In 2013, Mike Horak was diagnosed with early-onset Parkinson’s disease (PD) at age 48. The diagnosis of Parkinson’s was all too familiar – it is one he shares with 81-year-old father, who has been living with PD for 20 years, and his great-grandmother, who passed away in 1955. Given this significant connection to PD, Mike is determined to support the development of better treatments, and ultimately a cure, for Parkinson’s disease.
The Asheville, North Carolina resident and Parkinson’s Foundation Advisory Board member for the Carolinas Chapter has channeled this determination into action, recently stepping up as Reach Further campaign co-chair for the Carolinas. Reach Further is a four-year fundraising campaign with an ambitious goal of raising an additional $30 million to accelerate the Foundation’s work to advance research toward a cure and expand community care and programs.
“I don’t know if we will find a cure in my lifetime,” said Mike, “but I want to be part of the process. I think a cure is going to come. As someone with Parkinson’s disease, the Reach Further campaign matters. At the end of the day, it will increase our knowledge, our quality of life, and the kind of Parkinson’s healthcare we have in our communities.”
Mike is also participating in the Foundation’s new initiative, PD GENEration: Mapping the Future of Parkinson’s Disease. Supported by the Reach Further campaign, PD GENEration provides no-cost genetic testing to people with Parkinson’s, as well as genetic counseling to help participants understand their results.
Mike submitted his cheek-swab DNA sample by mail recently, which will be analyzed for clinically relevant Parkinson's-related genes. He is currently awaiting his results, which will be delivered via a telemedicine session with a genetic counselor. This information may provide answers about his family’s current and past link to Parkinson’s disease, potential clinical trials he may benefit from, as well as what the future may hold for his two college-aged daughters.
“I think Parkinson’s disease is well behind the eight ball in terms of what we know about genetics and genetic treatments. We are at the cusp,” Mike said. “I want to have a better idea of the source of my Parkinson’s and the source of my particular symptoms. I also wonder if I have the genes that make it more likely that my kids will get PD. If my father, who is also participating in PD GENEration, and I do get information that indicates we have a genetic component, I want to be part of the research. Knowledge is power.”
Mike, who has benefitted from cutting edge Parkinson’s treatments under the guidance of a dedicated movement disorder specialist, is also passionate about the expansion of Parkinson’s care and resources in medically underserved regions. He said, “In Western North Carolina, there are not many neurologists, and only one movement disorder specialist in the area. I’m excited that Reach Further will raise dedicated funds to expand access to quality Parkinson’s care in areas like mine.”
Managing Parkinson’s symptoms for Mike includes staying physically active; he and his wife Lisa are avid hikers. “Activities like taking a walk every day, getting on exercise bike, yoga — they all have powerful benefits for the body and soul,” Mike said.
Shortly after Mike’s diagnosis, the couple decided to fulfill a dream and hike 435 miles along Northern Spain’s Camino de Santiago. Reflecting on this, he said, “Don’t put off till tomorrow what you can do today. No one knows what the future is — live accordingly and you are going to have a happier life.”
Mike offered the following advice to those newly diagnosed with Parkinson’s disease, “Know that you are not alone. There is a whole community that will support you. Reach out, call the Parkinson’s Foundation Helpline, call your local chapter. You will find someone who will reassure you and remind you that it is not a death sentence, it is just a diagnosis. People with Parkinson’s live rich, meaningful lives. Do things that make you happy, support causes like the Parkinson’s Foundation that help improve quality of life and most importantly, keep active!”
Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call us at 1-800-4PD-INFO (473-4636).
Josh Raskin’s understanding of Parkinson’s disease (PD) has evolved over the last 40 years. He knows that you can live with intrusive symptoms and get misdiagnosed. He knows that his father would have had a better quality of life had he found resources and expert care early on, and he knows that the more he increases his involvement with the Parkinson’s Foundation, the more whole he feels.
Josh’s father, William, most likely lived with Parkinson’s for 20 years before he passed away in 2005. “We think he had it for many years before he was formally diagnosed,” Josh said. “Looking back, I also think my grandfather had Parkinson’s. My uncle is living with Parkinson’s now. This is a disease that is prevalent in my world. It’s personal.”
Josh has made it a point to incorporate Tzedakah in his life (the Hebrew word for charity) by trying to make things a little better for the Parkinson’s community. “I was always looking for an outlet to express the importance of being charitable and I found lots of great causes, but not one that means as much to me as Parkinson’s disease,” Josh said.
Josh has been an important part of the Foundation board for four years. He recently found a new way to make an even greater impact, faster. Josh is now co-chair of the Parkinson’s Foundation Reach Further campaign, alongside fellow Board member Penn Egbert.
The Parkinson’s Foundation launched Reach Further to accelerate progress on Parkinson’s research and increase access to quality of life programs. This four-year fundraising campaign will raise an additional $30 million to expand its reach while advancing research toward a cure.
“This is a big deal,” Josh said. “I think this is going to increase progress on several aspects of the Foundation’s mission. I originally became involved with the Parkinson’s Foundation in search of a cure. With my father and grandfather living with Parkinson’s, you can understand why I would be nervous. I was all about research and finding the cure. Reach Further is a proactive endeavor on all fronts as my focus has evolved.”
Research is just one component on the campaign. “Reach Further will move forward the PD GENEration study and other Foundation grants that aim to find a cure. This is not a moonshot approach, this research going on right now helps us with the building blocks to understand Parkinson’s from the start. This creates outcomes and work that will be leveraged by everyone out there looking for a cure,” Josh said.
For Josh, it was not until he began serving on the Parkinson’s Foundation board that he realized his father’s Parkinson’s experience could have been superiorly different. “My orientation about this disease has changed dramatically,” Josh said. “Today I’m so much more optimistic. There are better treatments and one of the differentiating factors of the Parkinson’s Foundation is that our focus and emphasis is to improve the lives of those living with Parkinson’s now. I feel my father would have had more time, better quality of life and this huge support system in place had we found the Parkinson’s Foundation before he was diagnosed.”
The synchronization of research and care is what drew Josh to co-chair the $30 million campaign. “When we raise these funds, we are going to be able to increase the number of our Centers of Excellence and increase access to care to local communities,” Josh said. “We are going to be able to help a much bigger percentage of people with Parkinson’s. This campaign will keep us on the right path for Parkinson’s Foundation research breakthroughs.”
Josh and his wife, Melissa, work alongside Penn, the Reach Further co-chair, to co-host the Celebrate Spring New York fundraiser. The annual event has raised a total of nearly $1.5 million since 2007. “This event was a way to give back, raise awareness and get your friends involved. The more I worked alongside the Foundation, the more impressed I was. When I was asked to join the board, I was excited to make a difference in something I felt so passionate about.”
For Josh, it took many years of knowing Parkinson’s before he found a large-scale way to make lives better for people with Parkinson’s. His advice to anyone looking to get involved is simple, “Do it now, reach out to us,” Josh said. “We need all the help we can get. Everyone at the Foundation is extremely knowledgeable and will help you find a way to get involved.”
Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call us at 1-800-4PD-INFO (473-4636).
Two new COVID-19 vaccines are currently in distribution across the U.S. with several others in production across the globe. Collectively, these vaccines are bringing hope and excitement to the millions of Americans, including those with Parkinson’s disease (PD), who are actively protecting themselves from exposure to the virus. Both vaccines available in the U.S. provide some protection in the event of a COVID-19 exposure and help the body more rapidly clear the infection.
On January 7, Michael S. Okun, MD, Parkinson’s Foundation National Medical Advisor, led a Parkinson’s Foundation Facebook Live event, “Parkinson’s & the COVID-19 Vaccine.” Dr. Okun answered the PD community’s most pressing questions about the vaccine.
“If you have Parkinson’s, you should get the COVID-19 vaccine,” Dr. Okun said. “The benefit is really high and favors receiving the vaccine as soon as possible. It is in the best interest for all persons with Parkinson’s disease to pursue the vaccine as soon as it is available in the region you live. Of course, talk to your doctor first as there are a handful of rare exceptions for those who cannot receive the vaccine.”
Question: How does the COVID-19 vaccine work?
Dr. Okun: When the COVID-19 vaccine goes into the body, it tells your immune system to make antibodies (proteins that identify and attack the identifying marker of the COVID-19 virus) to fight COVID-19. Antibodies bind, like a lock and key, to viruses and other threats. The vaccine does not prevent COVID-19 infection but it does teach your immune system what COVID-19 looks like and how to attack it if you are infected.
To achieve its optimal effectiveness, you will need to get both doses of either vaccine. Both vaccines available in the U.S. (produced by Pfizer and Moderna) have identical effectiveness. They use a new treatment approach called messenger RNA (or mRNA), which send a message into the building blocks of your cells and body — the message stimulates a response and stimulates antibody production to create a COVID-19 defense system.
Should all people with Parkinson’s disease get the vaccine?
Dr. Okun: Yes. I recommend this vaccine to all my patients with Parkinson’s in my medical practice. Movement disorder specialists have largely agreed as a global recommendation that everyone with PD should get this vaccine, with few exceptions. This is an incredibly safe vaccine. I have lost patients to COVID-19. This virus can be preventable, but it will take more than just the vaccination. We must follow the three C’s:
Cover. Always wear a two- or three-ply face mask (like a surgical mask) when you are around others or in public. Don’t wear bandanas or gaiter face coverings.
Control. Control your environment. If necessary, interact with others outdoors while maintaining a distance.
Contain. Minimize gatherings. Walk or sit six feet or more away from one another. Do not trust anyone who does not live full time in your home.
Can you still get the COVID-19 infection after you get the vaccine?
Dr. Okun: Yes. Even after being vaccinated, you can still be infected with COVID-19, spread it and experience COVID-19 symptoms. In most cases we are predicting that the symptoms will be less severe. The data also strongly suggests that COVID-19 is much less likely to be deadly after receiving two shots of the vaccine.
Do I still need to wear a mask If I get the COVID-19 vaccine?
Dr. Okun: Yes. You still need to wear a mask and keep at six- to 12-foot distance after receiving the vaccine. We are still seeing high numbers of the virus spreading among people who are in public and do not protect themselves. If you get the vaccine, you can still be infected with COVID-19, and spread it. If you do not wear a mask you could spread the virus to someone else without even knowing it, and this could have serious health consequences for others — especially the elderly and at-risk groups. Remember to cover, control and contain.
If I get the vaccine can I see my children or grandchildren?
Dr. Okun: Maybe, it depends on many factors. If you decide to see your grandchildren, wear your mask and follow the three C’s. If you do not live with them and you receive the vaccine (both shots), we still recommend masking, staying outside and keeping six to 12 feet apart. The safest situation remains seeing only people who live in your house. Be aware that children who attend in-person schooling may have many exposures.
If I had COVID-19 should I still get the vaccine?
Dr. Okun: Yes. The Centers for Disease Control and Prevention (CDC) recommends waiting a few weeks after you recover from COVID-19. At UF Health, we have health professionals who have contracted COVID-19 and were vaccinated. We do not know if having COVID-19 will help you develop and maintain the antibodies necessary to fight off the disease. Risk and mortality are so high with this virus that we recommend receiving the vaccination as soon as you can after infection with COVID-19. Following current CDC guidelines, most doctors wait several weeks after infection before vaccination.
Are there side effects from the vaccine?
Dr. Okun: Side effects are mostly local and occur in the region of the injection (the shoulder in most cases). The vaccine goes into the muscle and works up your immune system (we recommend receiving it in your non-dominant arm). The most likely side effect you may experience is a sore arm for a few days, with complete use of the arm.
When you return for your second shot, about half of people will experience mild to moderate flu-like symptoms and possibly a fever for a day or two — try to avoid work or public places for those days if you can. This adverse reaction is a good thing. It is a sign that your immune system is working hard, NOT that you have COVID-19.
Relatively common side effects include:
Pain at injection site
Fatigue
Headache
Muscle pain
Chills
Joint pain
Fever
Injection site swelling
Injection site redness
Nausea
How can I access the vaccine?
Dr. Okun: In the U.S., the vaccine is being distributed to each of the 50 states, and each state has a different process for distribution. In most states, the vaccine is currently being administered to frontline healthcare workers, and eventually it will be distributed by age and priority levels. Tips to access the vaccine include:
Check in with your local health department. Some have a sign-up list so that you can access appointments online or by calling.
Check in with your primary doctor and let him/her know you want the vaccine.
Call nearby hospitals and ask them about their distribution plan and whether you can receive it there.
Don’t wait in line for hours or camp out without social distancing. Ideally, get an appointment.
We are working on getting people with Parkinson’s to be listed as a 1b priority, meaning they would get priority in receiving the vaccine. If it were up to me, I’d be vaccinating everyone with Parkinson’s disease early in the process (regardless of age), and I’d do it tomorrow.
Guidance on who will receive the COVID-19 vaccine at each stage of the rollout is determined at the state level. Contact your state’s health department for details about when you and your loved ones will be eligible to receive the COVID-19 vaccine. Find your state’s health department.
We are hearing that in some areas, if you communicate to your doctor, healthcare system and local health department that you have Parkinson’s you may possibly be offered the vaccine earlier (regardless of age). There is no harm in asking and also informing the local authorities about your condition.
What do people with Parkinson’s need to bring with them for their vaccine appointment?
Dr. Okun: Take your personal information (identification) and medication list. If you are prone to fainting, let the nurse know. For the second shot, bring the card issued to you on the first shot, so that the vaccine administration can be documented. Take a picture of the card once you have both shots so that you always have a copy.
I have Parkinson’s and blood pressure issues. Should I be worried about getting the vaccine?
Dr. Okun: No. You will most likely be sitting when you get the vaccine, so if you get faint or have a change in your blood pressure you should be okay. Stay hydrated; it will help with changes in blood pressure. Take a water bottle and a snack with you. You will likely be asked to sit in a waiting area for 15-20 minutes after each shot to make sure you do not have a reaction. If you can drink a small bottle of water either immediately before or immediately after the shot, we believe this is a good idea, especially if prone to fainting.
What are the differences between available vaccines?
Dr. Okun: Moderna and Pfizer vaccines are distributed in the U.S. and in other countries, with 94 and 95 percent effectiveness. Both require two dosages and need to be stored at incredibly low temperatures — the Pfizer vaccine requiring an even lower storage temperature than the Moderna vaccine — making distribution and storage a challenge. These two vaccines belong to a new treatment approach called messenger RNA (or mRNA) vaccines, which create a COVID-19 defense system.
Other vaccines are in development around the world and most work more like a traditional vaccine (like the flu vaccine). They send instructions through DNA, teaching the immune system how to respond to COVID-19. There are several vaccines in early development, but these have the most available information:
Oxford–AstraZeneca: distributed in the U.K. with ~70 percent effectiveness. It works in two dosages. The major benefit to this vaccine is that it can be stored at refrigerator temperatures. The vaccine may be more effective (~90%) if a weakened first shot is followed a few weeks later by a standard dose.
Sinovac and Sinopharm: created in China with ~78-80 percent effectiveness using two dosages. There is limited data on these vaccines. Sinovac is currently in late-stage trials in other countries.
Sputnik V: distributed in Russia and works using two dosages. Early reports are of ~92 percent effectiveness. However, there is limited data on this vaccine.
Overall, if we could decrease the refrigeration requirements and lower the cost of production, we can distribute the vaccine worldwide. The Oxford-AstraZeneca vaccine is the leading candidate for worldwide distribution.
I’m allergic to other vaccines, should I get the COVID-19 vaccine?
Dr. Okun: In many cases, people with allergies to vaccines may possibly receive the Moderna or Pfizer vaccines. Side effects including allergies to vaccines are usually caused by the fluid surrounding the vaccine itself. Do not assume you cannot get this vaccine; talk to your doctor. Old fashioned vaccines are manufactured in a completely different fashion as compared to the current COVID-19 vaccinations. It will be rare for someone to not be able to receive the vaccines; we believe most people are eligible.
If I had Guillain-Barré syndrome in the past, can I get the vaccine?
Dr. Okun: In rare cases, among both children and adults, a bad reaction to past vaccines could result in Guillain-Barrésyndrome — a condition where the immune system attacks nerves in the body, resulting in loss of sensation, muscle weakness and in some cases temporary paralysis. This syndrome usually resolves in several weeks/months. We are NOT however seeing Guillain-Barré associated withthe COVID vaccine as was shown by a recent study. A history of Guillain-Barrésyndrome does NOT mean you should avoid receiving the vaccine. If you just recovered from Guillain-Barre syndrome however, most experts recommend you should speak with your doctor and wait a few weeks before vaccination.
Dr. Okun also answered questions about COVID-19 and Parkinson’s:
Is it more difficult to recover from COVID-19 if you have Parkinson’s?
Dr. Okun: Data suggests that having Parkinson’s means a more difficult COVID-19 recovery. Since this virus is still actively spreading, we are collecting tons of data on COVID-19 patients. A study from The Roy J. and Lucille A. Carver College of Medicine at the University of Iowa, a Parkinson’s Foundation Center of Excellence, showed that people with Parkinson’s who contracted COVID-19 had a 30 percent increased risk of mortality (death) from the virus.
If someone did not have Parkinson’s before, is it likely that they will develop it after recovering from COVID-19?
Dr. Okun: We do not have the numbers on how common it is to receive a Parkinson’s diagnosis after recovering from COVID-19. There are several intriguing papers on how COVID-19 may affect the brain and how it may possibly contribute to Parkinson’s risk. At this point, we caution the public and researchers not to speculate until we have more data.
What are the most common COVID-19 symptoms people with Parkinson’s experience?
Dr. Okun: We are just starting to get the information on clinical Parkinson’s symptoms and COVID-19. One study in Milan, Italy, reported that motor and non-motor symptoms seemed to worsen with COVID-19, and that medication adjustments were required in a third of people with PD and COVID-19. Researchers hypothesized that the COVID-19 infection, the Parkinson’s medications, and the immune system, together create a perfect storm to worsen Parkinson’s symptoms. The most common symptoms encountered were urinary issues, fatigue, cognitive dysfunction and confusion. We are seeing many patients who survive COVID-19 and require that their PD medications be adjusted. Similarly, we are also finding that in the hospital, a neurologist with expertise in Parkinson’s can help in decision making for those with COVID-19.
Can COVID-19 cause dementia in the long-term?
Dr. Okun: We do not know. Researchers will be studying this virus for many years to come. There have been studies linking the virus to post-recovery neurological symptoms, but we will need more data and more studies to answer this question.
Do people with Parkinson’s get priority access to the COVID-19 vaccine?
Each state has its own process for rolling out the vaccine to different population groups. If you would like to advocate for people with Parkinson’s to be part of a priority group, we encourage you to contact your elected officials.
We’re here for you. For Parkinson’s information, references to online programs and local resources, please contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).
Research Study Makes Case for Palliative Care Early in Parkinson's Treatment
When many first hear the term palliative care, they can misinterpret it as end of life care. However, palliative care is an option for anyone with Parkinson's disease (PD) to receive additional support, even at the point of diagnosis. It can help at any PD stage, specifically with treating pain management; encompassing spiritual care and helping people with Parkinson’s and their family navigate emotional challenges. It can also compassionately create a safe space for one to explore, and ultimately share, their end-of-life directives.
What if that level of holistic care wasn’t reserved for the final weeks of life, but rather was incorporated into standard care in the PD population? How might that impact the quality of life and symptom burden for people with Parkinson’s and their caregiver?
Recently published in the journal, JAMA Neurology, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial” (Kluger et al., 2020), a one-year comparative study investigated palliative care and its effects on patient and caregiver.
Study participants included 210 patients (135 men, 75 women), predominantly white, married, college-educated, with an average age of mid-60s. The caregiver participants were composed of 175 people (47 men, 128 women) — 143 of whom were the patients’ spouse. The study was conducted at three academic medical centers: University of Alberta (Alberta, Canada), the University of Colorado (Aurora, CO), and the University of California (San Francisco, CA).
Participants were randomly assigned to receive one of two courses of treatment:
The standard of care option: provided by a neurologist and a primary care physician.
The integrated palliative care option: included the standard of care, plus a chaplain, a social worker and a nurse using a palliative care checklist — who could also access additional guidance from a palliative medicine specialist. Palliative care visits were performed either in person or by telemedicine every three months.
The study primarily measured a change in quality of life of patient and caregiver burden. Also measured were: symptom burden; patient and caregiver mood (anxiety and depression); patient and caregiver grief and spiritual well-being; patient and caregiver patterns of health care use; motor symptoms; and, cognitive functioning.
Results
Comparing participants receiving palliative care with those who received standard care alone, after six months:
Patients receiving palliative care had better quality of life
Patients receiving palliative care had better symptom burden
Patients receiving palliative care experienced less grief
Patients receiving palliative care had better rates of completing their Advanced Directive Completion (end-of-life preferences)
Patients receiving palliative care had statistically and clinically significant benefit in motor symptoms
Comparing palliative care and standard of care caregivers:
Palliative care caregivers experienced less anxiety
No other significant differences were found in caregiver burden
What Does It Mean?
This study found that introducing palliative care significantly improves quality of life for people with Parkinson’s — not just emotionally, but also physically. The study authors share that while these motor improvements were unexpected, they may reflect, “an unanticipated benefit of our palliative care team’s general goal of encouraging activities that promoted joy, meaning and connection.” Additionally, the caregivers in the palliative care group also experienced less anxiety themselves — with no increase in caregiver burden. Interestingly, not a single outcome measure favored receiving standard care alone.
Of note, the study’s main limitation was its lack of diversity among study participants; more than 70% of the participants were white. Incorporating a far more diverse population needs to be included as this important research moves forward.
At its core, palliative care is a caring, holistic approach that optimizes quality of life for as long as possible. Loved ones and caregivers benefit as well, often transforming an otherwise frightening, overwhelming and painful journey into a sacred passage. Introducing this level of care and connection could make all the difference in quality of life.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more by visiting these Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
Bloem, B. R., Trenkwalder, C., Sanchez-Ferro, A., Kalia, L. V., Alcalay, R., Chiang, H. L., . . . Papa, S. M. (2021). COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel? J Parkinsons Dis, 11(1), 3-8. doi:10.3233/JPD-212573
Pardi, N., Hogan, M. J., Porter, F. W., & Weissman, D. (2018). mRNA vaccines - a new era in vaccinology. Nat Rev Drug Discov, 17(4), 261-279. doi:10.1038/nrd.2017.243
Shimabukuro, T., & Nair, N. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Pfizer-BioNTech COVID-19 Vaccine. JAMA. doi:10.1001/jama.2021.0600
Team, C. C.-R., Food, & Drug, A. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Moderna COVID-19 Vaccine - United States, December 21, 2020-January 10, 2021. MMWR Morb Mortal Wkly Rep, 70(4), 125-129. doi:10.15585/mmwr.mm7004e1
Coping with COVID-19: Survey Results from People with Parkinson’s During the Pandemic
During the time of COVID-19 are people with Parkinson’s disease (PD) frequently experiencing anxiety? Are they using telehealth services to see their medical team? Are they exercising less or more often than before the pandemic? A Parkinson’s Foundation survey sought to answer these questions and more.
As the COVID-19 pandemic continues, little is known about its impact on the health and day-to-day activities of people with Parkinson’s. The Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey to people with Parkinson’s to provide guidance to clinicians, policy makers and the PD community on how COVID-19 has transformed the lives of people with Parkinson’s and their access to care.
“People with Parkinson’s encounter numerous difficulties during normal times, especially when it comes to receiving proper PD medications when admitted to hospitals,” said Phil Gee, Parkinson's Foundation People with Parkinson’s Advisory Council Member. “I am grateful that the Parkinson’s Foundation initiated this COVID-19 survey to capture how people with Parkinson’s disease are coping during this pandemic.”
What did the survey measure?
This survey was administered between May 2020 and June 2020, receiving 1,342 completed responses from people with PD.
The survey asked people with PD about their:
COVID-19 health status
Emotional health
Attitudes and practices related to changes in their routine since the pandemic began
Telehealth use and satisfaction
Results
Almost all survey respondents came from within the U.S. Respondents live across states that experienced all levels of COVID-19 infection. The average age for respondents was 71, and the average time they have lived with Parkinson’s was seven years.
Diagnosed with COVID-19 and Parkinson’s
Only 17 (1.3%) survey respondents with PD reported a COVID-19 diagnosis by a health provider, five of which had a test to confirm the diagnosis. Within this small group, the most reported COVID-19 symptoms included: fatigue (71%), muscle pain (59%), body aches (59%), cough (63%), headache (47%) and shortness of breath (47%). COVID-19 symptoms lasted an average of 13.5 days.
Mood
More than half of respondents experienced nervousness or anxiety (67%), feeling down or depressed (51%), reduced interest or pleasure in doing things (54%) or sleep disturbances (66%) in the six weeks prior to the survey. Women were more likely to experience these symptoms than men, with the exception of experiencing a reduced interest or pleasure in doing things.
Respondents who reported experiencing frequent mood disruptions (anxiety, worry, depression, reduced interest, sleep disturbances or isolation) during the pandemic where asked to explain why.
Anxiety was most often attributed to the fear of respondents getting infected (22%) and not knowing when COVID-19 would be resolved (13%).
Depression was most often attributed to the inability to see or have physical contact with family and friends (16%) and having a history a depression unrelated to COVID-19 (12%).
Loss of interest was most often attributed to not leaving the house (14%), having lost interest and apathy prior to COVID-19 (14%) and hopelessness or negative feelings about the future (13%).
Sleep problems were attributed to problems not related to COVID-19 (36%) or worry related to COVID-19 (34%).
Physical and Social Activities
Most people with PD (85%) felt that their personal life had changed during the COVID-19 pandemic. Nearly half of people with Parkinson’s noticed some negative change in their Parkinson’s symptoms during the pandemic, but most people with PD said they had no negative change in their relationship with members of their household (65%) or the frequency of their communication with others (75%).
Almost half of People with Parkinson’s (45%) reported reduced hours of exercise, and 73% reported a reduction in activities outside of their home. However, most respondents reported that activities were available online (82%), among whom 92% participated. The most common virtual sessions attended included exercise/wellness class (58%), support groups (32%), recreational classes (13%, religious services (46%), educational events (36%) and other (22%).
As a response to COVID-19, to help ease the challenges of physical distancing, the Parkinson’s Foundation launched PD Health @ Home ― an interactive series of virtual events designed for the Parkinson’s community. To date, more than 230,800 participants have participated in the virtual programming. Currently, PD Health hosts innovative weekly expert-led educational webinars, guided mindfulness sessions and tailored fitness videos. See all upcoming PD Health @ Home events.
Telehealth
This survey measured the use of telehealth services for people with PD during COVID-19. Telehealth use increased from 10% prior to the pandemic to 64% during the pandemic. Those with higher income and higher education were associated with telehealth use.
People used telehealth most often for a doctor’s appointment compared to other health therapies (mental health, physical therapy, occupational therapy and speech and language pathology). Among those who had utilized services, almost half (46%) preferred to continue using telehealth always or sometimes after the coronavirus outbreak had ended. However, having received support or instruction for telehealth and having a care partner, friend, or family member help with the telehealth visit increased the likelihood of using telehealth after the pandemic ended.
Key Takeaways
While better understanding the COVID-19 experiences of people with PD, looking at the bigger picture, survey results suggest several urgent unmet community needs.
Telemedicine or telehealth: the distribution of health-related services and information using technology. Prepare for your next telemedicine appointment with this blog article.
The most notable shift within the PD community is the widespread use of telehealth. Telehealth use significantly increased 54% during the COVID-19 pandemic. However, results made it clear that the PD community urgently needs the expansion of telehealth services to include additional physical, occupational psychological and speech therapies, along with more support for how to use telehealth services and better reaching underserved (low income) populations.
New strategies must be developed to make telemedicine more available to all prospective users. The COVID-19 pandemic has differentially impacted people from lower socioeconomic status and extending telemedicine services to economically disadvantaged populations may help reduce disparities.
Depression and anxiety symptoms were prevalent in people with PD during the pandemic. Household income and employment status were found to be important factors in predicting mood disturbances. Our data strongly suggest disparities across socioeconomic status in people with PD during the COVID-19 pandemic, with those of lower income far more affected by financial and employment uncertainties. Interestingly, factors such as location and local COVID-19 rates were not associated with mood symptoms. This suggests that communities deemed at lower risk of spread are not immune from the overwhelming influence of the COVID-19 pandemic on everyday life.
We must further explore the relationship between PD and COVID-19. Given the uncertainty of how long the hardship of COVID-19 and social distancing requirements may persist, we must identify ways to help the PD community throughout this period. Gathering accurate data on COVID-19 risk among people with PD and improving telemedicine by providing a wider range of services and making it more accessible is essential.
Weeding Through the Haze: People with Parkinson’s Share Medical Cannabis Experiences
Medical cannabis (or marijuana) is a complementary and alternative therapy of high interest for the Parkinson’s disease (PD) community. The Parkinson’s Foundation believes that this topic should be better understood, and has committed to doing so with a medical marijuana convening and its published guidelines, new articles, interviewing experts on our podcast and most recently, conducting a survey to better understand cannabis use among the PD community.
In the U.S., cannabis has become more widely available for medical and recreational use. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, the Parkinson’s Foundation distributed a survey, Weeding Through the Haze: A Survey on Cannabis Use Among People Living with Parkinson’s, Disease in the U.S., to 7,607 people with PD in January 2020 and analyzed the 1,064 complete responses we received.
“It is important to understand how people with Parkinson’s disease are using cannabis, and whether they are basing their use on evidence-based recommendations or trial and error. This survey will help shed light on the community viewpoints and experiences surrounding cannabis use for Parkinson’s disease symptoms,” said Megan Feeney, MPH, Parkinson’s Foundation Associate Director of Community Engagement and survey lead.
Medical Cannabis and Parkinson’s
Managing Parkinson’s is complex. As the neurodegenerative disease progresses, so do its symptoms for most. Many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. Many people with Parkinson’s have looked to medical cannabis to provide some relief. However, more research is needed to prove if and how PD symptoms are relieved when using cannabis, and if so, what type of cannabis and what dosage are most effective and safe for the consumer.
Nevertheless, there is an increasing interest in the use of medical cannabis. Currently, 47 of 50 states in the U.S. permit the sale or consumption of hemp-sourced cannabidiol (CBD) products with less than 0.3% tetrahydrocannabinol (THC), while 35 of 50 states have approved marijuana for medicinal purposes and 15 of 50 states permit recreational use of marijuana. Today, broad numbers of people with PD have access to cannabis.
Survey Results
The 1,064 survey respondents came from 49 states. The average age for respondents was 71, and the average time they have lived with Parkinson’s is seven years. The survey asked specific questions about cannabis use ― from symptom management to motivation for use and side effects ― and questions for those who do not use cannabis and why.
Experiences with Cannabis and Managing PD
Of the respondents who consumed cannabis:
25% used cannabis within the previous six months.
57% learned about cannabis use from the internet, friends or other people with PD.
64% had not received a cannabis recommendation from a licensed doctor or provider.
56% were not provided any information on how to use cannabis (such as dosage, type and frequency of use).
Most consumers reported their most common time of cannabis use is either in the evening or at bedtime.
Interestingly, 23% of consumers stated they stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement. Of note, 76% of respondents did not use cannabis, primarily because there was a lack of scientific evidence supporting any benefits.
Experiences with Cannabis and Managing PD Symptoms
Among respondents, cannabis was used to treat motor and non-motor symptoms. When asked about associated symptom relief, most consumers reported that cannabis use led to a moderate or considerable improvement in the severity of anxiety, pain, sleep disorders, stiffness and tremor. Overall use and the level to which cannabis was reported to address motor and non-motor symptoms varied widely.
Negative Side Effects
Less than 13% of consumers reported negative side effects from cannabis use. We also asked non-consumers of cannabis if they had experienced any previous negative cannabis experience. Of these, about half reported negative side effects.
Combined, both groups listed their negative side effects as an increase in anxiety (30%), impaired coordination (20%), dizziness (20%) and “other reasons” (38%), which included sleepiness, confusion, worsening orthostatic hypotension.
PD Medication and Cannabis Consumption
Cannabis consumers rated non-motor prescription medications as less efficacious than non-consumers. Among all consumers, 85% reported that cannabis use had no impact on their prescription medication usage, and 89% said cannabis was not a replacement for their PD prescription medications.
Clinical Trials
Among all who responded, 82% were interested in learning more information about a clinical trial exploring the impact of cannabis on PD symptoms, and 62% were interested in enrolling in a clinical trial.
Key Takeaways
While better understanding cannabis experiences of people with PD, looking at the bigger picture, survey results show that:
A knowledge gap among people living with PD, which may be impacting their decisions about cannabis use, as a large portion of consumers reported not knowing the type, brand or dosage of cannabis they primarily use.
Among some consumers, reported cannabis use may have been beneficial for motor and non-motor PD symptoms including anxiety, pain, sleep disorders, stiffness and tremor. This is consistent with other research studies.
One in five survey respondents are current cannabis consumers.
Cannabis use did not have an impact on PD prescription medications.
Cannabis consumers see the limited effectiveness of cannabis for symptom management. Most consumers recognize that cannabis is not a substitute for their PD medications.
Learn More
Learn more about Parkinson’s and medical cannabis in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
New Study: Parkinson's Foundation Center of Excellence Sheds Light on COVID Vaccine and Parkinson's
Life as we knew it changed on January 30, 2020. That was that day when the World Health Organization (WHO) officially declared the COVID-19 outbreak to be a Public Health Emergency of International Concern. Caused by Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), COVID-19 can result in serious, life-threatening complications, regardless of one’s age, race, health status, geographical location, or socio-economic income and including people with Parkinson’s disease. In this article, we’ll examine a new study from a Parkinson’s Foundation Center of Excellence, Nijmegen Parkinson’s Center in the Netherlands, which recommends the COVID-19 vaccination for people with Parkinson’s, unless there is a specific contraindication.
Overall, we know that people with PD who contract COVID-19 are more likely to experience severe respiratory issues and have more difficulty recovering from COVID-19 – particularly among those with advanced PD, compared to people who do not have PD. Another additional concern for those with PD is that COVID-19 may trigger a worsening of both motor and non-motor symptoms and also may increase the risks of mental health challenges. These mental health challenges are known to be higher for people with PD living under social isolation, higher stress levels and without adequate exercise.
Expert commentary recently published in the Journal of Parkinson’s Disease, titled, “COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel?” (Bloem et al., 2021), tackles the question of getting the COVID-19 vaccine for people with Parkinson’s using a scientific, evidence-based approach. Bas Bloem, MD, PhD, works at the Radboud University Nijmegen Medical Centre, a Parkinson’s Foundation Center of Excellence. The Nijmegen Parkinson Center is one 14 international Centers of Excellence and 33 others in the United States.
These experts closely studied the development and approval processes – including the thorough analyses of completed Phase III data as provided by vaccine developers in a transparent process with peer-reviewed publication of the full data sets. In other words, Bloem et al. (2021) were privy to all of the actual data, not just cherry-picked data. Additional COVID-19 vaccination information was provided by the Scientific Issues Committee (IPMDS-SIC) of the International Parkinson and Movement Disorder Society.
Results
Compared to the general population, the risk of SARS-CoV-2 infection causing serious, life-threatening disease seems higher for people living with PD, at least among those with more advanced disease.
The approved mRNA-based vaccines are not known or expected to interact with the PD neurodegenerative process.
COVID-19 vaccination is not known to interfere with the current PD therapies.
The types or incidence of side effects of these vaccines in persons with PD were observed to be no different than in the general population – pain and irritation at the injection site, fatigue, muscle pain, headache, low fever/chills.
The vaccines were observed to be safe for older adults, however caution is needed for the specific subgroup of very frail and terminally ill elderly persons with PD living in long-term care facilities; or for people with PD who have additional chronic illnesses.
Taken together, (Bloem et al., 2021) recommend COVID-19 vaccination with approved vaccines for persons with PD, unless there is a specific contraindication.
Vaccinated persons with PD must continue to comply with the public health guidelines to reduce exposure and to possibly reduce transmission of COVID-19.
Insights may change, conscious monitoring of newly emerging data from both trials and real-life vaccination programs is critical.
The authors did not examine the recently US FDA approved vaccine produced by Johnson & Johnson so persons with Parkinson’s and family members should not extrapolate the data from this recent study to apply to the new single dose vaccine. Hopefully more information on this approach will be available soon.
Key Facts about COVID-19 Vaccines
1. Vaccines do not use the live virus that causes COVID-19. The new Johnson & Johnson vaccine uses DNA and not RNA and uses an adenovirus (not the corona virus) to deliver the information necessary to protect against COVID-19.
2. Vaccines cannot give someone COVID-19
3. Vaccines do not interact or affect our DNA in any way
4. Vaccines never enter the nucleus of the cell – which is where our DNA (genetic material) is stored
What Does It Mean?
Both the Pfizer/BioNTech and Moderna mRNA vaccines met the high standards required for use authorization after rigorous data scrutiny and validation – as required in the normal US FDA vaccine approval process. This process is essential in determining not only safety and efficacy, but also that the vaccine benefits outweigh its risks. Today, in the United States, the death toll from COVID-19 topped 500,000 people; worldwide, it has been associated with more than 2,462,000 deaths.
Based upon the available data, the incidence of side effects in persons with PD have not been different than in the general population. The approved mRNA-based vaccines, Pfizer/BioNTech and Moderna:
do not interact with the neurodegenerative process in PD
have been shown to be highly effective in preventing the severe and even the mild forms of the disease
help the body more rapidly clear the infection. High efficacy (>90%) has been demonstrated regardless of race, gender, age, and medical conditions. How big of deal is greater than 90 percent efficacy? During the 2019-20 flu season in the United States, the overall effectiveness of the seasonal flu vaccine in children and adults was about 45 percent.
In their MDS COVID-19 Vaccine Statement for Patients, the International Parkinson and Movement Disorder Society and its Scientific Issues Committee included the following, “All considered, we have encouraged our community of health specialists to recommend COVID-19 vaccination to their patients with PD (or their responsible caregivers) unless there is a specific reason that precludes administration. We also recommend that patients come forward to seek the vaccine as quickly as it is available.”
Finally, as stated by the experts, Bloem et al., (2021), even after being fully vaccinated, it is important that persons with PD continue complying with the public health guidelines to reduce exposure and transmission of COVID-19 as recommended by WHO and the CDC.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Covid-19 and PD by vising 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.
Bloem, B. R., Trenkwalder, C., Sanchez-Ferro, A., Kalia, L. V., Alcalay, R., Chiang, H. L., . . . Papa, S. M. (2021). COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel? J Parkinsons Dis, 11(1), 3-8. doi:10.3233/JPD-212573
Pardi, N., Hogan, M. J., Porter, F. W., & Weissman, D. (2018). mRNA vaccines - a new era in vaccinology. Nat Rev Drug Discov, 17(4), 261-279. doi:10.1038/nrd.2017.243
Shimabukuro, T., & Nair, N. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Pfizer-BioNTech COVID-19 Vaccine. JAMA. doi:10.1001/jama.2021.0600
Team, C. C.-R., Food, & Drug, A. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Moderna COVID-19 Vaccine - United States, December 21, 2020-January 10, 2021. MMWR Morb Mortal Wkly Rep, 70(4), 125-129. doi:10.15585/mmwr.mm7004e1
6 Ways the Parkinson's Foundation is Changing Genetic Testing
The newest signature initiative from the Parkinson’s Foundation is not only the first bilingual study to offer genetic testing and genetic counseling in English and Spanish at no cost for people with Parkinson’s disease (PD), but it is already making waves in the research world.
PD GENEration: Mapping the Future of Parkinson’s Disease is a national effort that will ultimately lead to improved treatments and care for all people with Parkinson’s. What many might not know is that through its design and launch, the study and results of its comprehensive genetics testing panel have already made major impacts for the PD research community:
1. Leading the way in Parkinson’s-specific genetic counseling.
PD GENEration is a unique study that focuses on delivering PD-specific genetics counseling to place results into context for those with PD. Many PD genetic tests do not offer genetic counseling. The Parkinson’s Foundation together with the Indiana University School of Medicine, a Parkinson’s Foundation Centers of Excellence, developed the gold standard for genetic test reports. With feedback from the Parkinson’s community, these reports are tailored so that they can be easily and effectively used by people with Parkinson’s and their doctors.
This gold standard report sets the bar for the type and clarity of information that should be included in a PD genetic test report. Working in conjunction with genetic counseling, PD GENEration participants will understand what their genetic test results mean to them, how these results may or may not affect their family, and how to share results with family members. Already this approach has created a major impact on clinical care by raising standards to ensure that clinicians and people with PD are receiving the highest quality of genetic counseling in the Parkinson’s field.
2. Launched the most comprehensive Parkinson’s-specific at-home test.
Created by the Parkinson’s Foundation, in partnership with Fulgent Genetics, the PD GENEration at-home and in-person tests use state-of-the art technology that comprehensively analyzes seven key Parkinson’s genes. This includes the two most common PD genes: LRRK2 and GBA.
Many genetic tests only scratch the surface, testing for a few known, primary genetic mutations. “It is important for genetic tests to have the capability to detect every possible mutation in a single gene not just one or two. Searching for only the known mutations limits scientific research to discover information that we already know. The goal of PD GENEration’s comprehensive full gene testing is to discover new information to help accelerate research and our understanding of PD,” said James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation.
3. Established first-ever international expert panel on Parkinson’s genetics.
Through PD GENEration, the Parkinson’s Foundation has already made a tremendous impact in the genetics field. The Parkinson’s Foundation has been appointed by the National Institutes of Health (NIH) to lead an international team of experts to focus on Parkinson’s disease genetics. As a result, the Parkinson’s Foundation serves as the founding chair of what is known as a Parkinson's Disease Gene Curation Expert Panel.
Under the Foundation’s leadership, the Parkinson's Disease Gene Curation Expert Panel has convened more than 40 of the world’s leading researchers in Parkinson’s genetics to analyze PD GENEration and other genetic data with the hope of accelerating breakthrough discoveries. The Parkinson’s Disease Gene Curation Expert Panel is important because the U.S Food and Drug Administration (FDA) relies on these expert panels across diseases to determine which genes are important for a particular disease which, in turn, helps guide drug approvals and inform drug companies to prioritize certain genetic targets.
4. Accelerating PD Clinical Trial Recruitment.
Today, knowledge of a genetic PD mutation can help determine if a person qualifies for the latest clinical trials. Many of the industry’s leading pharmaceutical companies are interested in pursuing gene-targeted trials. PD GENEration helps accelerate clinical trial timelines by identifying people with Parkinson’s who may be eligible to participate in these clinical trials.
Recruiting people into a clinical trial can take two years or longer, on average. By identifying trial-ready participants, PD GENEration has the potential to increase the flow of participants into clinical studies that urgently need them. The ultimate result will be to speed promising medications into the hands of those with PD sooner. Reducing the time it takes to run clinical trials means reducing the overall cost of the trial. Lower costs means lower risk on the investment from companies to help develop new therapies for PD. The lower the risk to invest, the greater the interest for top pharmaceutical companies and researchers to prioritize Parkinson’s drug development.
5. Working to improve standard of Parkinson’s care.
PD GENEration’s goal is to improve the standard of Parkinson’s care. In the near future, the hope is that everyone diagnosed with Parkinson’s will receive genetic testing. For those who may have PD-related genetic mutation, doctors will be able to create a specific treatment plan that will respond best to their type of genetically connected Parkinson’s.
“We are aiming to offer a new, more efficient standard of care that every doctor can use as a starting point when treating people with Parkinson’s,” said Anna Naito, PhD, Associate Vice President of Clinical Research. “While Parkinson’s Foundation Centers of Excellence will be leaders in the PD field to offer this new, improved standard of care, our goal is to provide all doctors with access to provide improved care for their patients.”
6. Building a global PD-genetic database.
All PD GENEration genetic samples are anonymously stored for future research and studies. The Foundation has also partnered with the Global Parkinson’s Genetics Program (GP2) — a world-wide genetics study that hopes to analyze genetic data from 150,000 people with Parkinson’s from all races and backgrounds and is supported by Aligning Science Across Parkinson’s (ASAP).
“All our PD GENEration samples are not only being analyzed by Parkinson’s Foundation researchers, but they are also being analyzed by global scientists and leaders in the genetics and Parkinson’s research fields,” said Dr. Naito. PD GENEration will represent one of the largest contributors of global genetic PD data among North Americans. “We believe this study will get us closer to scientific breakthroughs and better treatments for PD. Sharing this new and constantly evolving data with world experts will allow us to move the research and treatment field forward on a global level,” she added.
New Parkinson’s Foundation Resources Available in Simplified Chinese
The Parkinson’s Foundation believes in providing resources that empower and educate the Parkinson’s disease (PD) community. To bring more resources to our Chinese-speaking community, we have translated multiple fact sheets:
Parkinson’s Foundation volunteers play various roles, using their knowledge, skills and passions to help the Foundation further our mission to make life better for people with Parkinson’s. Thanks to Howe Liu, MD, PhD, and his team who volunteered to translate our most popular fact sheets, we now have new Mandarin Chinese translations that can be utilized by the Mandarin Chinese-speaking community worldwide.
The Parkinson’s Foundation would like to thank Dr. Howe and his team: Dr. Gong, Weijun (Beijing Rehabilitation Hospital); Dr. Qiao, Hongfei (Second Affiliated Hospital of Xi'an Jiaotong University); Dr. Zhao, Mingming (Guangxi Jiangbin Hospital); Dr. Li, Yinzhi (Second Affiliated Hospital of Yunnan University of Traditional Chinese Medicine); and Dr. Lu, Yujin (First People's Hospital of Shanghai).
As the Pfizer/BioNTech, Moderna and Johnson & Johnson COVID-19 vaccines become more widely available across the United States, and data shows vaccine safety and benefit in those with Parkinson’s disease (PD), people are looking to brighter days ahead. This Facebook Live was conducted prior to U.S. Centers for Disease Control Announcement (CDC) that they will be pausing Johnson & Johnson vaccines out of an abundance of caution while investigating reports of rare and potentially dangerous blood clots. Dr. Anthony Fauci from NIH has stated that people who have already received the Johnson & Johnson vaccine will still receive the COVID-19 benefits. Continued monitoring for potential blood clots should be performed with your local doctor.
In an April 8 Parkinson’s Foundation Facebook Live event, “Life with Parkinson’s After the Covid-19 Vaccine,” Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, answered questions from the PD community about what post-vaccine life might look like.
“We have seen a categorical worsening of Parkinson’s symptoms during the COVID-19 pandemic and that's because people have been stuck at home without the ability to seek care,” Dr. Okun said. “Vaccines are one of the things that are going to help.”
Dr. Okun: This is one of the safest vaccines that we’ve seen. We have data on tens of thousands of people who have received the available immunizations and how they fared. The safety record has been outstanding. Nonetheless, health authorities continue to track side effects from the vaccines to ensure their ongoing safety. For example, on April 13, the FDA and CDC determined that administrations of the Johnson & Johnson version of the vaccine should be paused so researchers can investigate a possible link between it and blood clots. It should be noted that Johnson & Johnson uses a different type of platform for their vaccine than Moderna and Pfizer. The Moderna and Pfizer vaccines are not affected by the CDC and FDA’s announcement and have not been associated with blood clots.
The most common side effects of the COVID-19 vaccines are short-term, and include:
Headache
Fever
Chills
Nausea
Muscle, joint or injection site pain
Injection site swelling or redness
When these symptoms appear after a shot, they are in general all good things – it means your immune system is working. Long-term side-affects are rare from the vaccine. You have a much greater chance of having a long-term problem from COVID infection than from receiving the vaccine. In fact, although we don’t yet know why, some people living with “long-hauler,” persistent COVID symptoms – lasting fatigue, headaches and other symptoms – are improving after they receive the COVID-19 vaccine.
Dr. Okun: The COVID-19 vaccine does not cause multiple sclerosis or Lou Gehrig’s disease.
Dr. Okun: Our hearts go out to you and to everyone who has lost someone during these times. When we see possible associations to a vaccine, we look carefully at the data. We have not seen a statistical correlation that the vaccine causes death, and we're looking at very large numbers.
During the 1950’s polio epidemic, we had to pause the polio vaccine rollout to look for contaminants because we saw deaths associated with the shot. The problem was with a Cutter Laboratories vaccine that inadvertently contained live polio virus. This created a large-scale change in the way the Food and Drug Administration, and the world, treats vaccine development.
Today, the newest vaccines are designed to send the instructions to your immune system to fight COVID-19. The vaccine teaches your immune system what COVID-19 looks like and how to attack, it if you are infected. We now perform full-scale safety monitoring. If we see a concerning safety pattern, like they saw in 1955 with the polio vaccine, then we pause the program and investigate. Right now, we have paused the Johnson & Johnson vaccine to examine a potential association with blood clots.
Dr. Okun: The vaccine won’t change long-term symptoms, but you may experience short-term side effects, such as those mentioned above. These side effects are common. Your body is responding to the vaccine as the instructions in the vaccine teaches your immune system to make antibodies against COVID-19.
We also know that stress, anxiety and sleep deprivation can all worsen PD symptoms, and getting a vaccine can for some, be a source of anxiety.
Dr Okun: We don’t expect the COVID-19 vaccine to cause or to worsen Parkinson's disease.
When we administer a vaccine for any disease, we focus heavily on documentation – what we call case report forms. Every time we give a vaccine, if somebody reports something, we write it down on one of these case report forms. Regulatory authorities monitor these reports. We've also enrolled a lot of people in long-term studies to monitor how the vaccine will affect people over time.
PD is not an expected vaccine side effect, but if it did happen – if somebody sort of popped up with Parkinson's – then we would want to know about that emerging issue- and we would definitely document it.
It's amazing to think about the large number of people that have been vaccinated so far in this program without major statistical problems – it's breathtaking in terms of the number of lives that have been saved.
Dr. Okun: Moderna and Pfizer vaccines have a very similar safety record, and researchers are investigating a possible link between the Johnson & Johnson vaccine and blood clots that have been reported in six women between the ages of 18 and 48. The Pfizer and Moderna vaccines require two shots, while the Johnson & Johnson vaccine only requires one. In general, we seem to get more effectiveness against COVID-19 using a two-shot approach – but all three are effective in preventing the long-term side effects of COVID-19 and preventing hospitalizations as well as death. The Johnson & Johnson vaccine program is currently paused so researchers can investigate a possible link between it and blood clots.
Dr. Okun: We don't have the exact answer to that question, but we're starting to get some clarity. If you had COVID-19 you should still be vaccinated. The Centers for Disease Control (CDC) is looking at this question. We don’t know how long it’s safe to not be vaccinated after you’ve recovered from COVID-19 or how long does the protection last. We are assessing whether an unvaccinated previously affected person can be with someone who's vaccinated and for how long they may get protection from having had the actual COVID-19 virus.
We have seen people with COVID-19 infection who do not have antibodies a few months down the road. The CDC is examining this issue but in general we recommend that people with Parkinson’s who had COVID-19 get vaccinated 6-8 weeks after the infection. This may change with more guidance from the CDC.
Things are evolving quickly in the field and we want to make sure that we get you as much information as we can in-real time, so be sure to frequently check Parkinson.org/COVID19 for updates on the COVID-19 vaccination.
Dr. Okun: The highest COVID-19 mortality rates are among the elderly, so many countries – including the United States, Europe and the Netherlands – have prioritized vaccinations in people over 65. Many of the elderly population reside in nursing homes. The vaccine makes a lot of sense for most cases of elderly people and for people at nursing homes.
The Dutch study is specifically referring to handful of rare exceptions – extremely frail or terminally ill people, or those who don’t want their lives prolonged. There are also a group of people who cannot consent due to memory loss and dementia.
It’s important to talk to your doctor. It’s also important to have the conversation: “What do you think this person would want us to do if they had capacity to consent?” If the goal is prolonging life and preventing COVID-19, the vaccination might be the answer. For people who are terminally ill, very frail and at the end of life, you could make an argument that you should talk about it before administering a vaccine that could prolong their life.
Dr. Okun: I wrote an op-ed for The Daily Beast a couple of months ago on exactly this question. We’re calling for an “Operation Warp Speed” for Parkinson’s disease – just like the national program that drove the rapid COVID-19 vaccine development. The National Institutes of Health (NIH), the world’s largest funder of medical research, sequenced the genetic information for COVID-19 shortly after the first case was documented in December 2019. The institution then shared the information with pharmaceutical and biotechnology companies like Moderna to quickly develop vaccines.
Not only did the industry make some of the more old-fashioned vaccines (like the flu vaccine) to protect against COVID-19, but a lot of our medical researchers were also previously working on a technology called messenger RNA (or mRNA) vaccines (intended to create and deliver specific immune system defense instructions). They were able to use this technology to create successful COVID-19 vaccines, thanks largely to prior research on viruses supported by NIH and other funders across the globe.
Dr. Okun: The Moderna and the Pfizer vaccines – with an overall efficacy of 94% and 95% – were designed as two-shot vaccines and they were tested in clinical trials as a two shot approach; they are messenger RNA (or mRNA) vaccines, which use single-stranded RNA technology to create a COVID-19 defense. The Johnson & Johnson vaccine has a 66% efficacy (but the same effectiveness at preventing hospitalization and mortality as the other two vaccines) and uses DNA technology to deliver the instructions to fight COVID-19. It was designed as a single shot.
We don't know whether two shots of the Johnson & Johnson would increase its efficacy up to where the Moderna and the Pfizer vaccines are, but all three – including the single-shot vaccine – are keeping people out of the hospital.
Dr Okun: As more data comes for each of the vaccines, we will be able to answer this question individually as it may differ. The hope is that you'll get at least a year of protection. The data on people who are in vaccine trials will tell us more about the length of protection.
Examining the length of protection of the vaccine is tricky because viruses like COVID-19 mutate to survive. The B.1.1.7 coronavirus variant – first identified in the U.K. – is the dominant strain of COVID in the U.S. today, different from the dominant strain that was here in March. We might need to administer the COVID-19 vaccine annually based on what we think the dominant strain will be, much like we do with the flu vaccine. We will need a strategy and it will likely include yearly vaccines for years to come.
Dr Okun: We can convince more people to consider the vaccine by starting out on the right foot. We have to respect each other’s points of view.
It's OK for people to be scared – it's OK to question whether the safety record is there. You should be doing that. We now know that people who are vaccinated very rarely die of COVID-19-related complications – statistically close to zero. I think that's a powerful fact.
Almost everybody wants the information. If you can share the information with them and have a positive dialogue and respect their points of view, I think more people will come around to the vaccine, particularly as the safety record continues to evolve. Sharing with people that you respect their decision and that you are grateful to have a dialogue will take us farther in overcoming vaccine hesitancy than shouting and fighting.
Dr Okun: Mutations are very common in coronaviruses. Sometimes the mutations are easier to treat and sometimes they're harder to treat. The vaccine is still active, but the longer we give the virus to continue to mutate the worse chance we have of beating this thing. This is why it’s important for us to get our vaccines, put our masks on and distance. If we don't do these things and we let this virus crawl back in, and keep mutating, eventually it could beat the vaccinations. That's why it's so important for us to continue masking even though we are vaccinating.
Dr. Okun: If you are fully vaccinated, current CDC guidelines say yes, you can gather indoors – without masks or staying 6 feet away – with vaccinated (and in some cases unvaccinated) people from one other household. It’s important to be sure none of them is at risk for severe illness from COVID-19. They can still give you COVID, although you may end up being asymptomatic, because you’re vaccinated. We still don't know if you could carry it back to them, but it's a theoretical possibility. It’s probably safest to wear a mask, but certainly some quick, masked hugs are OK. Social contact is really important, but maintaining small social groups, socially distancing and keeping your mask on are all critically important too.
Learn More
The Parkinson’s Foundation is committed to keeping you up to date on the latest COVID-19 and PD developments at Parkinson.org/COVID.
Call our free Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
