For Don Miller and Marie Head of Big Canoe, GA, their devoted marriage, and their tremendous admiration for each other’s resilience, helps them manage the challenges of Parkinson’s disease (PD).
“Don is a fighter,” said Marie. “From the moment he was diagnosed, I have told him that he is my hero. He has never stopped fighting.”
“It's a wonderful union,” said Don. “I'm so lucky to have found a caring partner like Marie in mid-life. Tackling PD without her would have been so much harder. She's an excellent care partner and very loving person.”
Don and Marie have been passionate members of the Parkinson’s Foundation community since 2013. They are consistently ranked among the top fundraisers at Moving Day Atlanta each year, and Marie serves on the People with Parkinson’s Council. The couple was delighted to be included in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) to help raise awareness.
“I hope this PSA will let people know they are not alone — resources are available to both people with PD and people who are caring for them. They are a part of a larger community that wants to help,” said Don.
Part of the PSA was filmed at Don’s New Beginnings Boxing class, which has been another valuable source of support for the couple. “We live in a rural community without many resources, so we greatly appreciate this PD boxing program, which was started with a Parkinson’s Foundation community grant,” said Don.
Don and Marie were still newlyweds when Don began to suspect that he had PD. He first noticed that his once impeccable handwriting had become smaller and harder to read. Handwriting changes can be one of the early signs of PD.
Initially, Don chalked it up to being retired and not writing as often. In the months that followed, however, coordinating activity between his brain and his hands become even more challenging.
On a vacation in Florida in 2011, Marie noticed that Don struggled with the lock for their bicycles — he couldn’t line up the top of the lock with the bottom.
“In the car that day, he told me, ‘I want you to look something up: Parkinson’s disease,’” said Marie. “He was already doing the research. I panicked and said, ‘wait a minute, why are we going to Florida? We need to get back to Atlanta and see a doctor.’”
Back at home, a neurologist confirmed the couple’s fears: Don indeed had Parkinson’s.
The news was especially difficult because Don and Marie already had extensive experience with degenerative illnesses. Each had been previously widowed after caring long-term for spouses who succumbed to health battles.
“The diagnosing doctor was a neurologist, but not a movement disorder specialist,” said Marie. “We were handed a prescription and told, ‘here are some drugs — come back and see me in about four months and we'll review your symptoms again.’”
Despite their discouragement in that moment, the couple approached PD with determination. They dove into action, seeking resources to help Don live a longer, healthier life. The first stop was the Parkinson’s Foundation.
“The Parkinson’s Foundation has so much helpful information,” said Don. “It offers so many resources for support and opens doors to the latest information and research. The Foundation has let me know I'm not alone in my fight.”
In successfully adjusting to their new reality, the couple finds that communication is key. “When I was first diagnosed, sometimes communications could be complicated,” said Don. “I like to do things for myself when I can, and Marie is often quick to jump in to help.”
One evening, as the couple dressed for an event, Marie saw Don struggling with the buttons on his shirt. “I just reached up and fastened the buttons,” said Marie. “I remember that he took my hands gently and he said, ‘you know what, why don't you let me ask you when I need help.’ We made an agreement right then and there that we both would ask for help when it was needed instead of assuming.”
Don and Marie embrace outings with friends and exercise as ways to help manage the movement and non-movement symptoms of PD while nurturing their relationship. Together, they travel the world. They enjoy hiking, fishing, biking and dancing. “Don bought me ballroom dance lessons when we were first married. We love to dance,” said Marie. “Parkinson's has interrupted that just a little bit because of balance but we often find ourselves slow dancing in the kitchen.”
Don’s advice to everyone in the PD community is to fight. “With PD, there will be good days and bad days. Be active in body, mind, and spirit. Communicate honestly with your family, friends and care partners. Fight hardest when you feel your worst.”
Weeding Through the Haze: People with Parkinson’s Share Medical Cannabis Experiences
Medical cannabis (or marijuana) is a complementary and alternative therapy of high interest for the Parkinson’s disease (PD) community. The Parkinson’s Foundation believes that this topic should be better understood, and has committed to doing so with a medical marijuana convening and its published guidelines, new articles, interviewing experts on our podcast and most recently, conducting a survey to better understand cannabis use among the PD community.
In the U.S., cannabis has become more widely available for medical and recreational use. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, the Parkinson’s Foundation distributed a survey, Weeding Through the Haze: A Survey on Cannabis Use Among People Living with Parkinson’s, Disease in the U.S., to 7,607 people with PD in January 2020 and analyzed the 1,064 complete responses we received.
“It is important to understand how people with Parkinson’s disease are using cannabis, and whether they are basing their use on evidence-based recommendations or trial and error. This survey will help shed light on the community viewpoints and experiences surrounding cannabis use for Parkinson’s disease symptoms,” said Megan Feeney, MPH, Parkinson’s Foundation Associate Director of Community Engagement and survey lead.
Medical Cannabis and Parkinson’s
Managing Parkinson’s is complex. As the neurodegenerative disease progresses, so do its symptoms for most. Many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. Many people with Parkinson’s have looked to medical cannabis to provide some relief. However, more research is needed to prove if and how PD symptoms are relieved when using cannabis, and if so, what type of cannabis and what dosage are most effective and safe for the consumer.
Nevertheless, there is an increasing interest in the use of medical cannabis. Currently, 47 of 50 states in the U.S. permit the sale or consumption of hemp-sourced cannabidiol (CBD) products with less than 0.3% tetrahydrocannabinol (THC), while 35 of 50 states have approved marijuana for medicinal purposes and 15 of 50 states permit recreational use of marijuana. Today, broad numbers of people with PD have access to cannabis.
Survey Results
The 1,064 survey respondents came from 49 states. The average age for respondents was 71, and the average time they have lived with Parkinson’s is seven years. The survey asked specific questions about cannabis use ― from symptom management to motivation for use and side effects ― and questions for those who do not use cannabis and why.
Experiences with Cannabis and Managing PD
Of the respondents who consumed cannabis:
25% used cannabis within the previous six months.
57% learned about cannabis use from the internet, friends or other people with PD.
64% had not received a cannabis recommendation from a licensed doctor or provider.
56% were not provided any information on how to use cannabis (such as dosage, type and frequency of use).
Most consumers reported their most common time of cannabis use is either in the evening or at bedtime.
Interestingly, 23% of consumers stated they stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement. Of note, 76% of respondents did not use cannabis, primarily because there was a lack of scientific evidence supporting any benefits.
Experiences with Cannabis and Managing PD Symptoms
Among respondents, cannabis was used to treat motor and non-motor symptoms. When asked about associated symptom relief, most consumers reported that cannabis use led to a moderate or considerable improvement in the severity of anxiety, pain, sleep disorders, stiffness and tremor. Overall use and the level to which cannabis was reported to address motor and non-motor symptoms varied widely.
Negative Side Effects
Less than 13% of consumers reported negative side effects from cannabis use. We also asked non-consumers of cannabis if they had experienced any previous negative cannabis experience. Of these, about half reported negative side effects.
Combined, both groups listed their negative side effects as an increase in anxiety (30%), impaired coordination (20%), dizziness (20%) and “other reasons” (38%), which included sleepiness, confusion, worsening orthostatic hypotension.
PD Medication and Cannabis Consumption
Cannabis consumers rated non-motor prescription medications as less efficacious than non-consumers. Among all consumers, 85% reported that cannabis use had no impact on their prescription medication usage, and 89% said cannabis was not a replacement for their PD prescription medications.
Clinical Trials
Among all who responded, 82% were interested in learning more information about a clinical trial exploring the impact of cannabis on PD symptoms, and 62% were interested in enrolling in a clinical trial.
Key Takeaways
While better understanding cannabis experiences of people with PD, looking at the bigger picture, survey results show that:
A knowledge gap among people living with PD, which may be impacting their decisions about cannabis use, as a large portion of consumers reported not knowing the type, brand or dosage of cannabis they primarily use.
Among some consumers, reported cannabis use may have been beneficial for motor and non-motor PD symptoms including anxiety, pain, sleep disorders, stiffness and tremor. This is consistent with other research studies.
One in five survey respondents are current cannabis consumers.
Cannabis use did not have an impact on PD prescription medications.
Cannabis consumers see the limited effectiveness of cannabis for symptom management. Most consumers recognize that cannabis is not a substitute for their PD medications.
Learn More
Learn more about Parkinson’s and medical cannabis in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
To commemorate our 100 episodes of educating the Parkinson’s community “on air,” we want to share some of our favorite episodes with you below. We also want to hear from you ― what topics are you interested in learning more about? Tell us by taking this survey.
In our debut episode, Michael Okun, MD, talks about early signs of Parkinson's disease (PD) and offers practical advice on how to proceed after a diagnosis. If you or a loved one recently received a Parkinson’s diagnosis, be sure to order your Newly Diagnosed Kit at Parkinson.org/NewlyDiagnosed.
Heather Cianci, PT, GCS says an early consultation can take advantage of a particularly valuable window of opportunity to address movement issues and improving movement and physical impairments can improve one’s mental state as well. Download our Falls Prevention or Freezing and PD fact sheets for additional tips on managing motor symptoms.
Licensed Clinical Social Worker, Jessica Shurer, discusses the emotional changes that may occur throughout the course of Parkinson's disease along with suggestions for how people who are unable to travel to large medical centers may find help to address their emotional needs. Download our fact sheets on Anxiety in Parkinson’s, Apathy in Parkinson’s and Combatting Depression to learn more about non-movement PD symptoms.
Parkinson’s can be unpredictable ― symptoms can come and go or get better and worse throughout the day. Irene Malaty, MD, explains more about what causes these changes and how you can work with your doctor to manage them. Read, order or purchase the Kindle eBook of Managing Mid-Stride: A Treatment Guide to Parkinson’s.
Regular exercise is essential for people with Parkinson's. Bas Bloem, MD, PhD, describes what is known about exercise and PD and what is still in the research stages. He also offers tips on overcoming barriers to getting enough exercise. Read, order or purchase the Kindle version of our book Fitness Counts and fact sheet, Exercise and Parkinson’s.
Danny Bega, MD sheds light on some of the issues and concerns surrounding the use of medicinal cannabis for people with Parkinson's. Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana.
Nutrition is increasingly part of the conversation when it comes to good Parkinson's care. Dr. Bloem describes how diet can help improve some of the symptoms of Parkinson's and optimize the effects of medication, and he offers tips on getting adequate nutrition. Download our fact sheet Nutrition and PD to learn more about how nutrition can impact PD.
When you participate in our ground-breaking study, PD GENEration: Mapping the Future of Parkinson’s disease, you can help scientists in their journey to advance understanding of PD, leading to new, more effective PD therapies. If you have a confirmed Parkinson’s diagnosis, visit Parkinson.org/PDGENEration to learn more and enroll.
A YOPD diagnosis brings with it special challenges. For example, deciding how and when to disclose the diagnosis at work and to children can be difficult, not to mention coping with a progressive condition and trying to plan for the future. Social worker Elaine Book discusses these challenges and more, as well as techniques for dealing with them. Listen to other YOPD podcast episodes: Characteristics of YOPD and YOPD: Lifestyle, Family, and Counseling.
Aware in Care Ambassadors Kathy McMurray and Sara Holman share their success stories, as both were instrumental in educating hospital staff and refining the electronic medical records system to meet the unique needs to treat people with PD. Visit Parkinson.org/AwareInCare to order your Aware in Care hospital kit or download its components.
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
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.
Parkinson’s 101: We Answer Your Top Parkinson’s Questions
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.
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.
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.
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.
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.
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.
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:
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.
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.
Amara, A. W., Wood, K. H., Joop, A., Memon, R. A., Pilkington, J., Tuggle, S. C., . . . Bamman, M. M. (2020). Randomized, Controlled Trial of Exercise on Objective and Subjective Sleep in Parkinson's Disease. Mov Disord, 35(6), 947-958. doi:10.1002/mds.28009
Feher, K. D., Wunderlin, M., Maier, J. G., Hertenstein, E., Schneider, C. L., Mikutta, C., . . . Nissen, C. (2021). Shaping the slow waves of sleep: A systematic and integrative review of sleep slow wave modulation in humans using non-invasive brain stimulation. Sleep Med Rev, 58, 101438. doi:10.1016/j.smrv.2021.101438
Loddo, G., Calandra-Buonaura, G., Sambati, L., Giannini, G., Cecere, A., Cortelli, P., & Provini, F. (2017). The Treatment of Sleep Disorders in Parkinson's Disease: From Research to Clinical Practice. Front Neurol, 8, 42. doi:10.3389/fneur.2017.00042
Melka, D., Tafesse, A., Bower, J. H., & Assefa, D. (2019). Prevalence of sleep disorders in Parkinson's disease patients in two neurology referral hospitals in Ethiopia. BMC Neurol, 19(1), 205. doi:10.1186/s12883-019-1431-2
Schreiner, S. J., Imbach, L. L., Valko, P. O., Maric, A., Maqkaj, R., Werth, E., . . . Baumann-Vogel, H. (2021). Reduced Regional NREM Sleep Slow-Wave Activity Is Associated With Cognitive Impairment in Parkinson Disease. Frontiers in Neurology, 12(156). doi:10.3389/fneur.2021.618101
Wood, K. H., Memon, A. A., Memon, R. A., Joop, A., Pilkington, J., Catiul, C., . . . Amara, A. W. (2021). Slow Wave Sleep and EEG Delta Spectral Power are Associated with Cognitive Function in Parkinson's Disease. J Parkinsons Dis, 11(2), 703-714. doi:10.3233/JPD-202215
Care Partner Deep Dive: Three Experts Discuss Sleep, Cognition and Mood in Parkinson's
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.
→ Take our care partner program Cognitive Changes on a Continuum to learn more about caring for a loved one experiencing cognition changes.
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.
→ Hear from a Parkinson’s expert and two care partners highlight The Role of Sleep in this care partner program.
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.
Pandemic Fast-Tracks Future of Digital Therapies for Parkinson’s Community
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.
Ellis, T. D., & Earhart, G. M. (2021). Digital Therapeutics in Parkinson's Disease: Practical Applications and Future Potential. J Parkinsons Dis, 11(s1), S95-S101. doi:10.3233/JPD-202407
Schneider, R. B., Omberg, L., Macklin, E. A., Daeschler, M., Bataille, L., Anthwal, S., . . . Parkinson Study Group, A. T. H. P. D. I. (2021). Design of a virtual longitudinal observational study in Parkinson's disease (AT-HOME PD). Ann Clin Transl Neurol, 8(2), 308-320. doi:10.1002/acn3.51236
Neuro Talk: Top 3 Parkinson’s Research Areas We Fund
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.
