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