Podcasts

Episode 154: Sexuality from the Care Partner Perspective

Intimacy is a significant part of any relationship, and sexuality is an important aspect of intimacy. Parkinson’s disease (PD) can present challenges for both intimacy and sexuality, both for the person with PD and for the care partner. The Parkinson’s Foundation Helpline can be a good resource for coping with these issues. In this episode, Anna Moreno, MSW, a Senior Parkinson’s Information Specialist at the Parkinson’s Foundation, highlights some of the more common questions that care partners pose about sexuality to the Helpline. 

Although she herself is not a therapist, she can direct callers to appropriate resources. Gila Bronner, MPH, MSW is a Certified Sex Therapist and Supervisor of the Sex Therapy Services at the Tel-Aviv Sourasky Medical Center in Israel. In this episode, she provides insight into these typical problems that care partners report, and she offers some recommendations to help overcome them. For many years, she has researched and provided therapy and advice about intimacy and sexuality relating to PD in Israel and around the world.

Released: July 11, 2023

Videos & Webinars

Neuro Talk: Strategies for Managing Parkinson’s Disease Symptoms

Each person’s experience with Parkinson’s disease (PD) is unique. Understanding how to manage symptoms can take time, but will ultimately empower you to live better with PD.

In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, discusses common movement and non-movement symptoms of Parkinson’s. Dr. Beck also explains available treatments and ongoing research related to both types of symptoms.

Podcasts

Episode 152: The Link Between Art and Parkinson’s Disease

There’s a new and greater understanding of the relationship of Parkinson’s disease (PD) and art. Engaging in artistic practices can enhance mood, cognitive function, and enjoyment of life for people with PD. Importantly, how art causes these effects is giving greater insight into the neurobiological basis of how people in general create and respond to art. Central to this insight is the role of the neurotransmitter dopamine. In this episode, Prof. Bas Bloem, Director of the Parkinson’s Foundation’s Center of Excellence at Radboud University Medical Center in Nijmegen, the Netherlands, explores the emerging importance of incorporating art in the treatment of PD and the role of dopamine for enhancing people’s enjoyment and creativity. Dopamine has been called the “happiness hormone,” but it may also be the creativity hormone.

Released: June 13, 2023

Science News

PD in the Feces: Stool Samples Could Detect Early Parkinson’s

Parkinson's Foundation Science News blogs

New research finds a Parkinson’s-related biomarker in stool samples from individuals with a sleep disorder linked to later developing Parkinson’s.

Making an accurate Parkinson’s disease (PD) diagnosis is complicated because there is no single test. Doctors look at symptoms such as tremor, rigidity and difficulty walking to make a diagnosis. As a result, it can take years after the onset of early symptoms to get an accurate diagnosis. And while there are treatments available to alleviate symptoms, they can’t slow down or stop the disease.

A new study suggests that a stool sample could help detect Parkinson’s before movement symptoms start. Detecting Parkinson’s early can help researchers better understand how Parkinson’s works and ultimately, develop treatments that can slow disease progression.

What is alpha synuclein?

When it comes to Parkinson’s, the protein called alpha synuclein plays a critical role. This protein, believed to be important for normal neuronal function, begins to form sticky clumps in neurons (cells in the brain) in PD. Over time, the clumping kills neurons and impairs the brain’s ability to produce dopamine, leading to Parkinson’s symptoms and ultimately a diagnosis.

To develop a test for a disease, researchers often rely on a biological indicator (called a biomarker). A potential biomarker of Parkinson’s is a protein called alpha-synuclein, which is involved in normal brain cell function but accumulates abnormally in Parkinson's. The presence and increase in alpha-synuclein clumping levels in the cerebrospinal fluid (CSF) in Parkinson’s has been well documented; however, collecting the CSF is invasive and challenging. Alpha-synuclein aggregates have also been detected in the saliva, tears, urine, and blood of people with Parkinson’s. However, to this date, no method has been developed to reliably predict or diagnose Parkinson’s using these samples.

A recent study published in Nature Parkinson’s Disease and funded by the Parkinson’s Foundation, describes how alpha-synuclein levels detected in stool samples could predict Parkinson’s disease onset. Gültekin Tamgüney, PhD, a Parkinson’s Foundation Impact Award recipient, led the research team.

Doctor holding a stool sample container

The study is based on recent research that indicated that it might be possible for alpha-synuclein to be shed in the gut, and therefore found in feces. The amounts of alpha-synuclein shed by the body are too small for standard lab techniques to detect them. Thus, a team of researchers studied whether they could use a special technique called sFIDA (surface-based fluorescence intensity distribution analysis) to accurately detect alpha-synuclein in stool samples.

The researchers used sFIDA in stool samples from people with Parkinson’s, healthy people, and people who have a sleep disorder called isolated rapid eye movement sleep behavior disorder (iRBD). Past research indicates that 80% of individuals with iRBD — which can lead people to act out their dreams through movements such as kicking, punching, or getting out of bed and walking around — later develop Parkinson’s or dementia. Importantly, individuals with iRBD also display many of the non-movement symptoms observed in people with Parkinson’s and have high amounts of alpha-synuclein aggregates in their nervous system.

Study Results

  • The sFIDA technique was successful at detecting alpha-synuclein aggregates in stool samples. 
  • Stool from individuals with iRBD showed significantly higher levels of alpha-synuclein aggregates than healthy individuals — the researchers were able to distinguish 76% of people with iRBD from healthy individuals. 
  • Unexpectedly, alpha-synuclein aggregate levels were similar between healthy people and people with Parkinson’s. 

The researchers were surprised that alpha-synuclein aggregates are found in the stool of people with iRBD, but not in people with a Parkinson’s diagnosis. They speculated that the presence of alpha-synuclein in the stool may be related with disease progression — the more advanced the disease is, the less alpha synuclein aggregates are shed through stool. 

What does this mean?

With further improvement, this method of detecting alpha-synuclein in the stool could be a noninvasive way to detect Parkinson’s many years before the movement symptoms appear. Earlier detection would allow for earlier treatment once researchers identify a successful disease-modifying drug. 

Additionally, researchers could use this method to monitor the effectiveness of treatments in clinical studies. For example, if a drug treatment reduces alpha-synuclein aggregate levels in stool over time, it could indicate that the treatment is having an effect.

What do these findings mean to the people with PD right now? 

Currently, this method cannot be used to diagnose Parkinson’s. Studies like this one are an exciting step toward allowing the medical research field to find a biomarker that can help doctors diagnose and track disease progression.

Learn More

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

 

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

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