compared to the low fat/high carb diet (41% vs 11%, respectively), including experiencing less urinary problems, pain, fatigue, daytime sleepiness and cognitive impairment. This is particularly significant because non-motor symptoms are less responsive to the medication levodopa. In terms of adverse effects, the most common for those following the low fat/high carb diet was being hungry; and for the keto diet, some experienced a transient increase in PD tremor/rigidity. Both groups also lost weight. Bear in mind that this trial was only 2-months long and there was also no control, or normal diet for comparison. Nonetheless, these study findings suggesting the keto diet may be useful for non-motor symptoms are encouraging.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more by reading Diet & Nutrition or listening to our podcast episode: The Importance of Good Nutrition for People with Parkinson’s.

Have specific questions about nutrition and diet? Call our free Helpline at 1-800-4PD-INFO (473-4636).

Eating well can help you take control of your health. In fact, choosing to eat healthy foods can improve your Parkinson’s disease (PD) symptoms. And some research suggests that sound nutritional choices could have disease-modifying effects, meaning that they could potentially slow PD progression. Changing your eating habits can be a challenge, but there are many small adjustments you can make to your diet that will add up to big benefits. Learning about them is the first step.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about nutrition, hosted by John E. Duda, M.D., from Philadelphia VA Parkinson’s Disease Research, Education & Clinical Center (PADRECC).

Managing PD Symptoms with Diet

Research supports these strategies for managing the following PD symptoms and medication side effects:

Fluctuations. Some people who take levodopa (Sinemet) notice that their medication is less effective when taken with a high-protein meal (a meal including foods like meat, fish and eggs). To address this difficulty, your doctor may recommend taking levodopa 30 minutes before, or 60 minutes after, you eat. That’s because levodopa is absorbed into the digestive system by the same route as protein — when taken together, both compete to be absorbed into the body.

Even after adjusting medication timing, some people still have difficulty absorbing it. This can lead to fluctuations — the levodopa wears off too soon or you experience changes throughout the day between the medicine working well and not having any benefit at all.

A protein-redistribution diet is a popular solution for fluctuations. That means eating most of your daily protein at dinnertime — the last meal of the day — to minimize Sinemet interference during most of the rest of the day. In research studies, fluctuations improved in about 80 percent of people who made this dietary change. People who benefitted most were those who started the regimen early in the course of their PD, before fluctuations became severe.

Iron also can prevent your body from taking up levodopa medications. Do not take iron supplements or multivitamins with iron within two hours of Sinemet.

Daytime sleepiness. Studies show that taking caffeine in two to four cups of coffee a day can improve daytime sleepiness.

Orthostatic hypotension is sustained low blood pressure and dizziness on standing. There are several ways to reduce this symptom:

• Avoid large meals, as they divert blood to the digestive system.
• Increase the amount of salt in your diet.
• Reduce alcohol consumption.
• Drink one and a half to two quarts a day of fluids (six to eight 8-ounce glasses, including water, coffee and other beverages). You can also use a tall cup that has lines to mark your progress and help you keep track throughout the day.

Constipation. If you have less than one bowel movement per day, try to:

• Drink more fluids.
• Consume more fiber, from fruits, vegetables, beans, whole grains, nuts and seeds. Aim for 30-40 grams of fiber per day. Choose foods that have five or more grams of fiber per serving.

Cognitive changes. Many studies have shown that the Mediterranean diet can lower the risk of cognitive impairment for everyone. This diet is rich in whole grains and vegetables. It also includes fish, as well as small servings of low-fat dairy and lean meat, and uses olive oil instead of butter.

Bone health. People with PD often have low blood levels of vitamin D, which is essential for strong bones and may also play a role in warding off depression and cognitive change. Make sure your doctor tests your vitamin D. It can be difficult to get enough vitamin D through diet. Your doctor may recommend supplements.

Malnourishment and weight loss. If your food tastes bland, you’ve probably lost some of your sense of smell — a common PD symptom. To make food more appealing, so that you feel like eating more, try seasoning it with herbs, spices and other flavors. If you or your loved one with PD has experienced significant weight loss, ask your doctor for a referral to a nutritionist. This member of your health care team can offer different strategies for maintaining a healthy weight depending on your age and PD symptoms.

Your Diet and the Microbiome

One of the big stories in medicine is the role of the gut microbiome (the bacteria and other microorganisms that live in the digestive system) in health and disease.

Several studies have found that people with PD have much lower levels of Prevotella species of bacteria — a type thought to be good for maintaining gut health. They also have higher levels of bacteria associated with inflammation, which can be harmful.

How does that relate to your diet? What you eat affects which bacteria can thrive in your digestive system. Studies have shown that eating a Mediterranean, or whole-food plant-based diet, creates an environment where Prevotella and other healthy bacteria can flourish. Fiber and other components of whole plant foods and sometimes referred to as ‘prebiotics’ because they feed the “good” bacteria in the gut, which may be beneficial for people with PD.

Can eating well alter the course of PD?

Scientists know a lot about the molecular changes that underlie Parkinson’s. You may have heard of alpha-synuclein, the protein that forms clumps in brain cells, oxidative stress, mitochondrial dysfunction, and inflammation. The search is intense for therapies that can stop or reverse these processes. Can nutrition or dietary choices do anything to change them or alter the course of PD?

Some laboratory and animal research suggest that diet could have an effect, especially plant-based foods like fruits, vegetables, legumes, nuts and seeds. Every plant-based food contains hundreds of chemicals called phytochemicals. These are not nutrients, but substances that may, alone or in combination, affect many of the processes thought to be involved in PD including oxidation, chronic inflammation, protein aggregation and mitochondrial dysfunction.

Phytochemicals have not been proven to change disease progression in people with PD, but neither is there typically any harm in eating a diet that includes whole, unprocessed plants. This diet has proven benefits for preventing heart and vascular disease and can reduce PD symptoms, like constipation and risk of cognitive change. 

The best way to increase anti-oxidants and anti-inflammatory compounds in your blood and brain is by eating plants — all the different parts of them. Choose fresh, or frozen whole foods and avoid boxed or canned foods as much as possible. There is no one food that is best — aim for variety every day. And be sure to include nuts and seeds. Sprinkling a tablespoon of ground flax seeds on other foods is a simple way to improve your diet.

Healthy Eating with PD

Eating a whole food, plant-based diet, often called a Mediterranean diet, can help you live well with PD. Eat what you need to eat to be happy — but also eat more of the food that is good for your health.

If you have Parkinson’s, every healthy lifestyle change can help. Choosing to eat well also leads to a feeling of empowerment that helps you in your daily life with PD. While it can be challenging to eat better, most people make minor diet changes gradually that become major changes over time. Always consult your physician before making major changes.

To learn more about nutrition and Parkinson’s, visit Parkinson.org/Nutrition.

Learn more by tuning in to our podcast episodes “The Role of the Microbiome in PD: Part Two” and “Nutrition Advice - Part 2.”

Getting regular exercise is essential to managing Parkinson’s disease (PD). It is well established that exercise promotes aerobic conditioning, strength, balance, flexibility and mobility, which can substantially improve overall quality of life.

Multiple clinical trials have demonstrated that aerobic exercise in particular, can enhance cognitive functioning, such as learning, thinking, remembering and problem solving. Further, a 2019 PD clinical trial called Park-in-Shape, investigating the effectiveness of remotely supervised aerobic exercise (using a stationary bike) resulted in a reduction of PD movement symptoms.

We know brain heath and cardiovascular fitness are connected. What we don’t know is how and where in the brain aerobic exercise is enhancing cognitive functions and reducing motor symptoms for people with PD.

A study recently published in the Annals of Neurology, “Aerobic exercise alters brain function and structure in Parkinson’s disease: A randomized controlled trial” (Johansson et al., 2022) investigated how aerobic exercise may influence PD-related functional and structural changes in the brain. The study also explored the effects of aerobic exercise on the substantia nigra, which helps the brain produce with dopamine. Movement disorders specialist Bastiaan R. Bloem, MD, PhD, from Nijmegen Parkinson Center — a Parkinson’s Foundation Center of Excellence ­— is one of the study’s authors.

The study further drew upon the study authors’ previous Park-in-Shape research, which was a single-center, six-month trial of 130 sedentary people with PD, ages 30–75 years, who experienced mild symptoms, and were either unmedicated or on stable dopaminergic medication.

Half of the participants were randomly assigned to ride a stationary bike (equipped with gaming feature) at home for 30- to 40-minute sessions at 50 to 80 percent of their ideal target heart rate. The other half (the control group) were assigned to do 30 minutes of stretching, flexibility and relaxation exercises. Both groups exercised in their own homes three times per week for 30 to 45 minutes over six months. Both groups received a motivational app and remote supervision.

To assess potential progress, researchers used a rating scale that measures PD symptoms (called the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS)). Participants were assessed at the beginning of the study and at the six-month follow-up to provide a snapshot of disease severity. Additionally, there was a subset from this trial (25 people from the bike group and 31 from the stretching group) who underwent:

1. Functional MRIs to measure which parts of the brain are more active by measuring blood flow changes in the brain
2. Resting state MRIs for anatomical structure comparisons
3. Oculomotor (eye) movement cognitive control tests

Results

At the six-month follow-up:

• The aerobic exercise group had a shift in balance of connectivity from the sensory motor region of the cortex (the outermost layer of the brain) to the putamen region of the brain. The balance in connectivity was shifted in favor of connections between sensory motor cortex to the front part of putamen instead to the back part of putamen.
• The brain atrophy (brain shrinkage) worsened with time in the stretching group.
• The aerobic exercise group had lower brain atrophy (less brain shrinkage) compared to the stretching group.
• No change in substantia nigra area was found in either the aerobic nor the stretching group.
• The aerobic exercise group experienced improved cognitive control compared to the stretching group.
• The aerobic exercise group had a significantly larger change in functional connectivity within the right frontoparietal network, a cognitive control network, located at the intersection of the frontal (the most front area) and parietal (the upper back area) section of the brain.

What does this mean?

For all people, physical inactivity is a leading modifiable risk factor for cognitive decline, diminished mobility, and reduced quality of life. For people with PD, this study additionally suggests that aerobic exercise, but not stretching, can impart measurable protections and improvements in PD progression, both physically and cognitively.

Specifically, the aerobic exercise group had a a relative posterior-to-anterior shift in sensorimotor cortex connectivity to putamen. What does this mean? The putamen is involved in learning and motor control/voluntary movement. Generally with PD, the posterior (back part of the) putamen is negatively affected by dopamine depletion, whereas the anterior (front part of the) putamen is relatively spared, allowing for more available dopamine. It has been reported that parts of cortex (the outermost layer of the brain), that normally communicate with the posterior putamen in healthy individuals rely more on the anterior putamen in people with PD. This study suggests that the aerobic exercise, unlike stretching, led to a functional and structural change in the balance of connectivity towards anterior putamen of the brain of people with PD.

That said, the number of PD participants in this study was relatively small. Further research, involving comparisons between people with PD and those without PD and new brain connectivity needs to be conducted.

Bottom line? Exercise is essential for people with Parkinson’s. According to the Parkinson’s Foundation Parkinson’s Outcomes Project, increasing physical activity to at least 2.5 hours a week can slow decline in quality of life. Research dedicated to better understanding the positive impact of exercise and Parkinson’s ultimately helps us guide potential new treatments and empower the Parkinson’s community.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and aerobic exercise by visitng the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636).

• Podcast Episode 129: Using the New Parkinson’s Exercise Recommendations as Part of Your Treatment Plan
• New Exercise Recommendations for the Parkinson’s Community and Exercise Professionals (blog)
• Episode 3: The Benefits of Exercise for People with Parkinson's Parkinson’s Exercise Recommendations
• Professional Education: Exercise Professionals

There are many factors to consider when a trip to the hospital is necessary during the COVID-19 pandemic. One important suggestion we have heard from our Parkinson’s disease (PD) community is to make sure to update your Advanced Directives if you have not already. This includes your health care power of attorney (or health care surrogate).

Even though it can be daunting, it is still important to go to the hospital if you do have a serious fall, a heart attack or another incident that warrants care. If you come prepared and advocate for yourself, you can have a successful hospitalization.

About Advanced Directives

Advanced Directives consist of two components:

1. Designation of Healthcare Surrogate (or Proxy)

A document where you name someone as a healthcare surrogate to make healthcare decisions on your behalf should you become incapacitated or unable to communicate. This could apply to a simple procedure where you receive anesthesia, like dental surgery, to more serious medical emergencies or hospitalizations, such as a coma.

2. Living Will

Document that provides directives, or your official instructions, relating to end of life decisions. While this can differ from state to state, a living will can only come into effect in the event that you are terminally ill or in a persistent vegetative state (showing no signs of higher brain function and only alive with medical intervention), and two doctors determine no reasonable medical probability of recovery.

Steps to Update Your Advanced Directives

1. Find the printable advanced directives here for your state (provided by AARP). Every state has its own paperwork.
    
2. Print and complete your state’s form. Some states require a notary public, a professional appointed by the state government to be an impartial witness for official documents, to notarize your advanced directives. If this is the case, you can usually find a free notary public at a local bank. All states require witnesses present to sign the form.
    
3. Keep several copies in your Aware in Care kit. Make sure your loved ones and/or next of kin has a copy. If you live alone, you can choose a trusted person to be your health care agent to ensure access to your directives. If you do not have someone to entrust with your directives, you should still fill out the form and keep several physical and digital copies with you.

Steps to Further Ensure Your Safety in The Hospital

• Now more than ever, it is important to bring all your Parkinson’s medications in their original bottle when going to the hospital, as a loved one may not be able to bring them to you if your medications are not in the hospital pharmacy (on formulary).
• Update your Medication Form and print copies to include in your kit.
• If possible, obtain your doctor’s signature for the Hospitalization During COVID-19 Letter, which should also be kept in your kit.
• Every hospital has a different policy around visitors during COVID-19, which includes care partners. Ask your local hospital ahead of time if you will be able to have an in-person advocate with you. Check multiple hospitals in your area — they might each have different policies.

Advice for Care Partners

Hospital staff may or may not take the initiative to contact your family while you are hospitalized, so immediately advocate for ongoing communication.

• Using the phone of the hospitalized person with Parkinson’s for video calls like Facetime, Skype or Zoom is HIPAA compliant, but requires the person with Parkinson’s to be conscious and coherent, which may or may not be the case.
• In addition to phone calls from the hospital, Zoom is typically HIPAA compliant from within the hospital, so a care partner can request updates via zoom video call.
• It is appropriate to contact the hospital to check in on your loved one. Some health professionals recommend calling in once a shift to have up-to-date information.

Learn More

Learn more about Parkinson’s, COVID-19 and hospitalization in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

• Getting Organized
• Parkinson.org/COVID-19

Visit Parkinson.org/AwareinCare to order your Aware in Care kit and download essential hospitalization resources.  

Palliative care is a holistic, team-based approach to managing chronic health conditions, such as Parkinson’s disease (PD). Palliative care specialists champion quality of life and can be central to navigating the challenges of PD from initial diagnosis, onward. Most insurance plans cover all or part of palliative care treatment costs.

The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring the role of palliative care in Advanced PD, hosted by Janis M. Miyasaki, MD, MEd, FRCPC, FAAN, Director of the Parkinson and Movement Disorders Program at University of Alberta. Regarded as the founder of PD palliative care, Dr. Miyasaki leads a movement disorders group comprising several neurologists, a neurosurgeon, neuropsychiatrist and geriatrician, and a dedicated interdisciplinary team.

What is Palliative Care?

It’s important to distinguish that palliative care is not hospice or end-of-life care. Palliative care practitioners help patients focus on living well now by actively treating all aspects of a disease.

Palliative care:

• Improves life
• Provides pain and symptom relief
• Integrates psychological and spiritual aspects of patient care
• Supports patients and families; when caregivers do well, so do people with PD
• Addresses needs through multiple disciplines
• Begins early in the course of illness
• Affirms life and regards dying as a normal process
• Neither hastens or postpones death

The best palliative care emphasizes well-being. It also acknowledges difficult feelings, such as anger and despair, that can come with a Parkinson’s diagnosis. Addressing these emotions can help people with PD cope with the often-challenging job of managing day-to-day physical symptoms.

The Care Team Role

A person’s Parkinson’s disease journey often begins in a doctor or neurologist’s office. But addressing Parkinson’s changing needs, whether physical, emotional, social or spiritual, takes a team. Specialists can include doctors, nurses, social workers, chaplains, pharmacists, nutritionists and counselors.

People with PD can also struggle with existential distress. Different from depression, these hopeless feelings stem from trying to make sense of overwhelming events, such as a Parkinson’s disease diagnosis. It’s important to address these emotions. A psychologist or an experienced spiritual care practitioner can help.

Managing Pain

As Parkinson’s advances, coping with pain can pose another challenge. Always consult your physician for pain management advice. One of the first lines of PD pain treatment is levodopa, a dopamine agonist. It treats motor symptoms, including rigidity and dystonia (sustained or repetitive muscle twisting, spasms or cramps), associated with PD pain. Range-of-motion exercises, alone or with assistance, also offer relief. A doctor or experienced licensed physical therapist can recommend appropriate exercises.

If levodopa and exercise aren’t adequately addressing pain, talk to your doctor about injectable botulinum toxin A (BOTOX) treatment. It can alleviate dystonia by targeting and weakening overactive muscles.

When all else fails, ask your physician about prescription pain medication. Due to drowsiness, confusion and other side effects, pain medication is often considered last.

Reducing Side Effects       

It’s important to take any medications as prescribed. Skipping doses or waiting until the pain is unbearable can require larger doses of medication to treat symptoms, resulting in increased side effects.

Constipation, another unpleasant pain medication side effect, can lead to more problems, including stomach and back pain, difficulty absorbing medication and hemorrhoids.

Diet can help curtail constipation. It is important to:

• Drink 64 ounces of water each day
• Eat a well-balanced, high-fiber diet including fruit, vegetables and whole grains
• Include dried fruit such as figs, dates
• Consume more beans and less meat
• Avoid white bread, rice or pasta    

Consult your doctor about constipation treatment, which can include daily exercise, abdominal massage and/or over-the-counter and prescription therapies. Read the Parkinson’s Foundation publication Constipation and Other Gastrointestinal Problems in PD for constipation solutions to discuss with your doctor.

Planning Advance Care

Palliative care includes planning for the future; a step that requires careful, thoughtful decisions. Because forms can be complicated and confusing, it is important to start the planning process early.

Aging With Dignity’s Five Wishes document can help express:

1. Who makes future care decisions
2. Desired medical care
3. Comfort level
4. Preferred treatment
5. Information to share with loved ones

Conclusion

Palliative care fosters comprehensive Parkinson’s disease management. Initial pain management approaches include non-medication therapies and range-of-motion exercises to alleviate PD symptoms. Medication used as prescribed can also minimize pain. Identifying values and consulting a psychologist or spiritual care advisor can lessen existential distress. And advance care plans can guide future healthcare in accordance with your wishes.

Have questions about Parkinson’s disease or anything you read here? Call our Helpline at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org.

Marijuana and Parkinson’s disease (PD) is a hot topic. Watch our newest video, Neuro Talks, where James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer, explains what the PD community should know about marijuana.

What are the risks of marijuana for a person with PD? Can it help with symptoms? What is the Parkinson’s Foundation doing to learn more? Find out in this four-minute video:

For more information, call the Parkinson’s Foundation Helpline today at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org with your Parkinson’s questions in English or Spanish.

A person with Parkinson’s disease (PD) may experience visual, cognitive and mobility challenges as symptoms progress or as side effects from certain medications. Compromised vision can make it difficult to distinguish objects, perceive depth and safely maneuver a space while cognitive changes may make previously automated tasks (such as walking) more cumbersome.

Visual cues, however, can help a person with PD stay on track. See how members of our PD community have embraced color to train their brains:

Comfort in the Home

Our surroundings are important to us and contribute to our overall mood. Soft, warm colors are calming. Incorporate tranquil shades of orange, brown, red, yellow, orange and yellow-green to make large spaces feel cozier.

Flooring Around the Home

Carpet

A solid-color carpet is best. Solid colors emphasize boundaries between the wall and the floor and any changes in surface level. Large patterns or multiple colors can be distracting and make it more difficult to maneuver across a space. Be particularly cautious and try to avoid using patterned carpets and rugs on steps and stairways.

Stairs

Apply brightly colored tape on the top and bottom steps to signal the beginning and end of the steps.

Doorways and Hallways

Placing colored tape lines in a doorway can make it easier for people with Parkinson’s who have difficulty moving and experiencing freezing episodes. The tape provides a visual cue for where to place each foot when moving through the door. Taped lines can be placed down a hallway or in other places where freezing often occurs.

Bathroom Safety

Consider color contrast when installing grab bars and other safety items. For example, put a dark grab bar on a white wall. Also consider adequate lighting with few darkened or shadowy spaces.

Sitting

Changes in the brain can make it difficult for a person with Parkinson’s to determine proper body alignment when moving to sit down in a chair. This can result in the person attempting to sit down before his or her body is close enough or in proper position to sit safely. Marking the floor with a taped “x” provides the proper cue for where a person’s foot needs to be before sitting.

Maintaining Independence

Dressing

Choices allow a person to maintain their self-esteem and dignity.

Allow the person with Parkinson’s to provide as much help as he or she can with dressing. Even if physical or thinking changes prevent a person from accomplishing this on their own, it is important to offer choices. For example, asking whether they would prefer a red shirt or blue shirt can encourage participation.

Cognitive

Keep things simple to avoid confusion. Limiting options can help streamline an activity.

Remotes that only offer the “off”, “on”, “volume” and “channel” options can restore self-sufficiency when watching TV. Consider covering remote control buttons with tape to help minimize visual distractions and streamline productivity.

Overcoming Freezing

Use a mobile laser device that creates a colored line for you to step over. To combat freezing of gait, there are canes and walkers available that project a laser line to help cue steps.

Eating and Food

Utensils

Due to vision changes, contrast sensitivity in the eye makes it hard to discern objects that are similar in color.

People with Parkinson’s may have difficulty if the color of the food is the same color as the dish. Consider using dark dishes when serving light colored foods and light dishes when serving dark foods.

You can also use contrasting placemats under the person’s dish to outline the edges of his or her bowl or plate.

Nutrition

Incorporate foods high in antioxidants (which are important for overall brain health) into your diet. Eat brightly colored and dark fruits and vegetables. Cranberries, strawberries, oranges, beets, cherries, broccoli, blueberries and red kidney beans all deliver high concentrations of vitamins, minerals and antioxidants.

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation’s.

People with Parkinson’s disease (PD) commonly suffer from tremors and other movement symptoms, such as slowness and stiffness, caused by the loss of dopamine-producing nerve cells in an area of the brain called the substantia nigra. The cornerstone therapy for reducing these symptoms is the drug, levodopa. Often referred to as simply L-dopa, this drug works by helping to replenish the brain’s supply of dopamine. However, with long-term use of L-dopa, upwards of half of people with PD can develop levodopa-induced dyskinesia (LID) — a side effect that causes involuntary rapid jerking and twisting, or slow and extended muscle spasms. The severity of these side effects can range from bothersome to incapacitating.

A recently published study, titled, “Safety and tolerability of IRL790 in Parkinson’s disease with levodopa-induced dyskinesia—a phase 1b trial” (Svenningsson et al., 2018), investigated an experimental small molecule compound called, IRL790, which blocks a dopamine receptor called D3. Why D3? Studies in both animals and people with PD have found that long-term treatment with levodopa results in higher levels of D3 in the brain, which is believed to be what’s causing the LID side effects. Conducted at three university hospital outpatient clinics in Sweden, this was a randomized, double‐blind, placebo‐controlled study.

Ranging in age from 50 to 85, a total of 15 study participants with PD (9 men, 6 women) swallowed one oral capsule twice a day for four weeks of either IRL790 (11 people) or a placebo (4 people). All PD medications, including levodopa, were unchanged for at least 30 days and throughout the study period. Five clinic visits were required, with a follow-up phone call on day 21. A final follow-up visit was conducted within 10 days after the last dose. The starting dose prescribed for all participants was 10 mg (twice a day), with individual dose adjustments allowed up to a maximum of 40 mg twice a day, as needed. Doses were adjusted up to day 14 of the study, after which the dose remained stable.

The primary objective of this study was to investigate the safety and tolerability of the new drug, IRL790, including measuring frequency, seriousness and intensity of adverse events, physical examination, electrocardiogram (ECG) recordings, vital signs and safety laboratory measurements. To record movement data, i.e., dyskinesia and bradykinesia (slowness of movement), participants wore a kinetigraph device attached to their right or left wrist (their parkinsonian dominant side) for seven days priors to the study to establish a baseline, and then wore the device again for the last seven days of the trial.

Results

• A total of 13 participants completed the study. Two of the participants were withdrawn from the study due to possible adverse events associated with drug (one due to difficulty breathing and dizziness, and the other due to edema and redness of the feet).
• A total of 62 adverse events was reported by 14 participants (93.3%) — none were reported as serious and most could be mitigated by dose adjustments. All participants treated with a placebo experienced at least one adverse event.
• The average stable IRL790 dose was 18 mg daily.
• Among participants treated with IRL790, 55.5% were assessed as having an improved global clinical condition.
• Participants were reported to be in a steady state for plasma drug concentration after taking IRL790 for 14 days.
• Participants receiving IRL790 experienced a reduction in dyskinesia, without a reduction in the positive effects of levodopa.

What Does This Mean?

In 1961, L-dopa was hailed for its "miraculous" effect in people with PD (Hornykiewicz, 2010). However, by 1971 there were already studies investigating whether levodopa  was causing dyskinesias (Mones, Elizan, & Siegel, 1971). Today, we know that dyskinesia is a side effect associated with long-term use of L-dopa. Long term treatment with L-dopa results in making too much of the dopamine receptor called D3. While one may think that having a lot of a dopamine receptors sounds like a good thing for PD, in this case, it’s not. D3 is believed to produce the unwanted side effect of LID. The Svenningsson et al (2018) study supports this by demonstrating that by specifically blocking the D3 with the novel drug, IRL790, the negative LID symptoms could be significantly reduced without compromising the positive effects of L-dopa.

More than half of the study participants experienced less dyskinesia — and with no serious side effects. That’s not just encouraging, that’s groundbreaking. IRL790 may have the potential to become a game-changer in the treatment of PD. Of course, more research still needs to be done, as this was a phase 1 trial conducted in a small group of people. Researchers are already actively recruiting study participants for a Phase 2 clinical trial to help establish optimal dosing and are hoping to recruit 74 people with PD to participate (ClinicalTrials.gov, 2018). 

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about dyskinesia and PD medication by vising the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Expert Briefings: PD Medications: What’s New?
• Dyskinesia
• Bradyknesia (Slowness of Movement) 

This Parkinson’s Awareness Month, we want to hear your #KeyToPD.

Here are the Foundation’s top five keys to living a better life with Parkinson’s:

• ​Find a neurologist. Regular neurologist care can save the lives of thousands of people each year. Neurologist care saves about 4,600 lives each year in the U.S. alone.
• ​Get Answers. Call our 1-800-4PD-INFO (473-4636) Helpline or visit Parkinson.org to get your Parkinson's questions answered — at any stage of PD.
• Put together a care team. People living with PD who seek expert care have better outcomes — complication risks are lower, they enjoy better quality and longer lives.
• Establish an exercise routine. Increasing physical activity to at least 2.5 hours a week can slow decline in quality of life for people with PD.
• Get moving and socialize. Meet others with PD and families living in your area at your nearest Moving Day, A Walk for Parkinson's. Register at MovingDayWalk.org.