GET UP exercise program from UAH and UAB

A New Perspective on Being a PD Care Partner

An Inside Look at Parkinson’s Disease Care Partners

Being a care partner for someone with Parkinson’s disease (PD) can be a difficult, but potentially very rewarding role. Making it even more challenging is the fact that the role is assigned without consent of the care partner, without any training and without the option of refusal. Care partners often lack confidence in their caregiving skills and are very unsure about whether they are performing their responsibilities adequately.
Dr. Kevin Klos would like to change that.
Dr. Klos is a movement disorders physician in Tulsa, OK where he has close ties to the APDA Oklahoma Chapter.  He has 20 years of experience taking care of people with PD and educating families, and has a particular interest in understanding the challenges of caregiving in PD. This is informed by the fact that he is also a care partner for his mother, Judy, who has PD. He is committed to helping his fellow caregivers with education and support to guide them on their journey with their loved one.  His main message is that care partners, despite all their misgivings, generally do an excellent job. I sat down with Dr. Klos for a conversation about caregiving.
Q: You are a movement disorders physician with more than 20 years of experience treating people with PD. What made you explore the topic of caregiving?
A: In my practice, I see my patients progress in their disease slowly over the years. The care partner role became more and more dominant with time.
When my mom was diagnosed with PD, I gained a new perspective on being a care partner and I wanted to explore resources for care partners. I realized that there was limited information that was directed specifically to caregivers.
I practice in Tulsa, OK, and in the past there has not been a lot going on locally for care partners. What I saw happening for example, was that an impromptu caregiving support group would develop on the side as the boxing class for people with PD was going on. There was clearly a need for care partners to learn more about caregiving from each other. Caregiving is not a role that you ask for, or that you can train for. It is a role that is thrust upon you. I realized that I wanted to explore resources for care partners and expand the resources that were available. I started by researching the area of caregiving among my patients.
Q: How did you investigate caregiving in your practice?
A: About seven years ago, I started a project in my own clinic, gathering information from both care partners and patients. I distributed comprehensive surveys and questionnaires, conducted anonymously during the clinic visits. Surveys from a care partner and person with PD pair, were linked. I also had my nurses extract information from the medical chart to couple it with the anonymized survey results, so we knew certain details about the person with PD, such as what stage of PD he/she was in.
The surveys were not focused on the

Therapies for non-motor symptoms of PD in clinical trials

The pipeline for Parkinson’s disease (PD) medications is extremely crowded these days, with multiple medications at various stages of research and development. Currently most of the approved medications for PD address the motor symptoms of PD – tremor, slowness, stiffness, and walking difficulties. Medications are also available to help people overcome OFF time or improve dyskinesias.
Clinical Trials for Non-Motor Symptoms of PD
One of the major unmet needs in PD treatment is therapies for non-motor symptoms  (such as cognitive issues, psychosis, constipation and others) as these can have a significant effect on daily quality of life for both the person living with PD and their care partner. Therefore, it is particularly exciting to witness compounds being studied in clinical trials for these symptoms. Many of the currently active clinical trials for non-motor symptoms involve studying medications that are already approved for other diseases or uses, in hopes of determining if the medication also works for a particular symptom in the context of PD. Although these trials are crucial, this blog will focus on clinical trials of newly developed compounds aimed to specifically treat non-motor symptoms in PD.
If you are interested in getting involved in a clinical trial, Clinicaltrials.gov is a website that you should know about. It is a database of all clinical trials for all diseases worldwide. When a clinical trial is registered with the site, it is assigned a unique number called the National Clinical Trial (NCT) number. I will be referring to these numbers as I outline the clinical trials that are being conducted for newly developed compounds for non-motor symptoms of Parkinson’s disease so that you can learn more about them if you’re interested in participating in the trial.
Treating Non-Motor Symptoms of Parkinson’s Disease
 Cognition
Treatment of cognitive difficulties in PD is a major unmet need. There is only one medication approved for PD dementia, called rivastigmine, and its effects are mild. Research efforts are focused on trying to develop new therapies to improve this symptom.

SAGE-718 is an NMDA receptor positive allosteric modulator, a molecule that enhances the activity of the NMDA receptor. It is currently being studied in a Phase 2 open label trial (meaning that everyone receives the active compound and no one receives a placebo) for people with PD and mild cognitive impairment (NCT04476017). In order to be considered for the trial, participants must have a Montreal cognitive assessment (MoCA) of 20-25 (a range of scores meant to target people with mild cognitive impairment.)

This molecule has previously been tested in Phase I clinical trials, in both healthy people and people with Huntington’s disease (HD). Healthy people were given a molecule that blocks the NMDA receptor before administration of SAGE-718 or placebo. Those receiving SAGE-718 showed a statistically significant improvement of measures of working memory and complex problem solving. The molecule was also tested in six people with HD, a neurodegenerative condition that often results in dementia and although is very distinct from PD, does share some of its features. This study was open label (no placebo group). Participants

Where are they now? APDA’s research success

Q&A with APDA research grant recipients
 
Since 1961, APDA has been a funding partner in many major scientific breakthroughs and has awarded more than $49 million in research grants to date.
APDA funds individual research grants and fellowships to scientists performing innovative Parkinson’s disease (PD) research. Grants are awarded through a competitive application process and

reviewed by APDA’s Scientific Advisory Board (SAB). The SAB is comprised of scientists with a wide array of backgrounds and expertise in all areas relevant to Parkinson’s disease research.
One of our goals is to bring the best new talent to the field of PD research and help encourage a passionate pursuit for answers. As such, after APDA awards a grant and the project is undertaken, we hope that the story does not end there. The funding of one project can lead to additional hypotheses to test and additional research funding from other funding sources such as the National Institutes of Health (NIH). Each step brings the PD research community closer to new treatments and eventually, a cure.
Learn how to apply for research funding
Today, we highlight three researchers who were awarded past APDA grants. We asked them about the work that was funded at the time and what has happened in their research and careers since. We hope you are inspired by their passion for their work, and encouraged by the impact APDA funding has had on their research trajectory.

Mian Cao, PhD, grant recipient in 2013:
You received a grant from APDA in 2013. Can you give us a brief summary of the results of that project and its potential implications for the PD community?
In our APDA supported project, we investigated Parkin, a protein which is mutated in some forms of familial PD. We examined the role of Parkin at the synapse, the junction between two nerve cells, and particularly its role in endocytosis at the synapse, the process by which cellular material gets internalized into the cell. We found that Parkin is abnormally increased in mice defective in endocytosis and that Parkin directly interacts with particular proteins important in endocytosis, endophilin and SJ1. Our findings suggested the potential function of Parkin in regulating endocytic trafficking at synapses. Understanding what Parkin does in the cell under normal circumstances can help us understand what goes wrong to cause PD when Parkin is mutated.
What has been the general trajectory of your research and your career since 2013?
When I received the APDA award in 2013, I was a postdoc fellow in Dr. Pietro De Camilli’s lab at Yale. After that, I advanced to become an Associate Research scientist in Dr. De Camilli’s lab. In 2019, I moved to Singapore and started my own lab at Duke-NUS Medical School as an Assistant Professor.
Did your APDA grant help shape the next steps of your research? If so, how?
This APDA project was the first one I spearheaded on my own during my postdoc training. Since then, I continued to focus on PD research and have had continued success in discovering the disturbances in endocytosis related to

Parkinson’s Partners: Introducing Medical Students to Parkinson’s disease

As all of you know very well, Parkinson’s disease (PD) is a complex disorder that affects so many parts of a person’s life. In order for physicians to fully understand the impact the disease has on people with PD, it is not enough to learn the science and medicine of the condition. But how is it possible to teach a physician what it feels like to have PD?
One program that attempts to do just that, was pioneered at University of Louisville School of Medicine in Louisville, KY and adapted at Boston University (BU) School of Medicine. Parkinson’s Partners is a program in which first year medical students are paired with people with PD for a semester full of activities.
The goal of the program is to expose physicians-in-training to the “person behind the disease”, while engaging in activities that are therapeutic for people with PD. APDA has a long-standing and strong partnership with BU and we’re proud of their commitment to the PD community.
About Parkinson’s Partners
At BU, student leaders guided by the BU Movement Disorders faculty, recruit first year students who have not yet had clinical experience, and pair them up with PD patients of the BU Movement Disorders clinic. The student leaders plan and implement regular activities throughout the year that allow the student and the person with PD to form a mutually beneficial relationship. Since its inception in 2017, the students and faculty have also collected data and information on the program and on lessons learned.
BU School of Medicine has many close ties with APDA. One of APDA’s Information and Referral Centers is housed at BU, which worked in tandem with APDA’s Massachusetts Chapter. BU also houses an APDA Center for Advanced Research.
The Medical Director of BU’s Parkinsons disease and Movement Disorders center is Dr. Marie-Helene Saint-Hilaire, who is a long-standing member of APDA’s Scientific Advisory Board. BU also houses APDA’s National Rehabilitation Resource Center. APDA is therefore particularly proud of the Parkinson’s Partners BU initiative.
I spoke with Taylor Francoeur and Max Rosenthaler, two current 4th year medical students at BU who started the program in 2017, as well as Dr. Katelyn Bird, Assistant Professor of Neurology and Movement Disorders physician at BU who is the faculty advisor for the program. They shared their thoughts about the inception of the program and its value to the students of BU and to people with PD. Note: Some answers have been combined and edited for clarity.
How did you come up with the idea for Parkinson’s Partners?
Taylor and Max: We came up with this idea with help of Dr. Saint-Hilaire, one of the Movement Disorders faculty members at Boston University Medical Center. She asked if any students would be interested in developing a student partnership program for PD patients. She had heard of a program that was started at the University of Louisville and knew of the benefits it might provide for the PD population. We worked with her and Dr. Stephanie Bissonnette (who was a Movement Disorders fellow at the time and is now

Where are they now? APDA’s research success

Q&A with APDA research grant recipients
 
Since 1961, APDA has been a funding partner in many major scientific breakthroughs and has awarded more than $49 million in research grants to date.
APDA funds individual research grants and fellowships to scientists performing innovative Parkinson’s disease (PD) research. Grants are awarded through a competitive application process and

reviewed by APDA’s Scientific Advisory Board (SAB). The SAB is comprised of scientists with a wide array of backgrounds and expertise in all areas relevant to Parkinson’s disease research.
One of our goals is to bring the best new talent to the field of PD research and help encourage a passionate pursuit for answers. As such, after APDA awards a grant and the project is undertaken, we hope that the story does not end there. The funding of one project can lead to additional hypotheses to test and additional research funding from other funding sources such as the National Institutes of Health (NIH). Each step brings the PD research community closer to new treatments and eventually, a cure.
Learn how to apply for research funding
Today, we highlight three researchers who were awarded past APDA grants. We asked them about the work that was funded at the time and what has happened in their research and careers since. We hope you are inspired by their passion for their work, and encouraged by the impact APDA funding has had on their research trajectory.

Mian Cao, PhD, grant recipient in 2013:
You received a grant from APDA in 2013. Can you give us a brief summary of the results of that project and its potential implications for the PD community?
In our APDA supported project, we investigated Parkin, a protein which is mutated in some forms of familial PD. We examined the role of Parkin at the synapse, the junction between two nerve cells, and particularly its role in endocytosis at the synapse, the process by which cellular material gets internalized into the cell. We found that Parkin is abnormally increased in mice defective in endocytosis and that Parkin directly interacts with particular proteins important in endocytosis, endophilin and SJ1. Our findings suggested the potential function of Parkin in regulating endocytic trafficking at synapses. Understanding what Parkin does in the cell under normal circumstances can help us understand what goes wrong to cause PD when Parkin is mutated.
What has been the general trajectory of your research and your career since 2013?
When I received the APDA award in 2013, I was a postdoc fellow in Dr. Pietro De Camilli’s lab at Yale. After that, I advanced to become an Associate Research scientist in Dr. De Camilli’s lab. In 2019, I moved to Singapore and started my own lab at Duke-NUS Medical School as an Assistant Professor.
Did your APDA grant help shape the next steps of your research? If so, how?
This APDA project was the first one I spearheaded on my own during my postdoc training. Since then, I continued to focus on PD research and have had continued success in discovering the disturbances in endocytosis related to

La Asociación Americana de Enfermedad de Parkinson lanza la App Diario de síntomas en con funciones ampliadas

La App es fácil de usar y ayuda a las personas con la enfermedad de Parkinson realizar un seguimiento de sus síntomas y comunicarse con su equipo de atención médica
¡Una versión en español está disponible!
NEW YORK, NY – 18 de noviembre de 2020. The American Parkinson Disease Association (la Asociación Americana de Enfermedad de Parkinson o APDA ) lanza una aplicación nueva y aumentada, la App El Diario de síntomas de la APDA 2.0-una aplicación móvil especializada para personas viviendo con la enfermedad de Parkinson (EP). Esta versión actualizada es gratis y contiene funciones amplificadas para facilitar el seguimiento de los síntomas y medicamentos para las personas con EP, y poder relatar esa información a los miembros de su equipo de atención médica; con la meta de recibir cuidado de salud que es personalizado para cada persona. Una versión en español está disponible, lo cual permite que más personas puedan beneficiarse de esta tecnología y refleja la dedicación de la APDA de servir y apoyar las comunidades con EP que no son suficientemente representadas.
La App Diario de síntomas 2.0 de la APDA guía a las personas con preguntas simples para calificar como ciertos síntomas motores (como el temblor, la rigidez, el balance) y otros síntomas no motores (alucinaciones, delirios, fatiga, ansiedad, depresión y otros) le están afectando. Luego crea una gráfica indicando los síntomas que más le están impactando la calidad de vida y que son guardadas en la sección de “Mi biblioteca” en la App, y que también puede ser enviada por correo electrónico directamente a los profesionales de salud. Con el tiempo, las personas pueden comparar los resultados para ver si sus síntomas están empeorando, y determinar cuales síntomas merecen más atención.
La versión actualizada de la App el Diario de síntomas 2.0 tiene las siguientes nuevas funciones:

Un seguimiento de medicación donde puede registrar los medicamentos específicos y las dosis y la hora del día que toma sus medicamentos lo cual ayuda a identificar oportunidades para manejar los síntomas (la dosis y horario de medicamentos es muy importante en vivir con EP).
Notificaciones y recordatorios incluyen:
recordatorio para registrar los síntomas en la App
notificaciones automáticas de programas educativos y nuevos tratamientos
recordatorios para compartir información con su médico antes de sus sitas
Una versión en español que ha sido creada por y para personas de habla hispana (no una simple traducción de la versión en inglés).

Las nuevas funciones son importantes porque todas las personas con EP sufren con síntomas diferentes y los síntomas pueden variar diariamente. Lo más específico que la persona con EP puede comunicar sus síntomas con su médico y el horario de sus medicamentos, hace más fácil para su médico adaptar un plan de tratamiento personal para cada persona. Pero puede ser difícil para las personas recordar como ciertos síntomas le están afectando actualmente o en el pasado desde la última visita con su médico o si ha olvidado una dosis de sus medicamentos.
“Como una especialista en trastornos de movimiento, mientras más mis pacientes me pueden decir de sus síntomas,

American Parkinson Disease Association Releases Symptom Tracker Mobile App With Expanded Features

User-Friendly App Helps People with Parkinson’s Disease Track Their Symptoms and Communicate With Their Healthcare Team for Better Care
Spanish-language Version Now Available!
NEW YORK, NY – November 18, 2020,  The American Parkinson Disease Association (APDA) launches today a new and improved APDA Symptom Tracker App 2.0 – a highly-specialized mobile application for people living with Parkinson’s disease (PD). The updated version remains free of charge and features enhanced functionality which will significantly improve the ability of a person with Parkinson’s disease (PD) to easily and accurately track their PD symptoms and medications, and relay that important information to members of their medical team; with the ultimate goal of receiving better, more personalized care. A Spanish-language version of the app is now available as well, which enables a much larger audience to take advantage of this technology and builds upon APDA’s commitment to better serve and support under-represented PD communities.
With a mission to help everyone impacted by PD live life to the fullest, APDA originally developed the APDA Symptom Tracker App in 2019 as an important tool to help people play a more active role in their PD care. After a year of user feedback and continued research, the APDA app has now been significantly upgraded with features that make it even more useful as part of an integrated PD care plan. The development of this app and its upgrades were made possible by generous financial support from Acadia Pharmaceuticals Inc.
The APDA Symptom Tracker App 2.0 guides people through a simple set of questions that has them rate how certain motor symptoms (such as tremor, rigidity, balance) and non-motor symptoms (hallucinations, delusions, fatigue, anxiety, depression, and others) are affecting them. It then creates a graph indicating which symptoms are most impacting their quality of life in which can be saved in the “My Library” section of the app, and can also be emailed directly to members of their health care team, right from the app. Over time, people can compare the results to see if certain symptoms are getting worse, and determine which symptoms need to be addressed more urgently than others.
The improved APDA Symptom Tracker App 2.0 boasts the following new features:

An interactive medication tracker where you can enter the specific medications/doses and the time of day you take them which helps identify opportunities for better symptom management (medication dosage/timing is an incredibly specific and often tricky aspect of life with PD)
Helpful notifications and reminders including:

reminders to enter symptom data into the app
push notifications about helpful education programs and updates on treatments
reminders to share information with the clinician prior to appointments

A Spanish-language version that has been fully created for and by Spanish-speaking people (not simply translated from the English version)

These newly-added features are important because everyone experiences PD differently, and symptoms can vary greatly day by day. The more specific someone can be with their health care team about the types of symptoms they’re experiencing, and the timing of their medication, the better the doctor(s) can tailor a treatment plan specifically for

Boxing for Parkinson’s Disease

Boxing and Parkinson’s Disease
We know without a doubt that exercise is important for people with Parkinson’s disease (PD).  Various types of exercise and movement can help people improve their balance, strength, mobility, flexibility, endurance and walking ability. Studies also reveal that exercise can help improve cognition, depression, fatigue, and sleep. We have discussed exercise in previous blogs and go into great detail in our Be Active & Beyond exercise guide. We’ve also shared tips for exercising safely while at home during the pandemic. We often get questions about boxing as exercise for people with PD – especially about Rock Steady Boxing, a specific type of boxing class for people with PD that is offered around the country. For today’s blog we’ll share a bit more info about Rock Steady Boxing and get input from two experts on the topic so you can decide if this type of class is right for you. Note: Not every boxing-style class designed for people with PD is a Rock Steady Boxing class. There are some independently-run classes that are not affiliated with Rock Steady. For the purpose of this blog, we are specifically discussing the Rock Steady Boxing program.
What is Rock Steady Boxing?
Rock Steady Boxing is a boxing program designed for people with PD, based on exercises that are adapted from the world of boxing that emphasize agility, speed, endurance, accuracy, hand-eye coordination, footwork and strength. The exercises are meant to be vigorous and to push the participants beyond what they perceive they are capable of performing.  Various levels of training have been developed to meet the needs of people with PD at different stages of the disease.  Started at a gym in Indiana in 2006, Rock Steady Boxing developed a system to train fitness instructors across the country and now operates out of more than 870 affiliate locations worldwide. Those interested (personal trainers, physical therapists, boxing coaches, long term care facility staff, etc.) undergo a two-part Affiliate Training Camp — an online course, followed by an interactive in-person or virtual-based hands-on training. Trained personnel can then set up an affiliate Rock Steady Boxing program.
Rock Steady Boxing in the medical literature
Although there is a lot of anecdotal evidence that promotes Rock Steady Boxing, there have only been two small trials that sought to examine the clinical benefits of Rock Steady Boxing. In one study, 31 people with PD were assigned to either a boxing exercise training or traditional exercise for 24-36 sessions, each lasting 90 minutes over 12 weeks. Participants were tested before and after completion of training on measures of balance, balance confidence, mobility, gait velocity, gait endurance, and quality of life. Although the researchers state that their original hypothesis was that boxing would lead to greater improvements than traditional exercise, the study did not bear that out. Both groups demonstrated gains on multiple measures. No outcome measure demonstrated a significant difference between groups except for balance confidence which favored the traditional exercise group. Despite the fact that boxing was not shown to be better than traditional

Is a vaccine for Parkinson’s disease possible?

As the world awaits an effective vaccine for SARS-CoV2 (the virus that causes COVID-19), vaccines and vaccination are at the front and center of the news and in our minds.
A vaccine is a substance that is introduced into the body in order to stimulate the immune system to provide protection against a particular disease.
Did you know that many pharmaceutical companies are working on vaccinations as a treatment for Parkinson’s disease (PD)?  It is important to note that while a vaccine is not imminent, each clinical trial and study that is underway is teaching us something new and important that will hopefully get us closer to a successful outcome. Even the projects that fail offer us substantial learnings that can be applied to future research efforts in this area.
People with PD have protein deposits in their brain (Lewy bodies) which are composed of accumulated α-synuclein. Preventing alpha-synuclein aggregation and dissolving pre-formed aggregates (or clumps) may be an effective strategy for treating PD.
Two related strategies have been devised in order to protect against this accumulation:

Introduction of antibodies to alpha-synuclein into the body, also known as passive immunity
Introduction of a molecule that induces the body to produce its own antibodies against alpha-synuclein, also known as active immunity

The theory is that in both scenarios, the antibodies to alpha-synuclein (either introduced directly or created by the body) would bind to clumped alpha-synuclein and aid in their removal. Let’s look at these scenarios in more depth.
Alpha-synuclein antibodies (passive immunity)
There are multiple research efforts underway to create and test antibodies against alpha-synuclein.
The prasinezumab antibody
This antibody was studied in a Phase 2 trial called PASADENA, with 316 participants, all with newly diagnosed PD who had mild symptoms and were not on any medication for PD. The trial was double-blinded and placebo controlled which means some people received the drug and some did not, and neither the participants nor the researchers knew which group anyone was in.
This trial has been completed and the data has been analyzed. As happens sometimes in research, it unfortunately did not meet its primary endpoint (the original goal which was stated at the outset as the definition of success of the trial). The primary end point for the trial was an improvement over the course of the year in the total Movement Disorder Society-United Parkinson’s Disease Rating Scale (MDS-UPDRS). This scale has four parts. The first two are filled in by the patient or care partner and assess the motor and non-motor symptoms of PD from the patient’s perspective. The third part is a scale that reflects the motor examination performed by the clinician during the office visit. Part four captures historical and objective information about motor fluctuations and dyskinesias. The trial did not show any difference in the total MDS-UPDRS after one year between those receiving the antibody and those who did not.
It did, however, succeed in meeting some of its secondary endpoints (outcomes that were also determined at the start of the trial, but thought to be of lesser significance than the