While it’s known as a movement disorder, people who live with Parkinson’s disease (PD) experience many non-movement, or non-motor, symptoms too – though not all of them are related to the disease. Peripheral neuropathy, or nervous system damage, fatigue and GI issues are common PD challenges that can also stem from other causes. Working with your doctor to identify the source of your symptoms is key to effective treatment.

This article is based on the Parkinson’s Foundation Expert Briefing series; Symptom Management: Is it PD, Medication or Aging? Exploring Non-motor Symptoms: Neuropathy, Fatigue, GI Issues presented by Ellen Walter, Nurse Practitioner, Cleveland Clinic, and Steven Swank, Clinical Pharmacist, University of Kansas Medical Center. Both organizations are Parkinson’s Foundation Centers of Excellence.

Causes of neuropathy, fatigue and impaired gastrointestinal (GI) function during the course of PD can be wide-ranging – and include everything from normal aging to medication side effects.

With any health challenge, it’s recommended to log symptoms. This can help your doctor rule out potential causes. When did symptoms start? Are there any patterns?  

Neuropathy

Peripheral neuropathy describes damage to the nerves that carry messages between the brain and spinal cord. Although they may not know it by name, people who live with PD are more likely than others to experience peripheral neuropathy. It can cause pain, numbness, tingling or muscle weakness, or greater sensitivity in certain areas.

This condition can also cause loss of coordination or sometimes make people feel as if they're wearing gloves or socks. Due to increased risk for walking problems and falls, a falls risk assessment is critical for anyone living with Parkinson’s who experiences peripheral neuropathy in their legs.

Possible Causes

While there can be a connection to peripheral neuropathy and Parkinson’s medications, research shows people with PD can have neuropathy even before beginning treatment.

Other types of neuropathy are also more common in PD, including:

• neurogenic orthostatic hypotension –is a sharp drop in blood pressure that happens when a person gets up from bed or from a chair, causing dizziness or even loss of consciousness
• gastroparesis, a slowed down or delayed emptying of the gut
• damage to nerves in the bladder can cause urinary incontinence

Neuropathy can also be related to more serious issues, such as alcoholism, diabetes, thyroid or kidney disease and even cancer. Let your doctor know right away if you experience neuropathy with any red flag symptoms, including:

• bone pain
• weakness
• frequent unexplained infections

Early diagnosis and treatment can prevent permanent damage.

Medication-related Neuropathy

Some medications can also cause neuropathy or vitamin deficiencies that lead to neuropathy. Proton pump inhibitor (PPI) medications such as esomeprazole (Nexium) and omeprazole (Prilosec) block stomach acids and can also lead to vitamin deficiencies that spur neuropathy.

The diabetes medication metformin can lower vitamin B12 levels which can also cause neuropathy. People taking it should have their B12 levels checked regularly.

Though it’s not completely understood how it happens, long-term carbidopa/levodopa use can increase neuropathy too. Duopa carbidopa/levodopa intestinal gel therapy is more likely to cause peripheral neuropathy than oral tablets or capsules.

Other therapies that can cause neuropathy include:

• Some chemotherapy treatments
• Some immune suppressants
• Nucleoside reverse transcriptase inhibitors (NRTIs), HIV medication
• Amiodarone
• Colchicine
• Disulfiram
• Hydralazine
• Hydroxychloroquine
• Metronidazole
• Nitrofurantoin
• Phenytoin

Similar Conditions

Restless leg syndrome and peripheral neuropathy can both cause an uncomfortable sensation in the legs. Sometimes people will say they have restless leg syndrome but actually what they're describing is neuropathy.

Neuropathy pain can sometimes be mistaken for arthritis, too. Neuropathy is often described as a burning, prickly, sharp or throbbing pain. Arthritis can also be described as throbbing pain, but it’s often accompanied by tenderness and joint stiffness

A common misconception is that deep brain stimulation (DBS) – a procedure where electrodes are implanted in the brain and block nerve signals that impair movement by way of a pulse generator – can cause peripheral neuropathy. It doesn’t, but tingling can be a stimulation side effect. An in-office device adjustment can usually fix this.

Treatment

Neuropathy treatment requires identifying the underlying causes. When vitamin deficiency is the cause, supplementation can lessen neuropathy and stop nerve damage.

Medications that can alleviate nerve pain but don’t stop nerve damage include:

• Selective serotonin and norepinephrine reuptake inhibitor (SNRI) antidepressants duloxetine and venlafaxine.
• Tricyclic antidepressants, such as nortriptyline.
• Topical treatments including capsaicin cream and lidocaine cream or patch.
• Onabotulinum toxin injections, such as BOTOX®.

Percutaneous electric nerve stimulation is a nonmedication therapy to help people with urinary incontinence due to neuropathy.

Fatigue

Excessive daytime sleepiness describes someone who falls asleep mid-conversation. Fatigue is different. Better explained as extreme exhaustion, about 50 percent of people with PD live with mental or physical fatigue. It can start early in Parkinson’s and persist throughout the course of the disease.

Possible Causes

The chemical changes that cause PD movement problems can cause fatigue. PD dyskinesias, involuntary dance-like movements, can leave those who experience it exhausted, too.

Left untreated, common PD sleep disorders can cause fatigue. Vitamin deficiencies, lifestyle habits, including a lack of regular exercise, alcohol use, poor nutrition and other diseases or disorders can also cause fatigue.

Watch for sudden onset of other symptoms associated with fatigue, including:

• Shortness of breath
• Weight loss
• Signs of abnormal bleeding
• Fever
• Enlarged lymph nodes
• Irregular heart rhythm

While not necessarily connected to fatigue, PD dopamine agonist medications such as pramipexole, ropinirole and apomorphine can cause sleepiness and sleep attacks. People with PD who drive or operate machine and take such medications should pull over if they feel tired. Rest or have someone else drive.

Medication-related Fatigue

Some medicines and PD treatments can cause fatigue, too. These include:

• Medications that treat depression, a common PD symptom
• Benzodiazepines used to treat anxiety
• Over-the-counter sleep and allergy medications, such as diphenhydramine
• Beta blockers, such as metoprolol or carvedilol, sometimes used for tremor-control
• Neuropathy medications
• Blood-pressure medications
• Dopamine agonists apomorphine, pramipexole, ropinirole and rotigotine
• Levodopa
• Amantadine

Treatment

Treating fatigue can sometimes be as simple as making lifestyle adjustments, including eating healthier, following a regular sleep schedule and getting daily exercise.

It’s also important in Parkinson’s to limit motor fluctuations, or “off” times. Work with your doctor to ensure your PD medications are lasting as long as they should – you may need a dose or timing adjustment.

One medication that has been shown to help with PD-related fatigue is rasagiline. There is insufficient evidence for other medications, such as methylphenidate or modafinil.

GI Issues

About 80% of people with Parkinson's experience GI issues. These can occur throughout the gastrointestinal tract, from drooling and swallowing problems to intestinal blockage and constipation, one of PD’s most common GI symptoms.

Though constipation is often defined as difficulty emptying the bowels or small, hard stool, watery stool can be a sign of severe constipation or impaction. Potentially life-threatening, impaction can lead to bowel obstruction or a tear in the colon.

Constipation can cause a bloated or full feeling, acid reflux, nausea or cramping. A build-up of hard stool can also cause vomiting.

Possible Causes

Many who live with PD experience constipation long before they are diagnosed. It can stem from many causes, including the neuropathy-related delayed emptying of the gut mentioned earlier, gastroparesis. Gastroparesis slows and weakens stomach muscle contractions, delaying digestion.

PD-related movement difficulties may make it more difficult to travel to the bathroom, so someone may limit their fluid intake, increasing dehydration and constipation. Movement difficulties may also limit exercise, which can help alleviate constipation.

As people age, GI issues are more common. Diabetes, thyroid disease and others can also slow gastric emptying. Damage to the vagus nerve from childbirth or surgery can cause constipation, too.

It’s important to call your doctor right away should you experience any red flag symptoms, including:

• Frequent, persistent abdominal pain
• Blood in your stool
• Watery stool
• Unintentional weight loss
• Fever

Medication-related GI Issues

Constipation, nausea and vomiting are common medication side effects. Diuretics, or water pills, such as furosemide (Lasix) can pull water out of the body, causing constipation. Doctors often avoid prescribing older people diuretic or dehydrating medications as they already face increased dehydration risks.

Used to treat blood pressure, diuretic hydrochlorothiazide (HCTZ) can also cause constipation and is associated with a drug interaction with PD medicine amantadine.

Anticholinergic medications are those that can slow gut movement. They include oxybutinin and over-the-counter diphenhydramine.

PD-related gastroparesis can also impact how medications are absorbed. Most medications taken by mouth are absorbed in the stomach or further below it in the small intestine. People with decreased gut motility may find PD medications such as carbidopa/levodopa take longer to take effect or seem less effective.

Stomach acid-blocking proton pump inhibitors (PPIs) such as esomeprazole (Nexium) can increase the risk of a condition called small intestinal bacteria overgrowth (SIBO), experienced by up to 50 percent of people with Parkinson’s. SIBO can also cause levodopa and other medications to take longer to work, wear off more quickly or not work at all, because they must travel to, and through, the stomach to be effective.

Some gut bacteria, such as enterococcus faecalis, can actually breakdown levodopa itself. H. pylori, a type of stomach infection, can also decrease levodopa absorption. Antibiotics can help  with SIBO and H. pylori.

Treatments

Your doctor can help discover and treat GI issues and they might refer you to a gastroenterologist, a doctor specializing in GI issues.

Eating fiber-rich foods and decreasing starchy ones, drinking more fluids and increasing exercise can all minimize constipation. Dopaminergic medications – those that replenishing or mimic dopamine in the brain – apomorphine injections, BOTOX® injections and biofeedback techniques can also alleviate the increased straining, pain and incomplete bowel evacuation common in Parkinson’s.

Treatment Tips

• Bring a complete list of current medications, including any over-the-counter medications or supplements,  to every doctor’s appointment. Also include a symptom log. Remember to describe what you are feeling, rather than using medical terms. This can help your healthcare team differentiate conditions and determine treatment.
• Choosing one pharmacy to fill all of your medications is also helpful, as the pharmacy can flag any drug interactions.
• Order or download the Aware in Care hospital kit. This can help your healthcare team understand what prescription medications you are taking, the importance of timing your medication and other vital information.

For more information, listen to our podcast episode “Neuropathy: A Non-motor Symptom of Parkinson’s Disease.”

Nearly one million Americans are living with Parkinson’s disease (PD). With Parkinson’s, the earlier you detect the disease and receive a diagnosis, the sooner you can begin living a better quality of life. Below we answer your top Parkinson’s questions: 

1. What is Parkinson’s?

Parkinson's disease is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra. Symptoms generally develop slowly over years. Although there is no cure, treatment options vary and are tailored to each person’s individual symptoms.

Learn more: What Is Parkinson’s

2. What are the early signs of Parkinson’s?

There are 10 early signs of Parkinson's. No single one of these signs means that you should worry, but if you have more than one, consider speaking with your doctor. Early signs include:

• Tremor: A slight shaking or tremor in your finger, thumb, hand or chin.
• Small Handwriting: A change in handwriting, such as smaller letter sizes and crowding words together — this is called micrographia.
• Loss of Smell: More trouble smelling foods like bananas, dill pickles or licorice.
• Trouble Sleeping: Thrashing around in bed or acting out dreams when you are deeply asleep.
• Trouble Moving or Walking: Stiffness in your body, arms or legs; arms don’t swing when you walk.

Read all the early signs of Parkinson’s: 10 Early Signs of Parkinson's Disease

3. What are the stages of Parkinson’s?

There are typical patterns of progression in Parkinson’s defined in stages.

Stage One: Initial stage where mild symptoms generally do not interfere with daily activities. Tremor and other movement symptoms occur on one side of the body only. Changes in posture, walking and facial expressions can occur.

Stage Two: Symptoms start getting worse. Tremor, rigidity and other movement symptoms affect both sides of the body. Walking problems and poor posture may be apparent. Daily tasks are more difficult and lengthy.

Stage Three: Considered mid-stage, loss of balance, slowness of movements and falls become more common. The person is still fully independent, but symptoms significantly impair activities such as dressing and eating.

Read all the stages of Parkinson’s: Stages of Parkinson’s

4. What are the symptoms of Parkinson’s?

Parkinson’s is called a movement disorder because of the tremors, slowing and stiffening movements it can cause — known as movement symptoms. Continue reading for more types of movement symptoms.

Most people develop other symptoms related to Parkinson's that are collectively known as non-motor symptoms. They can include anxiety, depression, sleep disorders and weight management issues.

Read more about Movement Symptoms and Non-Movement Symptoms.

5. Is vertigo a sign or symptoms of Parkinson’s?

Yes. Vertigo and dizziness are commonly reported symptoms in people with Parkinson’s. Most experts agree that dizziness and vertigo can be broadly defined as the sensation of spinning or whirling, and the sensation can be associated with balance problems.

Read more about Vertigo and Dizziness.

6. Is Parkinson’s genetic?

We do not know exactly what causes Parkinson's, but scientists believe that a combination of genetic and environmental factors are the cause. Genetics cause about 10% to 15% of all Parkinson's.

Understanding the connection between Parkinson's and genetics can help us understand how the disease develops and ultimately how it can be treated or cured. This is why studies like the Parkinson's Foundation PD GENEration study that is linking genetics to Parkinson's are essential.

• Read more about Genetics and Parkinson’s.
• Enroll for PD GENEration.

We are here for you. Call the Parkinson's Foundation Helpline 1.800.4PD.INFO (1-800-473-4636) for answers to your Parkinson’s questions.

Did you know our books are now available on Kindle? Read all 12 of our books using your Kindle or Kindle app on your tablet. Every book is written and designed to make life a little easier for people with Parkinson’s disease (PD), caregivers and family members.

Check out all of our books available on Kindle now:

 These books in Spanish are also available on Kindle:

Download our Books on Kindle Now!

More Ways to Access Our Free Resources

Visit Parkinson.org/Library

All our books and fact sheets are always available at Parkinson.org/Library, where you can download them or read them on our site. Visit our PD Library now.

Call Our Helpline

Not sure where to begin? Talk to a Helpline specialist for personalized book and resource suggestions. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

We are only able to provide Parkinson’s resources like these because of our generous supporters. Consider donating to the Parkinson’s Foundation today.

Restorative sleep is vital for optimal physical, mental and emotional health. Sleep disorders are one of the most disabling non-motor symptoms of Parkinson’s disease (PD), affecting more than 75 percent of people with PD.

A recently published study in the Journal of Parkinson’s disease, “Slow Wave Sleep and EEG Delta Spectral Power are Associated with Cognitive Function in Parkinson's Disease” (Wood et al., 2021), investigated the relationship between sleep and cognition.

There are four stages of sleep: one for rapid eye movement (REM) and three others for non-REM (NREM) sleep. Stage three, or slow wave sleep (SWS), is one of the three non-REM sleep stages, and is considered to be the deepest and the most restorative of the four stages of sleep. During SWS, the brain produces slow, deep waves, called delta waves, and can be measured using an electroencephalogram (EEG) in a medical office during a sleep study.

Cognitive issues affect about 30% of all people with PD. These symptoms can negatively impact everything from thinking and memory to problem-solving. People with PD may experience:

• Mild cognitive impairment: feelings of distraction or disorganization, along with finding it difficult to plan and accomplish tasks.
• Significant cognitive impairment: inability to perform common tasks such as making coffee, comprehending complex sentences and problems telling apart non-familiar faces. Often associated with caregiver distress, worse day-to-day function, diminished quality of life, poorer treatment outcomes, greater medical costs and increased mortality.

In this observational study, 32 people with PD were enrolled; 16 had high levels of deep sleep (more than 15.8% in SWS) and 16 had low levels (less than 15.8% in SWS). There were no significant differences between the groups in terms of age, disease duration, stage or medications taken known to affect sleep — although more women had high levels of deep sleep than men. All were evaluated with polysomnography (a type of sleep study that monitors sleep stages and cycles to identify if or when sleep patterns are disrupted). Sleep was measured in all participants with an actigraph (a wearable wristwatch-like device that records total sleep time, how long it takes to fully fall asleep, wakefulness after sleep onset, nocturnal awakening and quality of sleep).

To obtain a Composite Cognitive Score (CCS) — the measurement used in this study — the researchers analyzed a wide variety of neurocognitive tests, such as Attention/Working Memory Domain (letter-number sequencing), Hopkins Verbal Learning Test (total immediate recall and delayed recall), Spatial Recall Test (immediate and delayed), Processing Speed and Language. Additional tests were also used to measure estimated intellectual function and overall cognitive function.

Results

Participants with high amounts of slow wave sleep performed better in the following areas:

• Global cognition: the main measurement of overall cognitive function
• Executive function: brain functions that include attention or concentration, needed to multitask and solve problems
• Language: analyzes cognition decline through a neuropsychological test that asks participants to name as many similar items (such as animals) as possible in a minute
• Processing speed: helps show how the brain processes information. Participants are asked to name a color that is written using a different color

What do these results mean?

Sleep dysfunction is common in people with PD. While it is well-known that poor sleep worsens motor symptoms, this study demonstrates a significant relationship between slow wave sleep (SWS) and cognitive function: Those with higher SWS had better cognition than those with lower SWS.  These findings have far-reaching quality-of-life implications.

As suggested by the study authors: the percentage of SWS is potentially a modifiable protective factor. For example, there are prescription medications (such as sodium oxybate) that increase SWS in Parkinson’s, as well as non-pharmacologic interventions, such as exercise, which have been shown to increase SWS in both non-PD populations. Thus, it is imperative that sleep quality issues in the PD population garner more attention, including, but not limited to, a more robust exploration of possible interventions, and an improvement in disseminating currently known sleep improvement information.

Learn More

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

• Parkinson's Disease, Sleep and Me
• Care Partner Program: The Role of Sleep
• Sleep Disorders
• New Study Examines Impulse Control, REM sleep and Dopamine

How can care partners help their loved one with Parkinson’s disease (PD) manage the interplay between the Parkinson’s symptoms of sleep, cognition and mood?

Parkinson’s experts Aleksandar Videnovic, MD, Joseph F. Quinn, MD, and Martha Anne Tudor, MEd, NCC, LAPC, highlight these symptoms and ways care partners can help manage them. For a deeper dive on each topic, register for Parkinson’s Foundation Care Partner Program: Building a Care Partnership, a series of self-paced online courses designed with care partners in mind featuring PD experts.

How does exercise impact sleep, cognition and mood?

It is widely known that exercise is important in managing Parkinson’s symptoms, but how does it help?

• Cognition: Exercise is the single most valuable intervention for promoting cognition. Aerobic exercise has been indicated to enhance protective functions in brain tissue.
• Sleep: With the help of regular exercise our bodies will be more receptive to quality sleep at night.
• Mood: Having a regular exercise regimen can also help combat the depression and anxiety that can be associated with Parkinson’s.

What Parkinson’s medications could impact decline in sleep, cognition or mood?

When there is an issue with sleep, cognition or mood, there are many areas that should be considered when finding a solution.

• Cognition: Cognitive changes (including hallucinations) can be brought on by certain PD medications. Discuss PD medications with a doctor if you or your loved one are experiencing cognitive changes.
• Sleep: Medications with alerting properties should be avoided in the afternoon or evening to increase sleep quality. Taking carbidopa/levodopa before bed to ensure less “off” time during the night can help. Talk to your doctor about taking an anti-depressant to help increase quality of sleep.
• Mood: Many PD medications have mood side effects that can be managed if discussed with your prescribing doctor.

Ultimately, talk to your doctor about any medication concerns you may have.

How does a lack of sleep over time impact cognition and mood?

Sleep is vital for the body and mind.

• Cognition: Without good, consolidated sleep our ability to store and make memories is impacted, as is our ability to perform mental tasks.
• Mood: When we do not get enough sleep, we can experience symptoms that look like depression, but can also be a sign that our bodies are not functioning their best. Once we get the person’s sleep back on track, we can find out what else we are dealing with.
• Sleep: During sleep, our bodies “clean up” our pathways. Without good sleep, our body is not properly getting rid of toxins and waste.

How can cognitive changes and lack of sleep impact driving for a person with PD?

Driving is an important discussion to have before a person with Parkinson’s is no longer able to drive.

• Cognition: Allied health professionals, such as occupational therapists, are trained to monitor the ability to perform cognitively complex tasks such as driving.
• Mood: Driving schools are an objective accessor that can take the stress off the care partner to make the ultimate decision.
• Sleep: Sleep and fatigue are important considerations when deciding if a person with PD is safe to drive. Does the person with PD experience fatigue or need frequent naps? Do they fall asleep without warning?

Remember, it can be incredibly difficult to have driving privileges taken away. Approach this conversation with care and consideration. Consider speaking to a social worker or your support group for advice on the topic.

Which mood, cognition or sleep challenges tend to be the most challenging for care partners?

Care partners often experience Parkinson’s right along with their loved one and have a unique experience and viewpoint. You are not alone in your struggles!

• Cognition: Care partners can often experience frustration with the apathy or impulsivity that people with PD might experience.
• Mood: It is common for care partners to experience anger and frustration, specifically when witnessing the changes and limitations in their loved one’s day-to-day abilities. It can be helpful for care partners to try to “see it for the disease” rather than “just try harder.”
• Sleep: If the person with PD and the care partner shares a bed when the person with PD is not getting quality sleep, chances are that the bed partner isn’t either!

When it comes to mood, cognition or sleep challenges, always talk to your loved one’s doctor and care team about your questions and concerns. You can work together to find solutions that may improve with quality of life.

This article is based on the 2021 Care Partner Summit | Cumbre Para Cuidadores session Sleep, Cognition and Mood. Watch all sessions from the 2021 Care Partner Summit | Cumbre Para Cuidadores now.

Register for the Parkinson’s Foundation Care Partner Program: Building a Care Partnership to explore classes created for care partners.

In the context of the COVID-19 pandemic, telehealth medicine has emerged as an essential tool for accessing healthcare. This trend has led to increased demand for evidence-based digital treatments, known as digital therapeutics. In response to the demand, the development of digital therapeutics is being fast-tracked in the scientific research community and utilized among people with Parkinson’s disease (PD). Although anyone can create and offer downloadable wellness apps, digital therapeutics require they be based upon rigorous, evidence-based studies that clinically demonstrate their effectiveness. 

Since digital therapeutics is an evolving, new technology, still lacking extensive data, it is essential that potential real-word benefits and shortfalls be investigated. A recently published study in the Journal of Parkinson’s Disease, titled, “Digital Therapeutics in Parkinson’s Disease: Practical Applications and Future Potential,” (Ellis & Earhart, 2021), explored recent and emerging evidence for using digital therapeutics to facilitate lifestyle changes and motor (e.g., walking) and non-motor (e.g., sleep, anxiety) Parkinson’s symptoms, with the goal of determining whether participant outcomes might be improved.

As part of this research, researchers reviewed multiple studies. Information provided concerning the length of studies, types of studies, study design, study demographics, number of participants and statistical significance varied greatly. Additionally, most studies were not PD population-specific. 

Researchers analyzed the following studies: 

Results

Digital Therapeutics to Improve Walking  

A one-year, single-blinded randomized controlled trial of people with mild to moderate PD in which participants were given a video-taped custom-tailored exercise program designed to help with walking. After uploading the video as a mobile app for their personal use, participants were required to enter personal data related to their adherence to the program, pain, and level of difficulty. This data was monitored remotely by a physiotherapist with whom the participants could message, ask for help, receive encouragement, etc. The physiotherapist would also adapt the exercises based on the progress achieved. 

An increase in daily steps and moderate intensity minutes was experienced by both groups, with clinically meaningful improvement achieved by the less active group.

Digital Therapeutics to Improve Non-Motor Outcomes

A six-session, single-blinded randomized controlled study of 1,711 adults compared digital cognitive behavioral therapy (CBT), delivered via web or mobile, with standard sleep education hygiene, for insomnia on health, psychological well-being, and sleep-related quality-of-life. Treatment consisted of a behavioral component (e.g., relaxation), a cognitive component (e.g., mindfulness) and an educational component (e.g., sleep hygiene). Participants could view their progress, treatment strategies, sleep schedule and educational materials via the platform at their convenience. An interactive, animated virtual therapist provided support and advice based upon the goals set by the patients at the beginning of the study. Participants also uploaded daily data in the form of a sleep diary. 

The CBT approach resulted in a small improvement in functional health and psychological well-being. It also resulted in a large improvement in sleep-related quality-of-life compared with sleep hygiene education — after four weeks and 24 weeks. This study was not conducted among people with PD but suggests potential benefits for people with Parkinson’s.

Digital Therapeutics for Virtual Coaching & Healthy Lifestyle Promotion  

A 12-week study used an artificial intelligence virtual coach to provide instant messaging (to personal devices) focused upon fostering a Mediterranean-style diet and an increase in physical activity. Eighty-one inactive (mostly overweight or obese) adults, ranging in age from 45 to 75 participated in a proof of concept study (testing whether the concept could realistically work). Weekly check-ins concerning participants’ step counts and dietary choices were recorded. 

Physical activity was increased by an average of 109 minutes per week. There was also an overall average weight loss of about 2.8 pounds. Thus, practicality was excellent in terms of recruitment, retention (90% at 12 weeks) and safety. Limitations of this study include a lack of a control condition and a relatively short follow- up period.

What Does This Mean?

The COVID-19 pandemic put the need for remote healthcare in fast-forward. Digital therapeutics — which combines sophisticated technology with evidence-based medicine — shows great promise. It is a meaningful step forward towards more personalized medicine, and could enhance the preferred, more holistic, interdisciplinary approach for managing PD. 

However, there is much work to be done. Digital therapeutics remain underdeveloped and underutilized. In addition, while proof-of-concept studies in the general population are valuable, more studies specific to the PD population are needed. 

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth, COVID-19 and its impact on the PD population by visiting the below Parkinson’s Foundation resources, or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• COVID-19 & Parkinson’s
• Parkinson’s Foundation Shares PD GENEration Remote Recruitment Findings at American Academy of Neurology Annual Meeting
• Telehealth and Parkinson's
• Telehealth Use Up Markedly Among Parkinson’s Patients

Why is research important for understanding Parkinson’s disease (PD)? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, outlines the Foundation’s research strategy and some exciting Parkinson’s research being conducted right now. Dr. Beck highlights three key areas of PD research funded by Parkinson’s Foundation grants: biology, neural circuitry and symptoms.

Watch the latest Parkinson’s disease videos on our YouTube channel.

From renowned singer Linda Ronstadt to former NBA player Brian Grant, the faces of Parkinson’s disease (PD) are as diverse as the symptoms. While there can be common themes — such as slowed movement (bradykinesia) or stiffness (rigidity) — each person’s PD experience is unique, making individually tailored therapy vital. Fortunately, the list of medications and treatments that improve quality of life for people living with PD continues growing.

This article is based on a Parkinson’s Foundation Expert Briefing Parkinson's Disease & Medication - What's New presented by Vanessa K. Hinson, MD, PhD, Movement Disorders Program director, Medical University of South Carolina, a Parkinson’s Foundation Center of Excellence.

Parkinson’s disease can vary widely from one person to another. Whether or when someone might experience rapid, involuntary and uncontrollable body movements, called dyskinesias, as a complication of some Parkinson’s medications can also fluctuate. Cognitive changes or multitasking can pose challenges for some who live with PD, while others might experience hallucinations. Optimal PD treatment and care should be based on your unique symptoms and help you to live your best life.

Traditional PD Medications

For a go-to medications and Parkinson’s guide, read our free educational book: Medications.

Although a cure for Parkinson’s has still not been discovered, progressive genetic research is accelerating PD science, uncovering knowledge that may lead to breakthrough therapies. Currently, there are medications and surgical treatments that can improve motor and non-motor PD challenges.

Principal among these is carbidopa/levodopa therapy, the most effective PD prescription. The brain’s chemical messenger dopamine diminishes in PD, causing many of the disease’s symptoms. Carbidopa/levodopa (Sinemet) works to increase dopamine levels. Developed more than 50 years ago, this affordable treatment continues to improve symptoms and quality of life for people who live with Parkinson’s today.

Many established medications to boost the effects of carbidopa/levodopa also exist, as well as alternative therapies, including:

• Dopamine agonists: medicines that imitate dopamine’s action in the brain.
• Monoamine Oxidase Type B (MAO-B) inhibitors: enzyme-breakdown inhibitors that prolong that action of dopamine in the brain.
• Amantadine: long used to ease PD tremor, this medicine has more recently been found to improve the dyskinesia that can often start after years of levodopa treatment.
• Surgical treatments: including deep brain stimulation (DBS), can be helpful for those who experience medication complications or motor fluctuations.

While these standard treatments can enhance quality of life with Parkinson’s, they pose challenges, too, such as motor fluctuations. In particular, levodopa can ease movement and improve function, but can also increase dyskinesia at certain doses as time goes on. Known as “off” times, when medications are delayed or wear off, symptoms return. Other common side effects from traditional PD treatments can include:

• Sleepiness
• Dizziness
• Constipation and nausea
• Cognitive changes
• Hallucinations
• Behavioral changes, including compulsive behaviors like gambling or sexual fixation

A movement disorder doctor can highlight potential benefits and risks, while helping you to find the treatment that works best for you. Good motor symptom management might include one of the above traditional PD medications, or a combination of therapies. Today, several newer treatments can enhance PD therapies and treat a diverse array of non-motor symptoms.

Newer Parkinson’s Therapies 

Extended-release carbidopa/levodopa (RYTARY®) has been on the scene for more than five years, yet people are still unaware of its benefits. The capsule may offer longer-lasting symptom improvement for people who experience frequent motor fluctuations.

As PD advances, “off” times can increase. Additionally, some people living with PD can experience gastroparesis (slowed emptying of the stomach). This can make oral medications less effective. Carbidopa/levodopa enteral suspension (CLES or DUOPA™) therapy can lessen motor fluctuations by continuously delivering medicine to the small intestine. This treatment can also lessen dyskinesia. A current clinical research study is exploring how to deliver a similar treatment under the skin using a microneedle.

Levodopa Add-ons

Treatments that complement levodopa can help to minimize motor fluctuations. These include:

• Safinamide (XADAGO®), a once-daily tablet. Similar to rasagiline, this MAO-B inhibitor can reduce “off” times without dyskinesia.
• Opicapone (ONGENTYS®) is a COMT (catechol-o-methyl transferase) inhibitor, like entacapone. Also taken once daily, it extends levodopa benefits and reduces “off” times.
• Istradefylline (NOURIANZ™) blocks dopamine-adjacent adenosine A2 receptors to improve PD symptoms. While safinamide, opicapone and istradefylline can reduce “off” times, they can all potentially increase dyskinesia.
• Another once-daily add-on, an extended-release amantadine formula (GOCOVRI® ER) taken at bedtime, can reduce motor fluctuations and dyskinesia, but can possibly worsen hallucinations in those who experience them. Generic amantadine can also lessen “off” times.

On-Demand Medications

Two newer levodopa add-on medications are designed to quickly ease intermittent, sudden “off” times:

• Levodopa inhalation powder (INBRIJA™) can be administered via inhaler as needed, up to five times a day. It can improve motor fluctuations within 10 minutes and last up to 60 minutes. For some, the powder can cause coughing.
• Sublingual apomorphine (KYNMOBI®) dissolves under the tongue to relieve wearing off episodes for people with PD within 15 minutes, lasting up to 90 minutes. Side effects can include nausea, so treatment may require antinausea therapy. It should be used for the first time in the doctor’s office, as it may briefly induce low blood pressure for some people.

Addressing Dyskinesias

While uncommon in early Parkinson’s, about 90%of people who have lived with PD for 10 or more years will experience dyskinesia. Adjusting medications can help. Sometimes additional medications are required.

One option is the earlier-mentioned amantadine GOCOVRI® ER formula, U.S Food and Drug Administration (FDA) approved to treat dyskinesia. However, it can potentially increase constipation, impact cognition and worsen hallucinations.

Parkinson’s Disease Psychosis

PD psychosis, characterized by confusion, delusions and hallucinations, can be triggered by PD medications, dosages or Parkinson’s itself. Cognitive changes can also be a sign of dementia. These symptoms should be discussed with your doctor.

Medication adjustments can help with PD psychosis, as can clozapine (Clozaril) and quetiapine (Seroquel). A newer treatment, pimavanserin (NUPLAZID®) was approved by the FDA specifically for PD psychosis in 2016.

Low Blood Pressure

Up to half of people living with PD experience lightheadedness, fainting and other symptoms due to neurogenic orthostatic hypotension — a significant blood pressure drop upon standing.

Medication adjustments can help. Medications such as droxidopa (NORTHERA®) may also be beneficial. Droxidopa treats lightheadedness but should not be taken within five hours of bedtime. Headache, dizziness, nausea and fatigue are among the side effects.

Drooling

Decreased swallowing in PD can cause sialorrhea, or drooling. Injectable, FDA-approved therapies can reduce saliva flow. Botulinum toxins XEOMIN® (incobotulinumtoxinA) and MYOBLOC® (rimabotulinumtoxinB) can provide between three to four months of relief.

Tremor-Predominant PD

Deep brain stimulation can improve tremors and motor fluctuations when motor fluctuations aren’t sufficiently controlled with medication. It requires brain surgery.

Focused ultrasound is a minimally invasive surgical procedure that can also improve tremors. An alternative to DBS, it uses high-energy sound waves to terminate a small tremor-related area of the brain. The effects are often immediate. It was approved by the FDA in 2018 for the treatment of tremor-dominated Parkinson’s.

As research continues improving care for people with PD, exercise, a nutritious diet and restorative sleep remain key to symptom management and living your best life.

The Parkinson's Foundation is here for you. Our Helpline has answers to your Parkinson’s questions at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org

In today’s fast-paced society, with more people spending large amounts of time connected to technology, stress has become the norm. Whether it is short-term, acute stress that comes from situations — such as moving to a new apartment — or long-term, chronic stress caused by long lasting problems — such as ongoing financial or health worries — stress can negatively impact mental and physical health. People with Parkinson’s disease (PD) commonly report that acute stress worsens their motor symptoms, such as freezing of gait, dyskinesia and tremor. People with PD also notice that chronic stress seems to worsen non-motor symptoms, particularly anxiety and depression.

Of note, there are also PD mice studies suggesting that chronic stress can accelerate PD disease progression. A better understanding of how stress impacts PD — and an exploration into possible coping mechanisms — are key to improving PD management.

A recently published study in the journal, Parkinson’s Disease, “Stress and mindfulness in Parkinson's disease - a survey in 5,000 patients” (van der Heide, Speckens, et al., 2021) sought to investigate four questions: 

1. Do people with PD experience more stress than a control group?
2. Which personality and disease characteristics are associated with stress? 
3. Which PD symptoms are especially sensitive to stress? 
4. What strategies might successfully help reduce stress for people with PD — with particular attention to mindfulness (defined in the study as moment-to-moment, non-judgmental awareness). 

Study participants included 5,000 people with PD (average age of 67.3 years, average time living with PD 5.9 years, and 48% women) and 1,292 people without Parkinson’s (average age 60.8 years, 78.0% women). Of those that responded to the survey, 93.9% were Caucasian, 0.5% African American, 1.0% Alaska native, 1.5% Asian, and for 3.0% race was unknown. The majority (82.6%) lived in the U.S. A multitude of well-respected, validated scales were used to measure perceived stress, anxiety, awareness of one’s thoughts and feeling in the moment (dispositional mindfulness), excessive and intrusive negative thoughts (rumination), and self-compassion. Additionally, the study allowed for open-ended feedback from participants, allowing them to list other symptoms affected by stress. 

Results

Understanding the effects of stress:

• People with PD scored significantly worse than those without PD in nearly every category, including anxiety, perceived stress and depressed mood.
• Stress worsened all PD symptoms measured in the survey, including sleeping problems, depression, dyskinesia (involuntary movements), freezing of gait (feeling stuck in place), and bradykinesia (slowness of movement).
• The PD symptom with the strongest stress effect was tremor — experienced by 81.8% of patients.
• Participants with PD with higher stress levels ruminated more, scored lower on quality of life, lower in dispositional mindfulness and lower in self-compassion.
• People with PD under higher levels of stress reported worse disease severity on a daily basis.
• Self-compassion did not differ between people with and without PD.
• People with PD also added to the list of stress symptoms cognitive impairment, loss of focus, confusion, impaired executive function, speech and communication issues, emotional symptoms (anger and frustration, anxiety, nervousness, and apathy, and pain).

Studying stress management methods:

• Exercise (walking, cycling, swimming, sports, yoga, Pilates, or Tai Chi) was most frequently used to reduce stress (83.1%) – with beneficial effects reported on all motor and non-symptoms.
• Mindfulness, practiced by 38.7% of study participants with PD, was linked to improvements in both motor and non-motor symptoms — most notably 60.2% noticed improvement in depression and 64.7% in anxiety. 
• Of the 38.7% of people with PD practicing mindfulness, 85.7% recommended it to others with Parkinson’s.
• The more often mindfulness was practiced by people with PD, the greater the perceived improvement in their Parkinson’s symptoms; approximately half (53.2%) practiced mindfulness at least once a week, and 21.5% practiced once a month or less.
• Mindfulness was experienced as helpful, regardless of PD medication use, and regardless of how long a person had been diagnosed with PD.
• Among the non-mindfulness users, 43.4% were interested in gaining mindfulness skills. 
• Mindfulness users in both groups scored higher on dispositional mindfulness and perceived stress.

These study findings clearly suggest that people with PD experience greater levels of stress than the general population. It is of particular concern that extra sensitivity to stress translated into a significant worsening of both motor and non-motor symptoms. 

Mindfulness (the intentional, active awareness of the present moment, observed without judgment) may improve PD symptom severity. This study demonstrated a significantly positive effect of mindfulness on anxiety and depressed mood. Physical exercise also had a positive effect. Whether or not exercise improved symptom severity in PD directly, by reducing stress, is unclear.

Previous studies have found mindfulness to be a helpful complementary therapy. According to the National Institute of Mental Health, over time, the continued strain on the body from chronic stress may contribute to serious health problems, such as heart disease, high blood pressure, diabetes, and other illnesses, including mental disorders such as depression and anxiety. Chronic stress can also disturb the immune, digestive, cardiovascular, sleep, and reproductive systems, as well as trigger headaches, sleeplessness, sadness, anger, and irritability.

As stated by the study authors, stress has been shown to have a “considerable and detrimental influence on quality of life and on symptom severity” in the PD population. This study also suggests that there are self-management strategies that the PD population can incorporate that are potentially beneficial - particularly mindfulness. However, additional studies are needed with greater diversity of study participants to better understand how mindfulness and physical exercise might be optimized to maximize benefits to motor and non-motor functions.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about stress and mindfulness in the population by visiting 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.

• Mindful Mondays
• Emotional & Mental Health
• Stress Management for PD
• Anxiety and PD

Parkinson’s disease (PD), skin and bone health are closely intertwined. Researchers are exploring how they are connected to uncover information that could improve lives. Higher bone fracture risk, flaky or dry skin and too much or too little sweating can be common in Parkinson’s. Simple tips can help you tackle these and other related changes.

This article is based on a Parkinson’s Foundation Expert Briefing webinar exploring these connections presented by Nicki Niemann, MD, Muhammad Ali Parkinson Center at Barrow Neurological Institute, and Kenneth W. Lyles, MD, Duke University Medical Center. Barrow and Duke are Parkinson’s Foundation Centers of Excellence.

Parkinson’s and Skin Health

Research shows an overlap in skin health and PD. Overall cancer risk is reduced in Parkinson’s disease, but skin cancer risk — especially melanoma — increases.

In Parkinson’s, misformed alpha-synuclein protein builds up and clumps in the brain. Skin cancer biopsies of people with PD also show increased alpha-synuclein in the skin, compared to the general population. Additionally, people diagnosed with rosacea — facial flushing, redness and sometimes, bumps — are nearly two times as likely to be diagnosed with Parkinson’s.

PD and other neurological disorders also increase the risk for bullous pemphigoid (a skin condition causing itching, redness and large, fluid-filled blisters that can break and cause blood-borne infection).

Connections such as these have scientists exploring skin health as a possible biomarker (a measurable sign, such as heart rate, that can clue doctors in on your health) to help detect Parkinson’s sooner. Skin biopsy holds promise as a potential future Parkinson’s disease diagnostic tool. Earlier diagnosis can improve outcomes for people living with PD.

Skin Cancer Safeguards

Despite past misconception, levodopa, the most commonly prescribed PD medicine, does not increase risk of melanoma. However, though the association is not yet clear, some of the same shared risk factors for PD can also increase melanoma risk. These include being male, Caucasian, having red hair, fair skin and previous pesticide exposure.

Protect yourself by reducing direct sun exposure, wearing sunblock and visiting the dermatologist annually.

When it comes to spotting melanoma, the American Academy of Dermatology recommends watching for these signs:

Asymmetry –the shape of a spot or mole is unequal
Border – an irregular or scalloped edge
Color – blues, reds, browns or black; suspect spots can vary in hue
Diameter differs, too; melanomas can be the size of a pencil eraser, larger or smaller
Evolution in spot color, shape or size should also be shared with your doctor

Skin Health Strategies

Studies estimate between 20 to 60% of people with Parkinson’s may also live with seborrheic dermatitis, compared to just three to four percent of people without PD. Symptoms can include itching, scaling, oiliness, redness and burning — mainly on the scalp, but for some people, the face, chest or back, too.

Over-the-counter medicated shampoos containing salicylic acid, zinc, selenium, tar or ketoconazole can help. A dermatologist can recommend treatment for severe symptoms, such as prescription-strength shampoos, steroids or other immune suppressants.

Excessive drooling can also be common in Parkinson’s. It can cause perioral dermatitis — redness and irritation around the mouth. Anticholinergic medications and botulinum toxin A (BOTOX ®) can be used to decrease drooling.

Sweating Changes     

Sweating too much — whether on the head, neck or trunk — is more common in Parkinson’s than not sweating enough. Excess sweating can also happen on the foot soles, palms or at night. It’s often experienced even prior to a Parkinson’s diagnosis.

Sometimes changes in the autonomic nervous system, an area controlling automatic body functions such as rate of breathing, are responsible. Carbidopa-levodopa-related motor fluctuations, or “wearing off,” can increase sweating, as can other medications unrelated to PD, such as certain antidepressants. Infections, sleep apnea, endocrine conditions and cancer can intensify sweating, too.

Though not as common, decreased sweating can also pose problems for some people with Parkinson’s. This is often related to anticholinergics, including amantadine and trihexyphenidyl. Review your medication list with your doctor who can adjust prescriptions, identify other causes or offer treatments, such as:

• topical medications, including prescription antiperspirant aluminum chloride hexahydrate
• oral propranolol (Inderal®)
• anticholinergic drugs, such as glycopyrrolate
• BOTOX ® injections for localized sweating 
• electric current iontophoresis therapy

These at-home tips can help with sweating:

• Wear breathable cotton clothes and socks, and non-synthetic shoes
• Take lukewarm or cold showers
• Increase fluid intake
• Drink cold liquids
• Use antiperspirant

Skin Changes

Sometimes, PD treatments can cause skin issues. While there are few reports of true levodopa/carbidopa allergy, the 25/100 formulation can cause a rash for some people, possibly due to a yellow dye. If this side effect occurs, your doctor might switch you to formulation without yellow dye, including 10/100, 25/250, Parcopa, Stalevo or Sinemet CR.

Some Parkinson's medications can also cause leg edema (swelling due to trapped fluid). These include amantadine and dopamine agonists, such as ropinirole, pramipexole, rotigotine and apomorphine. Talk to your doctor if leg swelling occurs within a few months of starting a medication.

People using Duopa therapy, levodopa/carbidopa intestinal gel delivered by pump through a small, surgically placed hole in the stomach, can also experience skin issues, including redness, leakage around the opening or abscess. Proper pump tube care and increased healthcare provider access is essential.

Deep brain stimulation (DBS) uses surgically placed electrodes in the brain and with an implantable pulse generator to block abnormal nerve signals in the brain that cause motor symptoms. Though skin-related complications are uncommon, a small percentage of users might experience hardware-site infection, or skin erosion near components.

Parkinson’s and Bone Health

Caring for bone health when living with Parkinson’s is critical. Exercise, regular bone mineral density screenings are key.

It’s estimated that about 45 million Americans have low bone mass, putting them at risk of joining the more than 12 million people in the U.S. who live with osteoporosis (a condition where bones become thin, fragile and prone to fracture). Such skeletal problems are often associated with aging.

People with PD are at higher skeletal fracture risk than others, experiencing fractures two to three times more frequently. Hip fractures occur four times as frequently. At best, less than five percent of people with Parkinson’s who experience fractures are treated. However, addressing and treating fractures is crucial: It can take someone who lives with PD longer to recover from a fall injury or fracture, and they may experience worsening symptoms, loss of independence and cognitive decline.

Fortunately, there are many ways to reduce fracture rates in people with PD and current research is exploring further ways to minimize bone risks.

Who’s at a high risk of osteoporosis?

• People living with Parkinson’s  
• Women
• Older people
• Those with low body weight
• Those with a family history of osteoporosis
• Those with a history of fractures or low-impact fractures
• Smoking and excessive alcohol intake increase risk

Glucocorticoid therapy, medicine used to reduce inflammation, can increase bone loss and fracture risk. Other medications can too — including proton pump inhibitor therapy, anticonvulsants, aromatase inhibitors, tamoxifen, Depo-Provera and steroids. Conditions that are associated with bone loss include gastrointestinal and autoimmune diseases, genetic issues, diabetes and others.

Boosting Bone Health

What’s good for your body is also good for your bones:

• Stop smoking
• Limit alcohol
• Avoid sedating medications

Exercise can keep bones strong and strengthen muscles and in Parkinson’s, it can also improve many disease-related symptoms. Find something that makes you want to move and stay active. Physical therapy can help, too.

Maintaining optimal levels of calcium and vitamin D3 benefits bones and overall health. Because calcium in dairy foods can inhibit levodopa absorption, people with PD can find it hard to get the recommended 1200 mg daily for women over 50 and 1000 mg daily for men over 70. Calcium-fortified foods, such as juices, rice and breakfast cereals, can boost calcium levels. Chewable calcium citrate tablets can be taken without food and are easily absorbed. Doctors recommend limiting single doses to no more than 600 mg elemental calcium, splitting the dose if needed.

The body also needs adequate vitamin D to take in enough calcium. Research shows depressed vitamin D levels in people living with Parkinson’s. Vitamin D is easy to absorb if you live in a sunny place — wear sunscreen. If this isn’t possible, a nutritious diet, including fatty fish, such as salmon, liver, eggs and fortified milk or cereals, can help. Your doctor might also recommend vitamin D3 supplements.

Osteoporosis Medications  

Medicines are also available to treat bone density loss. Hormonal medications include estrogen therapy and raloxifene, a selective estrogen receptor modulator, or SERM.

Prescription therapies that stop bone breakdown, called antiresorptives, include bisphosphonates such as alendronate (Fosamax®), risedronate sodium (Actonel®), ibandronate sodium (Boniva®) and zoledronic acid (Reclast ®). Anabolic medications boost bone building, and include teriparatide, abaloparitide and romosozumab.