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.
Did you know our books are now available on Kindle? Read all 12 of our books using your Kindle or Kindle app on your tablet. Every book is written and designed to make life a little easier for people with Parkinson’s disease (PD), caregivers and family members.
Check out all of our books available on Kindle now:
These books in Spanish are also available on Kindle:
Not sure where to begin? Talk to a Helpline specialist for personalized book and resource suggestions. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.
Study Examines Connection Between Diabetes Medication and Parkinson's Disease
It was first suggested in the 1960’s that people with type-2 diabetes are at increased risk for developing Parkinson's disease (PD) – and when they do develop PD, its progression is faster and often more severe. This may be due, in part, to an apparent relationship in the brain between dopamine, insulin resistance, and glucose control. Insulin is not only made in the pancreas, it’s also present in the brain – where it has been shown to impact dopamine levels.
Parkinson’s is generally believed by scientists to be caused by the loss of dopamine-producing neurons. Parkinson’s symptoms, such as slowness, rigidity, and tremor, typically develop after approximately 40-80% of these dopamine-producing neurons die.
Why does this matter? Currently, more than 30 million people in the United States have type-2 diabetes, and that number is growing. The lifetime risk of developing Parkinson's is also on the rise. In light of these trends, it would be valuable to know whether any specific type-2 diabetes medications might be associated with an increased or decreased risk for developing PD.
A 40-month cohort study of over 100,000 patients with diabetes (Brauer et al., 2020) published in the journal, Brain, titled “Diabetes medications and risk of Parkinson's disease” examined the association between type-2 diabetes medications and the risk of developing Parkinson’s. Using patient medical records, the study authors compared the risk of developing PD in patients diagnosed with type-2 diabetes who took the following oral diabetes medications in various combinations:
1) Thiazolidinediones (also called glitazones), like pioglitazone (Actos) or rosiglitazone (Avandia), which specifically target insulin resistance
2) Drugs, like albiglutide (Tanzeum) or dulaglutide (Trulicity), that mimick glucagon-like peptide-1 (GLP-1) a hormone that promotes insulin secretion, and
3) Dipeptidyl peptidase 4 (DPP4) inhibitors, which increase GLP-1 levels, and lead to insulin secretion and lowering of blood sugar levels
The control (comparison) group were those individuals prescribed any other oral combination therapy for diabetes, such as metformin and sulfonylureas.
A wide variety of sophisticated mathematical analyses were conducted – with age, gender, smoking status, body mass index (BMI), and other known diabetes risk factors taken into account.
Results
The rate of Parkinson’s disease was 36–60% lower in the people who took DPP4 inhibitors and/or GLP-1 receptor agonists.
There was no evidence of any association between the use of glitazones and Parkinson’s disease.
No other medication or combination of medications demonstrated any statistically significant effect.
What Does This Mean?
In this large population-based cohort study, taking the medications DPP4 inhibitors and/or GLP-1 receptor agonists was associated with a lower rate of Parkinson’s disease. Based upon these findings of the possible protective effect of these medications, further studies are warranted and are currently underway. However, it is also important to note that an association is not the same as a causation. There may be other factors associated with taking certain type-2 diabetes medications that influence Parkinson’s risk.
Additionally, as noted by the study authors, while the results of this study may be useful for clinicians to take into account when choosing oral medications for treating diabetes, these preliminary results, “[…]cannot inform on the usefulness of specific drug classes on the rate of progression of Parkinson’s disease after diagnosis, nor on their efficacy among patients with Parkinson’s disease in the absence of diabetes" (Brauer et al., 2020, p. 3075). In other words, it’s too soon to tell, but the next phase of their research is already underway, where hopefully more definitive answers will be found.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and diabetes by visiting the below Parkinson’s Foundation resources, or by calling our Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
Brauer, R., Wei, L., Ma, T., Athauda, D., Girges, C., Vijiaratnam, N., . . . Foltynie, T. (2020). Diabetes medications and risk of Parkinson's disease: a cohort study of patients with diabetes. Brain, 143(10), 3067-3076. doi:10.1093/brain/awaa262
Cheong, J. L. Y., de Pablo-Fernandez, E., Foltynie, T., & Noyce, A. J. (2020). The Association Between Type 2 Diabetes Mellitus and Parkinson's Disease. J Parkinsons Dis, 10(3), 775-789. doi:10.3233/JPD-191900
Lima, M. M., Targa, A. D., Noseda, A. C., Rodrigues, L. S., Delattre, A. M., dos Santos, F. V., . . . Ferraz, A. C. (2014). Does Parkinson's disease and type-2 diabetes mellitus present common pathophysiological mechanisms and treatments? CNS Neurol Disord Drug Targets, 13(3), 418-428.
Raising Awareness: The LGBTQ+ Parkinson’s Community Needs Better Care
Imagine being diagnosed with an incurable neurological disease, but afraid to reveal your identity because you might be denied care or enrollment in a clinical trial. Unfortunately, for many within the LGBTQ+ population living with Parkinson’s disease (PD), this is a common reality. Chi-Ying Roy Lin, MD, MPH, is an incoming neurologist at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, who is advocating for the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) Parkinson’s community through research.
In his previous role as a Parkinson's Foundation Movement Disorders Fellow at New York-Presbyterian Hospital/Columbia University Medical Center, Dr. Lin noticed some life-altering issues his patients were grappling with. “Movement disorders is one of the least researched areas in the LGBTQ+ neuroscience field,” Dr. Lin said. The LGBTQ+ Parkinson’s community is so under-researched, there are currently no population estimates.
Estrogen and testosterone can be given as medically necessary gender-affirming hormones to match transgender people’s gender identity. How does this relate to Parkinson’s? At this point, testosterone was not found to affect Parkinson’s symptoms. On the other hand, the influence of estrogen on Parkinson’s symptoms remains inconclusive. Some research has shown that estrogen can play a role in providing protective benefits, such as lessening certain symptoms. Researchers also found that women with PD could have more motor fluctuations than men, challenging the idea of estrogen’s “protective effect” In PD.
What does this mean for trans women with PD who take estrogen therapy? “It is possible that trans women with Parkinson’s who take estrogen may see better or worse motor symptoms, which requires future research to tell us,” Dr. Lin said. “This is particularly important, as counseling about the stopping or altering of gender-affirming hormone for a transgender person, if necessary, is drastically different from that for postmenopausal or contraception purpose, considering the medical necessity of gender-affirming hormone to maintain mental health and life quality.”
Worse Parkinson’s Care Access and Experience
“There is a disparity in care among those in the sexual and gender minorities,” Dr. Lin said. “I have had patients who are reluctant to reveal their identity because of fear they will get denied healthcare.”
“We need to create a safe environment in healthcare institutions to disclose sexual orientation and gender identity to better impact care and access to resources,” Dr. Lin wrote in his study. Sex is a biological identifier generally determined at birth (male or female), while gender is a person’s identity (man, woman, transgender, non-binary).
Unfortunately, there is no LGBTQ+ patient guidance for multidisciplinary teams or care facilities. This coupled with ongoing discrimination and stigma against LGBTQ+ patients in healthcare, many people do not feel comfortable telling their doctor they are in a same-sex marriage or they identify as transgender. Seniors within the LGBTQ+ are particularly vulnerable. “It is not uncommon to see higher rates of violence or verbal abuse in nursing homes aimed at LGBTQ+ residents,” Dr. Lin said.
Identity Issues
Research, education, and advocacy can help address all these issues. The biggest obstacle right now for the LGBTQ+ Parkinson’s community is data. On a national level, most medical records list sex (female or male), but not gender (how a person identifies). “This continues to limit our research,” Dr. Lin said.
Knowing if a patient with Parkinson’s identifies as LGBTQ+ may help doctors provide customized treatments for movement and mood disorders. For instance, LGBTQ+ members typically experience higher rates of social isolation, so do people with Parkinson’s. If someone is LGBTQ+ and has Parkinson’s, they would be extremely prone to experience graver isolation issues that can lead to the worsening of non-movement PD symptoms, like depression or anxiety. To provide better evidence-based care, Dr. Lin would like to answer, “How does identity affect access to research and care?”
Helping the LGBTQ+ Parkinson’s Community
Policy-making and advocacy would change the course of treatment and care for the LGBTQ+ Parkinson’s community. “There are currently no guidelines at national or state level to help provide better care for the LGBTQ+ community,” Dr. Lin said. “There is a critical need for literature and best practices.”
Once created, guidelines would begin to address the disparity of care experienced by the LGBTQ+ community along with providing more tailored treatment options and help healthcare professionals follow best practices when treating LGBTQ+, Parkinson’s patients. For example, a nation-wide LGBTQ+ Parkinson’s guidelines can include affirming terminology for healthcare workers, an LGBTQ+-friendly and culturally competent provider list and proven ways to help the LGBTQ+ population feel more comfortable speaking to their care team.
“Do not be afraid to reveal your identity and community, said Dr. Lin when asked for his advice to the underrepresented LGBTQ+ Parkinson’s community. “I feel people in the medical community are relatively open-minded. If you are uncomfortable with your current specialist, reach out to other providers who may be able to give LGBTQ+ customized care. Telemedicine allows most people to find the right provider now. Also, try to be active in participating in clinical research and trials. Don’t be afraid to reveal who you are.”
Learn more about the Foundation’s commitment to diversity, equity and inclusion at Parkinson.org/DEI.
Parkinson’s Q&A: How do I find information after a new diagnosis?
Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations.
Question:My husband is newly diagnosed with Parkinson’s disease (PD) but didn’t tell me much about his diagnosis. What should I know about Parkinson’s, and what resources could be helpful for us?
It sometimes takes time for people who are newly diagnosed to share much about their diagnosis and symptoms. It is difficult news to hear and difficult to digest. Giving him time to reveal what he wants to at the right time might be helpful.
We have no way of knowing the rate of progression or symptoms people may develop. For the most part, he may have some movement symptoms like tremor, slowness of movement, and stiffness or rigidity in his muscles in the beginning. This may worsen over time. He may also have some non-movement symptoms like anxiety, low blood pressure, decreased facial expression, or hoarse voice. However, no one can predict if he will develop any of these symptoms as Parkinson’s is different for every person.
Treatments such as medications and exercise may help manage symptoms, while seeking expert care — through building a care team — improves the quality of life and lowers the risk of complications.
In the meantime, you can educate yourself and share these resources with him when he is ready:
We have a newly diagnosed page to review and encourage you to share it with your husband when you feel he’s ready. Please see our webinar about the newly diagnosed and I suggest you also see our 5 Steps to Living Well article.
We’re here for you.
Call the Parkinson's Foundation Helpline 1.800.4PD.INFO (1-800-473-4636) for answers to your Parkinson’s questions.
We have a booklet on Frequently Asked Questions and Living Your Best Life. Learn more about exercise as a treatment because studies show it can help increase quality of life and possibly slow down progression. It can also lift his mood, so encourage him to exercise!
Care Partner Deep Dive: Three Experts Discuss Sleep, Cognition and Mood in Parkinson's
How can care partners help their loved one with Parkinson’s disease (PD) manage the interplay between the Parkinson’s symptoms of sleep, cognition and mood?
Parkinson’s experts Aleksandar Videnovic, MD, Joseph F. Quinn, MD, and Martha Anne Tudor, MEd, NCC, LAPC, highlight these symptoms and ways care partners can help manage them. For a deeper dive on each topic, register for Parkinson’s Foundation Care Partner Program: Building a Care Partnership,a series of self-paced online courses designed with care partners in mind featuring PD experts.
How does exercise impact sleep, cognition and mood?
It is widely known that exercise is important in managing Parkinson’s symptoms, but how does it help?
Cognition: Exercise is the single most valuable intervention for promoting cognition. Aerobic exercise has been indicated to enhance protective functions in brain tissue.
Sleep: With the help of regular exercise our bodies will be more receptive to quality sleep at night.
Mood: Having a regular exercise regimen can also help combat the depression and anxiety that can be associated with Parkinson’s.
What Parkinson’s medications could impact decline in sleep, cognition or mood?
When there is an issue with sleep, cognition or mood, there are many areas that should be considered when finding a solution.
Cognition: Cognitive changes (including hallucinations) can be brought on by certain PD medications. Discuss PD medications with a doctor if you or your loved one are experiencing cognitive changes.
Sleep: Medications with alerting properties should be avoided in the afternoon or evening to increase sleep quality. Taking carbidopa/levodopa before bed to ensure less “off” time during the night can help. Talk to your doctor about taking an anti-depressant to help increase quality of sleep.
Mood: Many PD medications have mood side effects that can be managed if discussed with your prescribing doctor.
Ultimately, talk to your doctor about any medication concerns you may have.
→ Take our care partner program Cognitive Changes on a Continuum to learn more about caring for a loved one experiencing cognition changes.
How does a lack of sleep over time impact cognition and mood?
Sleep is vital for the body and mind.
Cognition: Without good, consolidated sleep our ability to store and make memories is impacted, as is our ability to perform mental tasks.
Mood: When we do not get enough sleep, we can experience symptoms that look like depression, but can also be a sign that our bodies are not functioning their best. Once we get the person’s sleep back on track, we can find out what else we are dealing with.
Sleep: During sleep, our bodies “clean up” our pathways. Without good sleep, our body is not properly getting rid of toxins and waste.
→ Hear from a Parkinson’s expert and two care partners highlight The Role of Sleep in this care partner program.
How can cognitive changes and lack of sleep impact driving for a person with PD?
Driving is an important discussion to have before a person with Parkinson’s is no longer able to drive.
Cognition: Allied health professionals, such as occupational therapists, are trained to monitor the ability to perform cognitively complex tasks such as driving.
Mood: Driving schools are an objective accessor that can take the stress off the care partner to make the ultimate decision.
Sleep: Sleep and fatigue are important considerations when deciding if a person with PD is safe to drive. Does the person with PD experience fatigue or need frequent naps? Do they fall asleep without warning?
Remember, it can be incredibly difficult to have driving privileges taken away. Approach this conversation with care and consideration. Consider speaking to a social worker or your support group for advice on the topic.
Which mood, cognition or sleep challenges tend to be the most challenging for care partners?
Care partners often experience Parkinson’s right along with their loved one and have a unique experience and viewpoint. You are not alone in your struggles!
Cognition: Care partners can often experience frustration with the apathy or impulsivity that people with PD might experience.
Mood: It is common for care partners to experience anger and frustration, specifically when witnessing the changes and limitations in their loved one’s day-to-day abilities. It can be helpful for care partners to try to “see it for the disease” rather than “just try harder.”
Sleep: If the person with PD and the care partner shares a bed when the person with PD is not getting quality sleep, chances are that the bed partner isn’t either!
When it comes to mood, cognition or sleep challenges, always talk to your loved one’s doctor and care team about your questions and concerns. You can work together to find solutions that may improve with quality of life.
The human body naturally produces antioxidants. These antioxidants have been shown to destroy excess free radicals (oxidative stress) which, in turn, helps protect brain cells (neurons) from their toxic effects, such as inflammation, DNA damage and cell tissue damage. Studies have also shown that long-term oxidative stress contributes to the development of many diseases such as diabetes, cancer and Parkinson’s disease (PD).
In the brains of people with PD, there’s a build-up of a protein called PARIS (Parkin Interacting Substrate), that inhibits the production of another protein called PGC-1α. One of the many important functions of PGC-1α in dopamine-producing cells is to fight off damaging oxidative stress – so that there’s plenty of healthy dopamine remaining to do its job.
This begged the question: might there be an antioxidant that could block the PARIS accumulation – that leads to the PGC-1α not being able to protect the dopamine-producing cells?
A just-published study in the journal, Science Translational Medicine, titled “PARIS farnesylation prevents neurodegeneration in models of Parkinson's disease,” (Jo et al., 2021) screened over 230,000 compounds, and identified farnesol as a possible candidate. Farnesol is a natural compound found in berries (as well as other fruits and herbs) that has demonstrated impressive antioxidant capabilities.
To accomplish this complex study, scientists created mice models with different genetic make-ups. For example, some of the mice models did not have the parkin protein, while others had an overproduction of PARIS, among others. The mice were then randomly selected to be fed either a farnesol-supplemented diet for one week, or a regular mouse diet.
The following week, the mice were injected with alpha-synuclein, (a key protein involved in PD). Behavioral and chemical tests were conducted, in addition to robust statistical analyses. Next, multiple experiments were carried out on the mice brain tissue, such as measuring the concentration of farnesol in the mouse brain. The scientists also measured the levels of dopamine, PARIS and PGC-1α proteins in the mice brain tissue.
Results
PD mice models fed the farnesol-supplemented diet demonstrated improvements in strength and coordination tests designed to measure the progression of PD symptoms.
PD mice models fed the farnesol-supplemented diet had twice as many healthy dopamine neurons than mice not fed the farnesol-enriched diet.
PD mice models fed the farnesol-supplemented diet had approximately 55% more of the protective protein PGC-1alpha in their brains than the untreated mice.
What does this mean?
This study demonstrated that in mice models of Parkinson’s, eating farnesol not only prevented the loss of dopamine-producing neurons,it reversed behavioral deficits in mice, showing an improvement in strength and coordination. Thus, the process of the farnesol binding to the PARIS protein worked: PARIS was successfully deactivated and could no longer interfere with PGC-1α doing its job to protect dopamine-producing neurons.
Of note, since this study was conducted in mice, it is not known if farnesol will act the same way in people. It is far too soon in this investigative process to know, but these findings are encouraging and warrant further study.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and antioxidants by vising the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
Brahmachari, S., Lee, S., Kim, S., Yuan, C., Karuppagounder, S. S., Ge, P., . . . Dawson, T. M. (2019). Parkin interacting substrate zinc finger protein 746 is a pathological mediator in Parkinson's disease. Brain, 142(8), 2380-2401. doi:10.1093/brain/awz172
Jo, A., Lee, Y., Kam, T. I., Kang, S. U., Neifert, S., Karuppagounder, S. S., . . . Shin, J. H. (2021). PARIS farnesylation prevents neurodegeneration in models of Parkinson's disease. Sci Transl Med, 13(604). doi:10.1126/scitranslmed.aax8891
Pham-Huy, L. A., He, H., & Pham-Huy, C. (2008). Free radicals, antioxidants in disease and health. Int J Biomed Sci, 4(2), 89-96.
Smeyne, M., & Smeyne, R. J. (2013). Glutathione metabolism and Parkinson's disease. Free Radic Biol Med, 62, 13-25. doi:10.1016/j.freeradbiomed.2013.05.001
Updates From the Field: Parkinson's Outcomes Project
For more than a decade, the Parkinson’s Outcomes Project has captured the experiences of people with Parkinson’s disease (PD) and care partners on topics such as medications, treatment, exercise and lifestyle. How has this essential data helped make life better for people with Parkinson’s?
When researchers analyze the experiences of more than 13,000 people living with PD who seek treatment within the Parkinson’s Foundation global Centers of Excellence network, they can identify new and better ways to provide care and manage Parkinson’s. The goal of this study is to improve health outcomes and quality of life for people with Parkinson’s and care partners.
Parkinson’s Outcomes Project research has led to several findings that have already improved care within the PD community. Four primary landmark findings include:
Exercise and Physical Therapy
Increasing physical activity to at least 2.5 hours a week can slow the decline in quality of life and help people with Parkinson’s live fuller lives. At the same time, referrals to physical therapy during the early stage of disease can help prevent hospitalization and falls. These findings led to the establishment of the Exercise Initiative, partnering with physical therapists and exercise professionals nationally.
Mental Health
Depression and anxiety are the top factors impacting the overall health of people with Parkinson’s. This understanding has led to greater supports across Parkinson’s Foundation Centers of Excellence as well as a dedicated sub-study looking at mental health.
Hospital Care
People with Parkinson’s are hospitalized 1.5 times more often than their peers without Parkinson’s, and these visits bring with them a host of complications. These findings resulted in the Foundation’s Hospitalization Initiative to drive culture and policy change at the hospital administration level. Learn more about the Parkinson’s Foundation hospitalization kit now.
Caregiving
The cost of caregiving increases 180% from early to advanced stages of Parkinson’s, with female care partners predominantly (72%) carrying the weight of care. Acknowledging these factors and how to best provide day-to-day care will help improve the quality of life for those with Parkinson’s and their care partners.
The Next Generation of Parkinson’s Research
The impact of the Parkinson’s Outcomes Project continues to direct the work of the Parkinson’s Foundation. Next, the study will next focus on recruiting more participants who are part of traditionally underrepresented populations in clinical research. The study will work to better understand the PD experiences of people with Young-Onset Parkinson’s, newly diagnosed, early and late-stage disease progression and broader ethnic and racial diversity.
The Foundation is underway with the next phase of the study, genetic testing offered through PD GENEration: Mapping the Future of Parkinson’s Disease. Genetic testing is a powerful tool that can help people learn more about their own disease, uncover biological pathways that cause Parkinson’s and can accelerate the development of improved treatments and care for all people with Parkinson’s.
“Together, the Parkinson’s Outcomes Project and PD GENEration will help researchers understand why and how Parkinson’s develops,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “These initiatives may also answer questions that researchers may never have asked, providing hope and a vision towards a cure for PD.”
For the full update from the field, read Parkinson’s Outcome Project: Improving the lives of people living with Parkinson’s through research. In this publication, we highlight landmark findings, how this research guides Foundation priorities, what’s next for the study and more. Read it now.
Though every person living with Parkinson’s disease (PD) experiences symptoms and progression differently, there are standard phases of advancement, known as stages. Whether you are newly diagnosed or living with advanced PD, you can work with your doctor and healthcare team to chart your progression — central to living your best with Parkinson’s.
This article is based on a Parkinson’s Foundation Expert Briefing The Parkinson’s Journey: Understanding Progression presented by Annie Killoran, MD, MSc, from University of Iowa Hospitals and Clinics, and Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, from Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorders Center — both from Parkinson’s Foundation Centers of Excellence.
Establishing a Baseline
Parkinson's advances over time. Your Parkinson’s symptoms are unique to you. Taking a symptom snapshot and regularly assessing your PD progression can ensure that you and your doctor consider appropriate care for every stage. This can also help you plan for any challenges before they happen.
Though everyone experiences PD differently, actively engaging in wellness and exercise is vital to maintaining balance and movement in Parkinson’s. The Hoehn and Yahr PD scale classifies PD into five stages. This scale is mostly used for research, but can also help explain how PD impacts quality of life:
Stage One
Mild movement symptoms, such as tremor, usually initially only affect one side of the body. Although everyone who lives with PD will progress differently in their journey, a person with Parkinson’s can remain at this early stage, or the next, for up to 10 years.
Stage Two
Movement symptoms, including slowing and stiffening, begin to become noticeable on both sides of the body. Erratic, involuntary movements, called dyskinesia, can also appear during this stage and the next. Dyskinesia often begins after a few years of levodopa treatment. Share any symptoms with your doctor, who might adjust your levodopa dose or try incorporating anti-dyskinesia therapy.
Stage Three
Trouble with balance and increased fall risks characterize this mid-stage of Parkinson’s. Activities may become harder, too. Physical and occupational therapy and walking aids may reduce falls. “On-off” periods (when levodopa unpredictably starts or stop working) can become common in people who have taken the medication for several years.
Stage Four
As symptoms progress – usually in people who have lived with PD for 18 years or more – the need for assistance with tasks, caregiving and possibly a wheelchair to prevent falls increases. Around 80% of people who have lived with Parkinson's for 15 years will have recurrent falls. This is associated with a reduced quality of life.
Stage Five
At this most advanced PD stage, tasks are very difficult and often require comprehensive caregiving. Planning well ahead for this stage can minimize stress, optimize care, and ensure your preferences are carried out.
Living Well at Every Stage
Just as a healthy diet and ample exercise can help you live optimally with Parkinson’s, so can palliative care. Palliative care — sometimes mistaken for end-of-life, or hospice, care — is instead holistic, team-based treatment designed to support a person’s quality of life from the point of their diagnosis onward. Doctors, nurses, social workers, occupational and physical therapists, nutritionists and others healthcare specialists can all be a part of a palliative care team.
As you and your care partner begin incorporating support resources, take things one step at a time. Give yourselves extra time and patience, and make life easier where you can. A social worker with experience in movement disorders can help assess your needs and create a palliative care starting point. From there, they can either provide certain resources directly or help you or your care partner identify and locate needed supports.
Prioritizing Care
Because stress can amplify PD’s challenges, caring for your emotional health is as important as tending to your physical well-being. The journey with Parkinson’s can be filled with emotions, including frustration and grief. Whether you live with PD, or love someone who does, learning to acknowledge and accept all your feelings is important.
Making space for both positive and painful emotions is healthy and human. Taking time to observe and sit with your emotions can help you pinpoint any challenges in your life. This can be the first step in tackling them.
Taking Action
Living with Parkinson’s not only asks us to sometimes make room for heavy emotions, it can also require us to have difficult conversations. Discussing and planning for advance care, something everyone should do whether living with PD or not can be a sensitive topic. However, talking about your wishes early on with your family can offer peace of mind.
Engaging a lawyer, chaplain or social worker with advance care planning experience in your conversation can be helpful. These conversations can inform advance directives, living wills and POLST (Physician Orders for Life-Sustaining Treatment) forms — legal documents that ensure your wishes are carried out if you are unable to communicate them.
Remember, if something is standing in the way of you living your best life with Parkinson’s, speak up. People with PD might hesitate to talk about seemingly taboo challenges — hallucinations, urinary incontinence or intimacy issues. It is important to share these quality-of-life issues with your care provider. They are often manageable. Things might be as simple as a medication adjustment.
The Parkinson's Foundation is committed to you at every step of your journey. Call our Helpline for answers to your Parkinson’s questions and referrals at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org.
Understanding 'Gene Silencing' and Its Role in Parkinson’s and Dyskinesia
As a neuroscience professor, Kathy Steece-Collier, PhD, bridges the gap between basic research and treatment. For more than three-decades, her focus on Parkinson’s disease has brought a better understanding of the disease and increased hope for improved treatment. Yet before choosing a path in neuroscience, Dr. Steece-Collier considered a career in special education. It was only after a conversation with Professor Stephen Binkley — a Nobel Prize winning scientist — that her educational path shifted, leading her to a groundbreaking career in research.
“I found my translational science niche and I became interested in pursuing continuing treatments for people with Parkinson's disease,” said Dr. Steece-Collier.
Now, as a principal investigator and professor at Michigan State University’s College of Human Medicine, Steece-Collier focuses on the development of improved therapeutics for people with Parkinson’s disease (PD). Her research places particular emphasis on understanding how the brain reacts and remodels itself in response to neurodegeneration (loss of brain cells) and therapeutic interventions.
Half-a-century ago it was recognized that dopaminergic drugs, specifically levodopa, could alleviate many Parkinson’s symptoms. However, over time, complications arose with their continued use — including the development of unpredictable motor responses and involuntary movements known as levodopa-induced dyskinesia. Much research has been implemented over the years in a search to provide relief for this side-effect of PD therapy that involves involuntary and erratic movements, which can occur in the face, arms, legs and/or trunk.
The primary focus of Dr. Steece-Collier’s lab is aimed at understanding dyskinesia side-effects. One project is related to a still experimental therapy that involves using grafts, or transplants, of new dopamine cells placed into the striatum (area of the brain) of patients with PD. While such grafts have been shown to produce clear clinical benefits in some individuals, the results have been inconsistent and, in some, also induced dyskinetic movements — a phenomenon referred to as graft-induced dyskinesias.
Graft-induced dyskinesias are presumed to occur when the newly grafted neurons ‘hook up’ incorrectly within the brain of a person with Parkinson’s. “I became interested in what was causing graft-induced as well as medication-induced dyskinesias. I continue to study these basic biology mechanisms to try and understand what is going on in the brain of individuals with Parkinson’s to limit therapeutic benefits and cause unwanted side-effects,” said Dr. Steece-Collier.
In 2014, an International Research Grant from the Parkinson’s Foundation allowed Dr. Steece-Collier to delve deeper into a second topic of study in her lab, medication-induced dyskinesias. Her research sought to determine if a specific calcium channel in the brain, which allows calcium to enter nerve cells, contributes to levodopa-induced dyskinesias and whether silencing, or blocking, this channel could alleviate them.
“The Parkinson's Foundation was the first funding organization that had faith in this project. They saw enough promise in it that they gave us the seed money to develop the necessary preliminary data to support the importance of a particular population of calcium channels in the expression of levodopa-induced dyskinesias.”
Dr. Steece-Collier and her research team determined that a ‘gene silencing’ technique to ‘quiet’ these calcium channels could protect against levodopa-induced dyskinesias. This process involves injecting genetic material into a particular region of the brain where calcium channels develop abnormal activity. This gene therapy approach that allows new genetic information to reduce the number of these channels has already shown remarkable progress in successfully alleviating levodopa-induced dyskinesias in an experimental model of PD.
“With the Parkinson’s Foundation funding, we were able to get enough preliminary data that we could then go to the National Institutes of Health to obtain funding for larger functional studies. Indeed, without the Parkinson’s Foundation it is likely that none of this would have been realized.”
- Dr. Steece-Collier
The greater aim for this research is to provide rationale for the design of clinical trials of gene silencing to reduce the abnormal calcium channel signaling that occurs in the PD brain. Dr. Steece-Collier remains hopeful that the effective and life-changing application of this research will strengthen interest in the development of new therapies that target this specific calcium channel to not only ameliorate dyskinesia side-effects but potentially slow disease progression. “This project is near and dear to my heart, and I hope in the next decade we can take it to clinical trial — that'll be what I'll retire on,” said Dr. Steece-Collier.
