Tips for Daily Living

Tips for Intimacy & Incontinence with Parkinson’s

Man kissing his wife's hand

Between 30-90% of people living with Parkinson’s disease (PD) may experience intimacy issues. These challenges can affect the person living with Parkinson’s as well as their partner.

Though it may seem taboo to discuss topics like sex and the human body, understanding the impact of non-movement PD symptoms like sexual dysfunction and incontinence issues can help you live well.

Navigating Intimacy

Sexual dysfunction is a common issue among the general population, but it is one of the most overlooked aspects of PD. Sexual dysfunction can encompass a variety of symptoms including sexual desire/arousal, ejaculation, sexual pain and erectile dysfunction.

Since Parkinson’s disease affects the production of dopamine in the brain, changes in levels of neurotransmitters can impact sexual function and lead to other sexual dysfunction symptoms.

There are many types of sexual dysfunction, as well as options for managing them:

  • Sexual arousal. To help improve sexual arousal or libido, doctors tend to first look at other potential causes, such as stress and anxiety. Treatments include types of therapies such as hormonal and sexual therapy, which usually includes your partner as well. Oral medications can also be taken to improve sexual arousal.
  • Ejaculation. To help ejaculation, behavioral techniques and/or vibratory stimulation can be effective. Oral and topical medications are also available to help with this symptom.
  • Erectile dysfunction. Lifestyle modifications and oral medications can help treat this symptom. Other potential treatments include Botox injections and surgery, which is rare.
  • Sexual discomfort. There are different interventions that can be used to decrease sexual discomfort such as vaginal estrogen, which comes in many forms. Additionally, behavioral, and physical interventions as well as pelvic floor physical therapy can help decrease discomfort.

Sexual dysfunction is a common problem for many individuals, but it is important to remember that these issues can be common for people living with PD. Fortunately, there are various treatments available to help combat sexual dysfunction depending on what you are experiencing and what works best for you.

Tips for Intimacy and PD

  • Increase open communication
  • Perform intimacy training and erotic tasks
  • Work with medical staff to reduce the effects of medications on sexual function
  • Understand comfortability and physical limitations of each other
  • Practice growing intimacy and satisfaction through sexual stimulation without intercourse, then begin to add it back in, known as the intercourse approach

Understanding Incontinence

Incontinence is the lack of voluntary control over urination or defecation. Urinary issues are one of the most prevalent non-movement symptoms of Parkinson’s disease, affecting around 40-70% of people living with PD. These issues include urgency and/or frequency of urination, leakage and infection.

In the human body, the brain, spinal cord and nerves all interact with the bladder and sphincter. Injury or damage to nerves, which occurs in neurodegenerative diseases like Parkinson’s, can impact the signaling in the bladder and lead to urinary symptoms.

First, talk to your doctor to rule out other medical issues, such as bladder or urinary infections. If your symptoms persist, there are a variety of treatments to help cope with urinary issues:

  • Behavioral modification includes timed voiding (going to bathroom every hour) and avoiding dietary irritants such as spicy foods and caffeine.
  • Pelvic muscle training can be an effective method to curb urinary issues.
  • Oral medications and bladder injections such as Botox are common treatments.
  • Surgery can be an option, but is rare.

Parkinson’s disease can impact life in many ways, especially when it comes to intimacy and incontinence. These symptoms may be challenging to manage, but there are strategies and treatments designed to help. With proper support and open communication with your care team, people living with PD can maintain a good quality of life and enjoy fulfilling relationships.

Tips for Incontinence and PD

  • Openly communicate with your healthcare provider and loved ones
  • Be aware and frequently use the restroom even if you don’t need to
  • Cut down on caffeine consumption
  • Keep a bladder diary to record your fluid intake and restroom patterns

Learn More

Explore our resources about intimacy and Parkinson’s:

The Parkinson's Foundation is here for you. Reach our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your Parkinson’s questions and referrals to local wellness classes and support groups

My PD Story

Chris Cluff headshot
People with PD

Chris Cluff

I had just begun to live my dream of being a stand-up comedian when I was diagnosed with Parkinson’s disease (PD). The physical signs of the disease were present for over a year, but I just ignored them until I couldn’t any longer.

I was used to doing a lot of fun things. I taught yoga more than 40 years, and I enjoyed skiing as a hobby. Unfortunately, as my Parkinson’s symptoms progressed, even those activities were suddenly too much for my body to handle. I became extremely depressed and realized I needed to find an outlet for my emotions.

I happily discovered that laughter was my best friend. I started to take improv classes, which led to performing and teaching as well. When it came to my stand-up comedy, I realized I could use comedy to talk about Parkinson’s disease and share my story with others. I feel strong and whole when on stage, and making people laugh feels amazing! I wish I could extract the magic that comedy puts in my veins and share it with other people living with PD!

Chris Cluff with group

Since I wanted to share my comedy with members of the PD community, I decided to produce a stand-up comedy show benefitting the Parkinson’s Foundation. The show starred three of the top headlining comedians in the state of Arizona… and me!

We had a great crowd and I helped them see that Parkinson’s can also be treated with humor. I told them that I have a different relationship with my doctor these days. He doesn’t just say, “How are you doing?” — he asks, “What’s shaking?”

The event turned out well and was a lot of fun. The comedians did not disappoint; we all got in lots of healing laughter. Quite literally, comedy and performing has kept me alive. As long as I can get up on that stage, I will keep making laughter my way of giving back.

Have a unique idea for engaging with the PD community? Create your own fundraiser.

My PD Story

Bill McCleery holding basketball
People with PD

Bill McCleery

Parkinson’s disease (PD) has made me a better basketball player — and a better bicyclist, birdwatcher and bowler. I know that sounds counterintuitive. With a degenerative brain disease, after all, things worsen over time. Right? In the long run, perhaps so.

In the years preceding my diagnosis, however, the churning currents of daily responsibilities — mainly job-related — carried me away from healthful activities that I enjoyed in my younger years.

Then came 2020 — the year I stopped walking right.

I was 49.

Looking back, I now recognize that the first signs of Parkinson’s disease popped up years before that — increased anxiety, attention deficits, fatigue, muscle rigidity and shoulder stiffness. But it was the sudden onset of persistent cramping in my left foot that figuratively (and literally) threw me off my stride. The cramps progressed to a constant limp that dogged me even when no cramps were present. I began bicycling for exercise rather than my usual walking or running — because bicycling did not trigger the cramps.

I finally saw a neurologist. After months of uncertainty, I received my Parkinson’s diagnosis in February 2022. Directly upon diagnosis, my neurologist at Indiana University Health, part of the Parkinson’s Foundation Global Care Network, provided me with educational books published by the Parkinson's Foundation.

Upon learning more about my symptoms, I found out the foot cramps were Parkinson’s-induced dystonia. To my great relief, a regimen of carbidopa-levodopa dramatically reduced the dystonia and the limp. I began enjoying walking again — with a new appreciation for being able to do so. Across a spectrum of activities, my PD diagnosis brought me back to doing things that promote better mental and physical health.

Support of family and friends is paramount. My wife, Amy, has been a constant partner at every step. Together, motivated by a mutual desire to stay active, we have spent more time doing things we love like hiking, birdwatching and bowling. Likewise, I have valued the encouragement of my three daughters — along with my parents, in-laws, friends and co-workers. I’ve also appreciated interacting on Facebook and Twitter with others facing Parkinson’s disease.

Basketball has become my primary therapy. I play 4-on-4 half-court hoops two nights a week. When I’m on the basketball court, I don’t think about my symptoms.

After playing infrequently during my 40s, I now enjoy trying to improve my skills each week. My outside shot — such as it was, anyway — has largely survived. But when I drive to the basket, I miss layups time after time. So, my current goal — besides passing the ball better — is to actually score the bucket after getting past defenders on the way to the hoop.

Exercise is so enormously beneficial for Parkinson’s disease. Conversely, the worst thing for PD, in my experience, is spending long periods sitting at a desk or otherwise being sedentary. After years as a news journalist, I have now worked in state government since 2014. My job requires hours at a computer keyboard, but I do my best to get up and be active in the midst of workdays.

As I now deal with some dyskinesias and other symptoms, I realize that Parkinson’s is a tough opponent. But we can keep scoring points, nonetheless.

Learn more strategies for staying active with Parkinson’s. Download our Fitness Counts book.

Podcasts

Episode 148: How to Prevent Sudden “Off” Episodes

“Off” episodes can become a troubling aspect of Parkinson’s disease (PD), especially as the disease progresses. These are periods in the day when the effect of levodopa medication wears off, either suddenly or gradually, with a return of motor or non-motor symptoms. 

The good news is that there are several ways to try to minimize “off” episodes, including medication timing, medication adjustments, and add-on medications. In this podcast episode, Dr. George Kannarkat, a movement disorders fellow at the University of Pennsylvania in Philadelphia, a Parkinson’s Foundation Center of Excellence, discusses “off” episodes, their causes, strategies that people can use today to minimize them, and what new technologies are here or coming along to help lessen them.

Released: April 4, 2023

Podcasts

Episodio 24: Cambios en la vista relacionados con el Parkinson

La visión es uno de los sentidos que tenemos que está conectado directamente con el sistema nervioso central. Cuando hay alguna enfermedad neurológica o algún problema que afecta esta área del cerebro, podemos esperar cambios en la visión. 

En este episodio, hablamos con el doctor Juan Ramírez-Castañeda, profesor asociado de neurología en la University of Texas at San Antonio y director del programa de la enfermedad de Parkinson y otros trastornos del movimiento, acerca de estos cambios en la vista relacionados con el Parkinson. 

El doctor Ramírez-Castañeda explica cuáles son los síntomas visuales más comunes para las personas con Parkinson, como visión doble, ojos resecos, problemas con la percepción de profundidad y alucinaciones visuales y cómo pueden tratarse los cambios en la visión.

Publicado: 21 de marzo de 2023

Videos & Webinars

Expert Briefing: Parkinson’s & Medications - What's New

March 8, 2023

There are many medications to help improve quality of life for people with Parkinson’s disease. However, people respond to medications differently. What works for one may not necessarily work for another. Learn about the advances in Parkinson’s treatments for movement and non-movement symptoms and where we are on the path to personalized medicine.

Download Slides

Additional Resources

Presenter

Tanya Simuni, MD, Arthur C. Nielson Jr. Professor of Neurology, Director
Parkinson’s Disease and Movement Disorders Center
Northwestern University Feinberg School of Medicine, A Parkinson's Foundation Center of Excellence
Chicago, Illinois

My PD Story

Sue Waight headshot
People with PD

Sue Waight

I am a 61-year-old woman who was diagnosed with Parkinson’s disease (PD) at age 59, which apparently is a common age for women to be diagnosed. My parents both had Parkinson's, but of my four siblings, I seem to be the only one who has inherited it. The first symptom I noticed was that my left hand would twitch, especially in the evenings, but not every day. I also went walking with my husband one day and found I didn't have the strength to walk up some steps. It took me several attempts to climb them. Then we took our three granddaughters to some hot pools, and I was waiting in line with my youngest. I noticed I got very cold, and when I did, I didn't just shiver — my whole arm was shaking so badly that I had to try to hold it still with my good arm.

I had trouble getting my general practitioner to refer me to a specialist, as he stated that he had not noticed any tremors while we were talking. I told him that it didn't happen all the time, but enough — coupled with the other events — that I felt there was merit in seeing a neurologist who specialized in Parkinson's disease.

I was referred and saw the neurologist, who very quickly diagnosed me with Parkinson's. I then realized I had some non-movement symptoms as well, which I simply hadn't connected with PD. I had been experiencing swallowing issues for at least 2 to 3 years and had recently lost my sense of smell; nobody put two and two together and realized these symptoms pointed to Parkinson's disease.

I was devastated but not surprised, and it took a month or so before I felt I could come to grips with the diagnosis. One day when I was searching online for Parkinson’s resources, I came across the Parkinson’s Foundation. Reading stories from other people with PD helped me realize I was not alone. I quickly found my best way of dealing with Parkinson’s was to create a blog, which I started in January 2021 and is still ongoing. Writing allows me to process my thoughts and feelings, and I hope that my words help others in the way these personal stories helped me.

I continue to work as a social worker in a hospital — working, ironically, in a neurological ward. I am still active and plan to work for a few more years, before I retire and hopefully am able to travel with my husband.

Let others in the Parkinson’s community know they are not alone.
Share your story

Science News

Most Popular Science News Articles of 2022

Science News Blog header

Research brings hope to those living with Parkinson’s disease (PD) and their families. Knowing about the current Parkinson’s research studies can be empowering. Our Science News blog series focuses on the latest Parkinson’s studies and what they can mean for you or your loved one living with this disease.

The Parkinson’s research realm is vast. A breakthrough in treatment can stem from any lab or researcher, which is why we fund numerous research grants every year. Ready to participate in Parkinson’s research? Visit our Join A Study page to learn more.

Catch up on our top 5 Science News articles of 2022:

1. Aerobic Exercise Positively Alters Parkinson’s Brain

Multiple clinical trials have shown that aerobic exercise can enhance cognitive functioning, such as learning, thinking, remembering and problem solving. We know brain heath and cardiovascular fitness are connected. What we don’t know is how and where in the brain aerobic exercise is enhancing cognitive functions and reducing movement symptoms for people with PD.

This study sought to investigate how aerobic exercise may influence PD-related changes in the brain. Researchers also explored the effects of aerobic exercise on the substantia nigra, the area in the brain that plays a key role in dopamine production.

READ THE FULL ARTICLE

2. Freezing of Gait: Comparing Treatments Options

80% of people with PD experience freezing of gait

The sudden feeling that your feet are glued to the floor when trying to take a step is called freezing of gait — or more commonly, “freezing.” Unfortunately, freezing can happen often for people with Parkinson’s.

A new analysis compared the 11 most common techniques used to help a person with PD recover from a freezing episode. Some of these techniques include general exercise, verbal cues (like counting or clapping) and gait training. Find out the top three techniques that help with freezing.

READ THE FULL ARTICLE

3. The Unmet Needs of Women with Parkinson’s

40% of all people living with PD are women

When it comes to PD research, women are woefully underrepresented. Compared to men living with Parkinson’s, women with PD experience different symptoms, risk factors, side effects to treatments and have more difficulty getting a diagnosis and, later on, care.

We know these health inequalities exist, so how is research addressing them? A study authored by women sought to rigorously document the current knowledge, gaps and possible ways to address the unmet needs of women living with PD.

READ THE FULL ARTICLE

4. Dopamine Medication May Help with Sleep, Depression and Pain

Think of non-movement symptoms in Parkinson’s as fingerprints — everyone has them, but they’re different for every person. These symptoms can include depression, anxiety, problems sleeping and more. They often go under-reported and under-treated in people with Parkinson’s.

A type of drug known as a Monoamine oxidase-B (MAO-B) inhibitor helps make more dopamine available to the brain. These drugs can mildly improve some PD movement symptoms, but we do not if or how these medications help with non-movement symptoms. Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, co-authored a study analyzing a total of 60 MAO-B inhibitor studies and how they impact non-movement symptoms in Parkinson’s. Find out which symptoms improved, and which ones did not.

READ THE FULL ARTICLE

5. PD & Pollution: Something in the Air

Most experts agree that PD is caused by a combination of genetic and environmental factors

Air pollution is linked to heart disease, stroke, respiratory diseases, and diabetes, as well as neurogenerative diseases such as Alzheimer’s disease. Mounting evidence suggests that Parkinson’s might be added to the list soon.

A new study shows that air pollution is an emerging risk factor in the development of Parkinson’s. Exactly how do polluted air particles negatively impact the brain? From the lungs to the gut, study authors explain the pathways air pollution takes to enter the brain — all of which are linked to an increased risk of developing PD.

READ THE FULL ARTICLE

My PD Story

Paul and dad at a football game
Family Members

Paul Farahvar

My father was diagnosed with Parkinsonism in 2019, which likely resulted from a traumatic head injury. He was a successful and well-respected orthopedic surgeon for almost 40 years in Chicago, IL. He was the first to bring many bone surgeries to Chicago in the 1970s and ‘80s. 

As a pioneering surgeon, he loved helping others as a physician, so much so that he didn't want to retire, even into his 70s. He was known as a no-nonsense surgeon, who always thought of surgery as a last option, not the first — which was something rare in the ‘80s and ‘90s and is even rarer now. 

He didn't need to work anymore, as he had provided for his family for years and deserved retirement. We finally convinced him to retire so that he could work on his golf and tennis games! Sadly, less than five years into his retirement, he had a bad fall and then started to experience symptoms consistent with Parkinson’s disease. It slowly took away his independence and forced him to accept assistance. We are still unsure what form of parkinsonism he has as it has progressed for the past three years, quite quickly, making his ability to walk and talk very limited. 

Paul during a comedy show

I did not know much about Parkinson's before my father's diagnosis, but since then, I have become a student of the disease, and have been raising thousands of dollars for the Parkinson’s Foundation by donating all the proceeds from the T-shirts I sell at my comedy shows. I travel the country as a stand-up comedian, promoting my "Better Call Paul" shirts at my shows — I used to be a lawyer so it's a wink and nod to the show "Better Call Saul!” 

I regularly hear stories from others who have been personally affected by Parkinson’s and continue to learn more about this disease and its wide-ranging impact. Many of these conversations and connections end with tears and hugs with fellow family members who have suffered and lost.  

When it comes helping your loved one with Parkinson’s, talk to as many people who have been affected by Parkinson’s as possible, read as much as you can, be an advocate for your loved one and be positive.

In December 2022, I launched Stand Up for Parkinson’s, a Comedy Night supporting the Parkinson’s Foundation Midwest Chapter. I hope to continue my work with the Parkinson’s Foundation in the coming years!

Looking for ways to help your local PD community? Learn more on our How You Can Help page.

Caregiver Corner

Caregiver Corner: Lewy What? Explaining Lewy Body Dementia

Older and younger woman

Many people first heard the term dementia with Lewy bodies when it grappled headlines alongside Robin Williams, who was diagnosed with the disease before his passing. What should you know about this brain disease? 

Approximately 1.4 million people in the U.S. are estimated to live with dementia with Lewy bodies (DLB), a progressive brain disorder also known as Lewy body dementia. This progressive disease is often difficult to diagnose. However, knowing the signs can help you or your loved one get answers, and treatment, sooner. 

Symptoms  

Dementia with Lewy bodies can cause confusion, alter the way a person thinks and behaves and impact movement and memory.  

Symptoms include: 

  • Challenges with memory, concentration or multitasking. 

  • Tremor 

  • Rigidity 

  • Slow movement 

Diagnosis 

Dementia with Lewy bodies is diagnosed when cognitive decline (thinking changes) is an early symptom, occurring before or within a year of the onset of movement symptoms. 

DLB is known as an atypical parkinsonism. Atypical parkinsonism is difficult to diagnose. Over half of the people living with atypical parkinsonism disorders are initially diagnosed with Parkinson’s disease (PD). In most cases, people see multiple doctors before receiving a diagnosis. 

Treatment 

While there are currently no medications that slow or reverse DLB, there are many treatments aimed at relieving symptoms and helping ensure safety. People living with dementia with Lewy bodies benefit most from comprehensive, team-based healthcare that includes a mental health professional.  

Caring for the body and the mind — through medication, physical and mental exercise — is essential for people living with DLB. 

Symptom management is tailored to a person’s unique needs and can include: 

  • Medications such as donepezil (Aricept), galantamine (Razadyne) or rivastigmine (Exelon), may improve cognitive symptoms. 

  • Selective serotonin reuptake inhibitors (SSRIs) and Serotonin and norepinephrine reuptake inhibitors (SNRIs) medicines are used to address depression and anxiety.  

  • Clozapine (Clozaril), quetiapine (Seroquel) and pimavanserin (Nuplazid) are used to lessen hallucinations. 

  • Melatonin or clonazepam can be helpful for RBD. 

For those with dementia with Lewy bodies, many Parkinson’s dopamine medications can cause or worsen confusion. These may need to be reduced or eliminated, under a doctor’s guidance. Certain medications sometimes used to treat tremor, called anticholinergics, such as trihexyphenidyl (Artane) and amantadine, can also negatively impact thinking. 

Older antidepressants, some bladder medications and nonprescription antihistamines containing diphenhydramine (Benadryl and others) can also negatively impact cognition. 

Learn More 

If you recognize dementia with Lewy bodies symptoms in your loved one, speak to their Parkinson’s doctor, or a neurologist, who can help you find answers. For more information, explore these resources:  

We’re here for you. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s and caregiving questions.  

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