Though bladder problems are one of the most common challenges in Parkinson’s disease (PD), they are rarely discussed with a doctor. Parkinson’s can impact bladder function in many ways, including urinary urgency, leakage and urinary tract infections. Untreated, some urinary issues can lead to cognitive problems. Discover why it’s important to discuss urinary difficulties with your healthcare provider and learn about the treatments that address challenges and improve quality of life.

This article is based on Parkinson's Disease and the Bladder, a Parkinson’s Foundation Expert Briefing webinar presented by Abhimanyu Mahajan, MD, MHS, Movement Disorders Neurologist and Assistant Professor of Neurology, University of Cincinnati and Ankita Gupta, MD, MPH, FACOG, Associate Fellowship Director, Female Pelvic Medicine & Reconstructive Surgery, University of Louisville Health.

PD and Pelvic Floor Health

In Parkinson's, the brain does not produce enough dopamine. The decrease in this feel-good brain chemical impacts more than movement and mood. Parkinson’s-related brain changes can lead to a host of symptoms in the pelvic floor region that can impact gastrointestinal and urinary systems, sexual health and more.

Constipation, common in PD, can begin as early as 20 years before the key movement symptoms that lead to a diagnosis. Urinary symptoms, however, often begin after someone has lived with Parkinson’s for 10 years or more.

Urinary and Bladder Issues

Parkinson’s impacts the autonomic nervous system (the system in charge of the body’s unconscious actions, such as pumping blood, blinking and breathing). When this system causes urinary issues, it’s known as neurogenic bladder dysfunction.  

These urinary problems are widespread in Parkinson's and affect women and men. Whether doctors do not bring up urinary health or people are reluctant to mention issues, research shows that anywhere from 24% to 96% people with PD experience urinary symptoms.

Urinary challenges are also commonly associated with increased age and worsening cognitive function. The average age of a person receiving a Parkinson's diagnosis is 60 — around the same age people commonly experience:

• Urinary urge incontinence: urgency accompanied by leakage
• Stress incontinence: urine leakage when coughing, sneezing or exercising
• Mixed incontinence: leakage after a sensation of urgency and with physical movement

Unless asked, women are far less likely to report urinary challenges compared to men. When asked, almost 50% of all women in the U.S. more than 80 years old report at least one relevant urinary symptom.

In addition to urinary incontinence and leakage, PD can cause:

• difficulty initiating urination.
• failure to fully empty the bladder.

Risks Related to PD Urinary Symptoms

In Parkinson’s, the inability to delay urination can lead to falls.

Neurogenic orthostatic hypotension (nOH), when blood pressure drops when moving from sitting to standing, or from lying down to rising, can be common in people with PD and other nervous system disorders. Urinary urgency combined with nOH can increase a person’s fall risk.

PD-related balance difficulties (postural instability), trouble moving and walking and waking to use the bathroom at night — when Parkinson’s medications are not fully effective — can also increase the risk of falls connected to urinary urgency and bladder issues.

Sudden cognitive changes are unusual in PD. These should be urgently addressed and may be caused by a urinary tract or bladder infection, other infections, or a medication side effect. 

Assess and Address Bladder Health

If you experience urinary issues, talk to your healthcare provider. To prepare:

• Keep a 24-hour overactive bladder diary. This can help you keep track of urination timing and frequency and provide greater detail to your doctor.
• Think about your treatment goals. Do you need enough relief to sleep better or are you hoping to get through an outing without overly frequent trips to the restroom?
• Aim to take PD medication on time, every time. Most people with PD know medication timing is often essential to controlling PD symptoms. Staying on schedule can also impact bladder function.

Your doctor may refer you to a specialist. Urologists are doctors who focus on the urinary system, while urogynecologists specialize in treating pelvic floor disorders in women.

Urinary Issue Treatments

Your doctor will try to get to the root of any urinary issues, looking for reversible causes such as an infection or diuretics (water pills). It’s not uncommon for people with Parkinson’s to have bladder symptoms that predate their PD diagnosis.

A doctor might have you stand or sit and cough to assess for stress incontinence or use an ultrasound or catheter to confirm whether your bladder is fully emptying. Urodynamic testing can help your healthcare provider determine whether your bladder fills and empties at normal pressures and reveal urinary dysfunction.

Treatment is tailored to a person’s symptoms and goals. Non-surgical options include:

• Kegel and pelvic floor muscle strengthening exercises, which can benefit men and women.
• Referral to pelvic floor physical therapy.
• Behavioral and lifestyle modifications, such as practicing urge suppression and urinating at fixed intervals to retrain the bladder and increase its holding capacity.
• Botulinum toxin injections for overactive bladder.
• For women, a continence-support pessary — a tailored, soft, vaginal device, typically removable, that can improve bladder control. This option may be challenging as Parkinson’s advances.

Medication therapy is also an option. Beta-3 agonists mirabegron (Moretti®) and vibegron (Gemtesa®) are once-a-day medications to control bladder urgency and frequency.

While anticholinergic drugs are often a first-line therapy for bladder issues, research finds cognitive slowing can be a side effect to these drugs. Use should be avoided in people older than 70, as there is a greater potential for anticholinergic-related hallucinations and confusion. Oxybutynin (Ditropan®), darifenacin (Enablex®), tolterodine (Detrol®), trospium (Sanctura®), phenoperidine fumarate (Toviaz®) and tofenacin succinate (VESIcare®) are among the anticholinergics used to manage overactive bladder.

Surgical options for bladder challenges include:

• Injection of a hydrogel urethral bulking agent. This acts as a plug to stop urine leakage during coughing, exercise or other movement.
• Sacral neuromodulation. Electrical stimulation through an implanted bladder pacemaker-like device, to improve urinary urgency, incontinence and retention.
• Urethropexy to adjust and support the urethra for bladder control.
• Retropubic colposuspension. Reinforcement for the bladder and urethra to improve urinary incontinence.
• For men, bladder sling surgery, which supports the urethra to boost bladder control.
• For women with stress incontinence, urethra-supporting synthetic midurethral sling surgery or autologous fascial sling surgery.

Learn More

Explore our resources about urinary issues and Parkinson’s:

• Fact Sheet: Urinary Problems in Parkinson's Disease
• Blog: Tips for Intimacy & Incontinence with Parkinson’s
• Web Page: Urinary Incontinence

Occupational therapists help people with Parkinson’s disease (PD) remain independent and pursuing the activities they enjoy. Heather Simpson, OTD, OTR/L is an occupational therapist at the Norman Fixel Institute for Neurological Diseases at the University of Florida. At the Fixel Institute, she treats people with Parkinson's and other movement disorders while serving as co-clinical coordinator for their Parkinson’s Foundation Center of Excellence. In this article, Heather answers the most frequently asked questions about Parkinson’s and occupational therapy (OT).

What is your definition of occupational therapy?

Occupational therapy is a form of rehab therapy in which therapists use everyday activities to promote health, wellbeing and your ability to participate in meaningful activities in your life. OT works on “occupations,” which include self-care activities (like dressing, eating, bathing and toileting), home management activities (like cooking and driving) and leisure activities. Occupational therapy is individualized, but our goal is to make each person feel comfortable with who they are and help them live independently for as long as possible.

When should a person with PD start occupational therapy?

Research supports that occupational therapy intervention, along with physical therapy and speech therapy, can be very helpful for people with Parkinson’s disease. Starting occupational therapy early on is highly recommended. Even if you are independent when you first get diagnosed with Parkinson’s, starting OT can provide you with a home program that reacts to existing PD symptoms and prevents additional PD symptoms from occurring. OT can also give you tips and strategies to make sure you're feeling your best during daily activities.

What are the benefits of occupational therapy for people with Parkinson’s?

What I love about OT is that it's holistic. We provide evidence-based interventions to help people enjoy life through everyday activities. OT is also tailored to your individual needs as a person with Parkinson’s. For movement symptoms, we can help with posture, rigidity, bradykinesia and fine motor skills. For non-movement skills, we work on improving sleep, vision, cognition and mood. Occupational therapy is useful because it’s available in many different settings — it can be found in outpatient therapy, inpatient therapy, hospitals, nursing homes and more.

Is it better to go to a specialized facility for occupational therapy?

Getting occupational therapy services is important no matter what, but therapists at Parkinson’s Foundation Centers of Excellence are specialized in Parkinson's and related disorders. They do a lot of research and learning, particularly about Parkinson's, and can work together with your local providers to give PD-specific recommendations.

Occupational therapists at specialized facilities also work directly with the physicians on your multidisciplinary team. This type of collaboration can help make sure that we're understanding your symptoms and your needs.

How does an occupational therapist collaborate with the Parkinson’s care team?

Occupational therapists are an important part of the care team for people living with Parkinson’s. We are directly involved with physicians and nurses, as well as physical therapists and speech-language pathologists. Since occupational therapists may work with you more regularly than you see your neurologist, we can be the eyes and the ears for other members of the team.

For example, if you come into an OT session and we notice you are experiencing new movement fluctuations, we can reach out to your doctor on your behalf to address the issue. Occupational therapists coordinate closely with your doctor and help make critical decisions for your care.

Can you share an inspirational story about one of your PD clients?

Occupational therapy is meaningful because it is person-centered and works to meet an individual’s needs. One of my clients was highly motivated by her role as a mother and a grandmother. She had a hard time moving her arms, hands and fingers, but through OT we found ways to adapt board games so she could play with her grandkids when they came to visit. Even though she had limited physical ability, we were able to maintain what she found important in her daily activities through these personalized interventions.

How do you manage the stress that can accompany helping other people?

I love what I do for work, but I think it’s also very important to maintain the other roles I play in my life: friend, sister, daughter and spouse. I take time to pursue activities outside of work that fulfill those roles. I exercise, go to therapy and plan specialized date nights with my friends.

People in the Parkinson’s community may have a similar experience when it comes to the roles they play in life. When someone is diagnosed with PD, they may feel like they have to exercise full-time. Care partners may feel like they need to be a care partner at all times, and they lose their role as a spouse. I think it’s important to find a balance between your various roles whenever possible.

What is a takeaway the PD community should know about occupational therapy?

Occupational therapy is an individualized therapy that ensures safety, independence and happiness. It allows you to maintain your sense of self. OT is critical throughout all stages of Parkinson’s, from diagnosis to palliative care, but it is designed to help you maintain a sense of self and be happy with who you are.

For help finding an occupational therapist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Regularly seeing a neurologist can improve the lives of thousands of people with Parkinson’s disease (PD) each year. However, access to expert Parkinson’s care is not always easily available. A new Parkinson’s Foundation-funded study found that only 9% of Medicare beneficiaries with PD received care from a movement disorders specialist (expertly trained neurologists who can recognize PD’s distinct nuances and tailor treatments to each patient), while 50% saw a general neurologist.

The study identifies critical gaps in care for people with Parkinson’s in the U.S. Those with the greatest disparities in care are women, people of color (those who identify as Asian, Black, Hispanic and Native American) and residents of rural areas. Published in the official, peer-reviewed journal of the Parkinson’s Foundation, npj Parkinson’s Disease, the study analyzed 2019 U.S. Medicare data.

“By utilizing Medicare data from 2019 that represents 90% of people living with Parkinson’s in the U.S., this research provides not only the timeliest but the most comprehensive study of people with PD yet conducted,” said James Beck, PhD, senior author of the study and Parkinson’s Foundation chief scientific officer. “Our findings underscore that Parkinson’s specialists are not the main care providers for people with PD — it is the general neurologists and other clinicians. These professionals, and their patients, could greatly benefit from additional training in PD care.”

Study Findings

• 50% of people with PD receive care for the disease from general neurologists.

• 29% receive PD care from primary care providers.

• Care access disparities persist for women, people of color, and residents of rural areas — each most likely facing additional challenges in receiving a diagnosis and treatment.
• Although depression affects 53% of people with PD receiving Medicare, only 2% receive treatment from a mental health professional.
• Medicare recipients with PD are not likely to access supplemental therapies — physical and occupational therapy, speech-language therapy and mental health services — with only 20% of individuals seeing a physical therapist, for example.

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What do these findings mean for people with Parkinson’s?

There are only 660 movement disorders specialists who practice in the U.S., with a total of six in rural areas. There are one million people in the U.S. living with Parkinson’s.

Forty-one percent of people with PD on Medicare do not see a neurologist or movement disorders specialist. Prior research has shown that receiving care from a PD specialist leads to a better quality of life. These doctors know how to help people manage PD symptoms, screen for crucial symptoms like depression and anxiety, and can help personalize medication and treatment plans.

The Parkinson’s Foundation conducted this study to better identify how it can improve access to specialized PD care. As a result of this study, the Foundation is now expanding disease-specific training to general neurologists and other healthcare providers, and pursuing strategies that improve access to care across all demographic and population groups. The findings from the study will also support policy development and future research that dives deeply into access issues.

The vision of the Parkinson’s Foundation is for all people to have access to quality PD care. The Foundation oversees multiple initiatives aimed at better understanding and improving care, providing professional education opportunities and working to remove care barriers for people with PD. Learn more about how we are increasing access to care through our care programs.

The Urgency of Connecting People to Expert Care

Every year, 90,000 people in the U.S. are newly diagnosed with PD. Unfortunately, many navigate the disease alone for years. Receiving an accurate PD diagnosis can be half the battle, while the other half is finding quality PD care. Those who engage with healthcare professionals trained in PD in the early stages of the disease report better outcomes and quality of life.

The economic burden of Parkinson’s disease to individuals, families and the U.S. government is nearly $52 billion every year and will cost $80 billion annually by 2037. Not only is expert care critical to living better with Parkinson’s, receiving care early on can reduce the economic burden of Parkinson’s drastically both on a personal and nation-wide basis.

The number of people with PD will continue to increase substantially in the next 20 years due to the aging population. That is why we are determined to educate healthcare professionals so that people with Parkinson’s will receive a diagnosis earlier, treatment sooner and better care. Our goal is for people with Parkinson’s actively avoid unnecessary complications, such as prolonged hospital stays, and live better with this disease.

How can I find expert care?

If you are living with or caring for someone with Parkinson’s, find PD care near you with these resources:

1. Use our In Your Area feature or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
2. Learn more about our Global Care Network, designated centers that provide PD care.
3. Talk to your PD doctor about building your care team to address your most troublesome symptoms. Learn more about building your care team.
4. Download the Hospital Safety Kit, designed to help you navigate a hospital stay — planned and unplanned.
5. For healthcare professionals: learn more about PD-tailored care at Professional Education.

Ready to learn more?

• Read more about Finding Care and Treatments.

• Visit our priority populations pages: Women, Black Community, LGBTQ+ and Veterans.