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).
JFK Johnson Rehabilitation Institute’s Parkinson’s Choir or ParkinSINGS in Edison, NJ
Studies show that singing can help maintain strength in the muscles involved in speech and voice in people with Parkinson’s disease. Additionally, scientists have found that singing may reduce anxiety and improve overall quality of life. Through a Parkinson’s Foundation community grant, Hackensack Meridian JFK Johnson Rehabilitation Institute provided the Parkinson’s community with a fun way to exercise voice, speech and swallowing muscles ― through singing!
In August 2019, ParkinSINGS, a choir for people with Parkinson’s disease and Parkinson-Plus syndromes, was established. Led by choir director and speech language pathologist, Alyson Chananie, and musical director/pianist, Frank Saverino, the group exercised their speech and voice mechanisms during weekly rehearsals. On average, 12 members with Parkinson’s participated in vocal warmups, learned new songs and rehearsed musical pieces from a variety of genres, artists and decades as well as performed in a variety of venues.
The group sang for an audience of therapists who work with people with Parkinson’s disease at an educational symposium and performed in the opening ceremony for New Jersey’s Moving Day in September 2019. They performed an 11-song set during a holiday concert with the New Jersey Symphony Orchestra and recorded an at-home performance of “Somewhere Over the Rainbow” to share with healthcare workers on the front lines during the COVID-19 pandemic.
Meet Donna
I was diagnosed with Parkinson’s in 2013. In 2018 I started experiencing swallowing issues, as well as increased cognitive issues and my doctor suggested I make an appointment with a speech therapist. A good friend suggested I talk to her daughter who is a speech therapist at JFK Johnson Rehabilitation Institute, which specializes in Parkinson’s. My conversation with Aly, and the information she provided, helped me set a course of action going forward…. Aly told me about a singing program she wanted me to join. I told her that I couldn’t sing at all, but she asked me to at least come to the first meeting. I’m glad I did. Being part of the ParkinSINGS choir has been an incredible experience.
Not only does it help keep my voice and vocal chords ‘in shape,’ it has also helped build up my confidence. When asked if I would consider doing a solo at our winter concert, I said no way, but then I thought about two other members who did solos at the 2019 Moving Day Event, and it was their courage that inspired me to take that risk. Music is soothing, therapeutic and relaxing. There’s no better way to forget about our limitations due to Parkinson’s, even if it’s just for a little while, than being part of ParkinSINGS ― it’s a support group meeting with a fun twist.
Researchand Beyond
In August, the program began collecting information about communication, level of happiness, how much PD affects quality of life, swallowing capabilities and voice. Voice measures were also obtained including maximum decibel level, maximum phonation time, fundamental frequency and clinician’s observation of voice, speech, fluency and prosody.
Next, we will administer our final quality of life and/or obtain final objective voice and speech data. Our hope that we find a positive correlation between participating in this singing group and the areas we previously assessed. Through personal comments and anecdotes, we can say with confidence that quality of life has improved in many participants.
Participating in live and recorded performances for the public, the members of ParkinSINGS were not only moving muscles, using cognitive abilities and contributing to their own positive quality of life, but also bringing joy to and increasing awareness in their family, friends, and care partners, local healthcare workers serving the Parkinson’s community, and audience members living with Parkinson’s. It is our wish that we may continue to provide these services to our patients free of charge. We hope to reach more patients by communicating our mission and advertising to local neurologists, physiatrists, therapists, and Parkinson’s support groups.
The George Foundation’s Singing with Parkinson’s in Roswell, GA
Singing with Parkinson’s, Atlanta’s first therapeutic choir for individuals with Parkinson’s disease (PD) and similar diagnoses, has been providing Neurologic Music Therapy services to the Parkinson’s community of Atlanta since 2018.
This free program incorporates evidence-based therapeutic interventions designed to address vocal and oral-motor symptoms of PD, while also providing musical community for participants and their caregivers. Since its foundation, the choir has grown to include almost 20 regular members who participate in weekly rehearsals and perform in solo concerts and at community events.
Among these members is Brent, who was diagnosed with Parkinson’s in 1997. A former elementary school teacher and pianist, Brent had to give up his work and his musical outlet as a result of his motor and speech symptoms. In the spring of 2019, Brent discovered Singing with Parkinson’s when the choir performed at his PD support group in Duluth, GA. “At the end of the performance there was a delightful invitation to join the choir,” recounts Brent, “Which immediately I did!”
Since that day, Brent and his wife have been active choir members, meeting for weekly rehearsals with other singers with PD and their caregivers and joining the choir in a variety of community performances. Both note the positive impact that music therapy has had on Brent’s speech, as well as the emotional benefits that a musical community provides. “Working with the vocalizations has been such an asset to provide extra support to my speech exercises,” says Brent. “Getting to know new people [who] . . . share the same challenges has been very rewarding. It has definitely been a great extra benefit to add new friends, to socialize outside the rehearsal and add fun to our daily routine.”
The program is designed and directed by board-certified music therapists with additional training and certification in Neurologic Music Therapy. Data taken after every rehearsal has documented measurable progress in participants’ oral motor functioning, including improvements in breath support, articulation and speech pacing. The choir continues to build its membership and engage in community outreach via local performances and presentations, and music therapists with the George Center for Music Therapy continue to advocate for access to Neurologic Music Therapy at local and regional events. This free program is made possible through the generous support of the Parkinson’s Foundation.
Singing with Parkinson’s meets every Tuesday and is currently holding virtual rehearsals for the duration of the coronavirus pandemic. For more information about Neurologic Music Therapy and/or how to join this free choral program, contact Claire Morison, LPMT, MT-BC, at claire@thegeorgecenter.com or 678-701-1203 ext.4.
Today I don’t hear the voices of hope and healing come tumbling out of the upstairs choir room. The sweet sounds of “Hallelujah” usually resonate through the hallways of HeartSprings Community Healing Center with choir director Michelle Gelinske accompanying with grace and power, voices in unison; one purpose, one heart. During the COVID-19 pandemic our task became to get the voices online. Can we really do a choir online?
In a short amount of time and with a young incredible assistant we quickly adapted to an online music room. We had to change our website so we could take online fees; pay for Zoom business so we could host hour-long meetings and add a new microphone so people could hear Michelle sing and speak along with the choir. It was a mad dash, but we did it! We were able to bring not only the choir, but art and other exercise programs to our Parkinson’s community that were waiting for their “medicine” of moving their legs, hands, and voices! Plus, they just wanted to see each other and say “Hi, are you OK?”
Through the years the Tremble Clef Choir has touched many lives of those living with Parkinson’s. Not only has it affected participants, but their families and the Fargo-Moorhead community. Practicing techniques such as breath control and vocal projection, hesitant voices are strengthened. Improvements are also noticeable socially and emotionally. With weekly practices and many performances, the choir has created a community in which to come together, share, perform, grieve and heal.
The Tremble Clef Choir began meeting in the fall of 2010 at HeartSprings in Fargo, ND, with Michelle Gilenske as volunteer director. The choir began as five members and their partners has now blossomed to 25. Michelle directed the choir as a volunteer for five years before receiving compensation for her efforts. This speaks volumes about her character and generosity.
The choir’s first public performance took place at the Plain’s Art Museum in 2014 and has since become an annual event taking place in December. In 2015, the choir began receiving invitations to numerous locations to perform. The Tremble Clef Choir often travels to local assisted living facilities and retirement homes. These performances have brought tremendous joy to residents, family and friends. With a Parkinson’s Foundation community grant and under the direction of Michelle, the Tremble Clef Choir has continued to grow.
In 2017, Michelle was honored at the 44th Annual Woman of the Year awards by the YWCA of Cass Clay in the category of Health and Wellness for her continued work and dedication. Her love for music and helping others is inspirational. Her kindness, knowledge and ability to positively affect others leaves a lasting impact. We are extremely proud of her accomplishments and grateful for her outstanding work.
The impact in which the choir has had on the lives of those involved and effected is truly profound. This can be seen in the relationships formed, the enthusiasm created and the outpouring of support. Earlier, a choir member had passed away and his sister wrote the following letter: “I want all of you to know how much he loved each and every one of you, and how much joy his singing with you brought him. I also want to thank you all for the wonderful tribute you shared at his funeral. Your voices raised in song brought much comfort to us all.”
That is what community, singing , kindness and compassion does. The choir has been a joy and a blessing. Join us online at heartspringscenter.org!
