Study Finds Visual Impairment is 60 Percent More Common in People with Parkinson’s
Parkinson's disease (PD) is usually described as a movementdisorder of the nervous system that worsens over time. Parkinson’s is believed to be the result of dopamine-producing neurons (nerve cells) in the braingradually dying off. When approximately 80 percent of dopamine is lost, the hallmark symptoms of PD emerge, such as tremors in the hands, arms, legs, jaw or head, slowness of movement, stiffness in the limbs and trunk of the body, and difficulty with walking, balance and coordination.
However, PD also has non-motor symptoms, such as problems with attention, planning, language and memory. One impairment in particular may not be getting the attention it deserves: visual impairment.
In people without Parkinson’s, visual impairments are associated with falling, bone fractures, depression, anxiety and dementia. People with PD are not only at an increased risk for these issues but can experience intensified visual impairments ― because they rely on visual cues to help compensate for movement challenges. Understanding how visual impairments impact the health and quality of life of people with PD is paramount.
Recently published in the journal, Movement Disorders, “Visual Impairment Is More Common in Parkinson’s Disease and Is a Risk Factor for Poor Health Outcomes” (Hamedani, Abraham, Maguire, & Willis, 2020), a study found that visual impairment is 60 percent more common in PD than the general population.
This study used Medicare claims data from 2010 to 2014 to analyze the burden of moderate to severe visual impairment of 26,209,997 Medicare beneficiaries, age 65 and older, with and without PD. Data was analyzed (using a statistical model) to examine visual impairment and incident hip fracture, depression, anxiety, dementia and death. The frequency with which those with PD had a professional eye exam was measured and demographic data was gathered.
Results
Of the 26,209,997 unique Medicare beneficiaries, 287,010 (1.1%) carried a diagnosis of PD, and 187,572 (0.72%) carried a diagnosis of moderate to severe visual impairment.
Visual impairment is 60% more common in PD than the general population.
Moderate to severe visual impairment was associated with increased hip fracture, depression, anxiety, dementia and death, in both the general population and those with PD.
Approximately only 40% of those with PD had a yearly eye exam.
In both PD and non-PD populations, the prevalence of moderate to severe visual impairment increased with:
Age
Black or Hispanic ethnicity
Medicaid eligibility
Female sex
Diabetes
Hypertension
What Does It Mean?
The prevalence of moderate to severe visual impairment in the Parkinson’s population is more common than those who do not have PD. This visual impairment is associated with increased risk of accidents, cognitive issues, and death in both people with and without PD. Those who fall into certain demographics or have conditions, such as diabetes and hypertension, are more likely to have moderate to severe visual impairment. It is important to know that many comorbid conditions (e.g., diabetes, anxiety, depression and hypertension) can be managed and treated; plus, Medicare pays for annual eye exams.
It is imperative that attention be given to these study findings, and more research conducted. Understanding these relationships is an essential component to helping develop interventions and patient education efforts to improve health outcomes and quality of life for people with PD.
As an aside, while not addressed in this study, dopamine is known to play a key role in retina health and numerous other visual functions, such as light regulation, contrast sensitivity, color vision and visuospatial construction. Further, there is research to suggest that alpha-synuclein overexpression affects dopamine neurons in the retina. Expanding research to incorporate the role of dopamine and alpha-synuclein is surely warranted.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the association of vision problems and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.
Borm, C., Visser, F., Werkmann, M., de Graaf, D., Putz, D., Seppi, K., . . . de Vries, N. M. (2020). Seeing ophthalmologic problems in Parkinson disease: Results of a visual impairment questionnaire. Neurology, 94(14), e1539-e1547. doi:10.1212/WNL.0000000000009214
Hamedani, A. G., Abraham, D. S., Maguire, M. G., & Willis, A. W. (2020). Visual Impairment Is More Common in Parkinson's Disease and Is a Risk Factor for Poor Health Outcomes. Mov Disord. doi:10.1002/mds.28182
Hong, T., Mitchell, P., Burlutsky, G., Samarawickrama, C., & Wang, J. J. (2014). Visual impairment and the incidence of falls and fractures among older people: longitudinal findings from the Blue Mountains Eye Study. Invest Ophthalmol Vis Sci, 55(11), 7589-7593. doi:10.1167/iovs.14-14262
Ivanova, E., Yee, C. W., & Sagdullaev, B. T. (2016). Disruption in dopaminergic innervation during photoreceptor degeneration. J Comp Neurol, 524(6), 1208-1221. doi:10.1002/cne.23899
Marrocco, E., Indrieri, A., Esposito, F., Tarallo, V., Carboncino, A., Alvino, F. G., . . . De Leonibus, E. (2020). alpha-synuclein overexpression in the retina leads to vision impairment and degeneration of dopaminergic amacrine cells. Sci Rep, 10(1), 9619. doi:10.1038/s41598-020-66497-6
Unfortunately, Parkinson’s disease (PD) has been a part of my life story for quite some time. In 1985, I gave up on my dream to go to Nashville to work with The Nashville Network so I could move back to New Jersey to care for my parents. They had both been diagnosed with Parkinson’s. For the next 10 years, I was their primary caregiver.
My parents were vibrant, active people before Parkinson’s. My father, John, was a successful production manager of the control panels on the Gemini, Mercury and Apollo space missions, which is why I was deeply saddened the day I walked into the kitchen — many years after he retired — and he introduced me to his co-worker, but all I saw was an empty chair. My mother, Peggy, was a great basketball player and a runway model in her youth. She worked hard as a secretary and loved to go to Long Beach Island, NJ. She also eventually suffered from delusions. It still saddens me that she was never really able to enjoy the limited time she had with her granddaughter, my first-born, due to the fact that she couldn’t recognize her.
Despite being prepared to help my parents cope with motor symptoms typical of Parkinson’s, I was surprised when they both began to experience non-motor symptoms including hallucinations (seeing things that aren’t there) and delusions (false beliefs). At the time, I didn’t know that PD associated psychosis affects more than half of people with Parkinson’s over the course of their disease.
In 2014, Parkinson’s reared its ugly head again, when my sister was diagnosed. Where once she was full of life and quick-witted, today her personality is overshadowed by seeing things that aren’t really there. Frequently, she will see a snake on her hand, men in the trees outside, dogs at the door or even barbershop quartets in the wall.
Caring for people who see or believe things that are not real can be emotionally draining. My best coping mechanism is to sing. In 2015, I wrote and performed a song at an event hosted by Light of Day, a non-profit dedicated to Parkinson’s. Performing was cathartic.
Soon after, I was told about a clinical trial for a medication, Pimavanserin (brand name: Nuplazid), that specifically treats hallucinations and delusions associated with PD psychosis. Although my sister did not have access to this medication in its trail phase, I jumped on the chance to share my story as a caregiver with the expert panel that deliberated the recommendation of the drug’s approval to the US Food and Drug Administration (FDA).
After 30 years of feeling helpless while dealing with PD associated psychosis, I felt empowered to be a force for change. I was overjoyed that my story was heard!
Thankfully, the first treatment for PD associated psychosis was recently approved by the FDA. We’re still uncertain how the medicine will help my sister’s current PD symptoms, but at least there is hope.
I share my story to raise awareness about the prevalence of PD psychosis and the impact it has on people with Parkinson’s, caregivers and their families. My advice to others is to learn more about non-motor symptoms and to talk to your loved one’s doctor. Reach out for support and know that you’re not alone.
New Study: Can People with Parkinson’s Experience Apathy and an Impulse Control Disorder at the Same Time?
Historically described as being on opposite ends of the spectrum, apathy affects about 40% of people with Parkinson’s disease (PD), while impulse control disorders (ICDs) affect between 14% and 40% of people with PD. How are they different?
Apathy ― which comes from the French, apathie, meaning “passionless existence” ― is the feeling of being emotionally flat, lacking enthusiasm or interest in doing anything. Apathy can express itself in different ways, often leading people who experience it to stop exercising, keeping up with friends and family or even stop taking medications. Of note, apathy is often confused with depression, but they are not the same: with depression, there’s a profound sense of feelings of guilt and worthlessness.
Impulse Control Disorders (ICDs) are the inability to stop doing something that is harmful, or could become harmful, to yourself or others to the point that they impair one’s ability to function at work, home and navigate day-to-day life. Performing the activity can lead to a feeling of elation. Examples include online gambling, compulsive shopping and hypersexuality.
Since apathy and ICDs elicit opposite feelings, is it possible for a person with PD to experience both at the same time? It seems counterintuitive, but may not be. A study recently published in the journal, Neurology, “Co-occurrence of apathy and impulse control disorders in Parkinson’s disease”(Scott et al., 2020) sought to explore whether a lack of motivation or interest can co-exist with an irresistible urge to perform activities.
Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, and the team of study co-authors utilized a convenience sample of 887 people with PD from the University of Florida Norman Fixel Institute for Neurological Diseases, a Center of Excellence, and characterized them by disease combination; they used a variety of tests to measure apathy, depression, anxiety, cognition and ICD.
Demographic data were taken, including PD onset, disease severity, as well as medication use. Medication was of particular interest because in addition to relaying messages that plan and control body movement, dopamine also plays a primary role in the reward pathway in one’s brains (the “feel-good” chemical).
Study participants included those with Parkinson’s experiencing:
An impulse control disorder (ICD): those with clinically significant ICD symptoms only
Apathy: those with clinically significant apathy symptoms only
Both: those with both clinically significant apathy and ICD symptoms
Neither: those with neither clinically significant apathy nor ICD symptoms
Results
61.6% of study participants had both ICD symptoms and apathy
41.3% of study participants with apathy also had ICD symptoms
The ICD-only group had higher daily dopamine agonist medication use than patients in the apathy group
There was no significant difference in dopamine agonist use between the Neither group and the apathy group
Anxiety and depression each positively correlated with both apathy and ICD symptoms, separately
What Does It Mean
A person with PD can indeed experience both apathy and ICDs ― suggesting they are not on opposite sides of the spectrum. In fact, a significant majority (62%) of those with PD in this study with ICDs had clinically significant apathy; while 41% of people with PD experiencing apathy also had ICD symptoms. Further, having both apathy and one or more ICDs resulted in having the highest levels of anxiety and depression.
“The findings from this study challenge the longstanding dogma that apathy cannot co-exist with impulse control behaviors. Although it seems counterintuitive, clinicians should appreciate this possibility.”
- Dr. Okun
This study suggests that it is imperative that clinicians, researchers, healthcare providers and care partners consider that these two PD symptoms are not mutually exclusive ― you can experience both at the same time. Knowing that someone with PD could have apathy and ICDs simultaneously, could profoundly impact clinical study designs, how novel medications are designed and tested, the approach (and mindset) of caregivers, and perhaps how those with PD think about themselves.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about apathy and impulse control by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.
Scott, B. M., Eisinger, R. S., Burns, M. R., Lopes, J., Okun, M. S., Gunduz, A., & Bowers, D. (2020). Co-occurrence of apathy and impulse control disorders in Parkinson's disease. Neurology. doi:10.1212/WNL.0000000000010965
“There is a large population of women out there, as well as people with Young-Onset Parkinson’s disease (YOPD), who are still of working age, that need our help,” said Susan Brister, Parkinson’s advocate from Lilburn, GA. “The Parkinson’s Foundation has found a niche in reaching these communities to offer the resources they need.”
Susan lives with YOPD and hopes that her appearance in “Better Lives. Together .” the Parkinson’s Foundation public service announcement (PSA) will spread awareness about Parkinson’s disease (PD), especially among underrepresented groups.
In the 16 years since Susan was diagnosed, she has learned to adapt to the challenges of Parkinson’s with grace and a healthy dose of humor.
“Parkinson’s taught me to take life a little less seriously, and that living with a disease with no cure doesn't have to be as bad as it sounds,” said Susan. “Parkinson's will change your trajectory in life but doesn't have to define who you are.”
When Susan was 34, working in a stressful corporate job with a newborn and a two-year-old at home, she noticed that something was not right with her fine motor skills.
“I remember ordering wide grip pens from my office’s supply company because my writing has gotten so bad and so small,” said Susan. “I had my second child in 2004, and when it came time to write thank you cards for baby shower gifts, I couldn't do it. My writing had become illegible. I had to hire a couple of high school girls to write the cards for me.”
Shortly after that, Susan noted that she was struggling to perform simple tasks like scrambling eggs or brushing her teeth. She decided it was time to seek out a neurologist.
“It was my seventh wedding anniversary in 2005 when the doctor told me ‘I think you've got Parkinson's disease,’” said Susan. “My mind immediately went to a vison of an elderly person shaking with tremors and I didn't want to think about it, but the doctor said, ‘I encourage you to get another opinion.’”
Shortly thereafter, Susan’s diagnosis was confirmed by a second doctor, and she began to consider what lifestyle changes she would need to make.
“My manager gave me a role that was more flexible and less demanding in terms of life-work balance, but at the same time, less responsibility also meant less pay and I was used to having the opposite. I was always proud of being a strong female leader in my industry, so it was quite difficult to accept.”
By 2009, managing work with PD and two young daughters had become untenable. “The stress exacerbated all my symptoms,” said Susan. Turning in her business cards was especially hard: “I felt like I lost my identity,” said Susan.
Instead of being discouraged, Susan, now a full time stay at home mom, had new business cards printed. “The cards had the job title ‘Best Mom in the World,’” said Susan. “It was my tagline because it’s what my daughters always call me.”
Today, Susan’s independent daughters are quick to help with her Parkinson’s-related challenges. “My youngest one has nice penmanship, so she helps with writing letters or paperwork at the doctor’s office. My older daughter has an intuitive sense of when I'm getting frustrated with my ability to explain something to someone like a doctor or mechanic. She’ll just say ‘Mom, hold on, I'll do this for you,’ and she'll step up and explain what I’ve been struggling to articulate. She takes the ball and runs with it. I'm really proud of both of my daughters for that support.”
Susan stays active to keep her PD symptoms in check through yoga alongside a trainer and taking evening walks with her husband. “It's our bonding time,” she said. Susan also enjoys spending time with her family watching her younger daughter play softball and her older daughter play volleyball.
Susan also does her part to support young women with PD, offering a listening ear to those considering deep brain stimulation (DBS) surgery. “My social worker contact will call me and say, ‘hey Susan someone is contemplating getting surgery, are you willing to talk to them?’ My first response is always ‘yes, don't even ask, just give my number,” she said. “I didn't have a real person to talk to when I was preparing for surgery in 2017, and if I did, it would have been an elderly man, which wouldn’t have been helpful for me.”
Susan’s advice to people who are newly diagnosed with PD is straightforward. “It gets easier to talk about it and deal with the longer you have. In the beginning it is very emotional because you think the worst, but get medicated, get a good doctor and take your medications on time and you will improve your quality of life.”
For Don Miller and Marie Head of Big Canoe, GA, their devoted marriage, and their tremendous admiration for each other’s resilience, helps them manage the challenges of Parkinson’s disease (PD).
“Don is a fighter,” said Marie. “From the moment he was diagnosed, I have told him that he is my hero. He has never stopped fighting.”
“It's a wonderful union,” said Don. “I'm so lucky to have found a caring partner like Marie in mid-life. Tackling PD without her would have been so much harder. She's an excellent care partner and very loving person.”
Don and Marie have been passionate members of the Parkinson’s Foundation community since 2013. They are consistently ranked among the top fundraisers at Moving Day Atlanta each year, and Marie serves on the People with Parkinson’s Council. The couple was delighted to be included in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) to help raise awareness.
“I hope this PSA will let people know they are not alone — resources are available to both people with PD and people who are caring for them. They are a part of a larger community that wants to help,” said Don.
Part of the PSA was filmed at Don’s New Beginnings Boxing class, which has been another valuable source of support for the couple. “We live in a rural community without many resources, so we greatly appreciate this PD boxing program, which was started with a Parkinson’s Foundation community grant,” said Don.
Don and Marie were still newlyweds when Don began to suspect that he had PD. He first noticed that his once impeccable handwriting had become smaller and harder to read. Handwriting changes can be one of the early signs of PD.
Initially, Don chalked it up to being retired and not writing as often. In the months that followed, however, coordinating activity between his brain and his hands become even more challenging.
On a vacation in Florida in 2011, Marie noticed that Don struggled with the lock for their bicycles — he couldn’t line up the top of the lock with the bottom.
“In the car that day, he told me, ‘I want you to look something up: Parkinson’s disease,’” said Marie. “He was already doing the research. I panicked and said, ‘wait a minute, why are we going to Florida? We need to get back to Atlanta and see a doctor.’”
Back at home, a neurologist confirmed the couple’s fears: Don indeed had Parkinson’s.
The news was especially difficult because Don and Marie already had extensive experience with degenerative illnesses. Each had been previously widowed after caring long-term for spouses who succumbed to health battles.
“The diagnosing doctor was a neurologist, but not a movement disorder specialist,” said Marie. “We were handed a prescription and told, ‘here are some drugs — come back and see me in about four months and we'll review your symptoms again.’”
Despite their discouragement in that moment, the couple approached PD with determination. They dove into action, seeking resources to help Don live a longer, healthier life. The first stop was the Parkinson’s Foundation.
“The Parkinson’s Foundation has so much helpful information,” said Don. “It offers so many resources for support and opens doors to the latest information and research. The Foundation has let me know I'm not alone in my fight.”
In successfully adjusting to their new reality, the couple finds that communication is key. “When I was first diagnosed, sometimes communications could be complicated,” said Don. “I like to do things for myself when I can, and Marie is often quick to jump in to help.”
One evening, as the couple dressed for an event, Marie saw Don struggling with the buttons on his shirt. “I just reached up and fastened the buttons,” said Marie. “I remember that he took my hands gently and he said, ‘you know what, why don't you let me ask you when I need help.’ We made an agreement right then and there that we both would ask for help when it was needed instead of assuming.”
Don and Marie embrace outings with friends and exercise as ways to help manage the movement and non-movement symptoms of PD while nurturing their relationship. Together, they travel the world. They enjoy hiking, fishing, biking and dancing. “Don bought me ballroom dance lessons when we were first married. We love to dance,” said Marie. “Parkinson's has interrupted that just a little bit because of balance but we often find ourselves slow dancing in the kitchen.”
Don’s advice to everyone in the PD community is to fight. “With PD, there will be good days and bad days. Be active in body, mind, and spirit. Communicate honestly with your family, friends and care partners. Fight hardest when you feel your worst.”
Weeding Through the Haze: People with Parkinson’s Share Medical Cannabis Experiences
Medical cannabis (or marijuana) is a complementary and alternative therapy of high interest for the Parkinson’s disease (PD) community. The Parkinson’s Foundation believes that this topic should be better understood, and has committed to doing so with a medical marijuana convening and its published guidelines, new articles, interviewing experts on our podcast and most recently, conducting a survey to better understand cannabis use among the PD community.
In the U.S., cannabis has become more widely available for medical and recreational use. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, the Parkinson’s Foundation distributed a survey, Weeding Through the Haze: A Survey on Cannabis Use Among People Living with Parkinson’s, Disease in the U.S., to 7,607 people with PD in January 2020 and analyzed the 1,064 complete responses we received.
“It is important to understand how people with Parkinson’s disease are using cannabis, and whether they are basing their use on evidence-based recommendations or trial and error. This survey will help shed light on the community viewpoints and experiences surrounding cannabis use for Parkinson’s disease symptoms,” said Megan Feeney, MPH, Parkinson’s Foundation Associate Director of Community Engagement and survey lead.
Medical Cannabis and Parkinson’s
Managing Parkinson’s is complex. As the neurodegenerative disease progresses, so do its symptoms for most. Many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. Many people with Parkinson’s have looked to medical cannabis to provide some relief. However, more research is needed to prove if and how PD symptoms are relieved when using cannabis, and if so, what type of cannabis and what dosage are most effective and safe for the consumer.
Nevertheless, there is an increasing interest in the use of medical cannabis. Currently, 47 of 50 states in the U.S. permit the sale or consumption of hemp-sourced cannabidiol (CBD) products with less than 0.3% tetrahydrocannabinol (THC), while 35 of 50 states have approved marijuana for medicinal purposes and 15 of 50 states permit recreational use of marijuana. Today, broad numbers of people with PD have access to cannabis.
Survey Results
The 1,064 survey respondents came from 49 states. The average age for respondents was 71, and the average time they have lived with Parkinson’s is seven years. The survey asked specific questions about cannabis use ― from symptom management to motivation for use and side effects ― and questions for those who do not use cannabis and why.
Experiences with Cannabis and Managing PD
Of the respondents who consumed cannabis:
25% used cannabis within the previous six months.
57% learned about cannabis use from the internet, friends or other people with PD.
64% had not received a cannabis recommendation from a licensed doctor or provider.
56% were not provided any information on how to use cannabis (such as dosage, type and frequency of use).
Most consumers reported their most common time of cannabis use is either in the evening or at bedtime.
Interestingly, 23% of consumers stated they stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement. Of note, 76% of respondents did not use cannabis, primarily because there was a lack of scientific evidence supporting any benefits.
Experiences with Cannabis and Managing PD Symptoms
Among respondents, cannabis was used to treat motor and non-motor symptoms. When asked about associated symptom relief, most consumers reported that cannabis use led to a moderate or considerable improvement in the severity of anxiety, pain, sleep disorders, stiffness and tremor. Overall use and the level to which cannabis was reported to address motor and non-motor symptoms varied widely.
Negative Side Effects
Less than 13% of consumers reported negative side effects from cannabis use. We also asked non-consumers of cannabis if they had experienced any previous negative cannabis experience. Of these, about half reported negative side effects.
Combined, both groups listed their negative side effects as an increase in anxiety (30%), impaired coordination (20%), dizziness (20%) and “other reasons” (38%), which included sleepiness, confusion, worsening orthostatic hypotension.
PD Medication and Cannabis Consumption
Cannabis consumers rated non-motor prescription medications as less efficacious than non-consumers. Among all consumers, 85% reported that cannabis use had no impact on their prescription medication usage, and 89% said cannabis was not a replacement for their PD prescription medications.
Clinical Trials
Among all who responded, 82% were interested in learning more information about a clinical trial exploring the impact of cannabis on PD symptoms, and 62% were interested in enrolling in a clinical trial.
Key Takeaways
While better understanding cannabis experiences of people with PD, looking at the bigger picture, survey results show that:
A knowledge gap among people living with PD, which may be impacting their decisions about cannabis use, as a large portion of consumers reported not knowing the type, brand or dosage of cannabis they primarily use.
Among some consumers, reported cannabis use may have been beneficial for motor and non-motor PD symptoms including anxiety, pain, sleep disorders, stiffness and tremor. This is consistent with other research studies.
One in five survey respondents are current cannabis consumers.
Cannabis use did not have an impact on PD prescription medications.
Cannabis consumers see the limited effectiveness of cannabis for symptom management. Most consumers recognize that cannabis is not a substitute for their PD medications.
Learn More
Learn more about Parkinson’s and medical cannabis in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
To commemorate our 100 episodes of educating the Parkinson’s community “on air,” we want to share some of our favorite episodes with you below. We also want to hear from you ― what topics are you interested in learning more about? Tell us by taking this survey.
In our debut episode, Michael Okun, MD, talks about early signs of Parkinson's disease (PD) and offers practical advice on how to proceed after a diagnosis. If you or a loved one recently received a Parkinson’s diagnosis, be sure to order your Newly Diagnosed Kit at Parkinson.org/NewlyDiagnosed.
Heather Cianci, PT, GCS says an early consultation can take advantage of a particularly valuable window of opportunity to address movement issues and improving movement and physical impairments can improve one’s mental state as well. Download our Falls Prevention or Freezing and PD fact sheets for additional tips on managing motor symptoms.
Licensed Clinical Social Worker, Jessica Shurer, discusses the emotional changes that may occur throughout the course of Parkinson's disease along with suggestions for how people who are unable to travel to large medical centers may find help to address their emotional needs. Download our fact sheets on Anxiety in Parkinson’s, Apathy in Parkinson’s and Combatting Depression to learn more about non-movement PD symptoms.
Parkinson’s can be unpredictable ― symptoms can come and go or get better and worse throughout the day. Irene Malaty, MD, explains more about what causes these changes and how you can work with your doctor to manage them. Read, order or purchase the Kindle eBook of Managing Mid-Stride: A Treatment Guide to Parkinson’s.
Regular exercise is essential for people with Parkinson's. Bas Bloem, MD, PhD, describes what is known about exercise and PD and what is still in the research stages. He also offers tips on overcoming barriers to getting enough exercise. Read, order or purchase the Kindle version of our book Fitness Counts and fact sheet, Exercise and Parkinson’s.
Danny Bega, MD sheds light on some of the issues and concerns surrounding the use of medicinal cannabis for people with Parkinson's. Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana.
Nutrition is increasingly part of the conversation when it comes to good Parkinson's care. Dr. Bloem describes how diet can help improve some of the symptoms of Parkinson's and optimize the effects of medication, and he offers tips on getting adequate nutrition. Download our fact sheet Nutrition and PD to learn more about how nutrition can impact PD.
When you participate in our ground-breaking study, PD GENEration: Mapping the Future of Parkinson’s disease, you can help scientists in their journey to advance understanding of PD, leading to new, more effective PD therapies. If you have a confirmed Parkinson’s diagnosis, visit Parkinson.org/PDGENEration to learn more and enroll.
A YOPD diagnosis brings with it special challenges. For example, deciding how and when to disclose the diagnosis at work and to children can be difficult, not to mention coping with a progressive condition and trying to plan for the future. Social worker Elaine Book discusses these challenges and more, as well as techniques for dealing with them. Listen to other YOPD podcast episodes: Characteristics of YOPD and YOPD: Lifestyle, Family, and Counseling.
Aware in Care Ambassadors Kathy McMurray and Sara Holman share their success stories, as both were instrumental in educating hospital staff and refining the electronic medical records system to meet the unique needs to treat people with PD. Visit Parkinson.org/AwareInCare to order your Aware in Care hospital kit or download its components.
While it’s known as a movement disorder, people who live with Parkinson’s disease (PD) experience many non-movement, or non-motor, symptoms too – though not all of them are related to the disease. Peripheral neuropathy, or nervous system damage, fatigue and GI issues are common PD challenges that can also stem from other causes. Working with your doctor to identify the source of your symptoms is key to effective treatment.
This article is based on the Parkinson’s Foundation Expert Briefing series; Symptom Management: Is it PD, Medication or Aging? Exploring Non-motor Symptoms: Neuropathy, Fatigue, GI Issues presented by Ellen Walter, Nurse Practitioner, Cleveland Clinic, and Steven Swank, Clinical Pharmacist, University of Kansas Medical Center. Both organizations are Parkinson’s Foundation Centers of Excellence.
Causes of neuropathy, fatigue and impaired gastrointestinal (GI) function during the course of PD can be wide-ranging – and include everything from normal aging to medication side effects.
With any health challenge, it’s recommended to log symptoms. This can help your doctor rule out potential causes. When did symptoms start? Are there any patterns?
Neuropathy
Peripheral neuropathy describes damage to the nerves that carry messages between the brain and spinal cord. Although they may not know it by name, people who live with PD are more likely than others to experience peripheral neuropathy. It can cause pain, numbness, tingling or muscle weakness, or greater sensitivity in certain areas.
This condition can also cause loss of coordination or sometimes make people feel as if they're wearing gloves or socks. Due to increased risk for walking problems and falls, a falls risk assessment is critical for anyone living with Parkinson’s who experiences peripheral neuropathy in their legs.
Possible Causes
While there can be a connection to peripheral neuropathy and Parkinson’s medications, research shows people with PD can have neuropathy even before beginning treatment.
Other types of neuropathy are also more common in PD, including:
neurogenic orthostatic hypotension –is a sharp drop in blood pressure that happens when a person gets up from bed or from a chair, causing dizziness or even loss of consciousness
gastroparesis, a slowed down or delayed emptying of the gut
damage to nerves in the bladder can cause urinary incontinence
Neuropathy can also be related to more serious issues, such as alcoholism, diabetes, thyroid or kidney disease and even cancer. Let your doctor know right away if you experience neuropathy with any red flag symptoms, including:
bone pain
weakness
frequent unexplained infections
Early diagnosis and treatment can prevent permanent damage.
Medication-related Neuropathy
Some medications can also cause neuropathy or vitamin deficiencies that lead to neuropathy. Proton pump inhibitor (PPI) medications such as esomeprazole (Nexium) and omeprazole (Prilosec) block stomach acids and can also lead to vitamin deficiencies that spur neuropathy.
The diabetes medication metformin can lower vitamin B12 levels which can also cause neuropathy. People taking it should have their B12 levels checked regularly.
Though it’s not completely understood how it happens, long-term carbidopa/levodopa use can increase neuropathy too. Duopa carbidopa/levodopa intestinal gel therapy is more likely to cause peripheral neuropathy than oral tablets or capsules.
Other therapies that can cause neuropathy include:
Some chemotherapy treatments
Some immune suppressants
Nucleoside reverse transcriptase inhibitors (NRTIs), HIV medication
Amiodarone
Colchicine
Disulfiram
Hydralazine
Hydroxychloroquine
Metronidazole
Nitrofurantoin
Phenytoin
Similar Conditions
Restless leg syndrome and peripheral neuropathy can both cause an uncomfortable sensation in the legs. Sometimes people will say they have restless leg syndrome but actually what they're describing is neuropathy.
Neuropathy pain can sometimes be mistaken for arthritis, too. Neuropathy is often described as a burning, prickly, sharp or throbbing pain. Arthritis can also be described as throbbing pain, but it’s often accompanied by tenderness and joint stiffness
A common misconception is that deep brain stimulation (DBS) – a procedure where electrodes are implanted in the brain and block nerve signals that impair movement by way of a pulse generator – can cause peripheral neuropathy. It doesn’t, but tingling can be a stimulation side effect. An in-office device adjustment can usually fix this.
Treatment
Neuropathy treatment requires identifying the underlying causes. When vitamin deficiency is the cause, supplementation can lessen neuropathy and stop nerve damage.
Medications that can alleviate nerve pain but don’t stop nerve damage include:
Selective serotonin and norepinephrine reuptake inhibitor (SNRI) antidepressants duloxetine and venlafaxine.
Tricyclic antidepressants, such as nortriptyline.
Topical treatments including capsaicin cream and lidocaine cream or patch.
Onabotulinum toxin injections, such as BOTOX®.
Percutaneous electric nerve stimulation is a nonmedication therapy to help people with urinary incontinence due to neuropathy.
Fatigue
Excessive daytime sleepiness describes someone who falls asleep mid-conversation. Fatigue is different. Better explained as extreme exhaustion, about 50 percent of people with PD live with mental or physical fatigue. It can start early in Parkinson’s and persist throughout the course of the disease.
Possible Causes
The chemical changes that cause PD movement problems can cause fatigue. PD dyskinesias, involuntary dance-like movements, can leave those who experience it exhausted, too.
Left untreated, common PD sleep disorders can cause fatigue. Vitamin deficiencies, lifestyle habits, including a lack of regular exercise, alcohol use, poor nutrition and other diseases or disorders can also cause fatigue.
Watch for sudden onset of other symptoms associated with fatigue, including:
Shortness of breath
Weight loss
Signs of abnormal bleeding
Fever
Enlarged lymph nodes
Irregular heart rhythm
While not necessarily connected to fatigue, PD dopamine agonist medications such as pramipexole, ropinirole and apomorphine can cause sleepiness and sleep attacks. People with PD who drive or operate machine and take such medications should pull over if they feel tired. Rest or have someone else drive.
Medication-related Fatigue
Some medicines and PD treatments can cause fatigue, too. These include:
Medications that treat depression, a common PD symptom
Over-the-counter sleep and allergy medications, such as diphenhydramine
Beta blockers, such as metoprolol or carvedilol, sometimes used for tremor-control
Neuropathy medications
Blood-pressure medications
Dopamine agonists apomorphine, pramipexole, ropinirole and rotigotine
Levodopa
Amantadine
Treatment
Treating fatigue can sometimes be as simple as making lifestyle adjustments, including eating healthier, following a regular sleep schedule and getting daily exercise.
It’s also important in Parkinson’s to limit motor fluctuations, or “off” times. Work with your doctor to ensure your PD medications are lasting as long as they should – you may need a dose or timing adjustment.
One medication that has been shown to help with PD-related fatigue is rasagiline. There is insufficient evidence for other medications, such as methylphenidate or modafinil.
GI Issues
About 80% of people with Parkinson's experience GI issues. These can occur throughout the gastrointestinal tract, from drooling and swallowing problems to intestinal blockage and constipation, one of PD’s most common GI symptoms.
Though constipation is often defined as difficulty emptying the bowels or small, hard stool, watery stool can be a sign of severe constipation or impaction. Potentially life-threatening, impaction can lead to bowel obstruction or a tear in the colon.
Constipation can cause a bloated or full feeling, acid reflux, nausea or cramping. A build-up of hard stool can also cause vomiting.
Possible Causes
Many who live with PD experience constipation long before they are diagnosed. It can stem from many causes, including the neuropathy-related delayed emptying of the gut mentioned earlier, gastroparesis. Gastroparesis slows and weakens stomach muscle contractions, delaying digestion.
PD-related movement difficulties may make it more difficult to travel to the bathroom, so someone may limit their fluid intake, increasing dehydration and constipation. Movement difficulties may also limit exercise, which can help alleviate constipation.
As people age, GI issues are more common. Diabetes, thyroid disease and others can also slow gastric emptying. Damage to the vagus nerve from childbirth or surgery can cause constipation, too.
It’s important to call your doctor right away should you experience any red flag symptoms, including:
Frequent, persistent abdominal pain
Blood in your stool
Watery stool
Unintentional weight loss
Fever
Medication-related GI Issues
Constipation, nausea and vomiting are common medication side effects. Diuretics, or water pills, such as furosemide (Lasix) can pull water out of the body, causing constipation. Doctors often avoid prescribing older people diuretic or dehydrating medications as they already face increased dehydration risks.
Used to treat blood pressure, diuretic hydrochlorothiazide (HCTZ) can also cause constipation and is associated with a drug interaction with PD medicine amantadine.
Anticholinergic medications are those that can slow gut movement. They include oxybutinin and over-the-counter diphenhydramine.
PD-related gastroparesis can also impact how medications are absorbed. Most medications taken by mouth are absorbed in the stomach or further below it in the small intestine. People with decreased gut motility may find PD medications such as carbidopa/levodopa take longer to take effect or seem less effective.
Stomach acid-blocking proton pump inhibitors (PPIs) such as esomeprazole (Nexium) can increase the risk of a condition called small intestinal bacteria overgrowth (SIBO), experienced by up to 50 percent of people with Parkinson’s. SIBO can also cause levodopa and other medications to take longer to work, wear off more quickly or not work at all, because they must travel to, and through, the stomach to be effective.
Some gut bacteria, such as enterococcus faecalis, can actually breakdown levodopa itself. H. pylori, a type of stomach infection, can also decrease levodopa absorption. Antibiotics can help with SIBO and H. pylori.
Treatments
Your doctor can help discover and treat GI issues and they might refer you to a gastroenterologist, a doctor specializing in GI issues.
Eating fiber-rich foods and decreasing starchy ones, drinking more fluids and increasing exercise can all minimize constipation. Dopaminergic medications – those that replenishing or mimic dopamine in the brain – apomorphine injections, BOTOX® injections and biofeedback techniques can also alleviate the increased straining, pain and incomplete bowel evacuation common in Parkinson’s.
Treatment Tips
Bring a complete list of current medications, including any over-the-counter medications or supplements, to every doctor’s appointment. Also include a symptom log. Remember to describe what you are feeling, rather than using medical terms. This can help your healthcare team differentiate conditions and determine treatment.
Choosing one pharmacy to fill all of your medications is also helpful, as the pharmacy can flag any drug interactions.
Order or download the Aware in Care hospital kit. This can help your healthcare team understand what prescription medications you are taking, the importance of timing your medication and other vital information.
Parkinson’s 101: We Answer Your Top Parkinson’s Questions
Nearly one million Americans are living with Parkinson’s disease (PD). With Parkinson’s, the earlier you detect the disease and receive a diagnosis, the sooner you can begin living a better quality of life. Below we answer your top Parkinson’s questions:
1. What is Parkinson’s?
Parkinson's disease is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra. Symptoms generally develop slowly over years. Although there is no cure, treatment options vary and are tailored to each person’s individual symptoms.
There are 10 early signs of Parkinson's. No single one of these signs means that you should worry, but if you have more than one, consider speaking with your doctor. Early signs include:
Tremor: A slight shaking or tremor in your finger, thumb, hand or chin.
Small Handwriting: A change in handwriting, such as smaller letter sizes and crowding words together — this is called micrographia.
Loss of Smell: More trouble smelling foods like bananas, dill pickles or licorice.
Trouble Sleeping: Thrashing around in bed or acting out dreams when you are deeply asleep.
Trouble Moving or Walking: Stiffness in your body, arms or legs; arms don’t swing when you walk.
There are typical patterns of progression in Parkinson’s defined in stages.
Stage One: Initial stage where mild symptoms generally do not interfere with daily activities. Tremor and other movement symptoms occur on one side of the body only. Changes in posture, walking and facial expressions can occur.
Stage Two: Symptoms start getting worse. Tremor, rigidity and other movement symptoms affect both sides of the body. Walking problems and poor posture may be apparent. Daily tasks are more difficult and lengthy.
Stage Three: Considered mid-stage, loss of balance, slowness of movements and falls become more common. The person is still fully independent, but symptoms significantly impair activities such as dressing and eating.
Most people develop other symptoms related to Parkinson's that are collectively known as non-motor symptoms. They can include anxiety, depression, sleep disorders and weight management issues.
Yes. Vertigo and dizziness are commonly reported symptoms in people with Parkinson’s. Most experts agree that dizziness and vertigo can be broadly defined as the sensation of spinning or whirling, and the sensation can be associated with balance problems.
We do not know exactly what causes Parkinson's, but scientists believe that a combination of genetic and environmental factors are the cause. Genetics cause about 10% to 15% of all Parkinson's.
Understanding the connection between Parkinson's and genetics can help us understand how the disease develops and ultimately how it can be treated or cured. This is why studies like the Parkinson's Foundation PD GENEration study that is linking genetics to Parkinson's are essential.
Did you know our books are now available on Kindle? Read all 12 of our books using your Kindle or Kindle app on your tablet. Every book is written and designed to make life a little easier for people with Parkinson’s disease (PD), caregivers and family members.
Check out all of our books available on Kindle now:
These books in Spanish are also available on Kindle:
Not sure where to begin? Talk to a Helpline specialist for personalized book and resource suggestions. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.
