Podcast Playlist: Our Top Podcast Episodes to Get you Through Fall
While the leaves may be changing, your favorite podcast isn’t going anywhere! Cozy up, sit back and get ready to learn from our Parkinson’s disease (PD) experts with our top Substantial Matters: Life and Science of Parkinson’spodcast episodes:
Stall the Fall
People with Parkinson’s are two times as likely to fall as other people their age. While healthcare professionals recognize the extent of the problem, there is still a lot to learn about why they happen and what can be done to prevent them.
Depression in Parkinson’s
With depression as a common PD symptom, people with Parkinson’s should be conscious of their increased susceptibility to seasonal depression. Learn about the symptoms that accompany depression and how they may overlap with PD itself.
Seeking a Second Opinion After a Parkinson’s Diagnosis
People are being newly diagnosed with Parkinson’s year-round. Learn more about seeking a second opinion from a movement disorders specialist. It may help to confirm the diagnosis and address any lingering unanswered questions.
Addressing Sleep Discomfort with Parkinson’s
The seasonal time change can lead to trouble sleeping for everyone, but people with PD experience sleep problems as a symptom. Changes in the brain can affect mood, thinking and the sleep-wake cycle. Find out how to address sleep discomfort.
Palliative Care as Supportive Care in PD
A change in temperature can bring muscle stiffness. As people with PD understand the benefits of palliative care, they are adding it to their regimen. Palliation means to ease the burden of the symptoms of a disease.
Dance Therapy for PD
A change of season can be the perfect time to try something new. Besides medication, people with Parkinson’s can benefit from many other forms of therapy, including physical, occupational, speech, music, art therapies, along with dance/movement therapy (DMT).
Q&A with Diane M. Ellis, Parkinson's Expert and Nurse
Diane M. Ellis, MSN, RN, CCRN is a clinical assistant professor at Villanova University M. Louise Fitzpatrick College of Nursing and Edmond J. Safra Nurse Faculty Scholar. As a recipient of the first Parkinson’s Foundation Nurse Faculty Award, she received grant funding to launch a project to help make life better for people with Parkinson’s disease (PD).
What are the highlights of your Parkinson’s Foundation Nurse Faculty Award project?
Diane: The purpose of this study: An Intraprofessional Mock Code: Nurse Anesthesia and Baccalaureate Nursing Students – Parkinson’s Disease Patient Missed/Omitted/Delayed (MOD) Medication Simulation Case Study was to increase awareness and educate undergraduate nursing and graduate nurse anesthesia students about the importance of timely administration of Parkinson’s medication. missed/omitted/delayed PD medications during care transitions. We studied the intraprofessional collaboration between the students , communication and comfortability between the students during a simulated emergency code situation of a an unfolding mock code simulated hospitalized patient with PD.
Because omitted medications compromise patient safety, quality improvement strategies that focused on safe and timely medication administration and medication reconciliation during care transitions were undertaken. Pre-test/Post-test results were compared post mock code simulation and debriefing from the participating students .
What were the study findings?
Diane: Overall, more than half of the undergraduate senior nursing students who participated in the study were unable to correlate a patient’s declining health as missed doses of PD medication until the second half of the case, when the connection became apparent. By the end of the study, students showed a:
53.6% increase in knowledge regarding the importance of PD medication timing.
54.3 % increase in knowledge regarding best practices to prevent missed or omitted PD medications.
71.3 % increase in knowledge regarding side effects and complications of missed or omitted PD medications.
46.8% increase in knowledge regarding priority nursing care practices for patients with PD.
Among faculty who participated, study results also showed a:
71.4% increase in faculty knowledge regarding the importance of PD medication timing
57.1% increase in faculty knowledge regarding best practices to prevent missed or omitted PD medications
85.7% increase in faculty knowledge regarding side effects and complications of missed or omitted PD medications
57% increase in faculty knowledge regarding priority nursing care practices for patients with PD.
What did it mean to you to receive the Parkinson’s Foundation Nurse Faculty Award?
Diane: My team and I were very happy to receive funding to conduct this study as it gave us the ability to pay for essential personnel to assist in this study and to support students and faculty in the dissemination of the results of this study.
How did the study simulation help educate the nursing students involved?
Diane: I believe study results speak for themselves regarding how the students gained pertinent and lifelong knowledge in PD care. This simulation was the perfect environment for high risk low volume patients. These students previously received a two-hour PD lecture, but still were unable to answer the most basic PD questions related to the care of patients with PD and their medication administration.
Due to the nature of the simulation, the students reacted and participated as if this were a hospital setting. Their pulses were elevated, faces were flushed and they were speaking quickly, as if they were in a real world situation. Even nurses and faculty who had been practicing for years were not aware of the basic fact that a person with PD cannot miss their medications. This was an unforgettable experience for faculty, students and nurses, who will now always remember that a PD medication can never be withheld. Without this experience they would never have learned this lifesaving information as it relates to people living with PD.
How did your experience as an Edmond J. Safra Visiting Nurse Faculty Scholar influence this project?
Diane: It is because I am a Safra Scholar that I even knew about this funding and started to do Parkinson’s research. My previous publications with the Safra program allowed me to build the research to where it is today.
How did this study encourage intraprofessional team care?
Diane: This study promoted intraprofessional communication, collaboration and comfortability by having undergraduate students and experienced health professionals working together in a simulation safe environment.
Students in this environment were learning and performing tasks that were new to them, but doing so with trained professionals to support and provide feedback. Undergraduate nursing students could listen and learn from experienced nurse anesthesia graduate students. This simulation gave these students an increased comfort level to perform more efficiently and effectively in an actual life-threatening situation within a hospital.
What are some of the biggest challenges a person with Parkinson’s can experience in the hospital?
Diane: Parkinson’s patients are more likely to be hospitalized with complications and with decline during hospitalization. Missing medications occurs frequently in hospitalized Parkinson’s patients with increase length of stays (Martinez-Ramirez et al., 2015). Parkinson's medication errors, including missed, omitted, and delayed medications are risk factors for protracted hospital stays (Lertxundi et al 2018). Three-fourths of patients hospitalized with PD do not receive medications on time or are completely missed (Grissinger, 2018).
DiBartolo, M. (2017). Enhancing care for hospitalized patients with Parkinson's Disease: Development of a formal educational program for nursing staff. Journal of Gerontological Nursing, 43(5), 18-22. doi:10.3928/00989134-20170223-02
Chambers, D., Sebastian, J., & Ahearn, D. (2017). Parkinson’s Disease. BJA Education 17(4), 145-149. doi:10.1093/bjaed/mkw050
Grissinger, M. (2018). Delayed administration and contraindicated drugs place hospitalized Parkinson’s Disease patients at risk. P&T 43(1), 10-11.
Gültekin, M. (2017). Medication errors increase risk of death in patients with Parkinson’s Disease. Turkish Journal of Neurology 23, 153-154. doi:10.4274/tnd.17003
Lertxundi, U., Isla, A., Ángeles Solinís, M., Domingo-Echaburu, S., Hernandez, R., Peral-Aguirregoitia, J., … García-Moncó, J. C. (2016). Medication errors in Parkinson’s Disease inpatients in the Basque Country. Parkinsonism and Related Disorders.
Lertxundi, U., Arantxa, I., Solinís, M. A., Echaburu, S. D., Hernandez, R., Peral-Aguirregoitia, J., García-Moncó, J. C. (2017). Medication errors in Parkinson's disease inpatients in the Basque Country. Parkinsonism & Related Disorders, 36, 57-62. doi:10.1016/j.parkreldis.2016.12.028
Mahajan, A., Balakrishnan, P., Patel, A., Konstantinidis, I., Nistal, D., Annapureddy, N., Sidiropoulos, C. (2016). Epidemiology of inpatient stay in Parkinson’s disease in the United States: Insights from the Nationwide Inpatient Sample. Journal of Clinical Neuroscience, 31, 162-165. doi:10.1016/j.jocn.2016.03.005
Martinez-Ramirez, D., Giugni, J. C., Little, C. S., Chapman, J. P., Ahmed, B., Monari, E., Okun, M. S. (2015). Missing dosages and neuroleptic usage may prolong length of stay in hospitalized Parkinson's disease patients. PLoS ONE, 10(4), e0124356. doi:10.1371/journal.pone.0124356.
Parkinson’s disease (PD) is neurodegenerative disorder characterized, in part, by the clumping of the protein alpha-synuclein. These clumping proteins are called Lewy Bodies that can be found in an area of the brain stem where dopamine cells die. However, we do not know exactly how the two are connected. Researchers believe that better understanding this connection would help us develop optimal targeted therapies to treat PD.
A study published in Nature, “Alpha-synuclein is a DNA binding protein that modulates DNA repair with implications for Lewy body disorders” (Schaser et al., 2019), wondered if healthy alpha-synuclein help repair DNA damage caused by double-strand breaks (DSBs). DSBs can be the result of many things, such as environmental exposure to irradiation and other chemical agents. However, DNA damage is also a normal result of cells undergoing constant wear-and-tear. In fact, DNA damage happens in human cells thousands of times per day. Fortunately, cells repair damaged DNA on their own.
However, what if the unhealthy alpha-synuclein (which becomes Lewy Bodies) causes the loss of DSB repair, leading to healthy cells dying? While this study was not PD-specific, what if it were dopamine-producing cells that were not getting repaired and dying? The researchers conducted a series of sophisticated tests in both living mouse brains and human cells to see if this chain of events was taking place.
First, using a powerful microscope (or imaging techniques) the researchers confirmed that healthy alpha-synuclein appear exactly where the DSBs are located. However, the test did not show the cause, so further experiments were required.
Researchers then measured the amount of DSBs in healthy human cells and human cells where alpha-synuclein was completely removed (known as knock-out cells). To cause DNA breaks, they exposed the cells to a chemotherapy drug, called bleomycin. The researchers found that the cells without alpha-synuclein (knock-out cells) had higher levels of DSBs compared to healthy cells, suggesting that alpha-synuclein plays a role in repairing DSBs. They also found that the healthy human cells repaired DSBs more rapidly compared to the knock-out cells, again supporting the role of alpha-synuclein in aiding DNA repair.
Next, researchers used a strong laser, which they knew would damage the DNA and cause DSBs, to see if healthy alpha-synuclein are recruited there to help seal the breaks. They tested this in two groups of live mice and live human cells: 1. healthy and 2. Group with the disease that carry the abnormal form of alpha-synuclein. Lastly, they tried adding healthy human alpha-synuclein back into the mice without alpha-synuclein to see if it might restore the normal DNA damage response.
Results
In both human cells in a dish (in vitro) and living mouse brains (in vivo) alpha-synuclein was present in the exact same location as the DNA repair proteins, suggesting alpha-synuclein binds directly to DSBs, and helps repair those breaks.
In both healthy human cells and living mouse brains, the laser-induced DSBs, triggered alpha-synuclein to move to the site of DNA damage.
In diseased human cells and mice carrying the abnormal form of alpha-synuclein, the laser-induced DSBs, impaired alpha-synuclein from moving to the site of DNA damage.
Removing alpha-synuclein in human cells lead to increased DSB levels after receiving chemotherapy drug (bleomycin) treatment, and a reduction in the ability to repair these DSBs, compared to healthy human cells.
Removing alpha-synuclein in mice (the knock-out mice) also resulted in increased DSBs, following bleomycin treatment.
Giving healthy human alpha-synuclein to the alpha-synuclein knock-out mice, restored the mice cells’ DNA damage response to normal levels.
What Does This Mean?
This study suggests that the abnormal clumping of alpha-synuclein cells into the form of Lewy Bodies diminishes the available healthy alpha-synuclein to do its job of assisting in DNA damage repair (DSBs). This lack of repair triggers the cell death process, because the cell is damaged to the point where it can no longer function normally.
Of note, while this study was not designed only for Parkinson’s, these finding may offer insights as to how abnormal alpha-synuclein clumping leading to Lewy Bodies may result in the increase of cell death of dopamine-producing cells. These findings could inform the development of new PD treatments that target alpha-synuclein-mediated DNA repair mechanisms.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the Parkinson’s and LID in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).
Schaser, A. J., Osterberg, V. R., Dent, S. E., Stackhouse, T. L., Wakeham, C. M., Boutros, S. W., . . . Unni, V. K. (2019). Alpha-synuclein is a DNA binding protein that modulates DNA repair with implications for Lewy body disorders. Sci Rep, 9(1), 10919. doi:10.1038/s41598-019-47227-z
Meet the Researcher: Protein May Predict Dementia Progression in Parkinson's
Over the next three years the Parkinson’s Foundation will invest more than $50 million to Parkinson’s disease (PD) research and clinical care. At the heart of our research initiatives are scientists and researchers who have received Foundation awards to improve our understanding of Parkinson’s, which will ultimately lead us to a cure.
The dementia that many people with Parkinson’s disease develop greatly affects both those who experience it as well as their families. Parkinson’s-related dementia is associated with significant increases in illness and death compared with people who have Parkinson’s without dementia. There are currently no tests to determine which people with Parkinson’s will develop dementia and/or how quickly they will do so.
About 80% of people with Parkinson’s develop dementia by about 15 years after their PD symptoms appear. However, there is a wide variation. In some people, dementia begins as early as a few years after PD symptoms start. Other people have near-normal cognition after more than 15 to 20 years of PD motor symptoms. This difference may be related to different strains of the protein alpha-synuclein (α-synuclein), which is central to Parkinson’s.
Liana Rosenthal, MD, PhD, at Johns Hopkins University School of Medicine, received a Parkinson’s Foundation Clinical Research Award to study markers of dementia in people with PD. Her goal is to determine whether a specific, less toxic strain of α-synuclein is associated with slower progression of dementia.
To accomplish this, she will study α-synuclein from the fluid in the brain and spinal cord from people with Parkinson’s with and without dementia. Identifying progression markers for PD-related dementia, might allow us to improve the function and health of people with Parkinson’s.
Parkinson's Foundation Clinical Research Awards help facilitate the development of clinician scientists, ensuring that promising early career scientists stay in the PD field to help us solve, treat and end this disease.
What's Next: Reporting Our Findings
Parkinson’s Foundation research awards fund Parkinson’s studies than can span up to three years. Scientists submit yearly progress reports to the Parkinson’s Foundation, and we report findings once the studies have concluded. Stay up to date with our latest research findings at Parkinson.org/Blog.
To have a good night’s sleep, we should work to create healthy habits and a sleep routine. Just as you brush your teeth to maintain good dental health, there are things you can do to improve nighttime sleep and daytime alertness.
Sleep-related symptoms are reported by more than 75 percent of people with Parkinson’s disease (PD). For people with PD, sleep becomes even more important as the body needs more time to restore and repair itself. The brain changes that are part of PD can also cause sleep disorders and some people have problems sleeping even before PD is diagnosed.
Getting enough sleep is essential, not just for people with PD. These seven tips can help you create healthier habits for a better sleep.
1. Set a schedule
Set a specific time to go to bed. Making this a habit will help you keep track of the hours you sleep and maintain a schedule. Going to bed and getting up at the same time helps set good sleep-wake rhythms.
2. Limit naps
If you nap, try to do so at the same time every day, for no more than an hour, and not after 3 p.m. Daytime naps may make it hard to fall and stay asleep at night. Not all naps are bad, studies have shown that short naps (lasting 15–20 minutes) may improve mood, alertness and performance on activities of daily living and other tasks.
3. Spend time in natural light
Light helps set our internal clock. Studies have linked daytime exposure to natural light with sounder sleep. If you can’t get outdoors, consider light therapy — sitting near a light therapy box. Studies have also suggested that movement and non-movement symptoms may improve with light therapy.
4. Exercise
For people with Parkinson’s, exercise can help maintain balance, mobility and activities of daily living. Among many of its benefits, exercise promotes good sleep. After a workout, give yourself a few hours to let your body regulate its temperature, adrenaline and heart rate. Try to exercise every day and avoid exercise after 8 p.m.
5. Avoid caffeine nicotine and alcohol
While coffee can help with daytime sleepiness, caffeine and nicotine are stimulants that can cause insomnia. Avoid them in the afternoon or at night. Alcohol may help you fall asleep, but sleep can be interrupted as your body processes alcohol.
6. Relax
Getting in a relaxed mood can reduce anxiety and lead to better sleep. Make relaxation rituals a habit and listen to music or take a warm bath to settle down. Do not watch television in bed; try to use the bed for sleeping or sexual activity.
7. Regulate the bedroom temperature
A cooler temperature is better for sleep but try to avoid temperature extremes. Environments that are too cold or too warm are not conducive to good sleep. Regulating the temperature will help with your relaxation and sleeping mood.
Sleep is a critical topic of interest for the PD community, which is why the Parkinson’s Foundation has multiple resources dedicated to address it:
10 Ways We Helped Our Parkinson’s Community This Year
Together, we made life better for people in our Parkinson’s community in 2019. Your support allowed us to launch new, exciting initiatives that are changing lives, while funding critical research and local classes tailored to people with Parkinson’s disease (PD). With your support, we are reaching more people living with this disease in the U.S. and are closing the gap to help the 60,000 Americans diagnosed every year.
Thanks to YOU, we were able to accomplish the following in 2019:
Funded $12.2 Million to Further Parkinson’s Research
This was an impactful year for Parkinson’s research. We established four new Research Centers that will receive a total of $8 million to launch PD-specific research studies. We also simultaneously funded $4.2 million across 46 research grants that support the work of promising scientists in the PD field, cutting-edge clinical trials and fellowships.
Partnered with Michael J. Fox Foundation for Parkinson’s Research to Report New Economic Burden and Host Policy Forum
In 2019, we collaborated with the Michael J. Fox Foundation (MJFF) to publish that the economic burden of Parkinson’s is nearly $52 billion every year. Together, we also hosted the 2019 Parkinson’s Policy Forum, bringing more than 150 advocates from across the U.S., along with leading experts in PD research to advocate for our community.
Appointed Aware in Care Ambassadors
In 2019, we appointed our first-ever Aware in Care Ambassadors, a volunteer group to help distribute Aware in Care kits that serve to bolster best practices in treating patients with Parkinson’s disease to both patients and healthcare providers.
As much as we accomplished in 2019, we are committed to furthering our reach and impact in 2020 to help even more people live better with Parkinson’s. Your continued support is the only way we can make that happen. Thank you.
Q&A with Parkinson's Experts Donna Hood and Tara Haskins
Donna Hood, PhD, Chair of Division of Nursing and Tara Haskins, PhD, Associate Professor of Nursing at Louisiana Tech University are Parkinson’s Foundation Nurse Faculty Award recipients who received grant funding to launch The Parkinson Resource Center at Louisiana Tech University. The center is a Parkinson’s disease (PD) resource center for the underserved communities in rural Louisiana and South Arkansas that utilizes university resources and is led by nursing students to provide support for those living with Parkinson’s.
How did the Parkinson’s Foundation Nurse Faculty Award help establish the Parkinson Resource Center?
Dr. Haskins: The idea of the center a was born on the long ride home following the Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson’s Foundation Donna and I completed in Birmingham, AL. When the Parkinson’s Foundation Nurse Faculty Award grant opportunity was announced, we knew it was a way to fund the Parkinson Resource Center. This grant covered the costs of office expenditures, promotions, printing, off site travel and most importantly the support of our Parkinson Resource Center (PRC) Nursing Student Scholars.
Dr. Hood: Dr. Haskins and I were thrilled that we received the award! When we listened to the needs of our PD community and recognized the ways Louisiana Tech University could come together to address these needs, we knew funding was required to jump start the process. This Award did just that.
After one short year, we have a committed PRC Board, we oriented our second team of PRC nursing student scholars, we have a Parkinson’s researcher as one of our University’s New Frontiers speakers and we have training underway for LSVT-LOUD and Dance for PD. The Center and resources for those with PD are growing every month.
How does the Center teach future nurses about Parkinson’s?
Dr. Haskins: The center hosts Parkinson Resource Center Nursing Student Scholars, who are students chosen to learn about Parkinson. They learn and execute organization, program development and community outreach. The Center provides a collaborative space between select undergraduate nursing students and Edmond J. Safra Visiting Nurse Scholars, making this one of my most rewarding experiences as a Nurse Educator. There is no way our Center could have succeeded so quickly without these students. Their energy and passion are at the heart of the Center.
How will the Center benefit rural Louisiana and South Arkansas PD communities?
Dr. Haskins: The Resource Center serves two goals. First, we are making connections with PD patients and their families in our surrounding areas with a focused effort on our rural populations. We know that living in rural areas creates multiple challenges when someone is searching for answers, resources and support for those living with Parkinson’s.
The second goal is to provide opportunities for not only nursing students, but also other students entering healthcare fields. We are building a coalition of the next generation healthcare professionals that will likely serve rural Louisiana and South Arkansas with enhanced Parkinson awareness and a better understanding of the needs and challenges faced by people with PD and their families.
How did being an Edmond J. Safra Visiting Nurse Faculty Scholar influence this project?
Dr. Hood: The entire program was such a rich learning experience. Our original project to complete the program was a care partner study of Rock Steady Boxing participants at Louisiana Tech University where we learned about their initial distress following a PD diagnosis and their search for help and hope. The intensive immersion experience of the Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson’s Foundation opened our eyes to multidisciplinary approaches to support the wide range of needs for those with PD and their care partners.
We were encouraged by the expertise of the tremendous movement disorder team at the University of Alabama at Birmingham. We knew that those with PD in our area did not have immediate access to the wide range of support services that we saw in Birmingham, which inspired Tara and I with the idea to create a Parkinson Resource Center.
How does the Center connect interdisciplinary teams and nursing students with the Parkinson’s community?
Dr. Haskins: We knew early on that our fantastic University resources would benefit the Center. What surprised us was how quickly and passionately other faculty across our campus recognized the value in what we were doing.
Faculty from Nutrition and Dietetics and Speech-Language Pathology (SLP) are replicating the nursing student scholar model, have an undergraduate Parkinson’s scholar and added LSVT Loud to their master’s curriculum. Nutrition-Dietetics faculty are working with students to develop recipes specific for the nutritional, swallowing and cooking safety needs of Parkinson’s patients. We worked with the Visual Integration of Science Through Arts (VISTA) program and our nursing student scholars to develop the Center’s logo and visual literacy tools. These students are getting real life skill application of skills for their future careers while advancing health outcomes of Parkinson’s patients and their families.
Our plans are to extend the interdisciplinary model off campus with an intensive multidisciplinary clinical day in a movement disorder clinic. We hope to add our Health Information Management program to the growing list of University collaborations in the year.
From my experience with the Edmond J. Safra Visiting Nurse Faculty Program, I was asked to serve as a faculty consultant for a Biomedical engineering student project targeting tremors in PD patients.
What Parkinson’s Foundation resources help you, your team or patients?
Dr. Hood: The support from the Parkinson’s Foundation did not end after attending the nurse faculty program. This program served as a springboard to connect us to the Parkinson’s Foundation and the tremendous team working to make a difference in the lives of those with PD.
We continue to make connections across the U.S. and globe. The Parkinson’s Foundation program connected us to a group of nursing scholars who are involved in other innovative approaches to educate the next generation of nurses. The Foundation also serves as a primary source of education for our nursing student scholars who work in the center.
The Foundation has been wonderful to supply education resources for the Parkinson’s community such as Aware in Care kits, which we make available through community outreach activities. We are currently working with the Foundation to coordinate a workshop for our PD community. This amazing collaboration continues to grow.
What's Hot: Nilotinib Study Results Show People with Parkinson’s Disease Should Pass on This Drug
The past two weeks have offered more definitive information on Nilotinib (Tasigna), a drug already approved for treatment of leukemia, as a potential treatment for Parkinson’s disease (PD) symptoms. On December 16, JAMA Neurology published the results of a Phase II safety trial ― a study that tests the effectiveness of a drug or treatment in a larger group of people. Study findings revealed that Nilotinib had more adverse events than the placebo (a pill not containing an active drug) but was reasonably safe. An accompanying editorial and podcast discuss the narrowing path forward for this drug in Parkinson’s disease as the clinical effects were unfortunately not robust.
Northwestern University, a Parkinson’s Foundation Center of Excellence, and the Parkinson Study Group, in a study led by Tanya Simuni, MD, in the NILO-PD study (25 sites) reported that Nilotinib was safe and tolerable but did not “exert a clinically meaningful benefit or biological effect to benefit those with Parkinson's disease.”
Though there may be a potential future for cancer drugs called C-Abl inhibitors to be repurposed for Parkinson’s disease, we are recommending that people with Parkinson’s and families pass on this particular drug at this time. Though it is reasonably safe, it is still a drug used as a cancer treatment with more adverse effects than in the placebo group. The data on the medication’s effectiveness was weak at best and does not justify the risk for treatment. There was an accompanying editorial in JAMA Neurology and a podcast on the narrowing path forward for this and other similar drugs found here.
Study authors address the idea of “reasonably safe,” biomarkers, clinical outcomes and implications for future clinical trials. Though the Parkinson Study Group Trial co-sponsored by the Michael J. Fox Foundation results have not been published, the trial was stopped. We expect to see the full publication in the next few months.
Previously, Nilotinib was tested for safety in a phase I clinical trial ― a trial where researchers test a new drug or treatment in people for the first time ― on a small group of participants with Parkinson’s several years ago at Georgetown University Hospital, a Parkinson’s Foundation Center of Excellence. The original study was small and did not include a placebo.
While Nilotinib may not be the answer the PD community was looking for, the Parkinson’s Foundation firmly believes research breakthroughs can happen at any moment, which is why the Foundation continues to fund critical research, from clinical trials to new initiatives.
Learn More
Find out more about Parkinson’s and Nilotinib in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).
Learn how to prevent falls before the sunset and temperatures begin to change.
Falling leaves and early sunsets mean Autumn is here. These seasonal changes, along with Parkinson’s disease (PD) symptoms of slowness of movement, rigidity throughout the body and balance difficulties can increase the risk of falling for people with PD. Did you know:
Every year, approximately 38 percent of people with Parkinson’s fall.
Rehabilitation can take longer. The average hospital stay for someone with PD is longer than for people who do not have Parkinson’s. Be prepared for planned and unplanned hospital stays by ordering your free Aware in Care hospitalization kit.
Falls related to PD symptoms occur mostly when turning or changing directions while walking and is often related to a “freezing” episode.
Recovering from a fall is much more difficult than preventing a fall, so take these steps to decrease your risk:
Having trouble with balance is a significant risk factor for falls and poor posture makes this worse. Follow these steps to establish good posture:
Stand with your back against the wall, feet flat on the floor with the heels approximately three to four inches or less from the wall.
Hold your head upright with your chin parallel to the floor, focus on a target at eye level.
Relax the arms and shoulders.
The buttocks, shoulder blades and, if possible, the back of the head should be touching the wall. Focus on keeping chin parallel with the floor and the eyes focused on the target.
Improve your balance with these steps:
To strengthen the lower body (leg muscles/base of support) try chair squats or stationary lunges.
To strengthen the core (abdominals, chest and back muscles/center of gravity) try abdominal and back exercises or Pilates mat work.
To improve ankle flexibility, flex the ankle and toes, point your toes and stretch the calf and hamstring muscles.
As soon as we dial the clock back an hour, your home will get darker earlier. Try these fall prevention preparations:
Ask your health care team to help you asses your biggest fall risk factors — whether they are medications, stress or environmental hazards.
Work with a physical therapist BEFORE a fall occurs. He or she can teach you a safe method for getting back up and can teach caregivers the best way to assist their loved one while avoiding back injuries.
Identify someone who can help you in case you fall — a nearby friend or neighbor. Consider purchasing an emergency call button for your home.
Help your body adjust to the new time change faster. Each morning, open all shades and make the home as bright as possible. During the day, go for a walk or read outside while there is still sun (bring your sunscreen). At night, try to go to sleep at the same time each day.
Consider following our Home Safety Tour Checklist: make sure your home is well-lit during waking hours. In the bathroom, use non-skid surfaces and grab bars. Raised toilets and low beds also help reduce injuries when getting up and down. In the living room, move coffee tables and clear all walking paths.
No one is completely immune to a fall, however people with Parkinson’s are especially vulnerable. Take an honest inventory of your abilities and limitations and take charge of your physical condition by getting adequate nutrition, rest, exercise and mental activity. Take the time to slow down and focus on what you are doing and plan complex movements carefully.
If you are worried about your fall risk, consider asking your doctor for a physical and/or occupational therapy referral — it should be covered by your insurance. Talk to your doctor before beginning the exercises outlined in this article.
Men are more likely to develop Parkinson’s disease (PD) than women, and the onset of PD in men happens at a younger age. However, women with PD have a higher mortality rate, and once they have Parkinson’s, progression is faster. Research suggests that women get the disease at later in life when compared to men, at least in part, due to the natural protection estrogen provides. There are studies that have demonstrated that hormone replacement therapy (HRT) can provide dopaminergic neuroprotection in both young and menopausal female mice.
Could the female sex hormone, estrogen, be a therapeutic approach for delaying or reducing PD symptoms for men?
Recently published in the Journal of Neuroscience, a study titled, “Female Sex and Brain-Selective Estrogen Benefit α-Synuclein Tetramerization and the PD-like Motor Syndrome in 3K Transgenic Mice” (Rajsombath, Nam, Ericsson, & Nuber, 2019) investigated this possible therapeutic neuroprotective effect.
What is a 3K mouse? A type of mouse bred for research studies with a change in alpha-synuclein (a protein central to Parkinson’s) that mimics the toxic form found in Parkinson’s. These mice help researchers test how treatments and chemicals in the brain can impact Parkinson’s
Using mice called 3K that show motor and neural changes associated with PD, researchers injected male mice under the skin with the hormone therapy DHED. What makes DHED so special is that it was designed to only activate estrogen in the brain. This matters because estrogen therapy has been associated with an increase in cancer in other parts of the human body.
The motor performance and brain health of the 3K male and female mice were compared along with whether DHED affects the progression of PD-like symptoms in males. The motor evaluations included their ability to clasp, climb down a pole, gait (walk) and balance on an accelerating rotarod, which is a lot like lumberjack logrolling. There were also highly sophisticated tests to determine possible changes in the build-up or clearing of protein clumping in the brain, along with the decline or increase in the health of dopamine neurons.
Results
Like the sex differences found in people with PD, 3K male mice developed PD-like symptoms faster than female mice. Furthermore, male mice treated with DHED had:
Improved clasping abilities
Improved downclimbing
Improved gait
Improved balance
Better clearing of risky alpha-synuclein (protein clumps in the brain)
Healthier dopamine neurons
What Does This Mean?
This study focused on the 3K male mice and how they responded to the estrogen therapy, DHED. When the male mice were treated with the DHED, they showed improvements in all the motor functions tested. They also showed significant improvements in the brain, including healthier dopamine neurons and lower amounts of alpha-synuclein at risk for clumping. Remember, clumped alpha-synuclein becomes Lewy Bodies ― a hallmark of PD.
It is also important to note that the successful development of the 3K model itself – which duplicates many differences in male and female PD at motor, cellular and molecular levels – is a significant step forward in closing the gender gap in PD research. Having a model that helps unravel how the pathology differently affects the two sexes informs new avenues of research that could lead to the development of tailored medications and interventions to meet the distinct needs of men and women with PD.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the Parkinson’s and Gender differences in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).
Cerri, S., Mus, L., & Blandini, F. (2019). Parkinson's Disease in Women and Men: What's the Difference? J Parkinsons Dis, 9(3), 501-515. doi:10.3233/JPD-191683
Georgiev, D., Hamberg, K., Hariz, M., Forsgren, L., & Hariz, G. M. (2017). Gender differences in Parkinson's disease: A clinical perspective. Acta Neurol Scand, 136(6), 570-584. doi:10.1111/ane.12796
Miller, I. N., & Cronin-Golomb, A. (2010). Gender differences in Parkinson's disease: clinical characteristics and cognition. Mov Disord, 25(16), 2695-2703. doi:10.1002/mds.23388
Rajsombath, M. M., Nam, A. Y., Ericsson, M., & Nuber, S. (2019). Female Sex and Brain-Selective Estrogen Benefit alpha-Synuclein Tetramerization and the PD-like Motor Syndrome in 3K Transgenic Mice. J Neurosci, 39(38), 7628-7640. doi:10.1523/JNEUROSCI.0313-19.2019
