The human body naturally produces antioxidants. These antioxidants have been shown to destroy excess free radicals (oxidative stress) which, in turn, helps protect brain cells (neurons) from their toxic effects, such as inflammation, DNA damage and cell tissue damage. Studies have also shown that long-term oxidative stress contributes to the development of many diseases such as diabetes, cancer and Parkinson’s disease (PD).
In the brains of people with PD, there’s a build-up of a protein called PARIS (Parkin Interacting Substrate), that inhibits the production of another protein called PGC-1α. One of the many important functions of PGC-1α in dopamine-producing cells is to fight off damaging oxidative stress – so that there’s plenty of healthy dopamine remaining to do its job.
This begged the question: might there be an antioxidant that could block the PARIS accumulation – that leads to the PGC-1α not being able to protect the dopamine-producing cells?
A just-published study in the journal, Science Translational Medicine, titled “PARIS farnesylation prevents neurodegeneration in models of Parkinson's disease,” (Jo et al., 2021) screened over 230,000 compounds, and identified farnesol as a possible candidate. Farnesol is a natural compound found in berries (as well as other fruits and herbs) that has demonstrated impressive antioxidant capabilities.
To accomplish this complex study, scientists created mice models with different genetic make-ups. For example, some of the mice models did not have the parkin protein, while others had an overproduction of PARIS, among others. The mice were then randomly selected to be fed either a farnesol-supplemented diet for one week, or a regular mouse diet.
The following week, the mice were injected with alpha-synuclein, (a key protein involved in PD). Behavioral and chemical tests were conducted, in addition to robust statistical analyses. Next, multiple experiments were carried out on the mice brain tissue, such as measuring the concentration of farnesol in the mouse brain. The scientists also measured the levels of dopamine, PARIS and PGC-1α proteins in the mice brain tissue.
Results
PD mice models fed the farnesol-supplemented diet demonstrated improvements in strength and coordination tests designed to measure the progression of PD symptoms.
PD mice models fed the farnesol-supplemented diet had twice as many healthy dopamine neurons than mice not fed the farnesol-enriched diet.
PD mice models fed the farnesol-supplemented diet had approximately 55% more of the protective protein PGC-1alpha in their brains than the untreated mice.
What does this mean?
This study demonstrated that in mice models of Parkinson’s, eating farnesol not only prevented the loss of dopamine-producing neurons,it reversed behavioral deficits in mice, showing an improvement in strength and coordination. Thus, the process of the farnesol binding to the PARIS protein worked: PARIS was successfully deactivated and could no longer interfere with PGC-1α doing its job to protect dopamine-producing neurons.
Of note, since this study was conducted in mice, it is not known if farnesol will act the same way in people. It is far too soon in this investigative process to know, but these findings are encouraging and warrant further study.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and antioxidants by vising the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
Brahmachari, S., Lee, S., Kim, S., Yuan, C., Karuppagounder, S. S., Ge, P., . . . Dawson, T. M. (2019). Parkin interacting substrate zinc finger protein 746 is a pathological mediator in Parkinson's disease. Brain, 142(8), 2380-2401. doi:10.1093/brain/awz172
Jo, A., Lee, Y., Kam, T. I., Kang, S. U., Neifert, S., Karuppagounder, S. S., . . . Shin, J. H. (2021). PARIS farnesylation prevents neurodegeneration in models of Parkinson's disease. Sci Transl Med, 13(604). doi:10.1126/scitranslmed.aax8891
Pham-Huy, L. A., He, H., & Pham-Huy, C. (2008). Free radicals, antioxidants in disease and health. Int J Biomed Sci, 4(2), 89-96.
Smeyne, M., & Smeyne, R. J. (2013). Glutathione metabolism and Parkinson's disease. Free Radic Biol Med, 62, 13-25. doi:10.1016/j.freeradbiomed.2013.05.001
Updates From the Field: Parkinson's Outcomes Project
For more than a decade, the Parkinson’s Outcomes Project has captured the experiences of people with Parkinson’s disease (PD) and care partners on topics such as medications, treatment, exercise and lifestyle. How has this essential data helped make life better for people with Parkinson’s?
When researchers analyze the experiences of more than 13,000 people living with PD who seek treatment within the Parkinson’s Foundation global Centers of Excellence network, they can identify new and better ways to provide care and manage Parkinson’s. The goal of this study is to improve health outcomes and quality of life for people with Parkinson’s and care partners.
Parkinson’s Outcomes Project research has led to several findings that have already improved care within the PD community. Four primary landmark findings include:
Exercise and Physical Therapy
Increasing physical activity to at least 2.5 hours a week can slow the decline in quality of life and help people with Parkinson’s live fuller lives. At the same time, referrals to physical therapy during the early stage of disease can help prevent hospitalization and falls. These findings led to the establishment of the Exercise Initiative, partnering with physical therapists and exercise professionals nationally.
Mental Health
Depression and anxiety are the top factors impacting the overall health of people with Parkinson’s. This understanding has led to greater supports across Parkinson’s Foundation Centers of Excellence as well as a dedicated sub-study looking at mental health.
Hospital Care
People with Parkinson’s are hospitalized 1.5 times more often than their peers without Parkinson’s, and these visits bring with them a host of complications. These findings resulted in the Foundation’s Hospitalization Initiative to drive culture and policy change at the hospital administration level. Learn more about the Parkinson’s Foundation hospitalization kit now.
Caregiving
The cost of caregiving increases 180% from early to advanced stages of Parkinson’s, with female care partners predominantly (72%) carrying the weight of care. Acknowledging these factors and how to best provide day-to-day care will help improve the quality of life for those with Parkinson’s and their care partners.
The Next Generation of Parkinson’s Research
The impact of the Parkinson’s Outcomes Project continues to direct the work of the Parkinson’s Foundation. Next, the study will next focus on recruiting more participants who are part of traditionally underrepresented populations in clinical research. The study will work to better understand the PD experiences of people with Young-Onset Parkinson’s, newly diagnosed, early and late-stage disease progression and broader ethnic and racial diversity.
The Foundation is underway with the next phase of the study, genetic testing offered through PD GENEration: Mapping the Future of Parkinson’s Disease. Genetic testing is a powerful tool that can help people learn more about their own disease, uncover biological pathways that cause Parkinson’s and can accelerate the development of improved treatments and care for all people with Parkinson’s.
“Together, the Parkinson’s Outcomes Project and PD GENEration will help researchers understand why and how Parkinson’s develops,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “These initiatives may also answer questions that researchers may never have asked, providing hope and a vision towards a cure for PD.”
For the full update from the field, read Parkinson’s Outcome Project: Improving the lives of people living with Parkinson’s through research. In this publication, we highlight landmark findings, how this research guides Foundation priorities, what’s next for the study and more. Read it now.
Though every person living with Parkinson’s disease (PD) experiences symptoms and progression differently, there are standard phases of advancement, known as stages. Whether you are newly diagnosed or living with advanced PD, you can work with your doctor and healthcare team to chart your progression — central to living your best with Parkinson’s.
This article is based on a Parkinson’s Foundation Expert Briefing The Parkinson’s Journey: Understanding Progression presented by Annie Killoran, MD, MSc, from University of Iowa Hospitals and Clinics, and Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, from Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorders Center — both from Parkinson’s Foundation Centers of Excellence.
Establishing a Baseline
Parkinson's advances over time. Your Parkinson’s symptoms are unique to you. Taking a symptom snapshot and regularly assessing your PD progression can ensure that you and your doctor consider appropriate care for every stage. This can also help you plan for any challenges before they happen.
Though everyone experiences PD differently, actively engaging in wellness and exercise is vital to maintaining balance and movement in Parkinson’s. The Hoehn and Yahr PD scale classifies PD into five stages. This scale is mostly used for research, but can also help explain how PD impacts quality of life:
Stage One
Mild movement symptoms, such as tremor, usually initially only affect one side of the body. Although everyone who lives with PD will progress differently in their journey, a person with Parkinson’s can remain at this early stage, or the next, for up to 10 years.
Stage Two
Movement symptoms, including slowing and stiffening, begin to become noticeable on both sides of the body. Erratic, involuntary movements, called dyskinesia, can also appear during this stage and the next. Dyskinesia often begins after a few years of levodopa treatment. Share any symptoms with your doctor, who might adjust your levodopa dose or try incorporating anti-dyskinesia therapy.
Stage Three
Trouble with balance and increased fall risks characterize this mid-stage of Parkinson’s. Activities may become harder, too. Physical and occupational therapy and walking aids may reduce falls. “On-off” periods (when levodopa unpredictably starts or stop working) can become common in people who have taken the medication for several years.
Stage Four
As symptoms progress – usually in people who have lived with PD for 18 years or more – the need for assistance with tasks, caregiving and possibly a wheelchair to prevent falls increases. Around 80% of people who have lived with Parkinson's for 15 years will have recurrent falls. This is associated with a reduced quality of life.
Stage Five
At this most advanced PD stage, tasks are very difficult and often require comprehensive caregiving. Planning well ahead for this stage can minimize stress, optimize care, and ensure your preferences are carried out.
Living Well at Every Stage
Just as a healthy diet and ample exercise can help you live optimally with Parkinson’s, so can palliative care. Palliative care — sometimes mistaken for end-of-life, or hospice, care — is instead holistic, team-based treatment designed to support a person’s quality of life from the point of their diagnosis onward. Doctors, nurses, social workers, occupational and physical therapists, nutritionists and others healthcare specialists can all be a part of a palliative care team.
As you and your care partner begin incorporating support resources, take things one step at a time. Give yourselves extra time and patience, and make life easier where you can. A social worker with experience in movement disorders can help assess your needs and create a palliative care starting point. From there, they can either provide certain resources directly or help you or your care partner identify and locate needed supports.
Prioritizing Care
Because stress can amplify PD’s challenges, caring for your emotional health is as important as tending to your physical well-being. The journey with Parkinson’s can be filled with emotions, including frustration and grief. Whether you live with PD, or love someone who does, learning to acknowledge and accept all your feelings is important.
Making space for both positive and painful emotions is healthy and human. Taking time to observe and sit with your emotions can help you pinpoint any challenges in your life. This can be the first step in tackling them.
Taking Action
Living with Parkinson’s not only asks us to sometimes make room for heavy emotions, it can also require us to have difficult conversations. Discussing and planning for advance care, something everyone should do whether living with PD or not can be a sensitive topic. However, talking about your wishes early on with your family can offer peace of mind.
Engaging a lawyer, chaplain or social worker with advance care planning experience in your conversation can be helpful. These conversations can inform advance directives, living wills and POLST (Physician Orders for Life-Sustaining Treatment) forms — legal documents that ensure your wishes are carried out if you are unable to communicate them.
Remember, if something is standing in the way of you living your best life with Parkinson’s, speak up. People with PD might hesitate to talk about seemingly taboo challenges — hallucinations, urinary incontinence or intimacy issues. It is important to share these quality-of-life issues with your care provider. They are often manageable. Things might be as simple as a medication adjustment.
The Parkinson's Foundation is committed to you at every step of your journey. Call our Helpline for answers to your Parkinson’s questions and referrals at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org.
Understanding 'Gene Silencing' and Its Role in Parkinson’s and Dyskinesia
As a neuroscience professor, Kathy Steece-Collier, PhD, bridges the gap between basic research and treatment. For more than three-decades, her focus on Parkinson’s disease has brought a better understanding of the disease and increased hope for improved treatment. Yet before choosing a path in neuroscience, Dr. Steece-Collier considered a career in special education. It was only after a conversation with Professor Stephen Binkley — a Nobel Prize winning scientist — that her educational path shifted, leading her to a groundbreaking career in research.
“I found my translational science niche and I became interested in pursuing continuing treatments for people with Parkinson's disease,” said Dr. Steece-Collier.
Now, as a principal investigator and professor at Michigan State University’s College of Human Medicine, Steece-Collier focuses on the development of improved therapeutics for people with Parkinson’s disease (PD). Her research places particular emphasis on understanding how the brain reacts and remodels itself in response to neurodegeneration (loss of brain cells) and therapeutic interventions.
Half-a-century ago it was recognized that dopaminergic drugs, specifically levodopa, could alleviate many Parkinson’s symptoms. However, over time, complications arose with their continued use — including the development of unpredictable motor responses and involuntary movements known as levodopa-induced dyskinesia. Much research has been implemented over the years in a search to provide relief for this side-effect of PD therapy that involves involuntary and erratic movements, which can occur in the face, arms, legs and/or trunk.
The primary focus of Dr. Steece-Collier’s lab is aimed at understanding dyskinesia side-effects. One project is related to a still experimental therapy that involves using grafts, or transplants, of new dopamine cells placed into the striatum (area of the brain) of patients with PD. While such grafts have been shown to produce clear clinical benefits in some individuals, the results have been inconsistent and, in some, also induced dyskinetic movements — a phenomenon referred to as graft-induced dyskinesias.
Graft-induced dyskinesias are presumed to occur when the newly grafted neurons ‘hook up’ incorrectly within the brain of a person with Parkinson’s. “I became interested in what was causing graft-induced as well as medication-induced dyskinesias. I continue to study these basic biology mechanisms to try and understand what is going on in the brain of individuals with Parkinson’s to limit therapeutic benefits and cause unwanted side-effects,” said Dr. Steece-Collier.
In 2014, an International Research Grant from the Parkinson’s Foundation allowed Dr. Steece-Collier to delve deeper into a second topic of study in her lab, medication-induced dyskinesias. Her research sought to determine if a specific calcium channel in the brain, which allows calcium to enter nerve cells, contributes to levodopa-induced dyskinesias and whether silencing, or blocking, this channel could alleviate them.
“The Parkinson's Foundation was the first funding organization that had faith in this project. They saw enough promise in it that they gave us the seed money to develop the necessary preliminary data to support the importance of a particular population of calcium channels in the expression of levodopa-induced dyskinesias.”
Dr. Steece-Collier and her research team determined that a ‘gene silencing’ technique to ‘quiet’ these calcium channels could protect against levodopa-induced dyskinesias. This process involves injecting genetic material into a particular region of the brain where calcium channels develop abnormal activity. This gene therapy approach that allows new genetic information to reduce the number of these channels has already shown remarkable progress in successfully alleviating levodopa-induced dyskinesias in an experimental model of PD.
“With the Parkinson’s Foundation funding, we were able to get enough preliminary data that we could then go to the National Institutes of Health to obtain funding for larger functional studies. Indeed, without the Parkinson’s Foundation it is likely that none of this would have been realized.”
- Dr. Steece-Collier
The greater aim for this research is to provide rationale for the design of clinical trials of gene silencing to reduce the abnormal calcium channel signaling that occurs in the PD brain. Dr. Steece-Collier remains hopeful that the effective and life-changing application of this research will strengthen interest in the development of new therapies that target this specific calcium channel to not only ameliorate dyskinesia side-effects but potentially slow disease progression. “This project is near and dear to my heart, and I hope in the next decade we can take it to clinical trial — that'll be what I'll retire on,” said Dr. Steece-Collier.
After reading all 10 early signs of Parkinson’s disease, perhaps you notice you or your loved one is experiencing several symptoms. What should you do next?
Take a second to remember that no single one of these signs means that you should worry. Also know that sometimes symptoms can be caused by an injury, age, or another underlying issues. However, if you have several of these symptoms and you are worried, it may be a good time to:
Follow up with a movement disorder specialist, who will administer a check-up and several tests in the office. A skilled practitioner can come to a reasoned conclusion that it is Parkinson’s. Every person with Parkinson’s has a unique diagnosis story — some people are surprised that a specialist can diagnose them after one in-office visit, while others can take years of misdiagnosis.
If you are diagnosed with Parkinson’s, take these steps:
Learn about coping with a diagnosis. When you or a family member is diagnosed with Parkinson's, you will experience a range of emotions and go through several stages of adjustment to the disease.
Build your care team. If your symptoms interfere with your life in any way, it is never too early to find specialists who are trained in Parkinson’s. For instance, find a physical therapist experienced in Parkinson’s if you have balance issues or a mental health professional who can help with mood changes associated with Parkinson’s.
Be active. Evidence shows that exercise is essential to managing Parkinson’s. Creating a fitness routine soon after your diagnosis is key to living well. Regular physical activity can improve many PD symptoms and offer a neuroprotective effect.
Find what works for you. Take your time to build your new community. We know it can be overwhelming, so here are some ways to get started:
Call our Helpline. Speak with a Helpline specialist who can help you find your nearest support group, PD-tailored exercise class, movement disorder specialist and answer your Parkinson’s questions. Call us at 1-800-4PD-INFO (1-800-473-4636) from Monday to Friday, 9 a.m. ET to 7 p.m. ET.
Even after years of managing Parkinson’s disease (PD), symptoms may become more challenging to control. Parkinson's Foundation Chief Scientific Officer James Beck, PhD, walks us through how symptoms may change over time and when surgical therapies, such as deep brain stimulation (DBS), may become a better option for those living with Parkinson’s.
Pandemic Fast-Tracks Future of Digital Therapies for Parkinson’s Community
In the context of the COVID-19 pandemic, telehealth medicine has emerged as an essential tool for accessing healthcare. This trend has led to increased demand for evidence-based digital treatments, known as digital therapeutics. In response to the demand, the development of digital therapeutics is being fast-tracked in the scientific research community and utilized among people with Parkinson’s disease (PD). Although anyone can create and offer downloadable wellness apps, digital therapeutics require they be based upon rigorous, evidence-based studies that clinically demonstrate their effectiveness.
Since digital therapeutics is an evolving, new technology, still lacking extensive data, it is essential that potential real-word benefits and shortfalls be investigated. A recently published study in the Journal of Parkinson’s Disease, titled, “Digital Therapeutics in Parkinson’s Disease: Practical Applications and Future Potential,” (Ellis & Earhart, 2021), explored recent and emerging evidence for using digital therapeutics to facilitate lifestyle changes and motor (e.g., walking) and non-motor (e.g., sleep, anxiety) Parkinson’s symptoms, with the goal of determining whether participant outcomes might be improved.
As part of this research, researchers reviewed multiple studies. Information provided concerning the length of studies, types of studies, study design, study demographics, number of participants and statistical significance varied greatly. Additionally, most studies were not PD population-specific.
Researchers analyzed the following studies:
Results
Digital Therapeutics to Improve Walking
A one-year, single-blinded randomized controlled trial of people with mild to moderate PD in which participants were given a video-taped custom-tailored exercise program designed to help with walking. After uploading the video as a mobile app for their personal use, participants were required to enter personal data related to their adherence to the program, pain, and level of difficulty. This data was monitored remotely by a physiotherapist with whom the participants could message, ask for help, receive encouragement, etc. The physiotherapist would also adapt the exercises based on the progress achieved.
An increase in daily steps and moderate intensity minutes was experienced by both groups, with clinically meaningful improvement achieved by the less active group.
Digital Therapeutics to Improve Non-Motor Outcomes
A six-session, single-blinded randomized controlled study of 1,711 adults compared digital cognitive behavioral therapy (CBT), delivered via web or mobile, with standard sleep education hygiene, for insomnia on health, psychological well-being, and sleep-related quality-of-life. Treatment consisted of a behavioral component (e.g., relaxation), a cognitive component (e.g., mindfulness) and an educational component (e.g., sleep hygiene). Participants could view their progress, treatment strategies, sleep schedule and educational materials via the platform at their convenience. An interactive, animated virtual therapist provided support and advice based upon the goals set by the patients at the beginning of the study. Participants also uploaded daily data in the form of a sleep diary.
The CBT approach resulted in a small improvement in functional health and psychological well-being. It also resulted in a large improvement in sleep-related quality-of-life compared with sleep hygiene education — after four weeks and 24 weeks. This study was not conducted among people with PD but suggests potential benefits for people with Parkinson’s.
Digital Therapeutics for Virtual Coaching & Healthy Lifestyle Promotion
A 12-week study used an artificial intelligence virtual coach to provide instant messaging (to personal devices) focused upon fostering a Mediterranean-style diet and an increase in physical activity. Eighty-one inactive (mostly overweight or obese) adults, ranging in age from 45 to 75 participated in a proof of concept study (testing whether the concept could realistically work). Weekly check-ins concerning participants’ step counts and dietary choices were recorded.
Physical activity was increased by an average of 109 minutes per week. There was also an overall average weight loss of about 2.8 pounds. Thus, practicality was excellent in terms of recruitment, retention (90% at 12 weeks) and safety. Limitations of this study include a lack of a control condition and a relatively short follow- up period.
What Does This Mean?
The COVID-19 pandemic put the need for remote healthcare in fast-forward. Digital therapeutics — which combines sophisticated technology with evidence-based medicine — shows great promise. It is a meaningful step forward towards more personalized medicine, and could enhance the preferred, more holistic, interdisciplinary approach for managing PD.
However, there is much work to be done. Digital therapeutics remain underdeveloped and underutilized. In addition, while proof-of-concept studies in the general population are valuable, more studies specific to the PD population are needed.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth, COVID-19 and its impact on the PD population by visiting the below Parkinson’s Foundation resources, or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
Ellis, T. D., & Earhart, G. M. (2021). Digital Therapeutics in Parkinson's Disease: Practical Applications and Future Potential. J Parkinsons Dis, 11(s1), S95-S101. doi:10.3233/JPD-202407
Schneider, R. B., Omberg, L., Macklin, E. A., Daeschler, M., Bataille, L., Anthwal, S., . . . Parkinson Study Group, A. T. H. P. D. I. (2021). Design of a virtual longitudinal observational study in Parkinson's disease (AT-HOME PD). Ann Clin Transl Neurol, 8(2), 308-320. doi:10.1002/acn3.51236
The Latest in Parkinson’s Medications: Taking a Personalized Approach
From renowned singer Linda Ronstadt to former NBA player Brian Grant, the faces of Parkinson’s disease (PD) are as diverse as the symptoms. While there can be common themes — such as slowed movement (bradykinesia) or stiffness (rigidity) — each person’s PD experience is unique, making individually tailored therapy vital. Fortunately, the list of medications and treatments that improve quality of life for people living with PD continues growing.
Parkinson’s disease can vary widely from one person to another. Whether or when someone might experience rapid, involuntary and uncontrollable body movements, called dyskinesias, as a complication of some Parkinson’s medications can also fluctuate. Cognitive changes or multitasking can pose challenges for some who live with PD, while others might experience hallucinations. Optimal PD treatment and care should be based on your unique symptoms and help you to live your best life.
Traditional PD Medications
For a go-to medications and Parkinson’s guide, read our free educational book: Medications.
Although a cure for Parkinson’s has still not been discovered, progressive genetic research is accelerating PD science, uncovering knowledge that may lead to breakthrough therapies. Currently, there are medications and surgical treatments that can improve motor and non-motor PD challenges.
Principal among these is carbidopa/levodopa therapy, the most effective PD prescription. The brain’s chemical messenger dopamine diminishes in PD, causing many of the disease’s symptoms. Carbidopa/levodopa (Sinemet) works to increase dopamine levels. Developed more than 50 years ago, this affordable treatment continues to improve symptoms and quality of life for people who live with Parkinson’s today.
Many established medications to boost the effects of carbidopa/levodopa also exist, as well as alternative therapies, including:
Dopamine agonists: medicines that imitate dopamine’s action in the brain.
Monoamine Oxidase Type B (MAO-B) inhibitors: enzyme-breakdown inhibitors that prolong that action of dopamine in the brain.
Amantadine: long used to ease PD tremor, this medicine has more recently been found to improve the dyskinesia that can often start after years of levodopa treatment.
Surgical treatments: including deep brain stimulation (DBS), can be helpful for those who experience medication complications or motor fluctuations.
While these standard treatments can enhance quality of life with Parkinson’s, they pose challenges, too, such as motor fluctuations. In particular, levodopa can ease movement and improve function, but can also increase dyskinesia at certain doses as time goes on. Known as “off” times, when medications are delayed or wear off, symptoms return. Other common side effects from traditional PD treatments can include:
Behavioral changes, including compulsive behaviors like gambling or sexual fixation
A movement disorder doctor can highlight potential benefits and risks, while helping you to find the treatment that works best for you. Good motor symptom management might include one of the above traditional PD medications, or a combination of therapies. Today, several newer treatments can enhance PD therapies and treat a diverse array of non-motor symptoms.
Newer Parkinson’s Therapies
Extended-release carbidopa/levodopa (RYTARY®) has been on the scene for more than five years, yet people are still unaware of its benefits. The capsule may offer longer-lasting symptom improvement for people who experience frequent motor fluctuations.
As PD advances, “off” times can increase. Additionally, some people living with PD can experience gastroparesis (slowed emptying of the stomach). This can make oral medications less effective. Carbidopa/levodopa enteral suspension (CLES or DUOPA™) therapy can lessen motor fluctuations by continuously delivering medicine to the small intestine. This treatment can also lessen dyskinesia. A current clinical research study is exploring how to deliver a similar treatment under the skin using a microneedle.
Levodopa Add-ons
Treatments that complement levodopa can help to minimize motor fluctuations. These include:
Safinamide (XADAGO®), a once-daily tablet. Similar to rasagiline, this MAO-B inhibitor can reduce “off” times without dyskinesia.
Opicapone (ONGENTYS®) is a COMT (catechol-o-methyl transferase) inhibitor, like entacapone. Also taken once daily, it extends levodopa benefits and reduces “off” times.
Istradefylline (NOURIANZ™) blocks dopamine-adjacent adenosine A2 receptors to improve PD symptoms. While safinamide, opicapone and istradefylline can reduce “off” times, they can all potentially increase dyskinesia.
Another once-daily add-on, an extended-release amantadine formula (GOCOVRI® ER) taken at bedtime, can reduce motor fluctuations and dyskinesia, but can possibly worsen hallucinations in those who experience them. Generic amantadine can also lessen “off” times.
On-Demand Medications
Two newer levodopa add-on medications are designed to quickly ease intermittent, sudden “off” times:
Levodopa inhalation powder (INBRIJA™) can be administered via inhaler as needed, up to five times a day. It can improve motor fluctuations within 10 minutes and last up to 60 minutes. For some, the powder can cause coughing.
Sublingual apomorphine (KYNMOBI®) dissolves under the tongue to relieve wearing off episodes for people with PD within 15 minutes, lasting up to 90 minutes. Side effects can include nausea, so treatment may require antinausea therapy. It should be used for the first time in the doctor’s office, as it may briefly induce low blood pressure for some people.
Addressing Dyskinesias
While uncommon in early Parkinson’s, about 90%of people who have lived with PD for 10 or more years will experience dyskinesia. Adjusting medications can help. Sometimes additional medications are required.
One option is the earlier-mentioned amantadine GOCOVRI® ER formula, U.S Food and Drug Administration (FDA) approved to treat dyskinesia. However, it can potentially increase constipation, impact cognition and worsen hallucinations.
Parkinson’s Disease Psychosis
PD psychosis, characterized by confusion, delusions and hallucinations, can be triggered by PD medications, dosages or Parkinson’s itself. Cognitive changes can also be a sign of dementia. These symptoms should be discussed with your doctor.
Medication adjustments can help with PD psychosis, as can clozapine (Clozaril) and quetiapine (Seroquel). A newer treatment, pimavanserin (NUPLAZID®) was approved by the FDA specifically for PD psychosis in 2016.
Low Blood Pressure
Up to half of people living with PD experience lightheadedness, fainting and other symptoms due to neurogenic orthostatic hypotension — a significant blood pressure drop upon standing.
Medication adjustments can help. Medications such as droxidopa (NORTHERA®) may also be beneficial. Droxidopa treats lightheadedness but should not be taken within five hours of bedtime. Headache, dizziness, nausea and fatigue are among the side effects.
Drooling
Decreased swallowing in PD can cause sialorrhea, or drooling. Injectable, FDA-approved therapies can reduce saliva flow. Botulinum toxins XEOMIN® (incobotulinumtoxinA) and MYOBLOC® (rimabotulinumtoxinB) can provide between three to four months of relief.
Tremor-Predominant PD
Deep brain stimulation can improve tremors and motor fluctuations when motor fluctuations aren’t sufficiently controlled with medication. It requires brain surgery.
Focused ultrasound is a minimally invasive surgical procedure that can also improve tremors. An alternative to DBS, it uses high-energy sound waves to terminate a small tremor-related area of the brain. The effects are often immediate. It was approved by the FDA in 2018 for the treatment of tremor-dominated Parkinson’s.
As research continues improving care for people with PD, exercise, a nutritious diet and restorative sleep remain key to symptom management and living your best life.
The Parkinson's Foundation is here for you. Our Helpline has answers to your Parkinson’s questions at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org
A Beginner's Guide to Managing Pain Through Mindfulness
For most people, pain can be part of daily life. Pain expresses itself and manifests physically, emotionally, spiritually and mentally. Those who live with pain, look for ways to manage it throughout the day — consciously or subconsciously. For people with Parkinson’s, pain is a common non-motor symptom.
Emotional pain can be brought on by stressful situations, from the holidays to a Parkinson’s diagnosis. While physical pain can be brought on by Parkinson’s symptoms or the physical demands of caregiving.
There are many ways to manage physical pain, including:
There are different types of pain, and other ways to manage it. The mind plays a significant role in pain management. When you start to think about how the mind responds to pain, you can start to redirect your thoughts and how to address that sensation, adopting a new technique for managing pain.
Below are six steps to managing pain through mindfulness:
1. Acknowledge your pain.
Which type of pain are you experiencing? Pain can take shape in multiple ways:
Physical pain: felt in the body — tingling, burning, throbbing, aching
Emotional pain: feelings of grief, loneliness, panic or worthlessness
Mental pain: feelings of anxiety or depression
Spiritual pain: feeling disconnected from yourself and others
2. Work on redirecting your response to pain.
Notice where you are experiencing pain. Say, “Hello. I feel you. I hear you. And I accept you.” Repeat this mantra as many times as you need to acknowledge your pain and to begin cultivating a relationship with the sensation or thoughts you are feeling.
A mantra is a sound, or vibration to help reduce stress, anxiety or pain. Mantras can help adapt the brain to how it responds to pain.
3. Recognize your strength.
Your strength comes in many forms — physical, mental, spiritual and emotional — the same ways pain manifests. When living with chronic pain, some people may feel they are not as strong as they should be. Chronic pain can also cause fatigue. Our body and minds also work hard to avoid pain, to push it away. This can lead to exhaustion and forgetting about the strength you do have.
Any amount of strength is reason to celebrate. Find your reason to celebrate — what strength and motivation did you find today? Did your strength look like taking a walk, folding the laundry, cooking, calling a friend to catch up or spending time resting? How did your strength show up today? And tell yourself, “I am strong. I am resilient. I trust my body.”
4. Reduce your stress.
Triggers are events or everyday things that can set you off. They increase blood pressure, anxiety and pain. For example, being stuck in traffic or unable to button a shirt. How you respond to stressors can cause the same stress response in your body. Stress can also make Parkinson’s symptoms worse.
Does stressing about the traffic help the situation? Does feeling frustrated make you feel better? Does looking for your phone with anger improve your search skills? Probably not. In fact, stress slows us down.
Try to categorize your stressors. Ask yourself, “is this situation a mountain or a mole hill?” Next, breathe. Once you can bring yourself to see the significance of a stressor, you can start to feel relief. Pain is also associated with feelings of uncertainty and insecurity, which can manifest itself to become anxiety.
5. Make yourself feel safe when experiencing pain.
Understand that it is common to worry when experiencing pain, but recognize that fear or uncertainty, and work towards making your body and mind feel safe. How can you reduce your anxiety?
Mindful meditation can help — using our breath to calm the nervous system, along with using words and phrases, like mantras.
Calming smells, like essential oils of lavender or jasmine.
Be gentle with yourself. Refrain from judgement and return to objective awareness.
Show yourself some extra love. Be kind to yourself. When your body is hurting, do something kind for it— take a bath, drink herbal tea, breathe into your body and say: “I am safe, I am loved.”
During flare ups, or bad days, it’s even more difficult to remind yourself how far you have come.
6. Stop and think about the positive things.
Our brains find it much easier to hold onto negative memories and emotions than the positive ones. Help your mind, help your brain, remember the positive memories and emotions. Close your eyes and silently say: “Look how far I’ve come” and then add something positive you have accomplished.
It’s a complicated conversation when you start to talk to your pain. Create a deeper connection with your body and how your mind reacts to your body. What kind of conversation do you have with yourself? Can you redirect the language you use to a more supportive, positive and optimistic tone?
Try utilizing a mantra in your daily like. Use a mantra below to help guide your supportive relationship with yourself, your body and your pain — or think of a new one that inspires you.
I feel you. I hear you. And I accept you.
I am strong. I am resilient. I trust my body.
Is this a mountain or a molehill?
I am safe, I am loved.
Look how far I’ve come.
This article is based on a PD Health@Home Mindfulness Monday event, Mantra for Pain Relief with Parkinson’s Disease. Watch the video now.
For more guided mindfulness and relaxation events and videos, visit Parkinson.org/PDHealth.
2021 was an exciting year for the Parkinson’s Foundation. Thanks to YOU we were able to fund more Parkinson’s disease (PD) research and community programs than ever before!
Here are nine ways we made a positive impact in 2021:
1. Reached 3,000 volunteers
We rely on the energy, skill and passion of our volunteers to advance research toward a cure. This year we reached an impressive 3,000 volunteers who want to help us beat Parkinson’s — from our Parkinson’s Champions to our Moving Day volunteers. Thank you!
This investment includes expanding PD GENEration to the Hispanic and Caribbean communities, and $2 million in funding across 143 community grants that support educational and wellness classes.
This year, we participated in the American Academy of Neurology Annual Meeting, presenting on PDGENEration’s evolution to at-home genetic testing during the COVID-19 pandemic.
In the U.S., cannabis has become more widely available for medical and recreational use. Until this survey, there was insufficient data about the attitudes towards, and experiences with cannabis use among those living with PD.
This year we invested $4.3 million in 29 grants to accelerate cutting-edge Parkinson’s research. Each of these studies has the potential to lead us to the next breakthrough PD therapy or treatment.
Together, with the U.S. Department of Veterans Affairs (VA), we hosted new online events created for veterans with Parkinson’s and care partners. We also published new tools and information for veterans, such as our new FAQ guide for veterans.
This fall, we launched Reach Further, a four-year fundraising initiative that will raise an additional $30 million to accelerate Parkinson’s research and increase access to health care and quality-of-life programs.
9. Brought Local Communities Together at Moving Day
We began with virtual and drive through Moving Day events and ended the year strong with safe in-person events. All 47 events brought our local PD communities together.
