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.
Parkinson’s Foundation Shares PD GENEration Remote Recruitment Findings
Every year, thousands of neurologists, researchers and health professionals gather at the American Academy of Neurology Annual Meeting to present the latest in research, treatments and best practices in the neurological field – including Parkinson’s disease. This year, the Parkinson’s Foundation participated in this virtual event which took place April 17 – 22. The Foundation presented a poster titled PD GENEration During COVID-19: Transitioning to Remote Recruitment For Genetic Counseling and Testing.
PD GENEration: Mapping the Future of Parkinson’s Disease is a national study launched by the Parkinson’s Foundation in 2019. We offer genetic testing for Parkinson’s-related genes and genetic counseling at no cost for participants with a confirmed Parkinson’s disease (PD) diagnosis. Participation can be either in-person at one of our participating Centers of Excellence and Parkinson Study Group sites, or from home through a telemedicine appointment and at-home sample collection kit.
The poster, presented by Anna Naito, PhD, Associate Vice President of Research Programs, addresses several questions about pivoting the study to conduct genetic testing and counseling remotely. Here we highlight some of those questions and answers.
How could we safely conduct the PD GENEration study while following the social distancing and safety requirements during COVID-19 pandemic?
For PD GENEration, remote recruitment for genetic testing and counseling for people with PD was found to be not only feasible, but also popular. This method also increased participants’ geographic spread. Further, the telemedicine recruitment rate exceeded that of the in-person recruitment (204 participants over 5 months).
Before the pandemic, the pilot stage of PD GENEration was designed for in-person recruitment and participation at several Parkinson’s Foundation Centers of Excellence across the country. The winning combination was peoples’ genuine desire to learn their genetic status, a genetic test kit that could be mailed to their home, and the concept of telemedicine shifting from a rare occurrence to the ‘new normal’.
For people with PD, genetic testing can let you know if you carry known gene changes linked to the disease. It’s estimated that about 10 percent of people with PD have a genetic form of the disease, so by better understanding how those with genetic forms of PD experience symptoms related to Parkinson’s and respond to treatment, scientists can begin to develop improved treatments and personalized medicines.
A deeper understanding of the genetics of PD may also lead to better treatments themselves by revealing novel therapeutic targets, spurring development of better drugs. Genetic testing can also help people with PD and their clinicians identify whether they may qualify for enrollment in certain clinical trials.
Has the PD GENEration remote approach had any immediate positive or negative issues?
In terms of demographics, both in-person and remote approaches resulted in similar age and sex distribution. However, the telemedicine participants were more likely to have received a higher education. An important positive outcome was the increased geographic representation of PD GENEration participants spanning over 42 states in the US. This was only possible because the Foundation pivoted to offer remote participation. Importantly, despite the technological learning curve required with telemedicine, PD GENEration successfully demonstrated feasibility and adoption of telemedicine-based research participation among the Parkinson’s community.
What does this mean?
The goals of PD GENEration are to empower people with PD and their care team, improve Parkinson’s care and research and accelerate enrollment in clinical trials. While virtually all clinical research studies came to an abrupt halt at the start of the COVID-19 pandemic, the Parkinson’s Foundation leads the field as one of the few Parkinson’s studies to continue enrollment during the pandemic by offering remote participation. We now know that telemedicine is a highly successful approach to conducting genetic testing and furthering these goals. By participating in this study and contributing their genetic data, people with PD can better manage the disease, help scientists in their journey to advance understanding of PD, improve PD care and research and accelerate enrollment in clinical trials.
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:
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.
New Exercise Recommendations for the Parkinson’s Community and Exercise Professionals
The Parkinson's Foundation, in collaboration with the American College of Sports Medicine, created new Parkinson’s disease (PD) exercise recommendations to ensure that people with Parkinson’s are receiving safe and effective exercise programs and instruction. The guidelines are the result of a convening including 34 exercise professionals and thought leaders who met in March 2020 to help develop the framework for these guidelines.
The new exercise guidelines include recommended frequency, intensity, time, type, volume and progression of exercises that are safe and effective for people with Parkinson’s across four domains: aerobic activity, strength training, balance, agility and multitasking and stretching. Each recommendation is paired with specific types of activity and special safety considerations for people with PD.
It is recommended that people with PD see a physical therapist specializing in Parkinson’s for full functional evaluation and recommends exercise during ‘on’ periods, when taking medication. The guidelines also recommend 150 minutes of moderate to vigorous exercise per week for people with Parkinson’s. Other key recommendations include:
Aerobic activity: 3 days a week for at least 30 minute per session of continuous or intermittent movement at moderate or vigorous intensity
Strength training: 2-3 non-consecutive days per week of at least 30 minutes per session for 10-15 repos for major muscle groups; resistance, speed, or power focus
Balance, agility and multitasking: 2-3 days per week with daily integration if possible
Stretching: 2-3 days per week with daily stretching being most effective
The referenced media source is missing and needs to be re-embedded.
Research from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s, suggests that people with PD do at least 2.5 hours of exercise a week for a better quality of life. The new Parkinson’s exercise guidelines aim to support the Parkinson’s community in staying active. The guidelines also provide an important framework for exercise professionals, who play a vital role in developing safe and effective programs to improve quality of life for the PD community.
Parkinson's Q&A: Can My Children Inherit Parkinson's?
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 father and his father both had Parkinson’s. I’m wondering if this is a disease that I and my children should be concerned about possibly inheriting? If so, is there a way or place we can get tested? None of us currently show any signs or symptoms.
Parkinson's Foundation Helpline
Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your Parkinson’s questions. Helpline specialists can assist you in English or Spanish, Monday through Friday, 9 a.m. to 7 p.m. ET.
Currently scientists find that genetics alone cause only 10% to 15% of all people's Parkinson’s. If through genetic testing a person is positive for a certain gene mutation associated with Parkinson’s (such as LRRK2, GBA and SNCA genes) then their risk may increase, but they may never develop Parkinson’s. Genetic testing for these and other genes can be done, but it will not be able to predict the probability for you or your kids to develop the disease.
Testing may be able to calculate your risk. A complicated interplay between environmental and genetic factors are thought to be the main reasons why the vast majority develop Parkinson’s.
I can understand your wish to know more about genetics and Parkinson’s because of your family history, it might be helpful to first talk with a genetic counselor about why you want the test and what impact the results will have on you and your family. If you want to read more about this, we have additional information on Parkinson.org/Genetics.
You can also learn more about the Parkinson’s Foundation PD GENEration study that offers genetic testing for Parkinson's-related genes and genetic counseling at no cost for people with Parkinson’s disease.
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.
Genetic Mutation & Parkinson’s: Knowledge is Power
Much of our understanding of Parkinson’s disease (PD) comes from genetic studies. The most common genetic changes linked to PD occur in the GBA gene. People with PD who have a change (known as a mutation) in their GBA gene have been found to be more likely to experience 1) a younger onset of PD, 2) a more intense disease course, 3) an increased risk of dementia, and 4) tend to have a shorter life span than those with PD who do not have the GBA gene mutation.
The GBA gene, when functioning properly, provides instructions for toxic waste clean-up in a person’s cells. A GBA gene mutation may lead to a dangerous toxic build-up that can harm one’s brain, and other essential organs.
Did you know that our PD GENEration study offers free genetic testing to those with a Parkinson’s diagnosis?
Having a GBA gene mutation has been identified in upwards of 12% of PD cases of people from European descent and 15-20% of Ashkenazi Jewish cases. Despite how common this mutation is, there have been surprisingly few good studies comparing the motor and functional decline of those with and without the GBA gene mutation — particularly from early diagnosis. Fortunately, a just-published, seven-year study that followed a group of people with Parkinson’s over time, sought to tackle this important shortcoming.
A study titled, “Association of GBA Genotype with Motor and Functional Decline in Newly Diagnosed Patients with Parkinson’s Disease” (Maple-Grodem et al., 2021), drew from three large European population-based PD studies (the Norwegian ParkWest, the Swedish NYPUM, and the Scottish PINE). Participants in this study included 53 GBA mutation carriers (in their mid-50s to mid-70s; 64% male) and 387 without the GBA gene mutation (in their early 60s to their late 70s; 60% male). Then, each year for seven years, the study participants’ motor and functional impairments (difficulties in performing activities of daily living) were meticulously evaluated using well-established PD scales, along with other sophisticated models and tests. Researchers took into consideration age, sex and duration of motor symptoms for each participant.
Results
At time of initial diagnosis:
Participants with and without the GBA mutation did not differ in overall motor severity or activities to perform (or complete) activities of daily living, nor in severity of tremor, rigidity, bradykinesia or trouble with balance.
GBA mutation carriers experienced their first motor signs of PD at an earlier age than non-carriers.
GBA mutation carriers were younger than non-carriers when initially diagnosed with PD.
Effects after seven years:
GBA mutation carriers had a more rapid motor decline than non-carriers.
There was statistically significant worsening in both the PD rating scores for GBA carriers compared to non-carriers — mostly driven by a steep decline in their bradykinesia and rigidity scores.
What Does It Mean?
This study investigated how having a GBA mutation impacts the motor and functional decline of people with PD over time. In brief, study participants with a GBA mutation experienced their first symptoms younger and were also diagnosed at a younger age than participants without this mutation. Of note, at the time of initial diagnosis, there was no distinguishable difference in the level of motor and function decline between GBA carriers and non-carriers.
Why is this study important? The speed of motor and function decline experienced by participants with a GBA mutation was faster compared to people without the genetic mutation. Such a profound decline impacts everything — from one’s independence to caregiver responsibility, and more. Having a better understanding — and armed with a reasonable predictability of PD progression — is essential for coordinating optimal health care for a significant proportion of the PD population. Better understanding these PD-related gene mutations and how they are linked to symptoms can help revolutionize PD research and future treatments.
While the study authors did not specifically advocate for genetic testing to become standard practice, they did suggest that knowledge of whether study participants are GBA mutation carriers would be valuable information, in terms of designing clinical trials and for interpreting the implications and applicability of study results.
Genetic studies, such as PD GENEration, help arm people with Parkinson’s with the knowledge of their genetic mutations, which can help them qualify for enrollment in more specialized clinical trials that are currently testing and optimizing PD treatments and medications that respond to particular genetic mutations.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Parkinson’s and genetics by visiting the Parkinson’s Foundation resources below, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
Maple-Grodem, J., Dalen, I., Tysnes, O. B., Macleod, A. D., Forsgren, L., Counsell, C. E., & Alves, G. (2021). Association of GBA Genotype With Motor and Functional Decline in Patients With Newly Diagnosed Parkinson Disease. Neurology, 96(7), e1036-e1044. doi:10.1212/WNL.0000000000011411
Robin Williams: Lewy Body Dementia, Suicide and Parkinson’s
On August 11, 2014 actor and comedic genius Robin Williams passed away. Williams not only amplified awareness of the life-changing, prevalent disease known as Lewy Body Dementia, but his passing brought much-needed attention to the importance of mental health and the non-movement symptoms of depression and anxiety that often accompany a neurodegenerative disease.
A decade after his passing, what do we know about Lewy Body Dementia? How can we help people with a neurological disease experiencing suicidal thoughts?
What is Lewy Body Dementia?
Lewy Body Dementia (LBD), also known as Dementia with Lewy Bodies, is a progressive brain disorder that is diagnosed when cognitive decline is an early symptom. It can also be diagnosed when cognitive decline and motor symptoms begin and develop together.
“Lewy Body Dementia is a common type of dementia — it is the second most common neurodegenerative dementia behind Alzheimer’s,” said Jennifer G. Goldman, MD, MS, section chief of Parkinson’s Disease and Movement Disorders at Shirley Ryan AbilityLab and a Professor in Physical Medicine and Rehabilitation and Neurology at Northwestern University Feinberg School of Medicine, a Parkinson’s Foundation Center of Excellence. “It is thought to affect 1.4 million people in the U.S. but is not widely recognized. With greater education and awareness, with Lewy Body Dementia including both Dementia with Lewy Body and Parkinson’s disease (PD) dementia, we can start to change that landscape.”
Learn More
Deep dive into Dementia with Lewy bodies, atypical parkinsonism disorders, treatments and more.
What is the difference between Lewy Body Dementia and Parkinson’s disease dementia?
Lewy Body Dementia is a term used for both Parkinson’s disease dementia and Lewy Body Dementia. They have some things in common, but their progression and treatment are different.
While many people with Parkinson’s can experience cognitive changes, it is important to know that not everyone with Parkinson’s will develop dementia. “When we see more severe cognitive changes, particularly when they affect someone’s function or ability to act independently for activities of daily living, their work or hobbies, we think of that as being a form of dementia,” said Dr. Goldman.
“With Parkinson’s dementia, the motor symptoms precede the dementia. In dementia with Lewy Body the initial core symptom is dementia — cognitive changes are early, and motor features, if present, occur either after the onset of dementia or concurrently,” said Dr. Goldman.
Fight For a Diagnosis
Before Robin Williams was diagnosed with Lewy Body Dementia, it was reported that he had been experiencing paranoia, confusion, insomnia, constipation and lacking the ability to smell. For many, the wide range of early symptoms — not all related to brain function — makes Lewy Body Dementia difficult to diagnose.
Dr. Goldman urges patients to fight to find their diagnosis. “Continue to seek the answers and seek out a specialist to help identify the cause of the cognitive issues or type of dementia,” said Dr. Goldman. “The right doctor can change one’s management, prognosis, and eligibility for participating in research studies. It’s important to have the best understanding of the disease for the chance to have the best outcomes.”
People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach that includes a mental health professional. With a team in place, should depression or suicidal thoughts occur, you have an established relationship with a professional you trust. However, it is never too late to add a mental health professional to your care team.
If you or your loved one is having thoughts of suicide:
Find the resource that works for you: 24-hour suicide prevention hotlines can help, such as the National Suicide Prevention Lifeline at 1-800-273-8255.
Seek professional help: Find a psychologist, therapist, counselor, or social worker you can trust and lean on.
Stay engaged: It can be easy for people with Parkinson’s to distance themselves. Try to connect with family and friends, schedule regular phone calls and seek out a support group or wellness class.
Build your support crew: call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) for help finding a local or online support group.
There are treatment options for Lewy Body Dementia and Parkinson’s disease dementia. Healthcare teams are finding that the most effective approach is a combination of medication, physical and mental exercises, and incorporating a mental health professional as part of a care team.
“There is quite a bit of research going on in Lewy Body Dementia,” said Dr. Goldman. “Researchers are trying to understand why it occurs, and whether there are differences between Parkinson’s disease dementia and Lewy Body despite the fact that they share many clinical symptoms and pathology. Ongoing research ranges from trying to predict or detect early changes in people who might go on to develop Lewy Body Dementia all the way to studying different treatments — from medications to newer trials starting to look at the roles of mental and physical exercises.”
More Resources
The Parkinson’s Foundation believes in empowering the Parkinson’s disease community through education. Learn more:
Genetic Counselors Answer Top Parkinson’s Questions
Through its national study, PD GENEration: Mapping the Future of Parkinson’s Disease, the Parkinson’s Foundation is giving people with Parkinson’s disease (PD) insights into their PD and opportunities to take action, while accelerating PD treatments. Genetic counseling, offered in English and Spanish, is a critical and unique part of this study.
Licensed, board-certified genetic counselors Jeanine Schulze, MS, CGC, and Jennifer Verbrugge, MS, CGC, are with the Department of Medical and Molecular Genetics at the Indiana University School of Medicine, a Parkinson’s Foundation Center of Excellence. Both have taken part in several PD genetic testing research initiatives, including PD GENEration.
Their collaboration answers the following questions that highlight the importance of screening for biological Parkinson’s factors in those who live with PD and how genetic counseling is critical to navigating genetic test results.
Q: Why is genetic testing important for people with Parkinson’s?
A: People with Parkinson’s may seek genetic testing for several reasons. Some people want a better understanding of why they developed Parkinson’s, or to learn more about their individual disease. Others are concerned about the risk to their family.
Genetic testing can identify if a change in a gene, or what we call a variant, contributed to Parkinson’s disease. If a genetic variant is identified it can give us information about inheritance in the family, if other family members might be at risk of Parkinson’s and what that level of risk may be. In some cases, genetic test results might give us information about potential symptoms, treatment or future progression.
Identifying a genetic variant in a person with Parkinson’s can also open the door to research studies such as clinical trials. People with Parkinson’s who carry genetic variants can play a critical role in helping researchers learn more about what causes Parkinson’s, and how we might be able to treat it. There are different types of research studies looking for people with specific genetic variants; some are evaluating new treatments while others are following people over time to learn more about how genetic variants impact Parkinson’s symptoms and progression.
Q: What does a genetic counselor do?
A: Genetic counselors empower people with Parkinson’s and their families with information, guidance and emotional support. Counselors help them understand biological history, evaluate genetic testing options and make informed choices based on test results.
Q: How is PD GENEration setting the bar for Parkinson’s-specific genetic reporting and counseling?
A: The study puts participants at its center, helping them understand their genetic test results and encourage them to partner in future PD research. PD GENEration provides genetic counseling to every participant. The high-level, comprehensive genetic test is designed to cover all seven of the major PD gene variants, including those important for clinical trials and other research participation.
Q: How is genetic counseling through PD GENEration unique?
A: This study enables access to genetic testing and counseling to people with PD across the U.S. at no cost. The new virtual option gives access to people who previously might have been too far from a study site or unable to travel. Participants can have their questions answered by genetic counselors who are highly specialized in Parkinson’s disease and PD genetics. Counseling is offered in Spanish and English.
Q: What should people know about at-home genetic tests?
A: There are many kinds of at-home genetic tests available. Some of these, called direct-to-consumer genetic tests, are performed without the involvement of a physician or a health care provider. These tests do not fall under the same guidelines as those ordered through a clinician, and often provide limited or incomplete information.
The PD GENEration at-home genetic testing is ordered through a PD GENEration healthcare provider. Staff mail a collection kit, and coordinators help explain how to collect the genetic sample during the video visit. The sample is mailed to the clinically-certified laboratory running the PD GENEration genetic testing panel. This test was carefully designed and results are carefully analyzed. Each participant’s genetic information is protected by the research study and the lab doing testing. Results are reported to participants by a genetic counselor or clinician who can answer questions and discuss any complexities.
Q: What should a person with PD expect when meeting with a genetic counselor?
A: A genetic counseling appointment may consist of a face-to-face, telephone or video discussion with a genetic counselor. Sessions may last anywhere from 20 to 60 minutes, but the length of the time depends on the type of visit, number of questions and complexity of testing or testing results.
During a genetic counseling session, a counselor may discuss how genetics plays a role in Parkinson’s disease, gather family history and explain how genetic factors and/or test results may impact family members.
To learn more about in-person or at-home PD GENEration participation, visit Parkinson.org/PDGENEration or call the Parkinson's Foundation Helpline 1-800-4PD-INFO.
