The coronavirus pandemic quickly changed our day to day lives and has given rise to an increase in healthcare appointments being administered through telemedicine (the distribution of health-related services and information using technology).
“There are advantages to telemedicine, and right now considering the COVID-19 pandemic, telemedicine is an excellent way to connect to your physician and avoid the spread of the virus social distancing.”
Telemedicine appointments can be completed using a laptop, computer, tablet or phone with a camera, often through an app or program using an internet connection. Telemedicine appointment benefits include easy access to healthcare professionals, and no transportation hassle or waiting rooms. Below are nine tips to help you prepare for your next telemedicine appointment:
Preparing for your telemedicine appointment:
Get ready. Prepare as you would for an in-person visit. Make sure you have your medication list handy and write your list of questions you would like to ask.
Medication check. Check to see if you have enough pills at home or if you need refills. Remember, try to have a 90-day supply on-hand during quarantine.
Communication program check. Download the technology/application your physician is using for the call ahead of time. You will most likely use a program such as, Epic, Zoom, FaceTime, Skype or others. Your provider will let you know which program to download.
Device preparation. Make sure you set up in a location with a good internet connection. Charge your device before the appointment starts or try to keep it plugged in.
Be ready to move. Try to position yourself near a space where you can perform typical tasks your doctor or specialist may ask you to complete. For instance, a movement disorders specialist or physical therapist may ask you to walk. It may be helpful to have a family member ready to help during the appointment.
Final touches. Have a paper and pen nearby, along with any items your healthcare specialist may have asked you to bring to your appointment (for instance, a thermometer).
Video Tips:
Limit any clutter between you and the camera
Avoid backlighting (like windows behind you)
Limit background noise that may come from a TV, radio, pets or affect your device’s microphone (a fan overhead, loud AC unit, open window)
Speak in your normal voice
Do not place papers or objects near the microphone. If you are not using your cell phone, place it away from your device.
Ask your questions. Take notes and add them to your medical file.
Provide updates. Your pharmacy, insurance or contact information may have changed. Let the doctor’s office know before your appointment ends.
Are my Parkinson’s-related telemedicine appointments covered under Medicare?
The Centers for Medicare and Medicaid Services (CMS) provides coverage for various telehealth appointments. In response to the coronavirus pandemic, CMS expanded coverage to more hospitals', physicians’ and other healthcare organizations’ Medicare coverage of telehealth visits ― including emergency department visits, physical therapy and occupational therapy appointments. View the full list on the CMS.gov here.
PD Health @ Home features new weekly Parkinson’s disease (PD) wellness and education virtual events designed for the PD community. We have new, exciting upcoming events scheduled that help promote mindfulness, highlight COVID-19 issues, exercise classes and more. Remember to join us and catch up on previous virtual events now.
These are the top 10 most popular PD Health @ Home episodes YOU found to be the most helpful:
1. Emotional Stress, Mindfulness Meditation and Mindful Movement
In this Mindfulness Monday, we introduce you to mindfulness and discuss the role emotional stress plays on the brain. Event recorded April 6.
3. Expert Briefing: PD and Medication: What’s New?
In this Expert Briefings Tuesday event, Fernando Pagan, MD, highlights the latest PD medications and what is next in Parkinson’s treatments. Event recorded April 14.
In this Expert Briefing Tuesday, we highlighted the changes that can occur in thinking and memory for people with Parkinson’s and their care partners and the steps you can take to reduce the effects these symptoms might have. Event recorded April 7.
5. Ask the Expert: How Can I Benefit from Telemedicine?
In this Wellness Wednesday, Roy Alcalay, MD, explains what to expect from a telehealth appointment, the benefits of telemedicine and provides helpful tips for your next appointment.
In this Wellness Wednesday, Dr. Okun reviews hospital safety for people with Parkinson’s who may be experiencing COVID-19 symptoms and answers questions from our Facebook community. Event recorded April 8.
8. Overcome Exercise Apathy with Live Fitness Demos
In this Take Time Thursday, we help you break some exercise apathy habits while at home and show you some exercises that get you out of your chair. Event recorded April 23.
In this Fitness Friday, Physical Therapist Joellyn Fox leads you through our PD-tailored at-home fitness class. This session will help you improve your posture through seated stretching and core exercises. Event released April 10.
In this Fitness Friday, Joellyn Fox will guide you through exercises that can help improve arm strength, highlighting correct form, chair and standing exercises. Event released April 24.
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:
Aware in Care Ambassadors played a key role in helping the Parkinson’s Foundation distribute 100,000 Aware in Care kits. We recently interviewed Ambassadors Patsy and David Dalton from Columbia, MO, how they help us spread awareness and advocate for people with Parkinson’s disease (PD) when hospitalized using the free Aware in Care kit. Together, they educate support groups, health professionals, Centers of Excellence, care partners and people with Parkinson’s.
Q. How do you help people with Parkinson’s prepare for the possibility of hospitalization?
A. Twenty-six years ago, David was diagnosed with Parkinson’s and we decided to start a support group. Now we facilitate two groups that meet monthly, one with nearly 100 members. We have learned that we all need each other's support. Preparing for the scary prospect of a hospitalization was greatly assisted nine years ago when the Aware in Care kit was first introduced. Now, as Ambassadors, we always re-introduce the kit to support group members to prepare them how to talk to hospital staff about their vital need to have their PD medications on time, every time.
Q. What are “Aware in Care Moments?”
A. Since we believe that repetition is key to bringing home the Aware in Care message, we share an "Aware in Care Moment" at each monthly meeting, which addresses key points. Our Aware in Care expert educators address different topics each month in our support group. We want to make our meetings entertaining, while still educational!
Q. What advice would you give someone who is hesitant to share the kit with hospital staff?
A. It's a good idea to broach any topic with a smile and an air of cooperation. Then just tell it like it is: "This hospital stay's success is going to depend on me getting my Parkinson's meds on time, every time. Research shows that things can go wrong if I don't get my medication on my prescribed schedule. We all know that Parkinson's is a different disease for every person, and so is our medical treatment." Just keep thinking to yourself, "This is my life at stake, this staff is here to ensure my well-being and I'm going to educate them on my care and the care of their future patients living with Parkinson’s!" Be strong, be bold and speak up.
Q. We know that you use the “Health” app in your phone to complement the information provided by your kit. Can you tell us how?
A.Since we never know when an emergency can strike, it's a huge help to have Aware in Care information on your phone. It's a great backup plan is you are headed to the hospital without your kit. If you're unconscious when emergency responders are on site, they're trained to check your smart phone to find this information. It's kind of like having a medical alert bracelet, except it's on your phone. A quick tip: When you have a medication change, be sure to update your medication form AND the meds section of your smart phone health app!
Q. What component of the Aware in Care kit do you find most helpful?
A.We love the Hospital Action Plan because it completely explains the Aware in Care program and the kit. It explains the six steps to optimum care, a checklist for a planned hospital stay and for an emergency situation. Special considerations are also included in the plan, along with tips on how we can make hospitals safer for people with PD. The back cover also has a great summary of medications that may be contraindicated in PD.
Special Note on hospitalization with PD and Coronavirus
Medical Cannabis Convening Findings: Top Takeaways and Guidance
Many people with Parkinson’s disease (PD) have looked to medical cannabis (marijuana) to provide some relief to their range of non-motor and motor symptoms. However, little is known about the effects of medical cannabis for PD symptoms or their potential side effects and safety issues. To address this, the Parkinson’s Foundation published a statement to help guide the PD community in making informed decisions about using cannabis for Parkinson’s.
The statement is based on the input from experts who attended the Parkinson’s Foundation first-ever medical marijuana convening in March 2019. These 46 experts included neurologists, scientists, a pharmacist, a PD nurse, non-profit organizations, people with Parkinson’s and Foundation staff.
The primary goal of the statement is to provide guidance to people with Parkinson’s and their physicians for the safe use of medical cannabis for PD. The secondary goal is to establish cannabis and PD topics that should be addressed through rigorous research studies.
Regardless of whether a medical cannabis product is approved for Parkinson’s in the future, this statement will help to inform that it is used in the safest, most effective way possible.
Top Takeaways on the Use of Medical Cannabis for PD
Our experts urge caution. There are adverse effects, toxicity issues and drug to drug interactions, and we do not fully know what this means for people with PD who are taking PD medications.
We cannot endorse the use of medical cannabis for PD symptoms or disease progression because we need more data. However, because we realize that people with PD are interested in cannabis, we feel it is necessary to provide guidance for general safety as well as working with dispensaries.
We need better studies. Some studies have suggested cannabis may be beneficial for non-motor symptoms such as sleep disturbances, pain, anxiety and gastrointestinal issues. However, these studies are generally small and are not conducted the most reliable kind of research studies.
Guidance for Using Cannabis for Parkinson’s
Without any clear data supporting the use of cannabinoid products in PD, while the Parkinson’s Foundation does not endorse their use in PD, we recognize that people may decide to try cannabinoid products for certain symptoms. If you decide to try cannabinoid products:
What is CBD?
Cannabidiol (CBD) and hemp products (defined as having less than 0.3% tetrahydrocannabinol - THC) are legally available in all 50 states.
Discuss the use of cannabinoid products with your healthcare providers. These products may interact with other medications or cause side effects that could influence your PD care.
Treat cannabis products as you would any new medication. Always start at a low dose and go up slowly. CBD-only products may also be less likely to cause side effects and could be considered before trying products also containing THC.
For pain in one specific area, consider creams or patches to reduce general side effects.
Be cautious when ingesting edible products, as they can have delayed side effects and increased toxicity.
Consider staying with the same dispensary. Since cannabis products are not regulated, do not assume the “dose” on a label from one dispensary will have the same effects as one obtained from a different dispensary.
Be aware of potential side effects, particularly dizziness, problems with balance, worsening motivation, dry mouth and impaired thinking and memory.
Parkinson’s Foundation Drives Research with New Patient Engagement Framework
The Parkinson’s Foundation makes research more efficient and effective by involving those living with Parkinson’s disease (PD) in the research process. People living with PD are experts because they know this disease, its symptoms and how it impacts their lives. The Parkinson’s Foundation Research Advocacy Program (formerly referred to as Patient Advocates in Research) trains research advocates ― people with Parkinson’s and care partners ― to provide their expertise to researchers in academia, government and pharmaceutical companies. Historically, there has not been a universal process in place to help researchers engage research advocates in their work. The Parkinson’s Foundation is changing that.
What is patient engagement?Patient engagement is when people with Parkinson’s and care partners work alongside scientists to design and run research studies. Patient engagement speeds up research, making it more efficient and effective.
In May 2020, the Parkinson’s Foundation published an article in the scientific journal Health Expectations outlining a patient engagement framework developed from the Foundation’s 12 years of experience working with research advocates. The framework is designed to help researchers integrate and measure patient engagement in their work, ultimately leading to better studies.
“Over the last decade the Parkinson’s Foundation has learned that there is critical information pharmaceutical companies and academia are missing by not involving people living with Parkinson’s in the research process,” said Megan Feeney, author and Parkinson’s Foundation Senior Manager of Community Engagement. “There are also many researchers open to making patient engagement a priority, but we need evidence to promote this practice.”
This framework provides a clear outline for researchers to follow. “The goal of this framework is to make patient engagement a common practice in the research process for all health conditions, whether a researcher has experience working with patients or not,” Megan said. “This patient engagement framework can be customized by any researcher for any study.”
Patient Engagement Leads to Smarter Research
Why is patient engagement important? Without patient input, research may target the wrong outcomes or design trials without consideration of the preferences of people living with Parkinson’s. In one clinical trial, people with Parkinson’s were excited to help test a new PD medication. However, the clinical trial requirements were burdensome. Due to poor recruitment and retention, the trial could not continue. Had the researchers designed a clinical trial allowing for patient engagement, it could have been more patient friendly, while enrolling and retaining study participants. Read the article for more case studies.
“When you design a clinical study with input from people living with Parkinson’s, each part of the study can be tailored for the community you are trying to help without impacting the quality of the science, making research faster and better,” Megan said. The patient engagement framework is now available for all organizations to utilize and tailor to their needs to expedite research and make it relevant to their community.
Parkinson’s and Beyond
Not every organization has a patient engagement process in place, like the Parkinson’s Foundation. Parkinson’s is a complex disease with multiple symptoms (non-movement and movement) that can make the patient engagement process difficult to navigate without the proper planning and resources. The Foundation works to mediate patient engagement so that both people living with Parkinson’s and researchers can contribute and have a positive experience.
“We work with researchers and other patient advocacy organizations all over the world to overcome the challenges that people might experiences when engaging with patients for the first time,” said Karlin Schroeder, co-author and Parkinson’s Foundation Senior Director of Community Engagement. “The ultimate goal is to create an environment for success that helps the most people possible.”
The Parkinson’s Foundation will continue to use its patient engagement framework, helping people with Parkinson’s become empowered to fight this disease through active involvement. “We hope this framework can become a blueprint, reaching beyond Parkinson’s so other patient advocacy groups can utilize this model for other life-impacting diseases and increase patient engagement for the greater good,” Karlin said.
If you are interested in becoming a research advocate or working with research advocates, please email Karlin Schroeder at KSchroeder@Parkinson.org.
Read the full article online “Utilizing Patient Advocates in Parkinson’s Disease: A Proposed Framework for Patient Engagement and the Modern Metrics that Can Determine Its Success in Health Expectations” in Health Expectations.
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
Looking Ahead: Parkinson's, COVID-19 & the New Normal
As the COVID-19 pandemic continues to evolve and society slowly begins to reopen, what does the new normal look like for the Parkinson’s disease (PD) community?
When it comes to COVID-19 today, what does the PD community need to know?
The last few months have answered some questions for us. For instance, living with Parkinson’s does not put you at a higher risk of contracting COVID-19, but it does make it harder for you to recover if you contract it. This is because people with PD have slight differences in their immune systems. We also know that having COVID-19 increases your already elevated risk of getting pneumonia. Also, Hydroxychloroquine is not a viable treatment for COVID-19.
What should I be doing right now?
The best treatment is prevention and the best prevention is to wear a mask.
Until we have a vaccine, stay in full-on prevention mode.
Maintain socially distance.
Fight cabin fever, get outside, go on walks, but be careful and take precautions.
Does vitamin D help prevent you from getting COVID-19?
Preliminary research is pointing to the possibility that COVID-19 patients with higher levels of vitamin D have an easier time fighting the virus. If you have Parkinson’s, you are most likely safe to take a multi-vitamin that has vitamin D. Avoid high dosages and keep in mind that going outside is a natural source of vitamin D. We will need confirmation on this research and we also caution not to over dose with vitamin D until we know more. The amount of vitamin D in a multivitamin is usually safe.
How long should I wear a mask?
As long as COVID-19 is around, wear a mask. Wear a mask until the CDC recommends you don’t need to wear one for your specific zip code.
Should I wear a cloth or surgical mask?
They are both good, but a surgical mask is better. Some covering is better than none. COVID-19 is found more on the outside than inside of a mask, so try to avoid touching the front of your mask, then your face or eyes.
Can I attend exercise classes again?
When you attend an exercise class or go to a gym, you breathe heavier as you exercise and your chance of spreading the virus rises. Exercise instructors can spread the virus from student to student and class to class, while people in the class can spread it among themselves. A mask helps, but if you take it off during the class, you increase your risk. Continue to avoid big exercise classes. Instead, get back to one-on-one sessions with your physical or occupational therapist or try to see a personal trainer. Make sure you both mask up during the session. It’s always a good idea to get out and walk or try online classes.
Is it safe to undergo elective surgery again?
It depends on your hospital. How many COVID-19 patients do they have? Do they have enough protective gear for staff and patients? Right now, the risk of contracting COVID-19 in hospitals is low. In many cases, I would say you can undergo elective surgery, like deep brain stimulation.
Should I get the antibody test?
In a perfect world, an antibody test will tell you if you have been exposed to COVID-19, and if you have, your chance of reinfection would be very low. However, we still do not have enough data to prove their effectiveness. Know that there are different types of tests ― some are better, such as PCRs (polymerase chain reaction) and others are only accurate half the time.
Is feeling demoralized caused by the social distance?
Isolation can worsen a lot of things, like non-motor symptoms. Do not ignore feelings of demoralization or depression, which we see in 20% of our patients. Talk to your professional health workers, like a physiatrist, social worker or therapist. For more information, read Stopping the Spiral Toward Demoralization in Parkinson’s Disease.
Can quarantine be causing my dad to slow down?
With quarantine and social distance, we are seeing that some of our patients are getting worse ― slower with walking, talking and symptoms. You can safely start moving around, take walks, get outside while wearing a mask. Try to find an online program like PD Health @ Home, an online support group or try to schedule a one-on-one with his occupational or physical therapist. When you walk choose times and places without crowds.
My community is not following social distancing guidelines. What should I do?
You will start to see restaurants and places where people are not wearing a mask. Fight the urge to stop wearing the mask. If you are a member of my family or a patient, I strongly recommend you wear a mask. This is not the time to stop all precautions.
Can I see my grandchildren and/or children now?
Remember, we do not have a treatment or vaccine yet, but we do know that when people wear a mask, we are not seeing transmission. The best option is to see them virtually. If you really want to see them, do not hug them, try to keep 12-feet apart, and wear a mask.
Will there be a second wave? Will COVID-19 come back?
We really do not know. What we are seeing is that as we relax the restrictions, there seems to be a rise in numbers. The good news is that we are better prepared to deal with it.
What do you think will happen next on the COVID-19 front?
We will get through this. I do believe we will have a vaccine, but it is going to take time. We must remain careful, we can get out of the house, but do not overdo it. Remember that the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) and your healthcare team are here to assist.
The Parkinson's Foundation is dedicated to bringing you virtual educational, wellness and exercise programs through PD Health @ Home. Learn more at Parkinson.org/PDHealth.
The goal of PD GENEration is to leverage genetics as a powerful tool to help us uncover what is responsible for slowing or stopping the progression of Parkinson’s, which will ultimately improve care and speed the development of new treatments. Study results will advance how we design clinical trials, for instance, testing a new medication based on what type of PD gene a person carries.
As the first national Parkinson’s study to offer bilingual genetic testing in a clinical setting with counseling, the Parkinson’s Foundation flagship study has unearthed exciting preliminary findings.
Higher Detection Rate
Of the 291 people who have been tested as part of the study, 51 tested positive with a genetic mutation that is linked to PD. This amounts to 17% of all PD GENEration participants.
This percentage is higher than the current reported estimates of one to 10% of people with PD who have a genetic connection to the disease — a range that is not representative of the entire PD population since not everyone with Parkinson’s has been genetically tested. PD GENEration researchers theorize that as more people with PD get genetically tested, the rate of detection will most likely rise.
Discovering Rare Mutations
Genetic test results have led researchers to identify extremely rare genetic mutations linked to PD. Some study participants carry multiple mutations, meaning one person can carry two or three different genetic mutations associated with PD.
These multiple genetic mutation carriers have not been extensively studied — thus, we do not know how living with multiple genetic mutations affects PD symptoms or progression. This finding will significantly contribute to the biological understanding of the disease, helping us assess the impact of each mutation and which ones are more influential towards causing the disease, which will lead to better treatments.
Creating an International PD Panel
PD GENEration is working to finalize the development of a global leadership council on genetics and PD. The international expert PD panel convenes leading clinicians, molecular biologists and geneticists who will develop global consensus to decide which genes and mutations are important for PD and will accelerate research efforts towards better PD treatments.
“This panel welcomes anyone and everyone who is significant in genetics and PD,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “It will be a platform for experts from around the world to assess PD GENEration data in real time — data that has already led us to new findings.”
A Community Dedicated to Research
As evidence that the study’s outreach to the PD community goes far beyond the Foundation’s immediate network, 33% of the PD GENEration participants came from outside of the Parkinson’s Foundation Centers of Excellence network. Participants traveled from 21 states to six pilot sites.
“This community is determined and resilient to do what it takes to contribute to Parkinson’s research, a great indication that we will be able to successfully complete our goal of enrolling 15,000 participants who want to know if they have a genetic link to this disease,” Dr. Beck said.
The Next Phase
The PD GENEration study will expand to more testing sites. In response to the current climate, PD GENEration leaders are designing a telemedicine-based approach, where participants can submit their test using an at-home kit and complete virtual, bilingual genetic counseling.
PD GENEration recently partnered with Biogen to accelerate the study. Looking ahead, once PD GENEration is complete, the partnership will help drug development companies, like Biogen and others, recruit for clinical trials faster. This will help speed up the development of better PD medications and recruitment for PD clinical trials.
What Happens in the Vagus Nerve: The PD Gut-Brain Connection
The gut-brain relationship is real. Stomach or intestinal distress can lead to anxiety or depression. However, those gut-brain connections go much further: evidence from recent studies strongly suggest a link between the gut (the gastrointestinal system) and Parkinson’s disease (PD).
In the PD research field, the Braak Hypothesis states that the earliest signs of Parkinson's are found in the enteric nervous system (known as the brain in the gut). This theory is supported by evidence that in PD, non-motor symptoms, such as constipation, may appear before motor symptoms. Braak hypothesized that abnormal alpha-synuclein can spread from the gut via the vagus nerve to the midbrain, where it selectively kills dopamine neurons.
Get to Know the Brain
Alpha-synuclein: a protein found in the brain, central to Parkinson’s.
Central Nervous System:controls most functions of the body and mind. Consists of the brain and the spinal cord.
Prion: a protein that can harm a normal protein, causing damage to healthy brain cells. Some scientists believe alpha-synuclein can become a prion and lead to Lewy body clumps, the hallmark of PD.
Vagus Nerve: a nerve that connects the brain to the gut. Regulates organ functions, such as digestion, heart rate, respiratory rate, coughing, sneezing and swallowing.
Published in Neuron, a 2019 study titled, “Transneuronal Propagation of Pathologic alpha-Synuclein from the Gut to the Brain Models Parkinson's Disease" (Kim et al., 2019) a group of scientists tested Braak’s hypotheses, mimicking the spread of abnormal alpha-synuclein observed in PD, scientists injected both normal mice and knock-out mice (mice with no alpha-synuclein) with misfolded alpha-synuclein directly into the stomach opening and part of the small intestine ― which are packed with vagus nerve branches.
To monitor the injected abnormal alpha-synuclein, scientists used a stain to observe the progression, if any, from the gut to the brain over several months. They also tested severing the vagus nerve in the mice, to see whether it might prevent the spread of the abnormal alpha-synuclein to the brain. Additionally, throughout the study, several tests were conducted on the mice to measure motor and non-motor symptoms.
Results In normal mice:
Injecting abnormal alpha-synuclein into the gut did get taken by the vagus nerve and successfully traveled into the brain, causing the normal alpha-synuclein to transform into abnormal, misfolded alpha-synuclein.
This transformation process traveled from cell-to-cell, forming more Lewy body clumps. Remember, misfolded alpha-synuclein is the main component of Lewy bodies.
Injecting abnormal alpha-synuclein into their gut resulted in significant dopamine loss.
In the mice with no alpha-synuclein:
Injecting abnormal alpha-synuclein into their gut successfully made it into the brain, but nothing happened. Since there was no normal alpha-synuclein, it was not able to start the clumping.
Motor and Non-Motor Findings
Seven months after injecting abnormal alpha-synuclein into the gut of normal mice:
There was a significant loss of dopamine in the brain.
There were non-motor cognitive impairments, including memory and social deficits, anxiety, depression and olfactory and gastrointestinal dysfunction.
Motor deficits included a loss of grip strength and agility.
Those mice that had their vagus nerve severed prevented the loss of grip strength and agility shortfalls.
What Does This Mean?
The major findings of this study support that abnormal alpha-synuclein is capable of spreading from the gastrointestinal tract (the gut) through the vagus nerve into the brain, leading to a loss of dopamine.
Further, the Kim et al. (2019) study also revealed that the misfolded alpha-synuclein in the brain causes the normal alpha-synuclein to misfold; and those misfolds form into clumps, resulting in Lewy bodies, which in turn, result in Parkinsonian symptoms. In terms of potential therapeutic applications, if this gut-brain PD connection via the vagus nerve works the same way in people, it may be possible to interfere with this trafficking to prevent PD symptom progression before it reaches the brain.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the Parkinson’s and LID in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).
Braak, H., & Del Tredici, K. (2017). Neuropathological Staging of Brain Pathology in Sporadic Parkinson's disease: Separating the Wheat from the Chaff. J Parkinsons Dis, 7(s1), S71-S85. doi:10.3233/JPD-179001
Braak, H., Ghebremedhin, E., Rub, U., Bratzke, H., & Del Tredici, K. (2004). Stages in the development of Parkinson's disease-related pathology. Cell Tissue Res, 318(1), 121-134. doi:10.1007/s00441-004-0956-9
Braak, H., Rub, U., Gai, W. P., & Del Tredici, K. (2003). Idiopathic Parkinson's disease: possible routes by which vulnerable neuronal types may be subject to neuroinvasion by an unknown pathogen. J Neural Transm (Vienna), 110(5), 517-536. doi:10.1007/s00702-002-0808-2
Breit, S., Kupferberg, A., Rogler, G., & Hasler, G. (2018). Vagus Nerve as Modulator of the Brain-Gut Axis in Psychiatric and Inflammatory Disorders. Front Psychiatry, 9, 44. doi:10.3389/fpsyt.2018.00044
Caputi, V., & Giron, M. C. (2018). Microbiome-Gut-Brain Axis and Toll-Like Receptors in Parkinson's Disease. Int J Mol Sci, 19(6). doi:10.3390/ijms19061689
Kim, S., Kwon, S. H., Kam, T. I., Panicker, N., Karuppagounder, S. S., Lee, S., . . . Ko, H. S. (2019). Transneuronal Propagation of Pathologic alpha-Synuclein from the Gut to the Brain Models Parkinson's Disease. Neuron, 103(4), 627-641 e627. doi:10.1016/j.neuron.2019.05.035
Miraglia, F., & Colla, E. (2019). Microbiome, Parkinson's Disease and Molecular Mimicry. Cells, 8(3). doi:10.3390/cells8030222
Mulak, A., & Bonaz, B. (2015). Brain-gut-microbiota axis in Parkinson's disease. World J Gastroenterol, 21(37), 10609-10620. doi:10.3748/wjg.v21.i37.10609
