Shakiness, slowness and stiffness – key Parkinson’s disease (PD) motor symptom challenges – can be frustrating. Your PD doctor and other PD healthcare experts, such as an occupational therapist (OT), can offer management strategies to ease movement difficulties. Addressing movement issues early can keep you living your best life.

This article is based on a Parkinson’s Foundation Expert Briefing series on Symptom Management: Is it PD, Medication or Aging? “Exploring Motor Symptoms Co-Management: Occupational Therapy and Neurology” was presented by Lisa Warren, MHS, OTR/L, Occupational Therapist and Rehabilitation Manager, University of Florida Health Rehab, Norman Fixel Institute for Neurological Diseases, a Parkinson’s Foundation Center of Excellence; Parkinson’s Foundation National Medical Advisor Dr. Michael S. Okun, Adelaide Lackner Professor, Chair of Neurology and Executive Director Norman Fixel Institute; and Gretchen Rosswurm, 2020 Chair of the Parkinson's Foundation People with Parkinson's Council.

Cardinal PD Motor Symptoms

While there is no specific test to identify Parkinson’s disease, there are telltale primary – or cardinal – motor signs. These include:

• bradykinesia, the medical term for slowness of movement.
• tremor, or shakiness.
• rigidity and stiffness.
• postural instability or balance changes.

These symptoms stem from a drop in the brain’s production of the chemical dopamine. When considering a PD diagnosis, a neurologist who has PD expertise looks for bradykinesia accompanied by either stiffness or tremor.

Co-Managing Movement Issues

Both your neurologist and occupational therapist use different methods to tackle motor difficulties. Integrating multidisciplinary movement therapies can help you move easier.

Bradykinesia

We all tend to move a bit more slowly as we age. Bradykinesia – PD-associated physical slowness – is more unpredictable and exaggerated than typical age-related slowness. It can manifest as difficulty initiating movement. Or you may experience unusual stillness, decreased facial expression or need more time to complete daily tasks.

Your doctor may review the medications you are taking to ensure optimal delivery or might recommend taking your medications up to an hour before tasks that require dexterity.

An occupational therapist may recommend allowing extra time to accomplish tasks or can suggest activities that boost dexterity, such as shuffling and dealing cards. And remember, it’s OK to choose accuracy over speed. Give yourself permission to take the time you need.

The formula to living well with Parkinson’s is different for everyone. Be flexible and commit to working with your healthcare team to discover what works for you.

Tremor

People who live with Parkinson’s generally experience tremor as a shaky hands, legs or chin, often occurring at rest. Tremor typically affects one side of the body. Severity can fluctuate throughout the day – and from day to day.

Doctors often treat resting tremor with combination carbidopa/levodopa medication therapy. This temporarily replenishes dopamine to ease movement. But more than 20 percent of people living with PD can experience medication-resistant tremor. In these cases, a movement disorder specialist can recommend other therapies, including deep brain stimulation (DBS) – a procedure where electrodes are implanted into certain areas of the brain and connected to an implanted pulse generator to block nerve signals that make movement difficult.

Emotional and physical stress can also increase tremors. An occupational therapist can recommend therapies to combat your specific triggers – from meditation and creating a comfortable sleeping environment to adapting a favorite hobby.

Check out the PD Health @ Home online program called Mindfulness Mondays to discover ways to decompress.

Rigidity

This PD-related stiffness can occur throughout the body. Rigidity may cause painful cramping, such as dystonia – muscle spasms and clenching associated with Parkinson’s.  Stiffness can occur on one or both sides of the body.

One of the best things you can do to combat rigidity is to take your medication on time, every time. If that isn’t working, your doctor may augment your medications or consider Botulinum toxin injections, which can sometimes relax overactive muscles.

Stress management and regular exercise can also ease rigidity and improve many other symptoms of Parkinson’s. An occupational therapist can recommend stretches specific to your needs. Warm up, then stretch your muscles before putting them to work. Be sure to talk to your doctor before starting any new exercise.

Stretch frequently, minimize stress and consider practicing yoga. The Parkinson’s Foundation offers online PD Health @Home Fitness Fridays to help you stay active at home.

Postural Instability

It's important to remain active with Parkinson's. However, people who live with PD can experience balance changes that increase the risk for falls and injury. Your healthcare team can give you strategies to keep moving safely.

Your movement disorder neurologist should perform a balance test that involves your shoulders at every visit. Your reaction to the test helps your doctor determine instability issues and potential treatment.

Integrate early, consistent, year-round physical and occupational therapy and exercise that focuses on balance. Ensure your home is free of clutter. Make it safe and easy to navigate. Minimize multitasking when you are walking; focus on walking and moving safely. Take big steps and walk with confidence.

Explore the Parkinson’s Foundation publication Fitness Counts to learn posture and balance tips and safe ways to get up from a fall.

Find Expert Care

Call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org to find skilled Parkinson’s healthcare – including occupational, physical and speech therapy – in your area.

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):

• Parkinson.org/Marijuana
• Medical Cannabis Convening Findings: Top Takeaways and Guidance
• Ask the Experts: The Challenges of Using Marijuana as a Parkinson’s Treatment, Part 1 and Part 2 
• Marijuana and Parkinson’s: What Do We Really Know?

Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana or by calling our Helpline at 1-800-4PD-INFO.

Life as we knew it changed on January 30, 2020. That was that day when the World Health Organization (WHO) officially declared the COVID-19 outbreak to be a Public Health Emergency of International Concern. Caused by Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), COVID-19 can result in serious, life-threatening complications, regardless of one’s age, race, health status, geographical location, or socio-economic income and including people with Parkinson’s disease. In this article, we’ll examine a new study from a Parkinson’s Foundation Center of Excellence, Nijmegen Parkinson’s Center in the Netherlands, which recommends the COVID-19 vaccination for people with Parkinson’s, unless there is a specific contraindication.

Overall, we know that people with PD who contract COVID-19 are more likely to experience severe respiratory issues and have more difficulty recovering from COVID-19 – particularly among those with advanced PD, compared to people who do not have PD. Another additional concern for those with PD is that COVID-19 may trigger a worsening of both motor and non-motor symptoms and also may increase the risks of mental health challenges. These mental health challenges are known to be higher for people with PD living under social isolation, higher stress levels and without adequate exercise.

The good news is, there is hope on the horizon. Pharmaceutical companies Pfizer/BioNTech  and Moderna each received Emergency Use Authorization from the U.S. Food & Drug Administration (FDA) for their respective messenger RNA (mRNA) two-dose vaccines. In terms of safety, of the over 42 million people in the United States who have received at least one of these vaccines, severe, life-threatening allergic reactions have been rare, i.e., Pfizer less than 11.1 cases per one million doses, and Moderna 2.5 cases per million doses administered.

Expert commentary recently published in the Journal of Parkinson’s Disease, titled, “COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel?” (Bloem et al., 2021), tackles the question of getting the COVID-19 vaccine for people with Parkinson’s using a scientific, evidence-based approach. Bas Bloem, MD, PhD, works at the Radboud University Nijmegen Medical Centre, a Parkinson’s Foundation Center of Excellence. The Nijmegen Parkinson Center is one 14 international Centers of Excellence and 33 others in the United States.

These experts closely studied the development and approval processes – including the thorough analyses of completed Phase III data as provided by vaccine developers in a transparent process with peer-reviewed publication of the full data sets. In other words, Bloem et al. (2021) were privy to all of the actual data, not just cherry-picked data. Additional COVID-19 vaccination information was provided by the Scientific Issues Committee (IPMDS-SIC) of the International Parkinson and Movement Disorder Society.

Results

• Compared to the general population, the risk of SARS-CoV-2 infection causing serious, life-threatening disease seems higher for people living with PD, at least among those with more advanced disease.
• The approved mRNA-based vaccines are not known or expected to interact with the PD neurodegenerative process.
• COVID-19 vaccination is not known to interfere with the current PD therapies.
• The types or incidence of side effects of these vaccines in persons with PD were observed to be no different than in the general population – pain and irritation at the injection site, fatigue, muscle pain, headache, low fever/chills.
• The vaccines were observed to be safe for older adults, however caution is needed for the specific subgroup of very frail and terminally ill elderly persons with PD living in long-term care facilities; or for people with PD who have additional chronic illnesses.
• Taken together, (Bloem et al., 2021) recommend COVID-19 vaccination with approved vaccines for persons with PD, unless there is a specific contraindication.
• Vaccinated persons with PD must continue to comply with the public health guidelines to reduce exposure and to possibly reduce transmission of COVID-19.
• Insights may change, conscious monitoring of newly emerging data from both trials and real-life vaccination programs is critical.
• The authors did not examine the recently US FDA approved vaccine produced by Johnson & Johnson so persons with Parkinson’s and family members should not extrapolate the data from this recent study to apply to the new single dose vaccine.  Hopefully more information on this approach will be available soon.

What Does It Mean?

Both the Pfizer/BioNTech and Moderna mRNA vaccines met the high standards required for use authorization after rigorous data scrutiny and validation – as required in the normal US FDA vaccine approval process. This process is essential in determining not only safety and efficacy, but also that the vaccine benefits outweigh its risks. Today, in the United States, the death toll from COVID-19 topped 500,000 people; worldwide, it has been associated with more than 2,462,000 deaths. 

Based upon the available data, the incidence of side effects in persons with PD have not been different than in the general population. The approved mRNA-based vaccines, Pfizer/BioNTech and Moderna:

1. do not interact with the neurodegenerative process in PD
2. have been shown to be highly effective in preventing the severe and even the mild forms of the disease
3. help the body more rapidly clear the infection. High efficacy (>90%) has been demonstrated regardless of race, gender, age, and medical conditions. How big of deal is greater than 90 percent efficacy? During the 2019-20 flu season in the United States, the overall effectiveness of the seasonal flu vaccine in children and adults was about 45 percent.

In their MDS COVID-19 Vaccine Statement for Patients, the International Parkinson and Movement Disorder Society and its Scientific Issues Committee included the following, “All considered, we have encouraged our community of health specialists to recommend COVID-19 vaccination to their patients with PD (or their responsible caregivers) unless there is a specific reason that precludes administration. We also recommend that patients come forward to seek the vaccine as quickly as it is available.”

Finally, as stated by the experts, Bloem et al., (2021), even after being fully vaccinated, it is important that persons with PD continue complying with the public health guidelines to reduce exposure and transmission of COVID-19 as recommended by WHO and the CDC.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Covid-19 and PD by vising the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Parkinson’s & the COVID-19 Vaccine
• Covid-19 & Parkinson’s
• Kit Contents: Hospitalization During COVID-19 Doctor Letter
•  COVID-19 vaccines and rare severe allergic reactions

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.”

As the Pfizer/BioNTech, Moderna and Johnson & Johnson COVID-19 vaccines become more widely available across the United States, and data shows vaccine safety and benefit in those with Parkinson’s disease (PD), people are looking to brighter days ahead. This Facebook Live was conducted prior to U.S. Centers for Disease Control Announcement (CDC) that they will be pausing Johnson & Johnson vaccines out of an abundance of caution while investigating reports of rare and potentially dangerous blood clots. Dr. Anthony Fauci from NIH has stated that people who have already received the Johnson & Johnson vaccine will still receive the COVID-19 benefits. Continued monitoring for potential blood clots should be performed with your local doctor.

In an April 8 Parkinson’s Foundation Facebook Live event, “Life with Parkinson’s After the Covid-19 Vaccine,” Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, answered questions from the PD community about what post-vaccine life might look like.

“We have seen a categorical worsening of Parkinson’s symptoms during the COVID-19 pandemic and that's because people have been stuck at home without the ability to seek care,” Dr. Okun said. “Vaccines are one of the things that are going to help.”

Learn More

The Parkinson’s Foundation is committed to keeping you up to date on the latest COVID-19 and PD developments at Parkinson.org/COVID.

Call our free 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.

It was first suggested in the 1960’s that people with type-2 diabetes are at increased risk for developing Parkinson's disease (PD) – and when they do develop PD, its progression is faster and often more severe. This may be due, in part, to an apparent relationship in the brain between dopamine, insulin resistance, and glucose control. Insulin is not only made in the pancreas, it’s also present in the brain – where it has been shown to impact dopamine levels.

Parkinson’s is generally believed by scientists to be caused by the loss of dopamine-producing neurons. Parkinson’s symptoms, such as slowness, rigidity, and tremor, typically develop after approximately 40-80% of these dopamine-producing neurons die.

Why does this matter? Currently, more than 30 million people in the United States have type-2 diabetes, and that number is growing. The lifetime risk of developing Parkinson's is also on the rise. In light of these trends, it would be valuable to know whether any specific type-2 diabetes medications might be associated with an increased or decreased risk for developing PD.

A 40-month cohort study of over 100,000 patients with diabetes (Brauer et al., 2020) published in the journal, Brain, titled “Diabetes medications and risk of Parkinson's disease” examined the association between type-2 diabetes medications and the risk of developing Parkinson’s. Using patient medical records, the study authors compared the risk of developing PD in patients diagnosed with type-2 diabetes who took the following oral diabetes medications in various combinations:

1) Thiazolidinediones (also called glitazones), like pioglitazone (Actos) or rosiglitazone (Avandia), which specifically target insulin resistance

2) Drugs, like albiglutide (Tanzeum) or dulaglutide (Trulicity), that mimick glucagon-like peptide-1 (GLP-1) a hormone that promotes insulin secretion, and

3) Dipeptidyl peptidase 4 (DPP4) inhibitors, which increase GLP-1 levels, and lead to insulin secretion and lowering of blood sugar levels

The control (comparison) group were those individuals prescribed any other oral combination therapy for diabetes, such as metformin and sulfonylureas.

A wide variety of sophisticated mathematical analyses were conducted ­– with age, gender, smoking status, body mass index (BMI), and other known diabetes risk factors taken into account.

Results

• The rate of Parkinson’s disease was 36–60% lower in the people who took DPP4 inhibitors and/or GLP-1 receptor agonists.
• There was no evidence of any association between the use of glitazones  and Parkinson’s disease.
• No other medication or combination of medications demonstrated any statistically significant effect.

What Does This Mean?

In this large population-based cohort study, taking the medications DPP4 inhibitors and/or GLP-1 receptor agonists was associated with a lower rate of Parkinson’s disease. Based upon these findings of the possible protective effect of these medications, further studies are warranted and are currently underway. However, it is also important to note that an association is not the same as a causation. There may be other factors associated with taking certain type-2 diabetes medications that influence Parkinson’s risk.

Additionally, as noted by the study authors, while the results of this study may be useful for clinicians to take into account when choosing oral medications for treating diabetes, these preliminary results, “[…]cannot inform on the usefulness of specific drug classes on the rate of progression of Parkinson’s disease after diagnosis, nor on their efficacy among patients with Parkinson’s disease in the absence of diabetes" (Brauer et al., 2020, p. 3075). In other words, it’s too soon to tell, but the next phase of their research is already underway, where hopefully more definitive answers will be found.

Learn More

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

• Parkinson’s Disease and Insulin Resistance
• What’s Hot Medication Edition: Exenatide and Gocovri

Imagine being diagnosed with an incurable neurological disease, but afraid to reveal your identity because you might be denied care or enrollment in a clinical trial. Unfortunately, for many within the LGBTQ+ population living with Parkinson’s disease (PD), this is a common reality. Chi-Ying Roy Lin, MD, MPH, is an incoming neurologist at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, who is advocating for the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) Parkinson’s community through research.

In his previous role as a Parkinson's Foundation Movement Disorders Fellow at New York-Presbyterian Hospital/Columbia University Medical Center, Dr. Lin noticed some life-altering issues his patients were grappling with. “Movement disorders is one of the least researched areas in the LGBTQ+ neuroscience field,” Dr. Lin said. The LGBTQ+ Parkinson’s community is so under-researched, there are currently no population estimates.  

Dr. Lin’s published study titled, “Expanding Sexual and Gender Minority Research In Movement Disorders: More Than Awareness and Acceptance” identifies the most urgent LGBTQ+-related Parkinson’s issues. 

Estrogen and Testosterone in Parkinson’s Research 

Estrogen and testosterone can be given as medically necessary gender-affirming hormones to match transgender people’s gender identity. How does this relate to Parkinson’s? At this point, testosterone was not found to affect Parkinson’s symptoms. On the other hand, the influence of estrogen on Parkinson’s symptoms remains inconclusive. Some research has shown that estrogen can play a role in providing protective benefits, such as lessening certain symptoms. Researchers also found that women with PD could have more motor fluctuations than men, challenging the idea of estrogen’s “protective effect” In PD.

What does this mean for trans women with PD who take estrogen therapy? “It is possible that trans women with Parkinson’s who take estrogen may see better or worse motor symptoms, which requires future research to tell us,” Dr. Lin said. “This is particularly important, as counseling about the stopping or altering of gender-affirming hormone for a transgender person, if necessary, is drastically different from that for postmenopausal or contraception purpose, considering the medical necessity of gender-affirming hormone to maintain mental health and life quality.”

Worse Parkinson’s Care Access and Experience

“There is a disparity in care among those in the sexual and gender minorities,” Dr. Lin said. “I have had patients who are reluctant to reveal their identity because of fear they will get denied healthcare.”

“We need to create a safe environment in healthcare institutions to disclose sexual orientation and gender identity to better impact care and access to resources,” Dr. Lin wrote in his study. Sex is a biological identifier generally determined at birth (male or female), while gender is a person’s identity (man, woman, transgender, non-binary). 

Unfortunately, there is no LGBTQ+ patient guidance for multidisciplinary teams or care facilities. This coupled with ongoing discrimination and stigma against LGBTQ+ patients in healthcare, many people do not feel comfortable telling their doctor they are in a same-sex marriage or they identify as transgender. Seniors within the LGBTQ+ are particularly vulnerable. “It is not uncommon to see higher rates of violence or verbal abuse in nursing homes aimed at LGBTQ+ residents,” Dr. Lin said.

Identity Issues

Research, education, and advocacy can help address all these issues. The biggest obstacle right now for the LGBTQ+ Parkinson’s community is data. On a national level, most medical records list sex (female or male), but not gender (how a person identifies). “This continues to limit our research,” Dr. Lin said. 

Knowing if a patient with Parkinson’s identifies as LGBTQ+ may help doctors provide customized treatments for movement and mood disorders. For instance, LGBTQ+ members typically experience higher rates of social isolation, so do people with Parkinson’s. If someone is LGBTQ+ and has Parkinson’s, they would be extremely prone to experience graver isolation issues that can lead to the worsening of non-movement PD symptoms, like depression or anxiety. To provide better evidence-based care, Dr. Lin would like to answer, “How does identity affect access to research and care?”

Helping the LGBTQ+ Parkinson’s Community

Policy-making and advocacy would change the course of treatment and care for the LGBTQ+ Parkinson’s community. “There are currently no guidelines at national or state level to help provide better care for the LGBTQ+ community,” Dr. Lin said. “There is a critical need for literature and best practices.” 

Once created, guidelines would begin to address the disparity of care experienced by the LGBTQ+ community along with providing more tailored treatment options and help healthcare professionals follow best practices when treating LGBTQ+, Parkinson’s patients. For example, a nation-wide LGBTQ+ Parkinson’s guidelines can include affirming terminology for healthcare workers, an LGBTQ+-friendly and culturally competent provider list and proven ways to help the LGBTQ+ population feel more comfortable speaking to their care team. 

“Do not be afraid to reveal your identity and community, said Dr. Lin when asked for his advice to the underrepresented LGBTQ+ Parkinson’s community. “I feel people in the medical community are relatively open-minded. If you are uncomfortable with your current specialist, reach out to other providers who may be able to give LGBTQ+ customized care. Telemedicine allows most people to find the right provider now. Also, try to be active in participating in clinical research and trials. Don’t be afraid to reveal who you are.” 

Learn more about the Foundation’s commitment to diversity, equity and inclusion at Parkinson.org/DEI.

Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations. 

Question: My husband is newly diagnosed with Parkinson’s disease (PD) but didn’t tell me much about his diagnosis. What should I know about Parkinson’s, and what resources could be helpful for us?

It sometimes takes time for people who are newly diagnosed to share much about their diagnosis and symptoms. It is difficult news to hear and difficult to digest. Giving him time to reveal what he wants to at the right time might be helpful. 

We have no way of knowing the rate of progression or symptoms people may develop. For the most part, he may have some movement symptoms like tremor, slowness of movement, and stiffness or rigidity in his muscles in the beginning. This may worsen over time. He may also have some non-movement symptoms like anxiety, low blood pressure, decreased facial expression, or hoarse voice. However, no one can predict if he will develop any of these symptoms as Parkinson’s is different for every person. 

Treatments such as medications and exercise may help manage symptoms, while seeking expert care — through building a care team — improves the quality of life and lowers the risk of complications.

In the meantime, you can educate yourself and share these resources with him when he is ready:

We have a newly diagnosed page to review and encourage you to share it with your husband when you feel he’s ready. Please see our webinar about the newly diagnosed and I suggest you also see our 5 Steps to Living Well article.

We have a booklet on Frequently Asked Questions and Living Your Best Life. Learn more about exercise as a treatment because studies show it can help increase quality of life and possibly slow down progression. It can also lift his mood, so encourage him to exercise!

Please also join us for Meditation Mondays, Wellness Wednesdays, and Fitness Fridays at PD Health @ Home. You can also view the Meditation Mondays, Wellness Wednesdays, and Fitness Fridays archives for more resources. Please call the Parkinson’s Foundation Helpline for answers to your PD questions at 1-800-4PD-INFO (473-4636).

Do you have a question for the PD community? Join the PD Conversation in our discussion groups: Newly Diagnosed, Symptoms, Caregiving, Tips for Daily Living, Young Onset and more.

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.