Every year Dick Field invites his family on an adventure. “We try to take all our grandchildren to interesting places,” Dick said. Their adventures took on a new meaning — and some modifications — when Dick was diagnosed with Parkinson’s disease (PD).
After going to Africa, the family set their sights on Iceland in 2017, where icy terrain proved to be challenging. “It was a difficult trip and I could not complete the journey,” Dick said. So, in 2018, Dick better prepared himself physically and invited the family to join him in southern Spain, for a hike — with a purpose.
Full of history and culture, Dick challenged each of his family members to climb the Rock of Gibraltar, together "I will give the Parkinson's Foundation a thousand dollars for each of you who make it to the top," Dick told his children and six grandchildren. Everyone was motivated and ready to go.
Dick prepared by timing his medication and packing his walking stick. When traveling with six children, there was a steady supply of snacks. He also planned his path. “There are two sides of the climb, one is a sheer drop and one is a more gradual climb, like climbing the lower part of the Rockies," Dick said. "Guess what side our family selected?”
From eight years old to 78, the family of 12 began their ascent. "We arrived early so that we had the climb to ourselves," he said.
“It was a beautiful day and the Mediterranean was sparkling blue,” he said. The Field family set their own pace, stopping to meet a variety of interesting groups along the way. “The climb attracts so many types of people my grandchildren were able to meet,” he said.
It took four hours to reach the 1,388-foot elevation. “I felt elated when I got to the top,” he said. “Elated that I’m still able to do this kind of stuff.” From the top they were able to see Morocco, Spain and France. The family took it in and began their descent, making memories and taking photos along the way.
Dick’s grandchildren are no strangers to Parkinson’s, as another close family member is also living with PD. “They are all aware of Parkinson’s disease and knew it’s why we were climbing,” Dick said. “They now all have a newfound sense of different ways you can contribute to a non-profit.”
Serving as a Parkinson’s Foundation board member since 2013, Dick believes in the Foundation and has both helped and received help from the Foundation.
“Many People who have been diagnosed don’t know what to do,” he said. “Simultaneously, many movement disorder specialists don’t have the time or inclination to take deep dives with their patients to discuss this disease. At the Foundation, we’re setting new standards to help more people, especially through our Centers of Excellence, which provide a detailed action plan for managing your disease.”
“The focus of the Foundation is cure and care. Everyone who works at or together with the Foundation is on the right track, coming together to further Parkinson’s research,” Dick said.
Dick and his family are now setting their sight on a new adventure in 2019. He won’t let his Parkinson’s slow him down.
Like the Field’s family, if you are interested in raising awareness for the Parkinson’s Foundation through a Do-It-Yourself fundraiser learn more and Parkinson.org/Champions.
My journey into researching Parkinson’s disease (PD) started in 2015 when I travelled to Tanzania to understand what life was like for people living with PD with almost no access to medication or support. This project was part of my Master of Science degree in Global Health (MSc) and the experience that kick-started my passion to pursue a doctorate where I could contribute more to the limited research on PD in Africa.
My PhD took me to Kenya, a lower-middle income country on the East coast of Africa, which happened to also be the place I call ‘home.’ Growing up in Kenya opened my eyes to the difficulties so many people face in terms of poverty and poor access to affordable healthcare. Since leaving Kenya for my later school years and then University in England, I always wanted to return and make a difference.
My PhD explored the lived experiences of people with PD, and their families, in Kenya. I wanted to understand what challenges people with PD had from obtaining a diagnosis, managing their condition, through to the end of life; the complete journey of PD in Kenya. This experience involved many happy memories, but also so much sadness as I witnessed physical and emotional suffering. So many of the people with PD I met could not afford medication and spent months un-medicated, many had not even been told they had PD, nor did they know how to manage their symptoms.
While in Kenya, I came across the Parkinson’s Support Group in Nairobi, a group of 20-40 people that met once a month in a church classroom. The group was established by people who wanted to meet others with PD and provided information, education, social support and resources to anyone who needed them.
I became involved with meetings, joined their WhatsApp group and even replicated the work they were doing in my hometown, Mombasa. Kenya now has two active support groups. I also became very involved with Africa Parkinson’s Disease Foundation, a Non-governmental organization (NGO) based in Kenya established by Hellen Mwithiga, which supports people with PD, their families and caregivers.
Hellen offered me the opportunity to attend the Leadership Forum of the World Parkinson’s Congress in Kyoto in 2019 to talk about the situation of PD in Africa. This is where I had the opportunity to meet so many wonderful people and organizations working to help people with PD, including the Parkinson’s Foundation. The team was kind enough to donate a bag of wristbands for the groups in Kenya. The Parkinson’s Foundation has been very supportive and allowed me to use their resources to develop educational material in Kiswahili, Kenya’s main language. I have continued to work with the World Parkinson’s Coalition’s working groups, specifically to build global relations with PD and make information resources available to people with PD globally.
I have had the opportunity to travel to several international PD conferences to present my research. Yet, at every conference I note the scarcity of research from Africa, or much of the ‘developing world.’ This is something I want to help change. In 2019, I was invited by the Movement Disorders Society to teach on a training course for physicians and allied health professionals in Tanzania. I have also been invited by the World Health Organization to attend and contribute to a PD consultation workshop to address global policy, implementation considerations and the research agenda for PD. I am constantly looking to build networks and connections with researchers globally to think of new ways and ideas to help people with PD in Africa.
I have tried to be as involved as I can with the Parkinson’s patient community too. I have joined the PD Avengers and I am involved with two working groups, one aimed at improving patient involvement in research, and another looking at wellbeing and global equity.
More recently, I have been involved with the non-profit organization Parkinson’s Africa, founded by Omotola Thomas to connect Africans impacted by PD to the information, education, support and resources they need. Importantly, Parkinson’s Africa wants to overcome the stigma often associated with PD and change public perception towards people with PD.
Although I am not directly affected by PD, my research experience and my interactions with people with PD from all over the world have made me want to help in any way I can. The PD community is wonderful and my advice to anyone newly diagnosed would be to get involved and learn as much as you can. There are so many inspirational people out there.
Hanah and her grandmother, Pamela, live in Williamsport, IN. Hanah is 17 and will be starting her Senior year of high school, and she recently donated $2,111 to the Indiana University School of Medicine, a Parkinson’s Foundation Center of Excellence as a thank you for how they have changed her grandmother’s life since her Parkinson’s disease (PD) diagnosis.
“I’ve always wanted to do something for my grandma because she always supports me,” Hanah said. “Originally, I was going to do something small, but the more research I did, the more excited I got. I realized how much Parkinson’s research still needs to be done.”
Hanah launched a fundraising campaign with the support of her school. She raised money through hosting 50/50 raffles at basketball and football games. “Some people even donated their raffle winnings back to the PD fundraiser,” Hanah said.
She also hosted pocket change collections at school and at school events. At her local elementary school she hosted a “Penny War.” Each grade was given two buckets: one for pennies and one for anything larger. Pennies counted as positive and anything larger counted as negative. So, when you add pennies to your grade’s bucket it is a positive. When another grade looks like they are gaining a lead, you add larger coins/dollars to make them go negative.
She also was interviewed several times by George Hardibeck, a local radio show host for the rival high school’s games. He donated $100 to her fundraiser every interview.
While she was managing her intricate fundraiser, she also collected 300 shoes to donate to a domestic violence shelter, and collected 2,692 medicine bottles to donate them to Mathew 25 Ministries, an organization that sends pill bottles to other countries who do not have the resources to make pill bottles and reuses them.
When asked what prompted her interest in raising money for Parkinson’s disease, she said, “Personally, the disease really changed my grandma before she underwent deep brain stimulation (DBS) surgery. She couldn’t drive or come watch me cheer ― she was a different person. After the surgery, she was able to be herself again. I wanted to do something to honor her and make her happy.”
When asked why Indiana University School of Medicine, where her grandmother receives PD treatment, she said, “I want the money to go to research. I like knowing it is going to a place that has helped my grandmother so much on a personal basis.”
Hanah hopes to attend Indiana University and study chemistry.
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
