I was 42 years old and newly single. I had a high-pressure job I was excelling at, and my body was in top shape. But my left hip was so tight all the time, my tennis serve was off, and I was having a hard time keeping the rhythm in spin class.
I chalked it up to excessive exercise, or my new sports car with the heavy clutch. But then my toes started to move by themselves, which was curious. And a friend standing behind me mentioned that my left arm was not swinging when I walked. Soon I started to really have to think about picking up my left foot.
Even though my grandmother and aunt had Parkinson's disease (PD), and I was displaying the textbook early signs, I was flabbergasted at my own Parkinson’s diagnosis.
I found a great doctor whose treatment was heavy on exercise, and light on medication. I went to a Moving Day, A Walk for Parkinson’s, event, where I met people who were just living their lives, incorporating Parkinson's into their planning and decision making, but not being ruled by it.
I went to the World Parkinson's Conference and saw how many treatment options were available, or in development. I started medication, and continued to live my life, just with more pills and more exercise.
In the years that followed, I put a lot of work into my wellness to prove to myself that this wasn't a death sentence. I continued to excel in my career, make friends, I dated, I bought my dream house, I met the love of my life, we adopted a puppy and got married.
I'm retired now, to focus on my health, and spread the word that there is life after diagnosis. It's not easy, there are setbacks. I wish we as a community didn't have to do this. But with determination, pharmaceuticals and new technology, the future isn't as bleak as it may have seemed the day I was diagnosed.
Young-onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Learn more.
I was born in 1959 and at an early age, I became athletic participating in swimming and basketball activities. I swam as a teenager. I did bodybuilding in my 20s and I completed triathlons from my 30s through 50s. I have completed 18 full Ironman Triathlons.
In 2022, I noticed a tremor in my right hand. I went to a neurologist and was diagnosed with Parkinson’s disease (PD). Slowly over the next 12 months it began its process of degenerative abilities.
I needed hip surgery, which ended my running career. I couldn’t ride my bike because of instability issues (trouble with balance). I continue to lift weights and do stationary cardio activities.
I have been a strength and wellness coach for the last 40+ years. As my ability to train for sports began to decrease, I found it rewarding to put more effort into training my athletes and clients. It’s been a couple years now and I am truly enjoying putting my effort into training clients.
I am a wife, boy mom of two fantastic sons, a speech-language pathologist working in a large inpatient rehabilitation hospital, and a woman living with young-onset Parkinson's disease (YOPD).
I feel like I'm a bit of a unicorn at times, being a woman working in the medical setting with people who have neurological etiologies (some with PD) and having Parkinson's myself. Because of my professional career as a speech-language pathologist, I know what is coming my way with my own diagnosis of Parkinson's in terms of PD’s impact on speech, voice and swallowing.
I can't unknow what I know; however, I am not scared nor deterred to keep on living my best life!
I decided immediately upon receiving my diagnosis that I wanted to use my positivity, knowledge as a speech-language pathologist and personal experiences living with PD to help others. I immediately volunteered to enroll in a phase two clinical trial, which gave me a sense of some control over how I responded to my diagnosis and a sense of purpose.
Beyond sharing my diagnosis initially with my immediate family, a handful of friends and co-workers, I kept my diagnosis "secret" or hidden out of fear. I was too afraid to let people know, especially at my place of employment. I was afraid others would question my skills and abilities having a progressively degenerative neurological disease, especially diagnosed in my 40s.
However, as my symptoms progressed and became more visible, it was harder and more stressful for me to hide them. I would have to slow down, stop while walking due to painful dystonia, be cognizant that my arm was not swinging, and of course, recognize that the tremors in my fingers were progressing to my arm. I knew it was time to share my diagnosis publicly.
I went nearly seven years without disclosing my diagnosis publicly and had no idea there was a whole online community of others with YOPD, including WOMEN!
I work full-time and am a busy wife and mom… I had no time for social media and did not explore this way to connect with others until quite recently. After I publicly disclosed my diagnosis, I discovered this amazing online community of others living amazing lives with Parkinson’s, and felt like I'd found my people... I was not alone living with PD!
Sharing my diagnosis with others has lifted a tremendous weight from my mind and body, allowing me to find community and no longer try to hide my symptoms. I've been met with compassion and my goal is to extend that love and my experience and knowledge to others.
I recently began my journey as a Parkinson's Foundation Research Advocate and am an Ambassador, volunteering within my community. I can't wait to see what the future holds as I continue to serve as a Research Advocate, Ambassador and online advocate to inspire, educate and hopefully be a source of positivity for others living with Parkinson's and their families/caregivers.
Expert Briefing: Communication Strategies for Optimal Success with PD
September 17, 2019
Conversation is the primary mechanism by which humans create and maintain relationships. Yet, in the context of Parkinson’s disease (and typical aging) changes in speech, facial expressions, cognition, voice, and hearing can interfere with communicating messages and creating meaningful connections in conversations between individuals with Parkinson’s disease and their partners. These changes significantly impact the perceived burden (social, emotional, physical) and practical aspects of living with Parkinson’s disease. Dr. Roberts will focus on the multidimensional nature of conversation difficulties in the context of living with Parkinson’s disease and will discuss communication strategies for optimizing successful conversation interactions.
Presenter
Angela Roberts, PhD
Roxelyn and Richard Pepper Department of Communication Sciences and Disorders
Northwestern University (Parkinson’s Foundation Center of Excellence)
Videos & Webinars
Expert Briefing: Addressing the Challenge of Apathy in Parkinson's
September 11, 2024
Apathy can significantly impact the quality of life for people with Parkinson’s disease (PD). This invisible symptom can make it difficult to maintain interest in daily activities and to effectively manage PD symptoms. Apathy can be frustrating for people with Parkinson’s, care partners and loved ones, but understanding it as a symptom and finding ways to cope with it are key to ensuring a good quality of life.
Aaron C. Malina, PhD, ABPP
Clinical Neuropsychology
Northwestern Medicine-Lake Forest Hospital
A Parkinson's Foundation Center of Excellence
Podcasts
Episodio 31: Alucinaciones y delusiones en el Parkinson
Alrededor de un 20-40% de las personas con Parkinson experimentan algún tipo de alucinación o delusión en algún momento de su recorrido por la enfermedad de Parkinson (EP). Aunque en la actualidad los estudios no indican que la comunidad hispanohablante de la EP corra un mayor riesgo de desarrollar estos síntomas, sigue siendo importante conocer los posibles signos para estar mejor preparado para manejar situaciones de emergencia. Las alucinaciones y delusiones en sí pueden asustar, pero cuando se combinan con otros síntomas del Parkinson, pueden ser aún más problemáticas.
En este episodio, hablamos con la Dra. Blanca Valdovinos, neuróloga especialista en trastornos del movimiento del Centro Médico de University of Rochester. Ella comparte su experiencia de primera mano en trabajar con personas con Parkinson, basándose en el tiempo que pasó dirigiendo una clínica semanal para sus pacientes hispanohablantes con afecciones neurológicas. Explica qué son las alucinaciones y delusiones, destaca sus diferencias y proporciona ejemplos de cómo pueden presentarse en una persona con Parkinson. Ofrece orientación para reconocer las primeras señales y comparte cómo los familiares y aliados en el cuidado pueden responder mejor si su ser querido experimenta una alucinación o delusión.
Publicado: 10 de septiembre de 2024
La Dra. Blanca Valdovinos es neuróloga especializada en trastornos del movimiento. Creció en California y se trasladó a Nueva York para estudiar en Cornell University, donde se licenció en biología. Posteriormente, estudió medicina en la University of Rochester, donde también realizó la residencia en neurología y la especialización en trastornos del movimiento. Es directora de la Clínica de Neurología en Español de UR Medicine, donde atiende a pacientes con trastornos del movimiento y neurología en general. Se especializa en la enfermedad de Parkinson y es codirectora del Centro de Excelencia de la Parkinson's Foundation en University of Rochester. Creció en una comunidad hispana grande y le apasiona retribuir a su comunidad. Su trabajo se centra en lograr la equidad en temas de salud. Considera que todos los pacientes deben recibir atención médica de alta calidad, independientemente de su raza, etnia o idioma. Completó el “Programa de liderazgo en diversidad” de la American Academy of Neurology en 2021.
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Screening for Depression Can Improve Parkinson’s Care
A new study shows that a quick depression questionnaire can improve depression screening among people with Parkinson’s and lead more people to get help for these symptoms.
Parkinson's disease (PD) is typically associated with hallmark movement signs like tremors and stiffness. However, non-movement symptoms like depression often go underdiagnosed and undertreated.
Up to half of all people with Parkinson's experience depression at some point, which can significantly impact their quality of life. Importantly, a large percentage of people with PD never receive treatments or psychotherapy. Which is why improving the screening and treatment of depression in the PD population is an unmet need.
A new study showed that introducing a five-minute questionnaire — the 15-question Geriatric Depression Scale (GDS-15) — to movement disorder clinics can improve the rate of depression screening and follow-up care for people with Parkinson’s.
About the Study & Results
The study, Improving Parkinson's Disease Care through Systematic Screening for Depression, was published in July 2024 in the peer-reviewed scientific journal Movement Disorders. It included five movement disorder clinics in the U.S. and Canada. The clinics used the GDS-15 scale because research has shown it to be effective at detecting depression among people with Parkinson’s and can be self-administered in less than five minutes.
The study utilized data from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s with more than 13,000 participants in five countries. Before the study, clinics reported that only 12% of people with PD received a formal depression screening, whereas 64% were screened informally and 24% did not receive screening.
During the study, 1,406 people were seen for follow-up care at the movement disorder clinics, and 59% of those people received the GDS-15 screening, while 29% were screened informally — resulting in a five-fold increase in formal depression screening.
Among those who were screened for depression, 45% were positive for depression, showing depression is a common symptom for people with PD. About half of those people were already being treated for depression, but about 12% started new treatment.
When the study began, average GDS-15 scores were 8.8 — just 12 months later, average scores decreased to 7.0 (a GDS-15 score of 5 or above indicates depression). While the cause of the improved GDS-15 scores remains unclear, study authors raise the possibility that the formal depression screening process and follow-up discussions with a doctor may have a positive impact on depression symptoms.
Some centers experienced challenges in implementing the formal depression screening process. The most common reasons include patients having insufficient internet access to fill out the form at home or not enough time for the staff to help fill out the form in-office.
In follow-up interviews with clinicians, nearly all (94.4%) agreed the GDS-15 questionnaire was a useful tool for identifying depression. Moreover, 64.7% reported that the program led to changes in clinical management for at least 25% of patients, suggesting it improved patient care.
Highlights
Introducing a formal depression screening questionnaire — the 15-question Geriatric Depression Scale (GDS-15) — led to a five-fold increase in depression screening among five movement disorder clinics.
Among those who were screened with GDS-15, 45% screened positive for depression. While half of those people were already being treated for depression, 12% started new treatment.
A GDS-15 score of 5 or above indicates depression. When the study began, average GDS-15 scores were 8.8. Twelve months later, average scores decreased to 7.0.
What does this mean?
Formal screening for depression is one way to improve health care for those with Parkinson’s. The GDS-15 is one way to detect depression among those with Parkinson’s, however, it is not the only way to screen for depression.
What do these findings mean to the people with PD right now?
People with Parkinson’s are at higher risk for depression. However, not every PD doctor or clinic offers depression screenings or asks about mental health. If you experience any signs of depression or sadness, it is important to talk to your doctor.
Just as the symptoms and causes of depression can differ from person to person, so too can suitable treatment approaches. Exercise is a vital component of alleviating depression in PD. Primary treatments also include antidepressant medications and psychological counseling (psychotherapy).
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and mental health 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.
Deep Dive Conversations About 5 Common Non-Movement Parkinson’s Symptoms
When it comes to Parkinson’s disease (PD), non-movement symptoms are often overlooked because they are not as visible as those of their movement counterparts. However, these symptoms can be just as challenging to everyday life. Learning the common signs can help you recognize and manage symptoms.
Explore our podcast episodes where we dive into non-movement symptoms. Each episode highlighted below strives to deepen your understanding of these symptoms, as well as offer strategies for managing them.
Apathy, a lack of interest or motivation, can be an issue for people with Parkinson’s and may interfere with daily activities, social interactions and overall well-being. Movement Disorders Neurologist, Nabila Dahodwala, MD, MS, Director at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, explains the impact of apathy on daily life and shares strategies to help address it and find the motivation to exercise.
Depression is often overlooked and undertreated, despite it being a common symptom of Parkinson’s. Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary, a Parkinson’s Foundation Center of Excellence, discusses the importance of recognizing and treating depression.
Low blood pressure, also known as hypotension, can be dangerous if not treated. It may cause dizziness, fainting and falls, which can lead to fractures. Jeni Bednarek, RN, BSN, ACRP-CP, the team coordinator at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence, talks about how people with Parkinson’s can manage low blood pressure.
Nausea, or the feeling of discomfort in the stomach, can sometimes be caused by Parkinson’s, or as a side effect of medications. Andrew Feigin, MD, Professor of Neurology and Director of the Fresco Institute for Parkinson’s and Movement Disorders at New York University Langone Medical Center, a Parkinson’s Foundation Center of Excellence, discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.
Difficulty sleeping can impact your overall health and well-being. Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, discusses the causes of sleep problems, including insomnia, REM sleep behavior disorder and daytime sleepiness.
Subscribe to our podcast. Search for “Substantial Matters: Life and Science of Parkinson’s” on your favorite podcast platform.
Expert Tips on How to Get Good Sleep with Parkinson's
Sleep recharges our brains and bodies, while boosting mental wellness. People living with Parkinson’s disease (PD) need even more time to reset and restore. Discover how Parkinson’s symptoms, medications or other health problems can impact your sleep, and what you can do to maximize slumber.
This article is based on Trouble with Zzz's: Sleep Challenges with Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented Aleksandar Videnovic, MD, MSc, associate professor of neurology at Harvard Medical School and director for the Massachusetts General Hospital Division of Sleep Medicine and Program on Sleep, Circadian Biology and Neurodegeneration.
Aging, PD and Trouble with Sleep
As people age, it may be harder to fall asleep and waking up at night can be more frequent. Parkinson’s can further disrupt restorative sleep. As many as 80-90% of people with Parkinson’s can experience a sleep problem during the course of the disease.
Parkinson’s-related brain changes upset the circadian system, sometimes called the body’s internal clock. PD also impacts sleep drive — the growing sensation as day turns to night of the need to sleep. Other elements of PD that can disrupt slumber include:
Parkinson's symptoms, such as tremor or PD-related pain, may emerge overnight as medications wear off. Other symptoms include akinesia (difficulty moving or inability to move), rigidity, dyskinesia (erratic, involuntary movement) and more.
Medications used to treat PD can interfere with sleep. Others can make it harder to stay alert during the day.
Depression and anxiety are extremely common PD symptoms. These and other symptoms, such as hallucinations, can keep a person awake at night.
Changes to the autonomic system, the body’s network for regulating jobs like breathing and blood pressure, impact sleep. Nocturia — excessive nighttime urination — can be common in PD.
Sleep disorders can be exhausting for a person with Parkinson’s, as well as their bed partner. These can include:
Obstructive sleep apnea and other sleep-disordered breathing can obstruct the airway repeatedly during sleep, resulting in coughing, choking and frequent waking. People with sleep-disordered breathing experience microarousals, waking up to 60 times hourly, without recognizing it. Sleep apnea affects up to 10% of the population, impacting people without Parkinson’s and those with PD with the same frequency.
Excessive daytime sleepiness (EDS) may make it difficult to stay awake during daylight hours or cause sudden daytime sleep. PD brain changes and symptoms, medication regimens, co-existent sleep disorders and age-related physical changes can all cause EDS. Up to 16% or more of people with PD may experience poor daytime alertness. Some may be unaware of how EDS affects them. A trusted companion can offer honest input. Sometimes, sleep attacks can come on without any warning, significantly impacting a person’s ability to drive safely.
Restless legs syndrome (RLS), an uncomfortable feeling in the legs or feet and irresistible need to move, can impact some people even prior to a PD diagnosis. However, not everyone with Parkinson’s experiences RLS, nor will most people who experience RLS go on to develop PD.
Rapid eye movement (REM) sleep behavior disorder (RBD): People dream and experience muscle relaxation during REM stage of sleep. RBD can affect up to half of people with Parkinson’s, impacting muscle relaxation and causing people to act out their dreams — talking, yelling or moving about.
Like restless legs syndrome, RBD can begin long before a Parkinson’s diagnosis. Although not everyone who lives with RBD will develop Parkinson’s, their risk of developing PD or Dementia with Lewy Bodies — diagnosed when cognitive decline happens before or alongside motor symptoms — is significantly higher. This is meaningful for Parkinson’s research.
As potential therapies evolve to slow PD progression, there may be a window of opportunity for preventative intervention in people who experience REM sleep behavior disorder but have yet to develop a neurodegenerative disease.
Management Strategies for Fragmented Sleep
Talk to your healthcare provider about sleep issues, fatigue or daytime sleepiness. Your doctor may ask questions about your sleep history. A careful review of each or your medications will help your doctor determine whether a simple adjustment or addition might improve slumber:
Long-acting levodopa or additional levodopa is sometimes prescribed for bedtime use.
Catechol-O-methyl transferase (COMT) is an enzyme in the body. It can impact the effectiveness of levodopa. COMT inhibitors prolong the benefits of levodopa. These are primarily used for wearing off (changes in the ability to move between doses of levodopa) but are sometimes also prescribed with levodopa for use at night.
People taking diuretics might be directed to use them earlier in the day. Likewise, limiting the use of PD medications selegiline and amantadine later in the day might improve insomnia.
Anticholinergic medications are sometimes used for nocturia, however, cognitive slowing can be a side effect. These can also cause confusion and hallucinations and are not recommended in older people.
Caffeine and some stimulant medications can promote alertness during the day.
Mental wellness: Talk to your doctor about symptoms of depression or other emotional challenges. Parkinson’s impacts areas of the brain that regulate mood, sleep, energy and more. Caring for mental health also benefits sleep.
Sleep disorders: If your doctor suspects a sleep disorder such as obstructed breathing, restless legs or RBD, you might be referred for a sleep study in a sleep clinic.
Sleep apnea treatment may require a dental appliance or a continuous positive airway pressure (CPAP) machine that is worn when sleeping or napping.
Dopamine agonists — medications that rouse areas of the brain motivated by dopamine — benzodiazepines, opioids and a class of medications known as calcium channel alpha-2 delta ligands, such a gabapentin, are sometimes used for restless legs syndrome. Dopamine-blocking, anticholinergic and antihistamine medications should be avoided for RLS.
Your doctor may recommend melatonin or the medication clonazepam for RBD. While antidepressants may help with some aspects of insomnia, some can unmask or worsen RBD.
Tips to Improve Shut-eye
A healthy sleep routine — sometimes called sleep hygiene — is another key component to a good night’s rest. Try these small changes that can make a big difference:
Exercise regularly (aim for early in the day) to improve sleep quality and overall function.
Limit naps: a short snooze earlier in the day, of 30 minutes or less, is less likely to interfere with nighttime sleep.
Avoid stimulants, such as caffeine, later in the day.
Minimize your screen time before bed. Avoid screens entirely — including TV and mobile devices — in the bedroom.
Go to sleep and rise at the same time, weekdays and weekends.
Turn the lights out: light regulates the body’s clock, signaling that it is time to wake.
Employ motion-detecting nightlights to safely guide you to the bathroom.
Sleep in a wider bed that is lower to ground. This can minimize injuries and lessen the impact in case of an accidental fall.
Consider a bedside rail to prevent falls; a bedside commode can also be helpful for people who have difficulty getting to the toilet at night.
Use satin or silk sheets or pajamas to make it easier to turn in bed.
Adequate hydration can improve PD symptoms, boosting low blood pressure and easing constipation. However, drinking liquids too close to bedtime can cause frequent nighttime urination. Minimize beverages a few hours before bed.
Research
Light hitting the eyes is one of the biggest environmental factors regulating the circadian system. The timing of meals, exercise, naps and rest also influences our body clock. In turn, this timer regulates our mood, behavior, immune response and more. Researchers are exploring ways to improving circadian system function in PD.
Light therapy shows great promise as a noninvasive, widely available, nonpharmacological treatment to ease non-movement symptoms of Parkinson’s, including fatigue, sleep issues and mood changes.
In a 2017 JAMA Neurology journal study, Videnovic et al. found that exposure to bright light (10,000 lux) or dim-red light (less than 300 lux) — twice daily in one-hour sessions over two weeks — improved daytime alertness and sleep quality.
Those findings were carried over into the recently completed ENLITE PD trial conducted at 25 sites across North America. The study analyzes the effect of daily light therapy on PD symptoms, including sleep. At the time of this Expert Briefing, the study’s authors were preparing to submit their findings for publication, with the aim of conducting a phase III clinical trial.
Learn More
To learn more about Parkinson’s and sleep explore these resources:
Videnovic, A., Klerman, E. B., Wang, W., Marconi, A., Kuhta, T., & Zee, P. C. (2017). Timed light therapy for sleep and daytime sleepiness associated with parkinson disease. JAMA Neurology, 74(4), 411. https://doi.org/10.1001/jamaneurol.2016.5192
Controlando los síntomas de la enfermedad de Parkinson
Hay mucho que saber acerca de la enfermedad de Parkinson. Aprenda cómo se trata y, lo más importante, cómo llevar una vida mejor con Parkinson.
El Parkinson es una enfermedad individualizada. Si bien la experiencia de cada persona con el Parkinson es única, cuanto más sepa, más empoderado estará para desempeñar un papel activo en su autocuidado y manejar su vida con Parkinson.