For most people, being in the hospital is a stressful experience. People are usually sick or experiencing a health issue. For people with Parkinson’s disease (PD), their symptoms may get worse, and new symptoms, like confusion or thinking changes, can develop because of stress, infection, fatigue, sleep disturbances, surgery or new medications.

A new published review of more than 35,000 hospital admissions of people with Parkinson’s found an increased risk of delirium and aspiration pneumonia as potentially avoidable complications. 

As we share in our Hospital Safety Guide, preparation and clear communication can help you minimize complications and recovery time when hospitalized. Understanding the risks you or a loved one with Parkinson’s face and ways to have your needs met can help the hospital care team provide the best possible care. 

Know how to identify Delirium

Delirium is a reversible change in a person's level of attention and concentration. 

Anti-nausea, gastrointestinal and pain medications, which are routinely given before and after surgery, can worsen existing PD symptoms or cause new, temporary symptoms like delirium. Avoiding these medications can decrease your risk of developing delirium.

Additionally, some common treatments for delirium aren’t appropriate for people with PD, and can make Parkinson’s symptoms and the delirium worse. If you or a loved one develop delirium in the hospital, it is important to avoid the antipsychotic medications that are antidopaminergic, meaning they decrease the amount of dopamine in the brain. 

People with Parkinson’s should only be given one of the three antipsychotics that are safe: 

1. Pimavanserin (Nuplazid)
2. Quetiapine (Seroquel)
3. Clozapine (Clozaril). 

All psychotics, with the exception of these three, should be avoided in nearly all circumstances.

Read our list of medications to avoid

Know the signs of Aspiration Pneumonia 

Aspiration pneumonia accounts for 70% of deaths among people with PD, according to an NIH study. 

Aspiration pneumonia is an infection that happens when bacteria from your mouth gets pulled down into the lungs and causes an infection. This can happen after a person aspirates, meaning they swallow the wrong way, and something enters their airways or lungs. Aspiration occurs more frequently when someone has issues with swallowing (dysphagia), which is a common Parkinson’s symptom. 

To prevent aspiration and aspiration pneumonia, people with Parkinson’s need to be screened for swallowing changes, also known as dysphagia, to safely maintain their medication routine and minimize their risk of aspiration pneumonia and weight loss. 

In addition, ensuring that you or your loved one with Parkinson’s get their Parkinson’s medications on time and avoid contraindicated medications that are not safe for people with Parkinson’s can also help prevent the development of new dysphagia or the worsening of mild dysphagia. 

Tips to avoid delirium and aspiration pneumonia in the hospital

Tip 1.  Avoid medications that are not safe for Parkinson’s. 

This can potentially help you to:

• Prevent delirium caused by taking contraindicated anti-nausea medications
• Prevent worsening of delirium caused by taking contraindicated antipsychotic medications

Review the list of harmful medications on the Parkinson’s Care Summary with your hospital care team before surgery and before any new medication is prescribed.

Tip 2. Take medications on time, every time to help prevent new or worsening swallowing challenges. 

If your nurse or speech-language pathologist is concerned about your swallowing ability, discuss safe ways to continue taking your medications, such as with a sip of water or crushed with applesauce.

Use the Medication Form to list all your medications for Parkinson’s and other conditions, including over-the counter medications and supplements in the order that you take them each day. Your list should be clearly labeled with the dosage (usually mg or milligrams) and the specific time that you take each medication.

Download the Medication Form

Tip 3. Tell your nurses if you are having trouble swallowing and ask to see the Speech Language Pathologist (SLP). 

Together, your nurse and SLP can provide safety measures to decrease risks.

You may need to temporarily stop eating and drinking if you have a serious swallowing issue (dysphagia) or are scheduled for a medical procedure that requires fasting. If you or your loved one are instructed you cannot swallow pills, show the nurse and SLP “Other Ways to Take your Medication” to explore potential ways to safely continue taking Parkinson’s medications

If you have swallowing or speech symptoms, we recommend you regularly see a speech language pathologist. Once discharged, ask your doctor for a referral, or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Tip 4. Reducing the risk of aspiration pneumonia is a two-part process.

Help reduce aspiration pneumonia when hospitalized and at home that involves (1) preventing swallowing issues and (2) reducing bacteria in your mouth by cleaning your teeth and mouth regularly. Learn more about dental health and Parkinson’s.

Prevent aspiration by eating when PD meds are working and you have energy. It can also help to sit up for meals and take smaller bites. Prevent aspiration pneumonia by brushing your teeth, tongue and mouth before and after eating to reduce bacteria. 

Read more about the steps you can take to avoid delirium, aspiration pneumonia, and other avoidable complications in our Hospital Safety Guide.

Help Spread the Word

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When it comes to Parkinson’s disease (PD), non-movement symptoms are often overlooked because they are not as visible as those of their movement counterparts. However, these symptoms can be just as challenging to everyday life. Learning the common signs can help you recognize and manage symptoms.

Explore our podcast episodes where we dive into non-movement symptoms. Each episode highlighted below strives to deepen your understanding of these symptoms, as well as offer strategies for managing them.

Let us know what other topics you would like to hear about

Apathy

Episode 151: Strategies to Address Apathy and Exercise Motivation

Apathy, a lack of interest or motivation, can be an issue for people with Parkinson’s and may interfere with daily activities, social interactions and overall well-being. Movement Disorders Neurologist, Nabila Dahodwala, MD, MS, Director at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, explains the impact of apathy on daily life and shares strategies to help address it and find the motivation to exercise.

Depression

Episode 145: Treating Depression

Depression is often overlooked and undertreated, despite it being a common symptom of Parkinson’s. Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary, a Parkinson’s Foundation Center of Excellence, discusses the importance of recognizing and treating depression.

Low Blood Pressure

Episode 144: How to Cope with Blood Pressure Fluctuations

Low blood pressure, also known as hypotension, can be dangerous if not treated. It may cause dizziness, fainting and falls, which can lead to fractures. Jeni Bednarek, RN, BSN, ACRP-CP, the team coordinator at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence, talks about how people with Parkinson’s can manage low blood pressure.

Nausea

Episode 135: Feeling Nausea with Parkinson’s

Nausea, or the feeling of discomfort in the stomach, can sometimes be caused by Parkinson’s, or as a side effect of medications. Andrew Feigin, MD, Professor of Neurology and Director of the Fresco Institute for Parkinson’s and Movement Disorders at New York University Langone Medical Center, a Parkinson’s Foundation Center of Excellence, discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.

Sleep Disorders

Episode 121: Parkinson’s Disease and Sleep

Difficulty sleeping can impact your overall health and well-being. Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, discusses the causes of sleep problems, including insomnia, REM sleep behavior disorder and daytime sleepiness.

Subscribe to our podcast. Search for “Substantial Matters: Life and Science of Parkinson’s” on your favorite podcast platform.

Listen to every episodes at Parkinson.org/Podcast

Sleep recharges our brains and bodies, while boosting mental wellness. People living with Parkinson’s disease (PD) need even more time to reset and restore. Discover how Parkinson’s symptoms, medications or other health problems can impact your sleep, and what you can do to maximize slumber.

This article is based on Trouble with Zzz's: Sleep Challenges with Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented Aleksandar Videnovic, MD, MSc, associate professor of neurology at Harvard Medical School and director for the Massachusetts General Hospital Division of Sleep Medicine and Program on Sleep, Circadian Biology and Neurodegeneration.

Aging, PD and Trouble with Sleep

As people age, it may be harder to fall asleep and waking up at night can be more frequent. Parkinson’s can further disrupt restorative sleep. As many as 80-90% of people with Parkinson’s can experience a sleep problem during the course of the disease.

Parkinson’s-related brain changes upset the circadian system, sometimes called the body’s internal clock. PD also impacts sleep drive — the growing sensation as day turns to night of the need to sleep. Other elements of PD that can disrupt slumber include:

• Parkinson's symptoms, such as tremor or PD-related pain, may emerge overnight as medications wear off. Other symptoms include akinesia (difficulty moving or inability to move), rigidity, dyskinesia (erratic, involuntary movement) and more.
• Medications used to treat PD can interfere with sleep. Others can make it harder to stay alert during the day.
• Depression and anxiety are extremely common PD symptoms. These and other symptoms, such as hallucinations, can keep a person awake at night.
• Changes to the autonomic system, the body’s network for regulating jobs like breathing and blood pressure, impact sleep. Nocturia — excessive nighttime urination — can be common in PD.

Sleep disorders can be exhausting for a person with Parkinson’s, as well as their bed partner. These can include:

• Obstructive sleep apnea and other sleep-disordered breathing can obstruct the airway repeatedly during sleep, resulting in coughing, choking and frequent waking. People with sleep-disordered breathing experience microarousals, waking up to 60 times hourly, without recognizing it. Sleep apnea affects up to 10% of the population, impacting people without Parkinson’s and those with PD with the same frequency.
• Excessive daytime sleepiness (EDS) may make it difficult to stay awake during daylight hours or cause sudden daytime sleep. PD brain changes and symptoms, medication regimens, co-existent sleep disorders and age-related physical changes can all cause EDS. Up to 16% or more of people with PD may experience poor daytime alertness. Some may be unaware of how EDS affects them. A trusted companion can offer honest input. Sometimes, sleep attacks can come on without any warning, significantly impacting a person’s ability to drive safely.
• Restless legs syndrome (RLS), an uncomfortable feeling in the legs or feet and irresistible need to move, can impact some people even prior to a PD diagnosis. However, not everyone with Parkinson’s experiences RLS, nor will most people who experience RLS go on to develop PD.
• Rapid eye movement (REM) sleep behavior disorder (RBD): People dream and experience muscle relaxation during REM stage of sleep. RBD can affect up to half of people with Parkinson’s, impacting muscle relaxation and causing people to act out their dreams — talking, yelling or moving about.

Like restless legs syndrome, RBD can begin long before a Parkinson’s diagnosis. Although not everyone who lives with RBD will develop Parkinson’s, their risk of developing PD or Dementia with Lewy Bodies — diagnosed when cognitive decline happens before or alongside motor symptoms  —  is significantly higher. This is meaningful for Parkinson’s research.

As potential therapies evolve to slow PD progression, there may be a window of opportunity for preventative intervention in people who experience REM sleep behavior disorder but have yet to develop a neurodegenerative disease.

Management Strategies for Fragmented Sleep

Talk to your healthcare provider about sleep issues, fatigue or daytime sleepiness. Your doctor may ask questions about your sleep history. A careful review of each or your medications will help your doctor determine whether a simple adjustment or addition might improve slumber:

• Long-acting levodopa or additional levodopa is sometimes prescribed for bedtime use.
• Catechol-O-methyl transferase (COMT) is an enzyme in the body. It can impact the effectiveness of levodopa. COMT inhibitors prolong the benefits of levodopa. These are primarily used for wearing off (changes in the ability to move between doses of levodopa) but are sometimes also prescribed with levodopa for use at night.
• People taking diuretics might be directed to use them earlier in the day. Likewise, limiting the use of PD medications selegiline and amantadine later in the day might improve insomnia.
• Anticholinergic medications are sometimes used for nocturia, however, cognitive slowing can be a side effect. These can also cause confusion and hallucinations and are not recommended in older people.
• Caffeine and some stimulant medications can promote alertness during the day.

Mental wellness: Talk to your doctor about symptoms of depression or other emotional challenges. Parkinson’s impacts areas of the brain that regulate mood, sleep, energy and more. Caring for mental health also benefits sleep.

Sleep disorders: If your doctor suspects a sleep disorder such as obstructed breathing, restless legs or RBD, you might be referred for a sleep study in a sleep clinic.

• Sleep apnea treatment may require a dental appliance or a continuous positive airway pressure (CPAP) machine that is worn when sleeping or napping.
• Dopamine agonists — medications that rouse areas of the brain motivated by dopamine — benzodiazepines, opioids and a class of medications known as calcium channel alpha-2 delta ligands, such a gabapentin, are sometimes used for restless legs syndrome. Dopamine-blocking, anticholinergic and antihistamine medications should be avoided for RLS.
• Your doctor may recommend melatonin or the medication clonazepam for RBD. While antidepressants may help with some aspects of insomnia, some can unmask or worsen RBD.

Tips to Improve Shut-eye

A healthy sleep routine — sometimes called sleep hygiene — is another key component to a good night’s rest. Try these small changes that can make a big difference:

• Exercise regularly (aim for early in the day) to improve sleep quality and overall function.
• Limit naps: a short snooze earlier in the day, of 30 minutes or less, is less likely to interfere with nighttime sleep. 
• Avoid stimulants, such as caffeine, later in the day.
• Minimize your screen time before bed. Avoid screens entirely — including TV and mobile devices — in the bedroom.
• Go to sleep and rise at the same time, weekdays and weekends.
• Turn the lights out: light regulates the body’s clock, signaling that it is time to wake.
• Employ motion-detecting nightlights to safely guide you to the bathroom.
• Sleep in a wider bed that is lower to ground. This can minimize injuries and lessen the impact in case of an accidental fall.
• Consider a bedside rail to prevent falls; a bedside commode can also be helpful for people who have difficulty getting to the toilet at night.
• Use satin or silk sheets or pajamas to make it easier to turn in bed.

Adequate hydration can improve PD symptoms, boosting low blood pressure and easing constipation. However, drinking liquids too close to bedtime can cause frequent nighttime urination. Minimize beverages a few hours before bed.

Research

Light hitting the eyes is one of the biggest environmental factors regulating the circadian system. The timing of meals, exercise, naps and rest also influences our body clock. In turn, this timer regulates our mood, behavior, immune response and more. Researchers are exploring ways to improving circadian system function in PD.

Light therapy shows great promise as a noninvasive, widely available, nonpharmacological treatment to ease non-movement symptoms of Parkinson’s, including fatigue, sleep issues and mood changes.

In a 2017 JAMA Neurology journal study, Videnovic et al. found that exposure to bright light (10,000 lux) or dim-red light (less than 300 lux) — twice daily in one-hour sessions over two weeks — improved daytime alertness and sleep quality.

Those findings were carried over into the recently completed ENLITE PD trial conducted at 25 sites across North America. The study analyzes the effect of daily light therapy on PD symptoms, including sleep. At the time of this Expert Briefing, the study’s authors were preparing to submit their findings for publication, with the aim of conducting a phase III clinical trial.

Learn More

To learn more about Parkinson’s and sleep explore these resources:

• Parkinson’s Disease and Sleep
• Sleep Disorders
• Care Partner Deep Dive: Three Experts Discuss Sleep, Cognition and Mood in Parkinson's

The National Parkinson’s Project is a first-ever federal initiative to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression. The National Parkinson’s Project is being carried out under the National Plan to End Parkinson’s Act, by the Secretary of Health and Human Services (HHS).

What’s Next

The U.S. Department of Health and Human Services is building a supporting advisory council to develop the National Parkinson’s Project. This is a collaborative effort, as government agencies and leaders in the PD space, including the Parkinson’s Foundation, will provide essential community input and planning support.

The National Parkinson’s Project will encompass research, care, and services for Parkinson’s and all other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.

To receive updates on the Act, please sign up for the NIH listserv.

January 2025 Update

National Plan to End Parkinson's Update: NIH Seeks Nominations for Advisory PD Council

The National Institutes of Health (NIH) has received a delegation of authority to lead the implementation of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, which was signed into law on July 2, 2024. Along with the HHS Office of the Assistant Secretary for Health (OASH), the National Institute of Neurological Disorders and Stroke (NINDS), part of NIH, will co-chair the Advisory Council on Parkinson’s Research, Care, and Services called for in this Act.

The NIH, with support from OASH and in collaboration with the Council, will create, maintain, and periodically update a National Plan to prevent, diagnose, treat and cure Parkinson’s, as well as stop disease progression.

The National Plan will encompass research, care, and services for Parkinson’s disease (PD) and all other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.  

To receive updates on the Act, please sign up for the NIH listserv.

September 2024 Update

President Biden Signs Parkinson's Bill into Law 

How to Make an Impact on Parkinson’s National Day of Action

On September 17, 2024, thousands of policy advocates across the country will virtually rally together to urge elected officials to take steps to better understand and address environmental risk factors for Parkinson’s disease (PD).

Led by the Unified Parkinson’s Advocacy Council, the Parkinson’s National Day of Action is entirely virtual, and it only takes a few minutes to participate! On September 17:

1. Sign a petition to the White House urging them to ban paraquat, a harmful herbicide thought to increase Parkinson’s risk by as much as 500%.
2. Call your member of Congress to ask them to cosponsor the HEALTHY BRAINS Act (H.R. 9233). This new bill would direct the federal government to research environmental risk factors for neurodegenerative diseases like Parkinson’s.
   • Call Congress directly from your phone by looking up your senators’ and representatives’ office numbers online or by calling the U.S. Capitol Hill switchboard at 202-224-3121 and ask to be connected to their offices.

More than 1 million Americans live with Parkinson’s, the second most common and fastest growing neurological disease. Help us get closer to a cure by participating in the Parkinson’s National Day of Action!

July 2024 Update

On July 2, 2024, President Biden signed the National Parkinson's Project into law. This is the first-ever federal legislation dedicated to ending Parkinson’s disease (PD).

Top five ways this monumental bill can make an impact:

1. Dramatically increase federal research funding
2. Develop more effective pathways for treatments and cures
3. Improve early diagnosis
4. Spark new and improved models for patient care
5. Address health disparities in diagnosis, treatment and clinical trial participation

“The Parkinson’s Foundation is excited for what comes next,” said John Lehr, Parkinson’s Foundation President and CEO. “We look forward to having input in designing exactly how this bill will mobilize meaningful change for the one million Americans living with this disease.”

The Parkinson’s Foundation would like to thank all the PD advocates, volunteers and people who wrote to their senators and representatives to make this bill to become law. We also thank President Biden and members of the U.S. Senate and House of Representatives for helping us make PD history.

Spread the word!

Share this monumental victory on your social media channels! Get friends and family excited that Parkinson’s disease has received legislative support.

Share the news on social media. Click here.

Timeline at a Glance:

• July 2, 2024: President Biden signs the National Parkinson's Project S.1064/H.R.8585), the first-ever federal legislation dedicated to ending Parkinson’s.
• May 23, 2024: U.S. Senate passes the Act.
• December 14, 2023: U.S. House of Representatives passes the Act.
• March 29, 2023: the Act is reintroduced in the House and Senate for the 2023 session.

What’s Next?

Follow us on social media (Facebook, X, Instagram and others) to stay up to date on what happens next. We are excited to document the process and any movement spurred by the new Act and our involvement alongside the Michael J. Fox Foundation and other leaders in the PD space to establish next steps.

May 2024 Update

On May 23, 2024, the U.S. Senate unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease (PD). Next, the bill will be sent to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives in December.

“As we eagerly await the bill to be signed into law, we applaud members of congress for their bipartisan support and recognition of one of the most pressing health care issues of our day,” said Parkinson’s Foundation President and CEO John L. Lehr. “On behalf of the Parkinson’s Foundation, I’d like to thank members of the United States Congress for joining the Michael J. Fox Foundation for Parkinson’s Research, the Unified Parkinson's Advocacy Council and the greater PD community in the fight against Parkinson’s disease.”

This monumental bill has the potential to shape the lives of the one million Americans living with Parkinson’s. It is designed to:

• Dramatically increase federal research funding
• Develop more effective pathways for treatments and cures
• Improve early diagnosis
• Spark new and improved models for patient care
• Create standards and measures to prevent Parkinson’s disease
• Address health disparities in diagnosis, treatment and clinical trial participation
• Enhance public awareness of the disease

Timeline at a Glance:

• On May 23, 2024, the U.S. Senate passed the National Plan to End Parkinson’s Act S.1064/H.R.8585), the first-ever federal legislation dedicated to ending Parkinson’s.
• On December 14, 2023, the Act passed through the U.S. House of Representatives.
• On March 29, 2023, the Act was reintroduced in the House and Senate for the 2023 session.

What’s Next?

Once President Biden signs the bill into law, the Federal government will begin to establish actionable steps to carry out the plan. The Parkinson’s Foundation looks forward to working alongside the Michael J. Fox Foundation and other leaders in the PD space to help throughout this process.

Content provided by The Michael J. Fox Foundation for Parkinson’s Research (MJFF). Read the MJFF blog article here.

December 2023 Update

Congress Reintroduces the National Plan to End Parkinson’s Act

On December 14, 2023, The National Plan to End Parkinson’s Act (S.1064/H.R.8585) passed through the U.S. House of Representatives. Next, the bill will go to the U.S. Senate. 

Now is the time to have all of your members of Congress sign on to support the bill so it will pass this session!

Your senators and representatives need to hear from members of the Parkinson’s community about why we need a focused, national strategy to prevent Parkinson’s, find a cure, and ensure those living with the disease can access care.

Specifically, we encourage members of the Parkinson’s community in the U.S. to Call Your Members of Congress.

• Call Congress directly from your phone by looking up your senators’ and representatives’ office numbers online or by calling the U.S. Capitol Hill switchboard at 202-224-3121 and asking to be connected to their offices.

VIEW THE CALL SCRIPT

On July 28, 2022, the U.S. House of Representatives introduced the first-ever legislation solely devoted to ending Parkinson’s. This is a historic moment for the Parkinson’s community!

The National Plan to End Parkinson’s Act will, for the first time, unite the federal government and private enterprises in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and ensure those living with the disease have access to the care they need.

This bipartisan legislation is led by Representative Paul Tonko (D-NY) and Representative Gus Bilirakis (R-FL). The Parkinson’s community is thankful for its leadership.

Now what?

This bill will go through the traditional congressional process and will need to be voted on by the House. A Senate’s companion bill will be introduced in the coming weeks, because it is standard congressional procedure for both chambers of Congress to pass the bill before it can go to the President for signature.

Why a national plan and why now?

Parkinson’s is a disease that requires a national effort to cure and prevent. The economic burden of Parkinson’s disease (PD) and atypical parkinsonism (AP) has grown faster than researchers previously estimated, reaching nearly $82.2 billion in 2024.

A national plan to end Parkinson’s has the potential to:

• Dramatically increase federal research funding
• Develop more effective pathways for treatments and cures
• Improve early diagnosis
• Spark new and improved models for patient care
• Create standards and measures to prevent Parkinson’s disease
• Address health disparities in diagnosis, treatment and clinical trial participation
• Enhance public awareness of the disease

The public-private advisory council created as part of this legislation will report every year to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.

The Parkinson’s Foundation is a member of the Unified Parkinson’s Advocacy Council (UPAC), a collection of nearly 30 Parkinson’s organizations that come together to help shape federal and state public policy in ways that support the Parkinson’s community. There will be many opportunities for all of us to engage our Members of Congress on this legislation and have conversations about the bill and its intended impact, and we will begin to communicate those opportunities in the coming weeks.

Content provided by The Michael J. Fox Foundation

We will update this blog and our social media channels as the legislation advances, so stay tuned! Follow us on Facebook, Instagram and Twitter.