The Ins and Outs of Participating in Parkinson’s Research
The Latin phrase sine qua non translates into ‘without which, there is nothing.’ People with Parkinson’s disease (PD) who participate in research are the sine qua non of the research team. Marilyn Neault is the first-ever person with Parkinson’s who is helping the Parkinson’s Foundation guide its Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s. As a steering committee member, she voices the viewpoints of people with Parkinson’s as they relate to the groundbreaking study.
“I find it both humbling and exciting to be a ‘patient voice,’ expressing my own viewpoint while channeling the viewpoints of others,” Marilyn said. As Marilyn puts it, as a member of the steering committee, she weighs in on multiple large-scale issues on behalf of people living with the disease:
How would we (people with Parkinson’s) react, when our care team asks to deposit each chapter of our personal medical stories into an information library, with our names replaced by numbers?
Can we understand the forms and explanations?
How can the study shine a light on our problems, and predict what would help?
What motivates us to attend visits on schedule?
What would convince us that our participation is valuable?
With fiercely dedicated effort, since 2009 the Parkinson’s Outcomes Project team keeps essential data anonymized from more than 13,000 patients and growing to include two dozen Parkinson’s Foundation Centers of Excellence around the world.
“I have the greatest respect for my fellow steering committee members, who contribute topnotch knowledge, sensitivity and teamwork,” Marilyn said. “Steering committee meetings focus on nurturing the data set, harvesting ripe fruit and feeding the research efforts of scientists, to improve care in areas that make a difference to people with Parkinson’s.”
Marilyn’s dedication is already impacting the steering committee. "People like Marilyn bring expertise from the lived experience of Parkinson's that is invaluable in informing what we do and ensuring that how we do it is respectful of the interests and abilities of the participants,” said Connie Maras, Parkinson’s Outcomes Project principal investigator. “Marilyn's combination of experience as a person with PD and a researcher gives her a unique ability to inform what we do."
As a retired clinician and researcher from the auditory field, Marilyn appreciates the committee’s effectiveness. “The committee’s focus reminds me of the fortune-cookie saying, ‘To be a difference, a difference must make a difference.’”
After attending her first in-person meeting with the steering committee, she felt incredibly grateful that “so many bright, busy people are working hard on a problem that I have. The committee members have adopted our challenge, Parkinson’s, as their own. Research participants with Parkinson’s should feel devoted to holding up our end of the bargain.”
Her Parkinson’s Foundation engagement has also inspired her. “Witnessing my fellow committee members’ dedication to improving the quality of my life makes me take better care of myself, exercising more, eating better and nurturing friendships,” Marilyn said. “The Parkinson’s Foundation’s commitment to using the Parkinson’s Outcomes Project for maximum benefit illustrates why giving to the Foundation, and encouraging others to do so, gives donors the opportunity in this endeavor.”
Marilyn's advice to her fellow PD community is simple: “Participate, prepare for scheduled appointments and provide complete information.”
10 Steps for Caring for a Person with Parkinson’s Dementia
Parkinson’s disease (PD) is known for its associated motor symptoms, such as tremor and slowed movement. People can be surprised to learn that cognitive changes are among common PD non-motor symptoms. Significant cognitive impairment can impact care partners, too. Education and healthy coping strategies ensure everyone’s best care.
The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring care partner strategies to identify and help people with PD dementia, hosted by Joseph Quinn, MD, a neurologist at Parkinson’s Foundation Center of Excellence Oregon Health & Science University and the Portland VA Medical Center. Dr. Quinn, the Parkinson’s Center director for both institutions, focuses his research on cognitive decline prevention and dementia treatment.
What is PD Dementia?
Mild cognitive impairment is very common with Parkinson’s disease. It can impact memory and thinking but doesn’t always affect daily activities. Dementia, however, is when cognitive changes impact daily living. Dementia may or may not occur in people with PD. According to recent research, 30 percent of people with Parkinson’s do not develop dementia as part of the disease progression.
The different types of dementia include:
Alzheimer’s disease – the most common form. Impaired memory is a prevailing feature.
Parkinson’s Disease dementia (PDD) – diagnosed when a person with Parkinson’s experiences cognitive decline after years of motor symptoms. Trouble multitasking and planning complex operations, vision problems and hallucinations are all common.
Lewy body dementia (LBD) – diagnosed when PD motor symptoms and cognitive decline happen around the same time, and progress together.
An allied team approach to Parkinson’s healthcare fosters optimal living; the same is true with PDD and LBD. The following 10 steps, adapted by Dr. Joseph Quinn from an Alzheimer’s Association checklist, can help care partners and families of people with PDD and LBD ensure everyone’s well-being, health and safety.
Parkinson’s Disease Dementia and Lewy Body Dementia Family Checklist
Confirm your diagnosis. Issues with mood, sleep, medications or other medical problems can all look like dementia. Your Parkinson’s doctor should look at all factors before a diagnosis of PDD or LBD is provided.
Find a doctor familiar with PDD and LBD. There is no single test for dementia associated with Parkinson’s. The diagnosis is made on clinical grounds. It’s important to find a specialist or physician familiar with dementia or geriatric medicine. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (473-4636) for a referral.
Get Parkinson’s dementia education, including:
Medical advice – a physician can give diagnosis, outlook and treatment guidance.
Legal advice – Discuss your healthcare and financial preferences with loved ones early on. Find a lawyer who can help formalize these preferences to ensure they are carried out if you are someday unable to voice them.
Communication – the best ways to communicate with a person with PD dementia and deal with difficult behaviors aren’t always intuitive and require patience and acceptance.
Key safety issues – prioritize everyone’s well-being by learning about PD dementia danger risks.
Expert resources – call the Parkinson’s Foundation Helpline 1-800-4PD-INFO (473-4636), or search “cognition” or “dementia” in the PD Library. The Alzheimer’s Association also offers educational material.
Plan a family meeting. The needs of any person with dementia will increase over time. Family members should know how to modify communication and support the primary care partner.
Include the person with dementia in the decision-making process. Personality and judgement are often intact in early dementia stages. It’s important to give the person with dementia the chance to express their preferences, but it’s also important to know when safety concerns should limit decision-making.
Consider and monitor safety issues from the time of diagnosis. Take key precautions:
Change driving privileges before safety becomes an issue. Your doctor can make a driving evaluation referral.
Ensure financial safety. People with dementia are at greater risk of falling victim to scams and fraud.
Limit prescription risks. Confirm medication names and doses with your loved one’s doctor. If the person is in dementia’s early stages and capable, fill their weekly pill box together and monitor use.
Seek out support services. Care partners need someone to talk with and rely on for support and regular breaks.
Provide an ID bracelet. Medical alert identification including a phone number is vital should the person with PD dementia wander or get lost, even briefly.
Focus on the primary care partner’s needs. To take good care of others you must first care for yourself.
Have an emergency care plan to ease transitions should others need to unexpectedly take over care duties.
Attend a support group or talk to someone.
Build in weekly time for yourself.
Get adequate sleep to better cope with daily challenges.
Remember your sense of humor.
Sustain supportive friendships.
Value yourself.
Care Partner Self-Care Steps
Compared to their peers, studies show caregivers to a loved one with dementia face increased health risks. A collaborative Centers for Disease Control and Alzheimer’s Association cognitive health roadmap shows caring for your heart can also benefit your brain.
People with Parkinson’s disease (PD) and their caregivers frequently report cognitive decline as one of their greatest concerns. Commonly described in terms of mild cognitive impairment (PD-MCI) and Parkinson’s disease dementia (PDD), it is estimated that 30 percent of people with Parkinson’s do not develop dementia as part of the disease progression. Research shows that those with PD-MCI are at increased risk for progression to Parkinson’s dementia. Research also shows that the prevalence of dementia increases with a variety of factors, such as age, disease duration and motor severity.
Over the past decade, the International Parkinson and Movement Disorders Society (MDS) created specific criteria to test for PD-related cognitive impairment and dementia, resulting in two types of neuropsychological tests:
Level I – an abbreviated, short and quick series of tests.
Level II – a comprehensive, lengthy series of tests shown to successfully predict the increased risk of developing PD-related dementia that considers the effects of age, sex, years of education, depression and the severity of PD movement symptoms.
The challenge, however, is that it is not always possible to conduct the Level II test because of increased costs, time and participants’ inability to cooperate with such a long assessment. Researchers began to wonder, could the Level I test provide similar predictability?
Recently published in Movement Disorders journal, a study titled, “Risk of Parkinson’s Disease Dementia Related to Level I MDS PD-MCI” (Hoogland et al., 2019), sought to evaluate how well the Level I (abbreviated) test might compare to their Level II (comprehensive) test (Hoogland et al., 2017). A sophisticated side-by-side comparison ensued.
A research team analyzed the data of 1,045 people with PD from eight international studies. Key data used included demographics, motor signs, depression, detailed neuropsychological testing and longitudinal follow-up for conversion to Parkinson’s disease dementia (PDD). The five domains evaluated were attention, executive function, memory, visuospatial function and language.
Results
Having Level I mild cognitive impairment (PD-MCI), increasing age, being male and severity of PD motor signs each independently increased the risk of progression to Parkinson’s disease dementia (PDD).
Level I mild cognitive impairment in PD classification independently contributes to the increased risk of progressing to dementia.
Both Level I and Level II mild cognitive impairment in PD classification had similar discriminative ability with respect to the time to Parkinson’s disease dementia. In other words, Level I was as predictive and reliable as Level II.
The Level II criteria did not show added value compared to Level I.
What Does This Mean?
Called ‘validating an instrument’ in the scientific community, this large, international study w scientifically showed that the Level I test was able to predict the PD-MCI progression to PDD equally well as the Level II test. Being able to make such an accurate prediction quickly, effectively and at reduced cost, early on, has far-reaching implications. Having this predictive level of information in the short-term can help people with PD, caregivers and clinicians improve PD care, understanding and communication.
In the long-term, these findings open new avenues of research to explore, such as the testing the possible positive effects of various lifestyle strategy changes and medications that may slow or halt the progression to dementia.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the Parkinson’s and dementia in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).
Hoogland, J., Boel, J. A., de Bie, R. M. A., Geskus, R. B., Schmand, B. A., Dalrymple-Alford, J. C., . . . Disease, M. D. S. S. G. V. o. M. C. I. i. P. (2017). Mild cognitive impairment as a risk factor for Parkinson's disease dementia. Mov Disord, 32(7), 1056-1065. doi:10.1002/mds.27002
Hoogland, J., Boel, J. A., de Bie, R. M. A., Schmand, B. A., Geskus, R. B., Dalrymple-Alford, J. C., . . . Disease, M. D. S. S. G. V. o. M. C. I. i. P. (2019). Risk of Parkinson's disease dementia related to level I MDS PD-MCI. Mov Disord, 34(3), 430-435. doi:10.1002/mds.27617
Podcast Playlist: 7 Podcast Episodes to Get You Through Winter
With cold temperatures and short days, winter may also coincide with feelings of isolation or loneliness. Know that you are not alone. The winter blues are common and can be triggered by the smallest occurrences. Whether you’re feeling down or simply need an escape, tune into our Substantial Matters: Life and Science of Parkinson’s podcast episodes and tackle the seasonal lows with some of our most popular podcast episodes featuring Parkinson’s disease (PD) experts.
Mental health issues are often a part of a chronic disease such as Parkinson’s, but no one comes into a disease as a blank slate. Therefore, distress in the setting of a disease should not only be ascribed to having the disease but should also take the whole person into account.
In addition to tremor or stiffness, people with PD are often troubled by common non-motor symptoms such as fatigue, pain, disturbed mood or cognition. Visits to PD specialized therapists, exercise, dance and other movement regimes can help alleviate these problems.
While the traditional medicine from a Western perspective typically include drugs, rehabilitation therapies or surgical operations, many Eastern cultures take a holistic approach to treatment through the use of herbs, acupuncture, dietary therapy and other techniques aimed at restoring a healthy balance.
A comprehensive, team approach can help people with PD improve quality of life issues that may not come up during routine doctor visits due to the associated stigma or potential feelings of embarrassment. These issues can include sexual/intimacy matters, blood pressure drops or urinary symptoms and often have easy solutions when addressed.
Receiving a Parkinson’s disease diagnosis, especially at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. This episode offers advice about how to talk to children about the disease, where to turn for resources, and how having a relative with a chronic disease can have positive aspects for a child.
Regular exercise is essential for people with Parkinson’s and has been shown to improve many PD symptoms including balance, mobility, issues with depression and constipation. Additionally, research shows that exercise may have a protective effect on the brain, slowing the degeneration of brain cells.
Addressing cognitive, behavioral, emotional and other neuropsychiatric issues may be challenging for physicians and for those they treat. This episode highlights an integrated cognitive behavioral movement disorder program addressing these challenges.
James Beck, PhD, Parkinson's Foundation Chief Scientific Officer, gives us a high-level overview of what goes on in the brain that leads to a Parkinson’s disease (PD) diagnosis. In this Neuro Talk, Dr. Beck also discusses the key symptoms of PD ― motor and non-motor ― types of Parkinson’s, progression and ongoing research initiatives… all in less than four minutes.
The second most common neurodegenerative disorder after Alzheimer’s disease, Parkinson’s disease (PD) affects approximately one million Americans. Scientists are working toward discoveries to prevent or slow the disease early on, before it affects movement. Breakthrough studies include genetic research that could lead to targeted PD therapy. In the meantime, experts are finding ways to boost the effectiveness of existing medications, and introducing new motor and non-motor symptom treatments nearly every year.
Simply put, medication can help people better manage Parkinson’s symptoms. Before carbidopa/levodopa (brand name SINEMET®) ― long successful in lessening motor symptoms ― was introduced in the 1960s, the lifespan of people with PD was well below that of the general population. After its discovery, people with PD’s life expectancy equaled that of the general population. Studies show treating Parkinson's improves life for those living with PD ― increasing lifespan and reducing symptoms.
An Introduction to PD Medication
Not too long ago, medication options were limited; doctors often postponed treatment to delay medication-associated side effects. Today more than 30 medication options are available. Working with your doctor to try to find the right medicine combination for you is key.
Those with mild PD symptoms may wonder when beginning treatment makes sense. Research shows earlier detection, treatment and expert care helps people with Parkinson’s live well longer.
Many Parkinson’s symptoms are due to lack of dopamine in the brain. Dopaminergic medications include levodopa and dopamine agonists. These either briefly replenish dopamine or mimic its action. Other neurotransmitters are also involved in PD, including acetylcholine, serotonin and norepinephrine. Newer treatments to modulate these can improve different PD symptoms.
Carbidopa/levodopa formulations
Levodopa, the most effective PD treatment, converts to dopamine in the brain. Carbidopa enhances levodopa ― preventing nausea and helping more levodopa get to the brain, so less medication is needed.
Drug manufacturers prepare Levodopa differently ― including a variety of strengths, immediate or controlled-release and liquid form. Some preparations are designed to address specific challenges, such as Parkinson’s-related gastrointestinal (GI) issues, which can interfere with medication absorption.
Immediate and controlled-release carbidopa/levodopa tablets can be used alone or in combination with other medications to improve slowness, stiffness and tremor in Parkinson’s.
Long-acting extended release carbidopa/levodopa, IPX066/Rytary, contains beads designed to dissolve at different rates, giving users longer lasting benefits.
Carbidopa/levodopa enteral suspension – (CLES or DUOPA™) – is delivered into the small intestine improving absorption and reducing “off” times.
Levodopa inhalation powder INBRIJA™ is an add-on drug for “off” periods in people taking carbidopa/levodopa. Administered via inhaler, it bypasses the GI system. It can be used up to five times a day, improving “off” symptoms for people with decreased gut motility while waiting for oral carbidopa/levodopa to take effect.
Dopamine agonists
These medications come in a variety of formulations to supplement or boost the action of levodopa. Compulsive behaviors can be a side effect.
Dopamine agonist rotigotine transdermal patch (NEUPRO®) delivers medication through the skin, directly into the bloodstream.
One of the oldest and most potent on-demand dopamine agonists, apomorphine, is administered via injection, delivering “on” time within about 10 minutes. Still in clinical trials is sublingual apomorphine. Dissolved under the tongue, it can relieve “wearing off” episodes for people with Parkinson’s disease in 15 minutes.
Currently only available in Europe, subcutaneous apomorphine treatment offers a less invasive motor fluctuation treatment option. A small delivery tube placed under the skin is connected to an apomorphine-filled pumping device. It can reduce daily “off” time and possibly dyskinesia by reducing needed levodopa dose. Those with hallucinations and dementia might not be candidates.
COMT inhibitors
COMT (catechol-o-methyl transferase) inhibitors, used with levodopa, ease “wearing off” symptoms and extend “on” time by blocking levodopa breakdown. The three COMT categories include:
MAO-B (monoamine oxidase type B) inhibitors also block dopamine breakdown, and can be used as monotherapy in early Parkinson’s. As PD progresses, it may be used as an add-on to other medications. Forms include:
selegiline
rasagiline
safinamide
Anticholinergics
Anticholinergics reduce tremor by blocking overactivity of acetylcholine, a neurotransmitter regulating movement. Younger patients often better tolerate these treatments due to potential side effects, including dry mouth, constipation and hallucinations. Types include benztropine and trihexyphenidyl HCL.
Amantadine
An early Parkinson’s drug, amantadine was originally developed as an antiviral agent. It was found to also improve PD tremor, rigidity and dyskinesia. Delivery is improved in new, long-acting forms of this drug. GOCOVRI® ER amantadine capsules treat dyskinesia and “off” time in people with PD taking carbidopa/levodopa. This must be taken before bedtime and provides control of dyskinesia upon awakening and throughout the day.
A2A antagonist
A brain circuit group called the basal ganglia play a role in PD symptoms. The basal ganglia have adenosine A2A receptors that are located next to dopamine receptors. Scientists have found activating the dopamine receptor or blocking the adenosine A2A receptor can improve PD symptoms.
Istradefylline, an adenosine A2A receptor antagonist improves motor symptom fluctuations. It received U.S. FDA approval in 2019.
Managing Non-motor Symptoms
Non-motor symptoms are common in Parkinson’s and can be more challenging than motor symptoms. There are many management medications available.
Orthostatic hypotension
About one-third of people living with PD experience a significant blood pressure drop upon standing, known as orthostatic hypotension; certain medications can worsen this. This drop can cause lightheadedness or fainting, and other symptoms.
Droxidopa (NORTHERA®) treats lightheadedness. It should not be taken within five hours of bedtime. Side effects include headache, dizziness, nausea, fatigue and high blood pressure when lying down.
Psychosis
Confusion, hallucinations and delusions can be experienced by up to 70 percent of people living with Parkinson’s. The disease itself or PD medications can cause PD-associated psychosis.
The newest treatment, pimavanserin (NUPLAZID®), does not block dopamine or worsen motor symptoms. It can improve hallucinations, delusions, night-time sleep and daytime sleepiness. Side effects include nausea, confusion and hallucinations. Older options have treatment shortcomings.
Clozapine (Clozaril) requires weekly blood tests, and though quetiapine prescribed off-label hasn’t been shown effective across several randomized Parkinson’s disease clinical trials many Parkinson experts believe it is helpful for hallucinations.
Drooling
The FDA recently approved the botulinum toxins XEOMIN® (incobotulinumtoxinA) and MYOBLOC® (rimabotulinumtoxinB) to treat sialorrhea, or drooling, a common Parkinson’s symptom. MYOBLOC is also be used to treat PD-related sustained cramping, or dystonia.
Rivastigamine
The rivastigmine (Exelon®) patch, a treatment for Alzheimer’s, can improve mild cognitive impairment or dementia in Parkinson’s. Donezepil (Aricept) can also be used.
Sleep disorders
PD-related brain changes can cause sleep challenges. People with rapid eye movement sleep behavior disorder (RBD) do not have normal muscle relaxation while dreaming, causing them to act out dreams during REM sleep. Clonazepam and melatonin can be used to improve symptoms.
Surgical Interventions
This multi-procedure surgery inserts electrodes into a motor-function targeted brain area; an implanted impulse generator battery then stimulates this area with electrical impulse to improve “on” time. Users are given a DBS control device. Manufactures Abbott, Boston Scientific and Medtronic have all made recent improvements to these devices.
More Resources
Check out more Parkinson’s Foundation resources about medication now:
Parkinson’s disease (PD) results from the death and deterioration of dopamine-producing neurons (brain cells) in an area of the brain called the substantia nigra. What if those cells could be reprogrammed to function in a healthy way? That is the promise of a stem cell therapy that is called induced pluripotent stem cells (iPSCs). If this extraordinary reprogramming capability could be harnessed ― and if the results were sustainable ― that would be a scientific game changer for treating neurological diseases, including the symptoms of Parkinson’s. To be clear, we are not there yet, but we might be one step closer.
A recently published study in the New England Journal of Medicine titled “Personalized iPSC-Derived Dopamine Progenitor Cells for Parkinson’s Disease” (Schweitzer et al., 2020), tested whether a person with Parkinson’s can have a skin cell removed and transplanted into his brain in order to produce dopamine. That person was a 69-year-old man with a 10-year history of slowly, progressive PD. This was a highly complicated, multi-step procedure, involving surgically transplanting four million stem cells into both sides of his brain. It should be noted that the patient paid two million dollars to fund this procedure.
Prior to implantation, the study participant reported poor control of his symptoms, with three hours of “off” time per day, which included worsening tremor, posture and fine motor control; he reported no dyskinesias. Neurologic examinations were performed and PD–specific measures were taken at one, three, six, nine and 12 months after each implantation and at six-month intervals thereafter. The patient first underwent the surgical implantation procedure in the left side of his brain, followed by the right side, six months later.
Results
At 24 months after the first (left) implantation and 18 months after the second (right) implantation, the patient reported no adverse events or decline in function.
Imaging showed that the transplanted cells successfully survived and were functioning.
Slight motor improvements (6%) were achieved based upon the Movement Disorder Society Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) part III, including the patient’s walking stride, and his ability to bike ride and swim.
The patient reported an improvement in quality of life, immediately after the surgery was performed. This kind of response suggests that he experienced a placebo effect.
What Does It Mean?
It is encouraging that 24 months after the surgical procedure, the transplanted cells survived and appeared to be functioning. However, survival of these transplanted cells was expected since they were derived from the patient’s own body making transplant rejection unlikely. In terms of the modest improvements in the patient’s motor skills, that too, is encouraging. He was able to reduce his levodopa intake from 12 pills to 11 per day. However, since the patient reported an immediate improvement in his quality of his life, this suggests that he experienced a placebo effect ― as instant improvements are not biologically possible.
Again, this study was administered to one person. Generally, clinical studies are administered in larger sample sizes and can establish a baseline to provide more accurate data and results with a smaller margin of error. At best, scientists believe stem cell therapy will only be a symptomatic treatment, helping in the same ways as levodopa or deep brain stimulation.
The bottom line is that while the one patient may experience an improvement in symptoms, this is not a cure for Parkinson’s nor will this procedure treat non-motor symptoms or help with walking, talking or thinking. In the future, a larger-scale study with a larger population size is the only way we will be able to better understand if a brain cell transplant can truly be a viable treatment option.
A note of caution: while this study was a brain cell transplant, its findings can mislead people with Parkinson’s to seek stem cell treatments. Beware of stem cell tourism. Stem cell clinics are springing up across the globe, taking advantage of desperate patients. Often advertising their services directly to consumers through the Internet, they make extravagant, unfounded claims about the benefits, downplay the risks, and charge exorbitant fees. Stem cell transplants for Parkinson’s disease (and other neurological conditions) is in research stage, is not a treatment, and one should never pay for a clinical trial research. What these so-called stem cell clinics are offering, is false hope for real money.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Stem Cells 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.
Schweitzer, J. S., Song, B., Herrington, T. M., Park, T. Y., Lee, N., Ko, S., . . . Kim, K. S. (2020). Personalized iPSC-Derived Dopamine Progenitor Cells for Parkinson's Disease. N Engl J Med, 382(20), 1926-1932. doi:10.1056/NEJMoa1915872
10 Tips for Improving Dental Health with Parkinson’s
Taking care of your oral health is especially important for people with Parkinson’s disease (PD). Parkinson’s can impact the health of the mouth, teeth and jaw and make dental care challenging.
June is National Oral Health Month. Read on to learn about common dental problems in people with PD and tips for maintaining oral health.
Dental Risks Related to PD
Oral health problems arise directly and indirectly from the progression of Parkinson’s. PD-related dental challenges may include:
Too much saliva.Excessive saliva can lead to a fungal infection at the corners of the mouth.
Too little saliva. Also known as dry mouth, too little saliva can increase the risk of cavities.
Cavities. A cavity is a breeding ground for bacteria that can easily infiltrate the blood stream and harm other parts of the body.
Infected teeth and gums. Your mouth can harbor bacteria that may infect devices, such as deep brain stimulation electrodes, prosthetic hips and knees, vascular stents and grafts.
Altered face and tongue muscle function. These conditions may affect speech and chewing.
Swallowing problems. Poorly chewed food can increase the risk of choking and aspiration.
If you take a medicine with a warning to tell your doctor about infections, make sure to report cavities, loose teeth or inflamed gums. Some immune-suppressing medications can significantly reduce white blood cells, which increases the risk for bacteria-causing dental diseases to spread elsewhere.
Barriers to Dental Health in PD
Symptoms of PD may hinder your ability to maintain proper oral hygiene, and can potentially worsen dental problems.
Movement Symptoms
Nearly half of all people with PD have difficulty with their daily oral hygiene regimen, due to movement symptoms such as rigidity and tremor. These symptoms also make going to the dentist more difficult and uncomfortable, as weakened swallowing ability can increase the risk of choking during treatment.
Additionally, people with PD who have been on medications like levodopa for several years may begin to develop involuntary movements, which can affect the jaw and cause cracked teeth and teeth grinding. This may create problems during dental exams and at home.
Non-movement Symptoms
Non-movement symptoms of Parkinson’s, such as apathy, depression, and forgetfulness, may lead a person with PD to pay less attention to their daily dental health. People who experience cognitive changes also may be more likely to miss dental appointments and less likely to report dental pain to their care partners or dentist, leaving issues unaddressed for too long.
Other behavior changes can affect nutrition. People with PD require greater caloric intake than those without PD, but some people experience decreased appetite. Combined with poor dental hygiene, this often leads to a tendency to avoid nutrient-rich foods, like vegetables, that require the ability to chew well. Some people may also develop a “sweet tooth,” which may put them at greater risk for cavities.
10 Tips for Improving Dental Health
Follow these tips to keep your oral health in check while managing PD:
Stay hydrated. Always eat and drink in an upright position, taking small bites and sips.
Brush after every meal for two minutes. If it is not possible to brush after a meal, rinsing the mouth with water will help.
Remove dentures after each meal, brush and rinse them. Brush or clean dentures in a solution at night.
Use a toothbrush with a large-handled grip and soft bristles. If you prefer an electric toothbrush, be sure it is an oscillating, rotating power toothbrush.
Do not use products that include alcohol, as they make dry mouth conditions worse. Your dentist can recommend special products like toothpaste and gels that can help with dry mouth and other oral health problems.
Floss. If movement symptoms make flossing difficult, consider using a water pick instead.
Avoid using mouthwash. Mouthwashes are typically discouraged for people with PD because of the risk of choking. Ask your doctor or dentist if it is safe for you to use mouthwash.
Notify your dental office of your PD symptoms. This will help the dentist and the staff provide better treatment.
Schedule dentist appointments wisely. Plan short dental appointments for the time of day your symptoms are most effectively controlled.
Have your dental health providers work collaboratively with your other healthcare providers to improve oral health-based quality of life.
If you have concerns about your oral health or you are experiencing dental challenges that may be related to PD, contact your doctor or dentist. Your care team can help you find strategies to take care of your dental health.
To learn more about managing swallowing issues and oral care with Parkinson’s disease, listen to our podcast.
New Study Examines Impulse Control, REM Sleep and Dopamine
Impulse control behaviors (ICBs) affect between 14% and 40% of people with Parkinson’s disease (PD). Examples of ICB’s include compulsive gambling or shopping, hoarding and hyper sexuality. ICBs become impulse control disorders (ICD) when they impair one’s ability to function at work, home and navigate day-to-day life. Only 2% of people have ICBs in the general population.
Why the dramatic disparity? It has to do with the gold standard medication for PD: Dopamine replacement therapy, such as L-dopa, as well as dopamine agonists, such as Requip (ropinirole), Mirapex (pramipexole) and Neupro (rotigotine), are all strongly linked to experiencing ICBs. This is because dopamine, in addition to relaying messages that plan and control body movement, also plays a primary role in the reward pathway in our brains ― in other words, it makes us feel good, even elated.
Since ICBs are commonly experienced as highly pleasurable ― and even anxiety-relieving ― people with ICBs may go to great lengths to hide their compulsions from friends, family and their healthcare professionals. Unfortunately, all too often, this concealment results in detrimental personal and financial consequences. There is a need to better understand the Parkinson’s-ICB connection.
A large, three-year, prospective, multi-center study published in Neurology titled, “Impulse control disorders in Parkinson disease and RBD: A longitudinal study of severity” (Baig et al., 2019) sought to address four key questions:
What is the distribution and severity of PD-ICBs?
How does this vary over time?
How common are Parkinson’s ICBs?
Which clinical factors are associated with PD-ICBs?
In this study, otherwise healthy people with ICBs were compared with those who had PD and a REM sleep behavior disorder (RBD). Why was REM chosen? Previous studies have suggested that the presence of RBDs may infer a higher risk of developing PD-ICD. However, it is not known whether RBD itself, or whether a particular RBD-PD subtype, increases that risk.
There were 932 PD participants in the study. Due to factors such as withdrawal and deaths, 531 completed the study. Those with RBD (and the control arm) were clinically screened for ICBs using the Questionnaire for Impulsivity in Parkinson’s Disease. Those who were ICB-positive were then invited to participate in a semi-structured interview, that was repeated every 18 months. Clinical assessments were performed with a variety of tools to assess a broad range of motor and non-motor symptoms at each visit. Severity of the ICB was assessed with the Parkinson’s Impulse Control Scale, and ICB prevalence and associations were mathematically calculated.
Results
Impulse control behaviors were common in the early stages of PD (19.1% prevalence).
There were no increased risks for having ICBs associated age, sex, cognition, sleep disorders or marital status.
The incidence of depression was higher among participants with PD with ICD than those without.
There was significant variation in the severity (both the impact and intensity) of PD-ICB – fluctuating within a relatively short period of time.
Internal factors (mood and coping mechanisms) impacted the severity of PD-related Impulse control behaviors.
External factors (major life events and social support) also impacted the severity of the PD-ICBs.
What Does This Mean?
This study found that ICBs are common in the early stages of PD, with a larger proportion of this population having symptoms of ICD, but not enough for the behavior to be designated a disorder. While scientists have known for over a decade that dopamine-related drugs could be linked to ICDs in some people with PD, it wasn’t until 2004 that people living with Parkinson’s began to learn that ICDs could be a rare side effect of dopamine agonists.
Thus, dopamine dosage changes may need to be considered, when ICB or ICD behaviors appear to be present. Lastly, people with PD, and their care partners, need to be aware that internal (mood and coping mechanisms) and external factors (major life events and social support) were found to be contributing causes for progressing from an impulse control behavior problem to a disorder.
Learn More
Learn more about Parkinson’s and impulse control issues in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
Baig, F., Kelly, M. J., Lawton, M. A., Ruffmann, C., Rolinski, M., Klein, J. C., . . . Hu, M. T. (2019). Impulse control disorders in Parkinson disease and RBD: A longitudinal study of severity. Neurology, 93(7), e675-e687. doi:10.1212/WNL.0000000000007942
Barone, D. A., & Henchcliffe, C. (2018). Rapid eye movement sleep behavior disorder and the link to alpha-synucleinopathies. Clin Neurophysiol, 129(8), 1551-1564. doi:10.1016/j.clinph.2018.05.003
Fantini, M. L., Figorilli, M., Arnulf, I., Zibetti, M., Pereira, B., Beudin, P., . . . Durif, F. (2018). Sleep and REM sleep behaviour disorder in Parkinson's disease with impulse control disorder. J Neurol Neurosurg Psychiatry, 89(3), 305-310. doi:10.1136/jnnp-2017-316576
Figorilli, M., Congiu, P., Lecca, R., Gioi, G., Frau, R., & Puligheddu, M. (2018). Sleep in Parkinson's Disease with Impulse Control Disorder. Curr Neurol Neurosci Rep, 18(10), 68. doi:10.1007/s11910-018-0875-x
Newly Diagnosed: Living Your Best Life with Parkinson’s
A Parkinson’s disease (PD) diagnosis is life-changing, but it doesn’t have to keep you from living your best life. If you are newly diagnosed, you are not alone. The Parkinson’s Foundation is here to assist and empower you at every stage to ensure you continue living well.
This article is based on a Parkinson’s Foundation Expert Briefings webinar “Newly Diagnosed: Living Your Best Life with Parkinson’s" by Jenna Iseringhausen BSN, RN, Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence.
How Parkinson’s is Diagnosed
There is no specific test for Parkinson’s disease. Doctors look at a person’s symptoms and history, and may use various tests to make a diagnosis. A person must have two of these main movement or motor symptoms to be considered for a PD diagnosis:
Just as each person with PD is unique, so is each person’s Parkinson’s disease experience. Possible non-movement symptoms (some of which can occur years before a diagnosis) can include:
For some, a PD diagnosis is a relief ― an explanation for ongoing changes or symptoms. For others, it can take an emotional toll, both on the person with Parkinson’s and their loved ones.
Take time to acknowledge your feelings and to address any mood changes. Parkinson’s disease itself can affect you physically and can cause depression, anxiety or apathy. Take control of the things you can. Enlist the help of loved ones. Minimizing worry and building support can boost your well-being.
When you’re ready, the Parkinson’s Foundation recommends 5 steps you can take throughout your journey to support optimal living.
1. Set and Prioritize Goals
Start small. Take time to think about how you want to live. Consider any obstacles standing in the way. Set specific, achievable goals to start working toward meaningful change in your life. Enlist loved ones or friends to help you.
As you determine and master smaller, individual goals, reward yourself for your commitment. Continue to build off of your achievements.
2. Talk About It
Communication is key to well-being for people living with Parkinson’s and their care partners. Finding someone you can each to talk to about how you’re feeling is vital. It can also be the first step in building community and outside support.
Family and friends, community or spiritual groups, and even people who share a hobby can be potential sources of assistance and support. One way the Parkinson’s Foundation community connects is through online PD Conversations discussion groups. These include the Newly Diagnosed and Caregiving forums.
3. Create Healthy Habits
Establish healthy habits early, so it becomes part of your daily routine. Healthy eating that incorporates good nutrition can improve medication delivery and ease symptoms. Research shows a Mediterranean diet (emphasizing plant-based staples and healthy fats, while minimizing meat) can improve health.
Create a regular sleep schedule and bedtime routine to ensure restful sleep, which boosts mood. Try to maintain dental hygiene. Parkinson’s can affect mouth, teeth and jaw health. Brush teeth twice a day, floss, rinse frequently and increase hydration.
4. Be Active
Physical activity can improve many PD symptoms and may also offer neuroprotective benefits. Data shows exercise is important to well-being in PD.
Embrace vigorous exercise early on to improve mood, movement, balance and walking speed. Exercise can also benefit sleep and relieve constipation. Choose an activity you love that includes stretching, aerobic and strength activities.
5. Find an Expert
Seek a neurologist, a doctor who works with brain and central nervous system conditions such as Parkinson’s. If possible, find a movement disorder specialist ― a neurologist with additional training to treat people with Parkinson’s at every stage.
These experts can often recommend other PD specialists ― nurses, social workers, occupational or physical therapists and speech-language pathologists. A comprehensive care team approach to treatment ensures a high quality of life. Also known as palliative care, this team building begins at diagnosis, enlisting specialists ― as needed ― who communicate with each other to treat Parkinson’s changing physical, emotional, social or spiritual needs.
Get Started
Living well with PD is possible. Incorporating these five steps, in any order, will empower you to live your best life. Relying on medically diverse allied care specialists to help manage your PD symptoms will ensure a high quality of life.
The Parkinson’s Foundation is here for you. Visit the New to Parkinson’s section of our website to learn more and order the Newly Diagnosed kit or contact our free Helpline at 1-800-4PD-INFO (1-800-473-4636).
