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.

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.

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.

• Podcast Episode 59: Understanding Biomarkers to Deliver Precise Treatments
• The PD Gut-Brain Connection
• Sleep Disorders

Las investigaciones demuestran que el tacto favorece el bienestar físico y mental: puede reducir el ritmo cardíaco, disminuir la depresión y la ansiedad, reforzar el sistema inmunitario y aliviar el dolor. Para las parejas, el tacto comunica afecto y aceptación, lo que desempeña un papel importante a la hora de favorecer la intimidad.

Cuando la gente habla de intimidad en las relaciones, suele centrarse en el sexo; sin embargo, hay muchos tipos de intimidad, como la emocional, la intelectual, la espiritual y la física. A menudo están interconectados y se fomentan unos a otros. La intimidad física —tanto el contacto sexual como el no sexual— ayuda a fomentar la conexión y el bienestar general.

Como todo en una relación, la intimidad física evoluciona a medida que las personas cambian y surgen nuevos desafíos. Con la enfermedad de Parkinson (EP), cambio de roles en las relaciones, los problemas de autoestima, el estrés, los efectos secundarios de la medicación y los síntomas de la EP —incluyendo problemas de movimiento, los cambios de estado de ánimo, los problemas urinarios y la fatiga—, pueden influir en la salud sexual y la intimidad física. Los cuidadores también experimentan estrés, depresión, fatiga y otros problemas de salud a lo largo del tiempo, que pueden afectar la conexión física.

Nuestra nueva Serie de Bienestar Mental está dedicada a las conversaciones sobre salud mental. Este artículo complementa nuestra mesa redonda virtual, Redefiniendo la intimidad en la enfermedad de Parkinson y más allá en la que participa la terapeuta sexual certificada Gila Bronner, Máster en salud pública (MPH). Los siguientes consejos pueden ayudarle a encontrar nuevas formas de construir la intimidad con su pareja mientras navegan los desafíos relacionados con la EP:

1. Establezca una conexión con su pareja

Las presiones de la vida y el estrés cotidiano de vivir con una enfermedad crónica como la EP pueden hacer que las parejas se distancien. Busquen formas de mantenerse conectados y seguir creciendo juntos. Compartan sus pensamientos y sentimientos. Pasen tiempo de calidad juntos. Den un paseo, queden para tomar un café, léanse en voz alta el uno al otro, vean una película divertida o tomen clases de baile; cualquier cosa que los una como amigos y reduzca el estrés.

Hablar de sexo o de intimidad física puede resultar incómodo y frustrante. Muchas parejas necesitan ayuda en estas conversaciones. No teman buscar terapia o unirse a un grupo de apoyo, juntos o por separado. Llame a la Línea de Ayuda de la Parkinson's Foundation al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para encontrar un consejero o un grupo de apoyo.

2. Disfrute del momento

Incluso un solo minuto de contacto físico puede aumentar las hormonas de la "felicidad", como la oxitocina y la serotonina y reducir el cortisol y la noradrenalina y otras hormonas del "estrés" que pueden provocar ansiedad e inquietud. Tener expectativas de que el contacto físico conducirá a un resultado concreto puede eliminar el placer de la experiencia, generar ansiedad o incluso provocar temor.

En lugar de planificar un resultado concreto, busque la conexión y el placer. Ponga algunas canciones, tómese su tiempo para intercambiar suaves caricias con su pareja, como acariciarse la cara, los brazos o los hombros y disfrute de la experiencia, sin exigencias ni expectativas.

3. Amplíe sus horizontes

A menudo se ha dicho que la comparación es el ladrón de la alegría. Definir la intimidad física en función de lo que significa para los demás, de lo que nos han dicho que debería significar para nosotros o de lo que ha significado para nosotros en el pasado puede mermar nuestras propias experiencias.

Si usted y su pareja experimentan un deseo sexual desigual, hablen de ello. ¿Se debe al estrés, la fatiga, las hormonas, la EP u otro problema de salud? El deseo y las actividades sexuales cambian con los años por diversas razones.

Mantenerse conectado a través del tacto es vital para una relación sana y afectuosa. Intenten encontrarse uno con otro en el punto en que se encuentran. Por supuesto, si ambos están de acuerdo, la actividad sexual no tiene por qué detenerse sólo porque ya no pueda ser como antes. Puede que necesiten adaptar sus técnicas, explorar modificaciones o incluso planificar esos momentos que van más allá del tacto sensual.

4. Hable de la intimidad con su equipo de atención médica

Muchos síntomas de la EP afectan la salud sexual en hombres y mujeres, así como la capacidad para tocar, estar cerca, comunicarse o incluso concentrarse. Algunos de estos problemas pueden tratarse, pero puede ser difícil saber a quién pedir consejo.

Para las personas con Parkinson y sus cuidadores, hablar con un profesional médico con el que se sientan cómodos suele ser el primer paso, sugiere Gila Bronner. Su neurólogo, médico de atención primaria u otro profesional sanitario puede ofrecerle asesoría, tratamiento o remitirle al especialista adecuado, como un urólogo, terapeuta sexual o consejero.

5. Tenga cuidado con los efectos secundarios de los medicamentos

Los medicamentos agonistas de la dopamina, utilizados a veces para tratar los síntomas de la EP, pueden provocar problemas de control de impulsos y de hipersexualidad. Las personas que experimentan estos problemas corren el riesgo de ponerse a sí mismas o a otros en situaciones inseguras o insalubres. Si nota estos efectos secundarios, comuníqueselo inmediatamente al neurólogo, ya que puede ser necesario reducir o suspender estos medicamentos.

Otros medicamentos, como los que se toman para la hipertensión o los antidepresivos, también pueden afectar la función sexual. Comente cualquier preocupación sobre los efectos secundarios de la medicación o su salud sexual con su médico, quien puede recomendarle ajustes de la medicación o terapias adecuadas.

Recursos útiles

La Parkinson’s Foundation está a su disposición. Explore más de nuestros recursos sobre el bienestar mental:

• Blog sobre ‘Problemas de intimidad y la enfermedad de Parkinson 101’
• Hoja informativa sobre ‘Navegando el control de impulsos y la hipersexualidad con la enfermedad de Parkinson’
• Hoja informativa sobre la ‘Fatiga y trastornos del sueño’

The need to belong and form relationships is as basic as our need for food and water. In fact, studies show loneliness can negatively impact our physical and mental health, possibly contributing to a number of health conditions, such as poor sleep, depression and thinking changes.

If you are living with Parkinson’s disease (PD), you may be at an even higher risk for feeling lonely and disconnected. Movement symptoms, such as stiffness, slowness and balance problems, can interfere with mobility and the ability to navigate group situations. Tremor and dyskinesia (involuntary movements) — at times visible to others — may lead to avoidance of social settings. Though less recognizable, non-movement symptoms, including fatigue, anxiety, depression and apathy, can also cause people to withdraw.

Our new Mental Wellness Series is dedicated to mental health conversations. This article accompanies our virtual round-table conversation, Finding Connection and Support While Living With PD. The following tips can help you build meaningful connections and stay engaged.

1. Make plans strategically.

Being social is tough when you’re feeling stiff, tired, depressed or anxious, but it’s important to stay engaged, even if you don’t feel like it. Set time aside to connect with your family, friends and neighbors every day — in person, over the phone, by text or through social media.

Build social activity into your routine by scheduling outings (such as exercise or hobbies with friends) a week in advance. Let your new friends know (and remind old friends) that Parkinson’s is not always the same or predictable. Meeting times may need to shift now and then, and that’s OK. If you are worried about “off” times, coordinate your social activities with medication “on” times.

2. Connect with the right support for you.

Just as the best partners and friends empower us to shine, the right social groups are ones that make us feel understood, encouraged and welcome. For some people, finding people who share common ground — perhaps of a similar age or cultural background — can be key to feeling comfortable and seen. Participating in Parkinson’s-specific support groups, exercise classes and events provides opportunities to connect with people who understand what you are going through.

“When I first got diagnosed, you know, I didn’t see anyone like me. I now have a family that I never thought I would have.”
—Gregory, person living with Parkinson’s

Ask your healthcare team or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for information on groups in your area. Explore PD Conversations, our online network of support, or consider getting involved with your local Parkinson’s Foundation chapter.

3. Branch out.

Loneliness can run deep or come and go. Though it may be easier for people living alone to lose connection with others, even those surrounded by family and friends can yearn for a different kind of connection. Fostering relationships in different social spheres among family, friends and community builds a strong web of support to help you navigate the day-to-day challenges of Parkinson’s.

Look for opportunities to make an impact in any way that speaks to you. Some options include supporting a friend in need or getting involved in a cause close to your heart. Consider volunteering to help make life better for people living with Parkinson’s.

4. Reconnect with your passions.

Facing changes in your abilities can be disheartening, but don’t let yourself get stuck. Explore ways to modify an activity or change your environment to continue doing what you enjoy. For example, golfing may look different. Maybe now you play nine holes instead of 18. Fortunately, humans can adapt, find joy and create meaning even under difficult circumstances — particularly when we stay connected and engaged.

Did you know an occupational therapist can also help you discover ways to adapt your favorite pastimes and stay engaged with people?

5. Rely on your healthcare team.

Breaking out of your shell when you are feeling lonely and isolated is no small feat. Lean on your healthcare team. One of your providers could be the lifeline you need to get out of a dark place, either by asking a question that helps you recognize mood changes or prompting you to seek mental health treatment.

Your healthcare team is there to help support your goals and work with you to identify the best treatment options. You may need to switch providers to find the right fit for you.

“The nurse told me, ‘You know, you're going to be working. You're going to be doing things.’ Basically, she was challenging me. I was in total darkness. I didn't go anywhere. I didn't do anything. But that little window of opportunity switched my light on and, before I knew it, I was participating in boxing and the rest is kind of history.”
—Alharvey, person living with Parkinson’s

Helpful Resources

The Parkinson’s Foundation is here for you. Explore our mental wellness resources now:

• Episode 110: Social Isolation and Loneliness
• PD Solo Network
• Dealing with Relationship Change

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:

• Webpage: Sexual Health
• Video: Redefining Intimacy in Parkinson's Disease & Beyond
• Podcast Episode: Navigating Sexuality and Intimacy with PD

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

More than half of people with Parkinson's disease (PD) will experience a fall over the next year. While some falls might result in minor scrapes or bruises, others can be life-changing, impacting mobility and more. Keep reading for how trouble moving and walking and other PD symptoms can contribute to falls and how to lessen the risk.

This article is based A Balancing Act - Freezing and Fall Prevention in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Colum MacKinnon, PhD, Professor, Department of Neurology, Institute of Translational Neuroscience, University of Minnesota. Watch the webinar now.

Breaking the Cycle

As we age, our strength can decline. Movement symptoms of Parkinson’s can impact strength, creating a frustrating cycle: gait difficulties and postural instability can lead to falls, which can create fear of falls, causing less movement. Lack of physical activity is associated with depression, apathy, constipation, sleep problems, fatigue and cognitive decline. Other complications can include cardiovascular disease and osteoporosis. This combination of challenges can further increase movement difficulties. Breaking this cycle is essential.

The extensors and flexors of the muscles of people with PD tend to be much weaker than those of the general population.

• Extensors are the muscles in areas such as the ankles, knees, glutes and hips that support us against gravity.
• Flexors, such as plantar muscles in the foot, help us bend limbs.

In PD, extensor weakness is often greater than flexor weakness. Regularly working to strengthen all these muscles can keep you safely moving forward.

People with PD who exercise regularly can move more normally than those who do not. Studies show moderate to high-level intensity exercise may be neuroprotective. Adding range of motion movements along with activities that increase postural challenge and cognitive load, as needed, can get you back to better, more stable movement.

Strength Training and Movement  

Aim for progressive resistance strength training that safely increase weight over time, two to three times per week for 20 to 60 minutes or more. Continue to increase weight as needed and target all the major muscle groups from top to bottom.

Target all major muscle groups, but focus specifically on:

• Extensors (ankle, knee, hip and back)
• Hip flexors and extensors
• Hip abductors and adductors

Progressive resistance exercise may be most beneficial when combined with:

• Instability training: using unstable surfaces to strengthen muscle groups, such as using a wobble board or stability ball.
• Flexibility exercises and tasks that focus on a large range of motion, such as stretching and yoga.

Overcoming Built-in Instability

When thinking about fall prevention, far too often we focus on the legs and feet, but controlling the upper body is the bigger struggle for people with Parkinson's.

A natural challenge to all humans is the two-thirds/two-thirds problem, which means that two-thirds of your body mass is located two-thirds of your body height above the ground. This is inherently unstable. Overcoming this is something we take for granted every time we take a step. If you are a 150-pound person, 100 pounds of your body is sitting two-thirds of the height off a small, invert-dependent, unstable base of support.

When standing, your center mass is within your base of support, but as soon as you start moving your center mass is outside your base of support. The real challenge to maintain balance and walk is controlling this big mass up high. Parkinson’s adds to this challenge.

Balance Basics and Fall Prevention Tips

A person’s body must provide vertical support against gravity to maintain balance when walking. This is critically dependent upon control of your trunk. Keep your head stable. You also want to make sure you have a clear path for your feet and good toe clearance to take a safe step.

Your center mass normally sits right behind your belly button and helps you maintain balance. If you're standing, your center mass projects downward — directly between your feet, slightly in front of your ankles. If you lean forward, your center mass moves forward. If you experience freezing or posterior instability, this moves your center mass outside of your normal base of support.

To prevent falling, use one of these simple tips to keep yourself stable:

• Widen the width of your stance to move center mass.
• Rotate your feet outwards to boost your side-to-side support and lessen dependence on your front-to-back base of support.
• Stagger your feet to increase the width and length between them.

Be sure you are stable or have nearby support when practicing any of these tips in case something bumps you or you lose your balance.

If are standing still and you want to move forward, it can require you to take a step and reestablish a new base of support. Or if you're bumped, for example, and your center of gravity goes outside your base of support, taking a big step forward can help you re-establish your balance.

When your center mass moves forward and your step is not big enough — which can often happen when people experience freezing — your center mass continues to be outside your base of support and you're still in a state of falling, even though you took a step. This requires you to take a second step (or more) to reestablish a new base of support. That must be done very quickly.

Recognize Falls Risks

Falls in Parkinson's disease can cause significant disability and loss of independence. While aging may put us all at an increased risk for falling, the risk of hip fracture is four times higher in people with PD. About 60% of people with PD fall each year — two-thirds of these people fall several times throughout the year. The severity of and frequency of falls can increase as Parkinson’s progresses.

The consequences can include fear of future falls, injury, reduced quality of life and high levels of stress for care partners and loved ones.

About 80% of the falls in PD are due to postural instability (difficulty maintaining balance while standing or walking) and episodes of “freezing” of gait, which is the temporary, involuntary inability to move.

Freezing initially responds well to levodopa dopamine replacement therapy but can become medication resistant over time. Deep brain stimulation (DBS), which involves surgically implanting small electrodes into specific brain regions, can also reduce or eliminate freezing, but for many, freezing eventually returns. Establishing early exercise habits is critical.

People with PD fall most frequently during:

• Turns
• Bending forward
• Standing up
• Initiating walking or trying to avoid an obstacle

Self-induced movements of the center mass are the dominant cause of PD-related falls. The first step of people with Parkinson's is often too short and even shorter for those experiencing freezing. This combination shrinks the base of support for your body’s trunk. When your trunk gets ahead of your feet and your step is too small to balance it all, the likelihood of a fall is higher.

Physical and occupational therapy can improve balance, posture and sense of position to minimize freezing and falls. LSVT BIG is a PD-specific treatment that focuses on making big movements with vigor and intensity and practicing awareness of your legs, trunk and feet.

Proceed with Care

About half of people with Parkinson's will experience a freezing episode. As PD advances, the likelihood of freezing increases. Knowing how to spot the features and causes of freezing episodes can help you take action to prevent falls:

• At the onset of an episode, the foot or the toes do not leave the ground, or barely clear the supporting surface.
• Freezing features can include faster, shorter shuffling steps (known as hastening).
• Depending on the severity, knee trembling or a complete lack of movement lasting anywhere from one to 30 seconds, can accompany freezing.
• Some people will freeze in one direction and not in the other. Freezing can also be asymmetric — different on one side of the body than another.
• Freezing episodes and falls typically happen during transitions, when moving from one state of movement to another. Even stepping into a darkened room can make freezing more pronounced. Exercise caution when attempting to turn, when you're passing through narrow or congested pathways, such as approaching a doorway, or while approaching your destination, such as a chair.
• Anxiety, stress and dual tasking (such as talking on the phone or to a friend while trying to walk at the same time) can also increase the severity and frequency of freezing.
• “Off” freezing, which can occur when someone is due for their next dose of dopaminergic medications, usually lessens after taking the medicine.

After a freeze has occurred, there's often a period of alternating trembling of the legs at a frequency somewhere around 3 to 8 times per second. Any further attempt to step during this time is unlikely to be successful and the likelihood of a fall is higher. At this point, before moving forward, it’s important to:

• Stop.
• Get yourself back to a stable, balanced, standing posture.

Using a visual cue, such as “step over my foot” can help some people take the next step. Counting or clapping a rhythmic beat can also be helpful.

Slowing down, reducing your rate of movement, being aware of where your limbs are and making large movements with intensity are very important steps in improving your balance, creating stability and preventing falls.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about optimizing movement in PD with our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636).

• Read Walking with Parkinson’s: Freezing, Balance and Falls for more tips on moving well.
• Get moving with our PD Health @ Home Fitness Fridays.

Researchers announced results from the largest study yet of a new test to detect Parkinson’s — it confirmed that the test was accurate, even for early Parkinson’s.

There is currently no single test that can confirm a Parkinson’s disease (PD) diagnosis. Doctors rely on symptoms and in-office tests to make a diagnosis, meaning the disease has most likely progressed years before symptoms are present. However, a recent study adds promising new data to bolster support for a test that may allow Parkinson’s to be diagnosed before symptoms appear and may help inform Parkinson’s clinical trials.

A hallmark of Parkinson’s is a protein called alpha-synuclein, which is involved in normal brain cell function. However, for many with Parkinson’s, the alpha-synuclein protein clumps or misfolds, meaning it is not shaped properly. Certain forms of misfolded alpha-synuclein may act as “seeds” that spread and lead to misfolding of healthy alpha-synuclein. These misfolded proteins can clump together, and eventually kill brain cells.

Prior work supported by the Parkinson’s Foundation, has shown that the alpha-synuclein “seeds” can spread from cell to cell, much like the dye from a red sock in the washing machine can turn everything pink. Because these protein “seeds” are at very low levels, researchers have re-purposed technology originally developed 20 years ago to test for prion diseases to amplify the misfolded alpha-synuclein in Parkinson’s. The test is called an alpha-synuclein seed amplification assay (SAA). Several small studies have previously shown that this test can distinguish between people who do or do not have Parkinson’s.

On April 12, 2023 The Lancet published the largest test of alpha-synuclein SAA to-date. Andrew Siderowf, MD, neurologist at University of Pennsylvania, Luis Concha-Marambio, PhD, research and development director at Amprion, and colleagues analyzed samples from 1,123 participants who were enrolled in the Michael J Fox Foundation’s Parkinson’s Progression Markers Initiative (PPMI), which includes individuals from 33 outpatient neurology practices worldwide.

The participants included 163 healthy volunteers, 545 people with Parkinson disease, 54 people who had evidence of the disease on brain scans, 51 people who had conditions that often later develop Parkinson’s (but did not yet have Parkinson’s symptoms), and 310 people who had gene mutations that are associated with Parkinson’s but did not yet show symptoms.

The alpha-synuclein SAA test detected early Parkinson’s 87% of the time. In volunteers who did not have Parkinson’s, the test showed the absence of the disease 96% of the time. Surprisingly, only 70% of individuals with mutations in their LRRK2 gene, which has been associated with Parkinson’s, had abnormal alpha-synuclein. This observation could have implications for LRRK2 treatments that are currently being developed — perhaps not all individuals with LRRK2 mutations will respond equally to the treatment.

The test’s ability to detect early abnormal alpha-synuclein Parkinson’s makes it a promising potential tool. Though it is not currently commercially available for diagnosing Parkinson’s, it may soon become useful in Parkinson’s clinical trials by helping researchers learn more about the individuals enrolled and in recruiting people at earlier stages. An editorial in The Lancet called it “a game-changer in Parkinson’s disease diagnostics, research, and treatment trials.”

Study Results

• Alpha-synuclein seed amplification assay detected early Parkinson’s 87% of the time
• In volunteers who did not have Parkinson’s, the test showed the absence of the disease 96% of the time

What does this mean?

This method of detecting abnormal alpha-synuclein could be an effective way to detect Parkinson’s years before symptoms appear. Earlier detection would allow for earlier treatment once researchers identify a successful disease-modifying drug. In addition, in its current form, the test can only tell if a person has abnormal alpha-synuclein, NOT how much and how it is changing over time.

Additionally, researchers could use this method to recruit people with early-stage Parkinson’s to clinical trials. It could also help determine the effectiveness of treatments in clinical studies. For example, if a drug treatment reduces abnormal alpha-synuclein over time, it could indicate that the treatment is having an effect.

However, a downside to this test is that it requires a lumbar puncture, also called a spinal tap, to obtain samples of cerebrospinal fluid (CSF). A lumbar puncture can be uncomfortable and requires a specialist physician. It may also cause short-term side effects like headache.

Research Springboard

Studying seed amplification assays to detect and monitor the progression of Parkinson's is a large and growing field of research that brings hope. In 2014, SAA's were applied specifically to detect alpha-synuclein, and researchers have been working on improving them ever since.

Researchers in the PD field are working to develop a quantitative test — an alpha-synuclein SAA test — that finds the presence of alpha-synuclein and measures the amount of abnormal alpha-synuclein. A test like this could be used to see if the alpha-synuclein amount changes with the disease progression, symptom appearance and specific treatments. The hope is to develop an alpha-synuclein SAA test using samples from blood, nasal mucosa, skin and other body fluids that do not require an invasive procedure.

Concurrently to this study, Parkinson's Foundation research grantee, Giovanni Bellomo, PhD, is looking into ways to improve the alpha-synuclein SAA test. Dr. Bellomo is studying whether mucus in the nose can be used to detect SAA, instead of cerebrospinal fluid. Early PD-related alpha-synuclein changes can be found in the olfactory mucosa, which is collected using a swab to scrape the inside of the nose. Dr. Bellomo will compare the results of SAAs and olfactory mucosa collected from people with and without PD. This non-intrusive test would represent a breakthrough in Parkinson's diagnosis, as no such test currently exists.

In addition, he is looking into developing a more clinically useful test that can be reproduced (obtain the same results) in different labs. Lastly, Dr. Bellomo and his team are also developing a way to utilize SAA’s to measure the amount of abnormal alpha-synuclein and how it correlates with movement and non-movement symptoms. The first results of Dr. Bellomo studies were published on April 1, 2023. Learn more about this current study. 

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

Although alpha-synuclein seed amplification assay may be available through a doctor’s office, it is not yet a standard of care and it does not change how doctors diagnose and treat PD. Questions remain about interpreting the results, especially for people who have may genetic forms of PD or do not yet show symptoms of PD. Therefore, it will require additional research and time before the test could become useful as part of routine care. In addition, the test is not covered by medical insurance and is cost prohibitive. Nevertheless, studies like this one are an important step toward allowing the medical research field to establish a test 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.

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