Deciphering How the Gut May Play a Role in Disease Development and Progression
When life gets confusing or difficult, a common piece of advice is to stop and ask: “What is your gut telling you?” For Benjamin Dehay, PhD, recipient of a Parkinson’s Foundation Impact Award, the phrase is literal: he and his research team (Dr. Ariadna Laguna Tuset from Barcelona and Dr. Laura Parkkinen from Oxford) study how the gastrointestinal tract (the gut) may play a role in the development and progression of Parkinson’s disease (PD).
A major hallmark of PD is the misfolding (or clumping) of a brain protein called alpha-synuclein found inside neurons. These clumps often spread from cell to cell, eventually causing cell death and, ultimately, contributing to the progression of the disease. As neurodegeneration spreads in the brain, it leads to noticeable and eventually worsening symptoms.
Recent research has shown that alpha-synuclein, previously only observed in the brain, can also be found in the enteric nervous system, which monitors and manages gastrointestinal function. Not only might this explain why people with PD experience gut-related symptoms like constipation, but it may also reveal a new origin point for the disease.
Animal studies have shown that alpha-synuclein might travel between the gut and brain along the vagus nerve — which connects the brain to the gut — suggesting that initial alpha-synuclein clumps could potentially originate in the gut before spreading to the central nervous system.
Dr. Dehay and his team at the Institute of Neurodegenerative Diseases in Bordeaux, France, and his collaborators will investigate how misfolded alpha-synuclein proteins in the gastrointestinal tract may differ from the ones found in the brain and whether such differences affect disease progression.
First, Dr. Dehay will extract alpha-synuclein clumps from post-mortem brain and colon (part of the gut) tissue samples of people with Parkinson’s. He will compare their size, shape, and ability to form larger, more disruptive clumps.
Next, we will inject gut-derived alpha-synuclein into the brains of one group of aged mice and brain-derived alpha-synuclein into the guts of another group of aged mice and monitor the mice’s behavioral and biochemical health. This comparison will allow Dr. Dehay to measure differences in disease progression, depending on which direction alpha-synuclein clumps travel along the gut-brain axis.
Speaking on the impact of his research with this Parkinson’s Foundation support, Dr. Dehay said, “Thanks to this award, our ultimate ambition, using state-of-the-art technologies, unique human samples, and experimental expertise, is to provide direct evidence of how gastrointestinal tract- versus brain-derived alpha-synuclein aggregates spread and become toxic in mice along the brain-gut axis.”
By investigating the various structures and biochemical properties of the hallmark protein in PD in different regions, we can enhance our understanding of the disease, create new treatments and diagnostic tools, and ultimately improve outcomes for people with Parkinson’s.
Exploring the Biological Benefits Connecting Exercise and Dopamine Release
There are countless health benefits associated with exercise, including enhanced energy, increased stamina and improved sleep quality. Routine physical activity has also been shown to positively impact people with Parkinson’s disease (PD), improving movement symptoms and executive (high-level thinking) functions. However, the biological reasons behind these benefits have remained a mystery, one that Margaret Rice, PhD, hopes to solve with support from her Parkinson’s Foundation Impact Award.
Dr. Rice is a Professor at the New York University Grossman School of Medicine. She has shown that male mice with access to a running wheel have increased release of dopamine, the neurotransmitter important for movement and progressively lost in PD, compared to mice prevented from exercising. These “runner” mice also exhibited increased levels of brain-derived neurotrophic factor (BDNF), a protein involved in the formation and growth of new neurons. Taken together, Dr. Rice and her team hypothesize that exercise increases BDNF in the brain, which in turn boosts dopamine release and reduces the negative motor effects of aging and PD.
To test her hypothesis, Dr. Rice will first recreate her previous experiment with female mice, evaluating whether the exercise-induced increases in dopamine and BDNF remain consistent across both sexes. Though taking this step, Dr. Rice recognizes the existence of sex-specific differences in PD and other health conditions, emphasizing the importance of conducting comprehensive testing and appropriate considerations to ensure equity and unbiased medical research.
Next, Dr. Rice will see if exercise can improve the neurological and behavioral health of mice that serve as models for PD. These mice express a mutation of the PARK2 gene [learn more about genetics and Parkinson’s, causing them to experience loss of dopamine neurons in a similar manner as is seen in human PD. Using the same running wheel setup as before, she will compare the movement behavior, dopamine release, and BDNF levels of the PD-model mice with and without the ability to exercise. She will test whether PARK2 mice allowed to run for 28 days gain a boost in dopamine release show improvement in motor behavior.
Dr. Rice and her team’s research is centered on the guiding principle of better understanding the mechanisms behind Parkinson’s. “Understanding these mechanisms is necessary to develop repair or replacement strategies when regulation goes awry, as in PD…. This work will provide new mechanistic insight into beneficial effects of exercise in PD, and thereby identify pathways that could be harnessed for PD therapeutics.”
How a Neurologist is Using Data to Make Parkinson’s Research and Care More Inclusive
Life with Parkinson’s disease (PD) is unique to every person. The journey to a diagnosis, symptoms and disease progression varies. Roshni Patel, MD, MS, believes that diverse and inclusive care practices and research recruitment are key to ensuring access to quality care for everyone, and to learning more about PD.
“There has been a push for more diverse and inclusive patient recruitment in Parkinson’s research studies,” Dr. Patel said. “And that push actually led me to a subtopic I've become very interested in – LGBTQ+ health and neurology. Not much is known about LGBTQ+ health in Parkinson’s. People with Parkinson’s have high rates of mood disorders, depression and anxiety, and it’s also been shown that LGBTQ+ patients with other neurological disorders have high rates of those symptoms, so I wanted to see if LGBTQ+ people with Parkinson’s may be at a higher risk for mood disorders.”
During her movement disorders fellowship at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, Dr. Patel reviewed recent self-reported survey data where she looked at the movement and non-movement symptom burden among LGBTQ+ people with Parkinson’s. This is one of the first studies looking at Parkinson’s symptom burden for LGBTQ+ people and could inform care practices for this population. She recently submitted her findings and is awaiting publication.
During her fellowship, Dr. Patel became interested in epidemiological research (the study of diseases as they relate to populations), where she used large datasets to answer questions. In her current role as a neurologist at Jesse Brown VA Medical Center, Dr. Patel splits her time between seeing patients and conducting research. While she has access to the VA system’s robust clinical database, she is excited to see the current trend in research is making more data open access.
“The move to make more data available for any researcher to access and analyze is really promising,” she said. “It offers the chance for new people to take a look and possibly see new things that the original researchers might not have thought about or looked at. It can hasten discoveries and makes things more transparent.”
She also believes that genetic studies of Parkinson’s, like PD GENEration: Mapping the Future of Parkinson’s Disease, can make a big impact. “Access to data from a big genetic cohort will be amazing,” she said. “I think that data will speed up the rate of discovery in terms of identifying genetic risk factors.”
Lately, through patient visits, Dr. Patel has noticed a trend of increased telehealth neurology opportunities. The ability to see a movement disorders specialist virtually improves inclusivity since it simplifies access to care. One program she is excited to get more involved with offers telehealth neurology visits to veterans in rural areas who do not have access to a neurologist. Participants wear a device similar to an accelerometer that measures their movements and generates a report that helps their doctor see their movement response to their medications.
“This program will be a good proof of concept to show that in a cohort of telemedicine-only Parkinson’s patients, a doctor could manage their movement Parkinson’s symptoms with a remote body-worn sensing device that provides objective data. Something like this has the potential to greatly increase access to care.”
Dr. Patel credits her Parkinson’s Foundation fellowship for her deep interest in leveraging data to find Parkinson’s disease trends and information that can be helpful for doctors and people with PD — along with her passion for improving inclusivity in PD research and care.
“This unique two-year fellowship gave me time to both care for patients and develop a research interest and learn more about the research process,” she said. “Research fellowships need funding. The Parkinson’s Foundation is essential because it allowed Rush to provide that fellowship to me.”
The Parkinson’s Foundation is proud to provide several types of grants that encourage young clinicians and researchers like Dr. Patel to devote their talents to the study of Parkinson's disease.
Unraveling How Parkinson’s Progresses: The Role of a Lesser-Studied Brain Cell
When it comes to Parkinson’s disease (PD) research, neurons are often the center of attention. However, there are many other important types of cells in the brain that are worth investigating, a fact known well by Lena Burbulla, PhD, recipient of a Parkinson’s Foundation Impact Award. From her lab at Ludwig Maximillian University (LMU) in Munich, Germany, Dr. Burbulla devotes her attention to oligodendrocytes, a lesser-studied brain cell type that she believes may play a larger role in Parkinson’s progression than currently thought.
The main function of oligodendrocytes is to produce myelin, a fatty substance that wraps around neurons and enables the proper transmission of electrical signals — much like a blanket or a sheath. It has long been known that these myelination blankets provide critical insulation to the fragile neurons, but only recently have they been found to also facilitate the transfer of important nutrients and antioxidants to keep the neurons healthy and protected.
What is an oligodendrocyte?
Oligodendrocytes are a type of cell found in the brain. They create a fatty substance called myelin that wraps around neurons, much like a blanket or a sheath. This action helps protect the vulnerable parts of brain cells and keeps them firing normally.
Though recent studies have suggested a causal role of oligodendrocytes in PD, these results are puzzling, since only a few of the specific neurons lost in PD are myelinated. This raises compelling questions as to how oligodendrocytes are linked to the disease if not much myelination is needed by the affected neurons.
Dr. Burbulla seeks to uncover answers to two major questions:
How do oligodendrocytes in people with Parkinson’s differ from those without PD?
How do oligodendrocytes malfunctioning due to Parkinson’s-associated mutations affect neurons?
To find answers, she will first study possible differences of oligodendrocyte numbers and distribution in post-mortem brain tissue of people with Parkinson’s and healthy donors. As a second approach, Dr. Burbulla will utilize induced pluripotent stem cell (iPSC) technology to reprogram skin cells from people with PD and healthy donors into oligodendrocyte cultures, effectively generating large numbers of brain cells without any surgery or dissection needed.
Using these in vitro disease models (meaning they take place outside the body), Dr. Burbulla will measure and compare the cellular levels of important metabolic proteins and markers of neuronal function and health, determining in what ways oligodendrocytes of people with PD differ from those of healthy controls.
With help from her co-investigator Sarah Jaekel, PhD, Dr. Burbulla will next create 3D oligodendrocyte organoids (“mini brains,” as she calls them). She will generate these mini brains both from iPS cells with and without Parkinson’s-associated mutations, with the goal of studying how such mutations may impact neuronal health.
Excited to begin her work with the support of a Parkinson’s Foundation Impact Award, Dr. Burbulla said “Receiving this award is a great honor for me. I have worked hard over the last years at various national and international institutions to expand and strengthen my expertise in PD research…Only with this kind of support, will I and my team be able to advance the understanding of the underlying molecular mechanisms that lead to the demise of neurons in PD.”
Utilizing Targeted Ultrasound Waves to Help Alleviate Freezing of Gait in Parkinson’s
Robert Chen, MA, MB BChir, MSc, FRCPC, of Toronto Western Hospital and recipient of a Parkinson’s Foundation Impact Award, will be exploring how using ultrasound waves targeted at specific regions of the brain might alleviate movement impairments in people with Parkinson’s disease (PD).
Dr. Chen and his team are interested in treating the common PD symptom known as freezing of gait — when people with Parkinson’s are suddenly unable to move their feet, no matter how hard they try. While freezing episodes often only last seconds, unexpected freezing of gait episodes can lead to serious falls and injuries. Current PD medications do not address freezing of gait, driving further research into alternative treatments.
What is freezing of gait?
Some people with Parkinson’s may experience “freezing” episodes —the temporary, involuntary inability to move. Usually, freezing lasts a few seconds, but it is one of the more frustrating and dangerous symptoms of PD as it can lead to falls.
Recent studies have found that freezing of gait may be related to overactivity in the cerebellum, a structure deep within the brain responsible for posture, balance and coordination of movement. Transcranial magnetic stimulation (TMS), a non-invasive treatment involving the activation of neurons using magnetic pulses, has shown success in managing similar movement symptoms of PD. However, TMS is unable to reach the cerebellum effectively, limiting its use in treating freezing of gait.
Where TMS falls short, Dr. Chen will be investigating if transcranial focused ultrasound (TUS) can go the distance. TUS uses ultrasound acoustic waves to stimulate neurons in a manner similar to TMS; however, ultrasound waves can penetrate deeper into the brain than magnetic waves, making TUS an ideal candidate for reaching the cerebellum and treating freezing of gait in Parkinson’s.
With help from the Toronto Western Hospital Movement Disorders Clinic, a Parkinson’s Foundation Center of Excellence, Dr. Chen will be enrolling 25 people with Parkinson’s who experience freezing of gait for his study. These participants will undergo MRI and CT scans of their brain before and after undergoing either TUS or a placebo treatment (where the ultrasound waves will not be directed to the brain), allowing Dr. Chen to calculate and measure the effects of ultrasound stimulation on the area of the brain related to freezing of gait. The participants’ freezing of gait symptoms will be assessed before and after treatment as well, determining whether TUS can help alleviate freezing of gait in people with PD.
Speaking about his Parkinson’s Foundation Impact Award, Dr. Chen said, “The support from the Parkinson community is strong encouragement for me to be fully engaged in Parkinson’s research to improve the lives of people with Parkinson's disease. This research will increase our understanding of the pathophysiology of Parkinson's disease, particularly freezing of gait, which is disabling and is resistant to current treatments. This will lay the foundation for the development of transcranial ultrasound stimulation as new, non-invasive treatment for Parkinson's disease.”
A New Test Could Detect Parkinson’s Before Symptoms Appear
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 adiagnosis, 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.
Parkinson’s Foundation Presents Findings on Depression, Genetics and Palliative Care at Annual Neurology Meeting
More than 10,000 neurology professionals gathered to learn the latest in research and treatments at the American Academy of Neurology Annual Meeting in Boston, MA. This year, the Parkinson’s Foundation hosted a presentation and shared two posters in research and care. Notably, the Foundation’s PD GENEration: Mapping the Future of Parkinson’s study received special distinction and was selected as an oral presentation as part of the session on Movement Disorders Genetics and Risk.
1. Screening and Treatment of Depression in Parkinson's Disease Within Movement Disorders Centers
It is estimated that 50% of people with Parkinson’s experience depression. Regularly screening for depression among people with PD can help identify untreated depression and prompt treatment. In this new study using data from our Parkinson’s Outcomes Project, we studied whether offering a systematic screening for depression (including the use of the Geriatric Depression Scale (GDS-15)), can help improve quality of life.
Study takeaways:
Five Centers of Excellence began providing depression screening, diagnosis and treatment practices, and evaluated them through medical record reviews.
During the implementation phase, when the formal screening rates where all done with a validated screening instrument (GDS-15) it was found that 68% of people with Parkinson’s reported symptoms of depression across the five sites.
Prior to offering a systematic depression screening, screening rates for depression ranged anywhere from 56 to 92%, but only 14% used a validated screening instrument.
Systematic screening for depression will help improve the standard of care and quality of life by educating clinicians and people with PD.
Authors: James C. Beck, PhD, Janis Miyasaki, MD,FAAN, Connie C. Marras, MD, Nabila Dahodwala, MD,FAAN, Kelly A. Mills, MD, Meredith Spindler, MD,FAAN, Daniel Weintraub, Eugene Nelson, Sneha Mantri, MD, Amy Brown, MD, Anna Naito, PhD, Zachary Meyer,Allison Marie Allen, Marilyn Neault, PhD
2. Frequency of Known Genetic Variants for Parkinson’s Disease in the PD GENEration Study Cohort
This presentation assessed the prevalence of genetic variants for PD through the Parkinson’s genetics study, PD GENEration. Widespread genetic testing will help inform previously unsuspected individuals with PD that they have a genetic mutation in one of the seven major genes known for PD, and ultimately qualify more people for enrollment in genetic-based PD clinical trials.
Study takeaways:
PD GENEration genetic testing shows that among participants, ~13% have a genetic variant linked to Parkinson’s.
Although reportable variants were more likely to be found in those with either young-onset PD high-risk ancestry or a positive family history, 8% of those without these features had a genetic variant for PD.
Authors: James Beck, Kamalini Ghosh Galvelis, Martha Nance, Anna Naito, Niccolo Mencacci, Ignacio Mata, Anne Hall, Jeanine Schulze, Rayza Priscila Hodges, Anne Marie Wills, Michael Schwarzschild, Karen Marder, Tanya Simuni, Mandy Miller, Jennifer Verbrugge, Lola Cook, Laura Heathers, Michelle Totten, Tatiana Foroud, Roy Alcalay
3. Outpatient Palliative Care for Parkinson’s Disease: Results from a National Survey
Palliative care, also known as supportive care, addresses physical, social, emotional and spiritual needs to improve the quality of life for a person with Parkinson’s and their family. Emerging evidence also shows that receiving palliative care improves patient and family-centered outcomes. However, little is known about the availability of resources and current practices among physicians in addressing palliative care needs in their clinics. The goal of this study is to describe the current availability of outpatient palliative care for people with Parkinson’s and their care partners at 33 US Parkinson’s Foundation Centers of Excellence.
Study takeaways:
A survey was sent to 665 healthcare professionals across 33 Centers of Excellence in the U.S.
15% screen for grief, guilt and additional spiritual concerns
4% report they discuss and review advance care planning documentation
Many physicians are currently assessing and managing important palliative care needs for their patients with room for improvement in certain key components.
Non-movement symptom screening is a more utilized palliative care component while referral to hospice when appropriate and discussing advanced care planning are reported less.
The impact my father’s Parkinson’s disease (PD) diagnosis had on my family was severe and palpable. I’m an only child, so it’s just my mom, dad and me. Shortly after Dad was told he had Parkinson’s in 2018, there was an aggressive narrowing of their independence in the span of about 90 days. My mom became the primary caregiver to my dad, and luckily, I only live about an hour away, so since I’m fairly close I can be there at almost a moment’s notice to help when needed.
It was hard on all of us — the uncertainty and unknowns related to my dad’s diagnosis, but also the change in the family dynamic. My mom is a boss, she was a manager for Bank of America and had an interesting and awesome career. At home, though, she relied on my dad to make the house run. They experienced a role reversal, and it took us all some time to find a new path forward.
I work in Nasdaq’s San Francisco, CA, office. About six months before my dad was diagnosed with PD, my boss at the time, Jeff Thomas, whose father also has PD, organized a company happy hour to support the Parkinson’s Foundation Moving Day San Francisco event. In that first year, as we all familiarized ourselves with Parkinson’s, Jeff became a great resource and comfort since he had lived through what I was experiencing. He encouraged me to check out the Foundation’s resources and helped me get involved in Moving Day.
Getting involved with the Parkinson’s Foundation felt like a way to do something for my mom. Living an hour away, I couldn’t be there every day to help take care of my dad, but raising awareness and money for Moving Day, and learning about resources from the Parkinson’s Foundation, gave my mom and I something to connect over outside of worrying for my dad.
Now, I am the California Chapter Advisory Board President and was the 2022 corporate chair for Moving Day San Francisco. I like participating in Moving Day because of the energy it brings to the office and the PD community. We’re just asking people to come out for a fun Saturday morning, bring your family and walk for a phenomenal cause. It’s an easy entry point to raise awareness and get more people involved.
I really appreciate the Parkinson’s Foundation mission and their commitment to helping people live well with PD. Things like the hospital safety kits and other resources provided to people with PD and their care partners and families make a huge difference.
The community I have met through the Parkinson’s Foundation and Moving Day San Francisco is made up of really exceptional people who have been so helpful. For anyone who is navigating a new Parkinson’s diagnosis or looking for resources and guidance, get involved with the Foundation and in your local community’s events. There are other people out there who have walked the same road, and making those connections is incredibly helpful.
My mom, Stepheny, would always say, “If you are creative, you will never be bored.” Her imagination and optimism stayed intact, even after being diagnosed with Parkinson’s disease (PD) in 2007. She was a talented visual artist, and her diverse portfolio ranges in scale, subject and medium.
Her advice to everyone was always to accentuate the positive. Despite her health challenges, including a tremor impacting her right side, she managed to heed her own advice and continued pursuing her passions. She would spend afternoons in art class, learning new techniques like woodblock printmaking and collage. She inspired me to look at everything with a creative lens, from my work in real estate development to television, film production and photography.
Shortly after my mom passed in January 2022, I was presented with the once-in-a-lifetime opportunity to be part of the producing team for A Beautiful Noise: The Neil Diamond Musical. As my first foray into Broadway, this musical was a natural fit, especially since I knew Neil was involved.
I have fond memories of listening to Neil’s greatest hits on vinyl with my mom — a true fan. I was also aware of Neil’s personal battle with Parkinson’s disease, and I knew this musical could be a platform to spread awareness for PD.
In honor of Parkinson’s Awareness Month, I am thrilled to announce that the producing team of A Beautiful Noise is raising money for the Parkinson’s Foundation. I am incredibly grateful to the other producers, investors, company members and theatergoers who have already contributed to this important cause.
I try to be like my mom every day. She exuded kindness, optimism, compassion and creativity. She will always be my inspiration. I know she would be very proud of everything I have accomplished.
Please support the Parkinson's Foundation in honor of my mom, Neil Diamond and the 90,000 people diagnosed with Parkinson's disease each year.
How a Movement Disorders Fellow is Building Her Career Around Parkinson’s Care and Research
Ekhlas Assaedi, MD, is passionate about movement disorders, specifically Parkinson’s disease (PD), and providing patient-centered care that leads to improved quality of life for people living with the disease.
After attending medical school at Taibah University, Saudi Arabia, Dr. Assaedi completed her neurology residency at the University of Alberta, Canada. She is currently in the first year of a two-year Institutional Movement Disorder (IMDS) Fellowship at the Cleveland Clinic, where she is working to further develop her skills in research methodology and treat patients using the latest approaches, like deep brain stimulation (DBS).
Dr. Assaedi is the first recipient of the Parkinson's Foundation Wesley G. McCain MDS Fellowship in Honor of Dr. Lucien Cote. We spoke to Dr. Assaedi about her exciting work in the PD field, and why she believes it is important to foster young doctors who have both clinical expertise and research exposure.
What led you to Parkinson’s research?
I knew I was interested in building a career in movement disorders in my second year of neurology residency. I’ll always be grateful to the movement disorders staff at the University of Alberta for inspiring that interest. We had such an active group of movement disorders specialists who took a great interest in residents’ education.
“There is so much work to do in this field, so much to learn and so many unanswered questions.”
Parkinson’s disease and idiopathic dystonia stuck out to me as the epitome of why movement disorders are interesting and important to study because of the heterogeneity of their genetic and presumed pathophysiological mechanisms, which translates to varied clinical presentations in different patients. There is so much work to do in this field, so much to learn and so many unanswered questions.
Can you tell us about your current work at the Cleveland Clinic?
I’m currently in the first year of my two-year clinical fellowship at the Cleveland Clinic, a Parkinson’s Foundation Center of Excellence. This first year is spent learning about the clinical aspects of care for Parkinson’s patients and other movement disorder patients. So, I’m learning all the basics of diagnosis, management and really applying what I learned in residency in day-to-day care. In my second year, I will tailor my experience to focus on my interests, which is a combination of deep brain stimulation work as well as clinical research.
What interests you about deep brain stimulation, and are you currently participating in DBS programming?
One of my first exposures to movement disorders was attending DBS programming clinics. I remember in one of my first encounters with a person with Parkinson’s who had DBS, I was impressed by the impact it had on managing his symptoms. That particular person was a violinist who missed playing but was unable to because of his tremors. After DBS, he was able to play again, which greatly improved his quality of life.
Currently, in my fellowship, I participate in pre-surgical DBS evaluation clinics, where I assess patients who are interested in this kind of treatment and evaluate their candidacy for DBS. I also meet with the multidisciplinary team involved in DBS surgery, which conducts regular DBS patient management meetings to make collaborative decisions about candidacy and care. I’ve also learned the basics of programming for various conditions, including essential tremors, Parkinsonism and dystonia. In my second year, I’m hoping to learn more about intraoperative neurophysiologic monitoring.
How do you see your work and research improving the lives of people with PD?
Right now, I am trying to learn as much as I can and I’m working to define a research need I’d like to focus on. My hope is that by the end of my fellowship, I will have mastered more of the art of patient-centric care, including mastering the different therapeutic options and working with patients to identify their goals, concerns and preferences to help them choose treatment options that best address their needs. Patient encounters are my greatest motivator. I want to focus on research that is meaningful and will lead to better outcomes for my patients.
Why is it important to support young clinicians/researchers?
Looking back at the start of my studies, I appreciate how important it is for movement disorder specialists to be involved in medical students’ and residents’ education. There’s a growing need for movement disorder specialists, especially with the aging population and the growing incidence of Parkinson’s disease.
We need all of the young neurologists we can find, both well-qualified general neurologists and more movement disorders specialists. I hope that one day I can inspire other young learners, like my professors inspired me to enter this field.
How has this fellowship impacted your career and your plans?
This fellowship is an incredible opportunity. I feel so fortunate for the excellent training I’m receiving at the Cleveland Clinic, and to learn from so many experienced clinicians and researchers, while utilizing all the technological resources available to me here. My fellowship has already allowed me to meet so many different patients, giving me a wider exposure to different presentations of Parkinson’s.
Organizations like the Parkinson’s Foundation are providing invaluable services to both people with Parkinson’s and medical providers. The landscape of Parkinson’s care and research would look completely different without the Foundation’s efforts. Their support of residents and fellows, like me, is an important service to the PD community and I’m so grateful.
