Exact Medication Timing Matters 

People living with advanced Parkinson’s require medication on time, every time to control tremors, stiffness and make movement easier. This reduces the risk for accidents, falls and complications. 

Healthcare facilities often have a routine schedule to distribute medications. This may not match the timing needs of a person with Parkinson’s. Ask to review your loved one’s medication list and schedule with the care team — confirm they deliver medications at the correct, specific times. It can help if your loved one’s neurologist prescription order lists the exact times medication should be given (for example, 8 a.m., noon, 4 p.m., 8 p.m., versus “every 4 hours”). 

Print these Forms for Your Loved One’s Chart 

Help familiarize staff with PD care. Print and fill out these forms and ask that the care facility keep them within your loved one’s chart: 

• Have your loved one’s neurologist sign this form outlining five PD care priorities.    
• Fill out this Medication Form and share it with the care team. Fill out a new form when prescriptions change and check in with the team to ensure everyone is up to date.
• Print the Parkinson’s Care Summary for Health Professionals document for staff. 

Share Swallowing Risks

Swallowing issues (dysphagia) are common in Parkinson’s. Swallowing symptoms put people with Parkinson’s at high risk for developing aspiration pneumonia, an infection that happens when a person swallows the wrong way and mouth bacteria is pulled down into the lungs. 

People with Parkinson’s need to be screened by a speech-language pathologist for swallowing changes to safely maintain their medication routine and minimize their risk for aspiration pneumonia and weight loss. The speech-language pathologist may recommend a modified or soft-food diet. 

Ask the care facility how they work with a speech-language pathologist or how they can help ensure your loved one has access to one as needed.  

Regular Movement is Medicine

Even as Parkinson’s advances, regular movement is important for managing symptoms, reducing stiffness and other complications related to inactivity.

Physical and occupational therapists can recommend safe stretching, gentle movements or other activity tailored to a person with Parkinson’s abilities and safety needs. 

Let professional caregivers know the importance of remaining calm, being patient, minimizing distractions and avoiding having multiple people giving directions at once. Ask them to use consistent cues like the below, especially when movement is difficult:

• “Big steps” may help minimize shuffling.
• “Stand tall” can encourage straighter posture.
• “Try marching” or “Count your steps” might help someone begin moving during a freezing episode.

Build Bridges with Professional Caregivers

A 2020 study suggests that getting to know your loved one’s professional caregivers can make a meaningful difference. Regular communication helped families and caregivers build familiarity and trust, leading to stronger communication and more meaningful care involvement.

Introduce yourself as your loved one’s care partner, learn the names of staff members and their roles, and take time to say hello when you visit. A kind, patient approach can help build trust and make it easier to work together. Keep in mind staff are learning your loved ones’ needs while also caring for others. 

Collaboration with the care team can help you spot and correct misunderstandings or errors with medications, your loved one’s preferences and other points of care. 

Remember, even though your loved one may be transitioning to a different living situation, you will always be an essential part of the care team. Your advocacy helps ensure the best possible care. 

Learn More

It can feel like there are a lot of moving parts when it comes to ensuring your loved one is receiving the best care as Parkinson’s advances. Learn more with these resources: 

• Navigating your Loved One’s Move to a Long-Term Care Center
• Substantial Matters Podcast episode: Best Practices & Guidance: Navigating Assisted Living and Skilled Nursing Facilities
• Read Finding the Right Skilled Nursing Facility or Finding the Right Assisted Living Facility 
• Watch Advanced Parkinson's and Palliative Care in the 21st Century 
• Read Hospital Safety and Parkinson’s to communicate needs or care concerns during a hospital stay.

Divya Palanisamy, MD, is passionate about improving multigenerational health literacy, helping people better understand general brain health and conditions like Parkinson’s disease (PD) long before a diagnosis. As a Parkinson’s Foundation Wesley G. McCain Movement Disorders Fellow (in honor of Dr. Lucien Côté), she works to support people with movement disorders, both as a physician and an educator.

Dr. Palanisamy completed her fellowship at Columbia University Irving Medical Center, a Parkinson’s Foundation Center of Excellence, and is currently a movement disorders specialist at SUNY Downstate Health Sciences University.

We spoke to Dr. Palanisamy about her exciting work in the PD field, and what inspires her.

What led you to Parkinson’s research? 

I was always interested in movement. I did karate as a kid, and I grew up paying very close attention to how my body moved and how subtle adjustments could have a specific effect. I also always had a love for neuroscience and the brain, and how humans use movement and the mechanics of the brain to shape the way we move throughout the world. 

After I went to medical school, I was putting those two things together and that led me to movement disorders and Parkinson’s disease. As I progressed further in medicine, I started to see myself and other physicians more as educators rather than just people who provide clinical care. A provider can really influence the way someone navigates their own identity because of an illness, and the education piece of the job allows them to help shape the course of care beyond just medications

What spurred your interest in multigenerational health education and community building?

I did a gap year program between undergraduate and medical school called City Year, which is an AmeriCorps program. I was an assistant teacher in a fourth-grade classroom. There was a clear lack of science education — the main focus was math and English. So, I started a neuroscience club, and it really took off. Not only did the kids participate, but they were telling their friends about it. It showed me that kids naturally gravitate toward being ambassadors of health information. 

I started to think about how I could take advantage of their natural inclination to spread information by empowering them to be ambassadors of health information to communities that are challenging to reach in traditional settings. That became my hypothesis. I designed a seven-week curriculum for students in partnership with St. Luke's A.M.E. Church in Harlem, and we did programming on various brain health topics. The program was my first time exploring whether the health information we deliver to children can ripple out into their communities. In piloting this program, I learned a lot and hope to carry these lessons forward.

I also helped build a community website while I was at Columbia University that was meant to be a hub for people who may see a doctor at Columbia but were looking for additional resources. This website, called Community Movers, was meant to be a place doctors could direct people who wanted to see things like a calendar of local events and nearby spiritual information and support. The project showed me, again, how providers can connect people with resources beyond clinical recommendations, which is important for building trust.

How will receiving the Parkinson’s Foundation award impact your career?

The biggest impact is a personal one. This award honors Dr. Côté [Lucien J. Côté, MD, was one of the most respected and beloved PD doctors in the U.S.], and being at Columbia, I was able to talk to some of my mentors and senior attendings there and get a sense of who he was and what the practice of movement disorders meant to him. It was so inspiring to hear about how he prioritized education, which of course resonates a lot with me. I heard stories about how he would stay for hours, just going over one detail of a presentation, and stay not only with patients but with students as well. 

It is so reassuring and very humbling to realize that the same values, the same priorities of education, of patient empowerment have been around for a long time, and, incredibly, I am just a continuation in some small way of all the work that came before me. 

Are you working on any Parkinson’s research?

I am also an American Academy of Neurology Healthcare Equity Scholar, which is a year-long program where I workshop a community health initiative similar to the one I did, but I receive feedback and develop it further. I'm building another iteration of the community health literacy outreach initiative that I ran as a pilot. This time, it'll be in association with SUNY Downstate in Brooklyn, where I work as an attending.

How do you see your work and research improving the health and lives of people with PD and their children?

What I’ve seen often is that delivery of this kind of core brain health knowledge doesn't happen until someone gets diagnosed with Parkinson’s disease. Then you're trying to deliver not only foundational brain health information, but also a diagnosis and treatment options. I think that can get overwhelming. My hope is that by delivering core knowledge much earlier, integrating it into the community through schools, students, young people, it will have some sort of foundational improvement in the types of brain health knowledge that patients come in with overall. 

Even more directly, I hope my work will highlight that brain health conditions can be approached as a family. 

When people are diagnosed with a neurodegenerative condition like PD, education and support often focus on the adults in that community, but kids are affected too. As more young people are diagnosed with Parkinson's, their children and grandchildren also need help navigating this disease. 

There aren't as many resources directed toward children. I hope that by making kids the focus for this type of outreach, we will start to see that the family support unit for patients with Parkinson's becomes stronger — on more than a direct caregiver level. It engages and empowers the family unit to come together, no matter the ages of the family members.

What gives you the greatest hope for the Parkinson’s community?

What gives me the most hope is how excited people are to engage in discussions about Parkinson’s. People are thinking creatively about how we can support people with Parkinson's beyond medication, clinical trials or clinic interventions. 

There are drawing classes, painting classes and boxing classes for people with PD. The creativity people bring to improving quality of life with this disease gives me the most hope because creativity is not something you see a whole lot of in other parts of medicine. When we think about supporting people outside the clinic, there is so much room for creativity, discussion and partnership.

It's these types of interactions and research that make me the most excited, the most hopeful, for what's to come.

Explore more topics and resources mentioned in this article:

• Join our Children of People with Parkinson’s Community Network
• Parkinson’s and Your Children/Teenagers
• Young-Onset Parkinson’s
• Frequently Asked Questions: A Guide to Parkinson’s Disease
• Find your Parkinson’s Foundation Chapter and explore PD wellness or exercise classes near you.

Find a neurologist or movement disorders specialist at Parkinson.org/Search or call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).

Precision medicine could transform how Parkinson’s disease (PD) is treated. It uses information about a person’s genetics, environment and lifestyle to guide treatment decisions. 

In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, explains how precision medicine could help researchers and health care professionals better understand why people experience Parkinson's differently and identify treatments that may work best for people with shared biological traits.

Precision medicine uses biomarkers — unique properties of the body that provide information about your health, for instance, genetic information. This information can help researchers identify traits that may predict how PD progresses or how someone may respond to treatment. While precision medicine is not yet part of routine PD care, researchers are working to identify the biomarkers and data needed to make it possible.

"Precision medicine is the ability to provide treatments that are more likely to be effective based on a person's unique genes, environment and lifestyle," said Dr. Beck

Learn more about the topics we explore in this Neuro Talk: 

• Precision Medicine
• Join A Study
• PD GENEration: Parkinson’s Foundation genetic study

After a Parkinson’s diagnosis, many people start their journey by learning about treatments to help ensure their best quality of life. But according to experts like Robert Hauser, MD, from the University of South Florida, a Parkinson’s Foundation Center of Excellence, the initial months after a diagnosis also hold a unique window of opportunity that may go unnoticed by people newly diagnosed with Parkinson’s and their care team. 

In Episode 108 of the Parkinson’s Foundation podcast Substantial Matters: Life & Science of Parkinson's, Dr. Hauser discusses the "golden year," a time prior to starting Parkinson’s medications. This window may hold a key to finding therapies that could change the course of PD. 

What is the “Golden Year”?

The "golden year" refers to the period of about 12 months after diagnosis when a person is more likely to have mild movement symptoms and may not yet need Parkinson’s medications to manage activities of daily life. 

Before starting medications to manage Parkinson’s symptoms, the brain is at its natural baseline. People who have not started medications are sometimes called treatment naïve. Being treatment naïve gives researchers a window to test disease-modifying therapies — treatments designed to slow, halt or possibly reverse Parkinson's progression. 

Timing Matters

Current Parkinson's medications manage movement symptoms such as stiffness and slowness of movement. However, they do not treat symptoms that may appear after many years, such as cognitive changes or serious balance issues. An important need in Parkinson's research is finding a way to diagnose the disease as early as possible and halt its progression before these long-term symptoms arise. 

For a clinical trial to test how a new treatment works, researchers must track changes in a person’s PD over time. Entering a trial before daily medication becomes necessary gives researchers the clearest picture of how well the new treatment works. This makes the "golden year" a unique opportunity for both researchers and people with PD.

Despite the importance of trials in the first year after a Parkinson’s diagnosis, finding eligible participants is a hurdle. It remains a challenge because of these factors: 

• Starting medication: Neurologists often start people with PD on medications right away, making treatment-free baseline observations unavailable.
• Wait times: Delays in scheduling appointments with movement disorder specialists can cause newly diagnosed people to miss early trial eligibility. 
• Awareness: Many health care professionals are unaware of clinical trials for newly diagnosed and treatment naïve people — or how important the golden year is to Parkinson’s research — and do not share trial information with people with PD.

What can we do?

To make the most of this critical time, collaboration is needed between people with Parkinson’s and their care teams:

• People with Parkinson’s and families: If you or a loved one is newly diagnosed and do not feel an immediate need for medication to manage daily activities, ask your PD doctor about clinical trial opportunities for treatment-naïve individuals.
• Healthcare providers: Doctors and care teams should discuss clinical trials with their newly diagnosed patients before prescribing PD medications. If symptoms are mild and manageable, allowing time to consider a trial can open doors to groundbreaking research. 
• Improving access: Some medical centers are working to improve systems to get newly diagnosed people into appointments quickly, so they can explore trial options before starting standard treatment. 

Explore current clinical trials

What’s Next

Every approved Parkinson’s treatment exists today because people chose to voluntarily participate in clinical research in the past. Raising awareness about research options helps to ensure newly diagnosed people know what's available and to decide if research participation is the right choice for them. 

Whether you are newly diagnosed or familiar with Parkinson’s, explore opportunities to get involved with PD research today. Explore current studies now.