Podcasts

Episode 140: What to Do When the Next Medical Appointment is Months Away

Medical problems often do not follow a schedule, and it can be frustrating to get them addressed when the next doctor appointment is weeks or months away. It’s important to have a plan about what to do for support between clinic appointments. A good first step is to discuss the issue with your health care team and to arrange to have a designated person or point of contact should such a situation arise. Heather Russell, RN, Coordinator of the Parkinson’s Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada, is that person for her clinic. In this episode, she describes how she helps her patients when they have a medical problem related to their Parkinson’s disease and their next scheduled clinic visit is some time away. 

Released: November 29, 2022

Podcasts

Episode 6: New Levodopa Delivery Methods for Parkinson’s

More than 50 years after its discovery, levodopa is still the most effective treatment for Parkinson’s, but some people experience “off” periods or dyskinesias with oral medications. Dr. Mark Guttman describes new delivery methods that promise to help with some of these problems, especially for people who have had Parkinson’s for many years. For example, levodopa infusions directly into the gut are currently available, and skin patches and special pills that stay in the stomach and release drug over a period of time are in development.

Podcasts

Episode 97: Understanding Bradykinesia and Dyskinesia

People with Parkinson’s disease (PD) may experience two seemingly contradictory movement problems. One, bradykinesia, is slowness of movement and is a cardinal symptom of the disease. For a diagnosis of PD, one must have bradykinesia plus either tremor or rigidity. Bradykinesia may appear as a reduction in automatic movements such as blinking or swinging of arms while walking, or it may manifest as trouble initiating intentional movements or just slowness of actions. The second movement problem is dyskinesia, in which people have involuntary, erratic, writhing movements. They can be slow and fluid or rapid and jerking. They are a complication of some Parkinson’s medications and not a symptom of the disease itself. Sometimes people have to decide on their medication dosage and timing whether they would rather be “on” with some dyskinesia or “off” and unable to move well.

In this podcast episode, neurologist Dr. Benjamin Walter delves into bradykinesia and dyskinesia. He is the head of the Section of Movement Disorders and medical director for deep brain stimulation at Cleveland Clinic in Ohio, a Parkinson’s Foundation Center of Excellence. He describes how bradykinesia and dyskinesia can affect people’s lives, what people can do for themselves to alleviate the discomfort, how they can work with their neurologist to minimize the disorders, and what is in development to help.

Released: January 26, 2021

Read the Transcript

Podcasts

Episode 137: CEO John Lehr Offers Broad Insight into the Parkinson's Foundation

Past podcasts have given glimpses into the broad range of programs and initiatives that the Parkinson’s Foundation has developed and supports. But to give a better understanding of the Foundation’s mission, its operation, reach, and funding, we spoke with John Lehr, its president and CEO. He discussed the reasons for the merger of the National Parkinson Foundation and the Parkinson’s Disease Foundation to form today’s Parkinson’s Foundation, what the new organization has accomplished, and its plans for the future.

Released: September 20, 2022

Podcasts

Episode 96: PD Medications and Side Effects

Adverse effects, often called side effects, are a common phenomenon that accompanies the use of many drugs, including ones used to treat the symptoms of Parkinson’s disease (PD). Any treatment is a balance between the desired effects of a drug and undesirable ones, so how to best ease symptoms while making the treatment tolerable. Specific to classes of drugs used for PD, some of the side effects may be drowsiness, insomnia, light headedness, hallucinations, cognitive impairment, swelling of the legs, dry mouth, weight gain, compulsive behavior, and others. These are just possibilities, and a good working relationship with a PD health care team can help avoid many of them. Beyond the PD team, keeping other health care providers informed is advisable since drug interactions can occur, so all practitioners (including dentists) should be aware of all medications that a person is taking, prescription, over-the-counter and even supplements.

In this podcast episode, neurologist Dr. Irene Richard of the University of Rochester Medical Center discusses several of the various drugs and drug classes used to treat the symptoms of PD in relation to the adverse effects that can accompany them. She offers insights into several ways to avoid or minimize adverse effects of drug therapy, what clinicians should tell people starting a new drug, and what people should ask as well as be aware of and report back.

Released: December 29, 2020

Podcasts

Episode 134: Meet the Researcher: Disparities in PD Care

As with many medical conditions, people with Parkinson’s disease (PD) may experience disparities in access to care, in diagnosis, treatments, and ancillary care. These disparities may be based on age, gender, race, financial situation, language barriers, and geographic location, among other factors. Dr. Lynda Nwabuobi, now a movement disorders specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute in New York City, received her specialized training at Columbia University, supported by a Parkinson’s Foundation Movement Disorders Fellowship.

During her training, she noticed that women with PD who were home bound were more likely than men to be alone and to have less access to a neurologist. She also recognized disparities in the care between the majority white population of people with PD seen at the main hospital clinic of New York University (NYU) compared to the more racially diverse, multicultural community of people seen at NYU’s public Bellevue Hospital nearby – even though they were being treated by the same doctor. In this podcast episode, she describes how she acted on her passion of “creating access to better care to marginalized communities and bring more diversity to the clinic.” Rather than waiting for the community to come to the health care setting, she reached out to them on their turf — at a farmers’ market.

Released: August 9, 2022

Videos & Webinars

Top Hospital Safety Tips

Already a delicate balance, Parkinson's disease (PD) symptom management can be even trickier in the hospital because:

  • People often do not get enough movement opportunities.

  • Parkinson’s medications may not be given following the at-home schedule.

  • Medications that worsen PD are sometimes prescribed.

  • PD medication doses are often delayed or missed. 

In this video, learn how to advocate for your best care while in the hospital. 

Download or order your free Hospital Safety Guide today. 

My PD Story

Cecilia smiling brightly next to a bouquet of flowers at what appears to be a formal event.
People with PD

Cecelia LaValle

Ceceilia LaValle’s family and friends knew her as the life of any party — an entrepreneur, a great artist, a wonderful cook, a devoted sister, wife and mother.

“She was an integral figure in our family and had so much enthusiasm for life,” said Neilia LaValle, one of Ceceilia’s younger sisters.

When Cecelia was diagnosed with Parkinson’s disease (PD) in the early 1990s after noticing rigidity in her left arm, she leaned into her passions and was determined to live life to the fullest as she bravely fought PD.

She had already been diagnosed with PD by the time she met her fourth husband, and ultimate care partner, Jimmie Amox, while they were enrolled as graduate students at Louisiana Tech University. Though she made several careers for herself, art always drew her back in.

“Her art really blossomed during her graduate studies,” said Deanna LaValle High, one of Ceceilia’s younger sisters. “I would say that Cecelia was at the peak of her artistic capability and showing every sign of continuing to grow as an artist, when she was diagnosed with Parkinson's. She continued to make art until the disease finally robbed her of that ability.”

Cecelia’s family rallied around her, researching PD and supporting her as she explored treatment options. Jimmie said she was determined to continue living her life and was invested in finding PD care that allowed her to do so. She consulted with several doctors around the world and tried many treatments to alleviate her symptoms, including the hallucinations.

“I lost my mom long before she passed away, due to the hallucinations,” said Michele Smith, Cecelia’s daughter. “It was difficult for our family to watch her deteriorate.”

Before Cecelia passed away in 2016, Neilia spoke to a friend who had recently started her own non-profit to raise money for breast cancer, which inspired Neilia to do the same and support a cause near to her heart — Parkinson’s disease.

“Seeing what my sister was going through made me want to help find a cure for Parkinson’s,” Neilia said. “I don’t want other people to go through what my family and my sister went through.”

Neilia uses her foundation to support organizations like the Parkinson’s Foundation that are working to find a cure for PD. She’s proud to honor her sister and to continue her fight for a cure.

“It seems like more and more people are directly impacted by Parkinson’s. We need to get more people actively involved in supporting organizations that are looking for a cure, like the Parkinson’s Foundation. There is hope, and that is what we need to use to keep us going.”
- Neilia LaValle

Like Neilia, other members of Cecelia’s family are inspired by the Parkinson’s Foundation and happy to see more resources for people with Parkinson’s, care partners and their families.

“Many of the current treatments and resources available now were not available when Cecelia was diagnosed,” said Jimmie. “Organizations like the Parkinson’s Foundation have changed that. If I could offer advice to those newly diagnosed with Parkinson's disease or people entering the Parkinson's care partner world, I would say that the first thing you need in your toolbox is love for each other. Grow that love every day. Get to truly know each other and constantly question reactions to new experiences with this disease.”

“If you are new to Parkinson’s, take stock of yourself and your priorities,” said Deanna. “And, if you are inclined to live life fully like Cecelia, do it, do it, do it. As best you can.”

With your support, we can invest in research that will help us find new treatments and a cure for Parkinson’s in years, not decades. To make a donation, visit Parkinson.org/Donate.

Podcasts

Episode 180: Make Every Minute Count: Optimizing Your Parkinson’s Doctor Visits

Medical appointments can feel overwhelming – there may be many questions on your mind and not enough time to address everything with your doctor. Preparing a list of questions and concerns ahead of time can help you focus on what matters most to you and ensure you’re actively advocating for your care. To support this process, the Parkinson’s Foundation created a worksheet that offers a step-by-step guide for identifying and prioritizing your top concerns.

Advocating for yourself during appointments can be challenging, and at times, uncomfortable. Speaking up is essential to make sure your top needs are heard and addressed. In this episode, we speak with Dr. Taylor Rush, a Health Psychologist and director of Behavioral Services and Interdisciplinary Programs at the Cleveland Clinic in Ohio. She shares her recommendations for how to prepare before, during, and after a visit with your Parkinson’s doctor, take a proactive role in managing your care, and access helpful resources to support you throughout your Parkinson’s journey.

Released: June 24, 2025

About Taylor Rush, PhD

Raise Awareness

Take Charge: Self-Advocacy Strategies to Make the Most of Healthcare Visits

A black man in a dark blue shirt speaks to an Asian doctor in a waiting room, who is showing him something on a clipboard.

For many people with Parkinson’s disease (PD) healthcare appointments with a specialist are often far apart, short on time and packed with information. Learning to be an active member of your care team — prioritizing your concerns, questions and needs before and during every healthcare appointment — can help you optimize the value of each visit.

The following article is based on a Parkinson’s Foundation Wellness Wednesday expert discussion Taking Charge: Strategies for Meaningful Healthcare Visits. Speakers include: Taylor Rush, PhD, health psychologist at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence; Kathleen Blake, MD, MPH, People with Parkinson's Advisory Council vice chair and retired cardiologist; and Muhammad Mahdi Nashatizadeh, MD, neurologist at the University of Kansas School of Medicine, a Parkinson’s Foundation Center of Excellence.

Your Voice Matters

Because no two people experience Parkinson’s the same way, diagnosis and treatment can be complex. Further, accessing expert Parkinson’s care can be difficult. While more than one million people in the U.S. live with PD, research shows that there are less than 700 neurologists trained in movement disorders nationwide. Most of these specialists are concentrated in urban areas, and it can take several months to get an appointment.

Parkinson’s visits can be fast-paced, heavy on information and the gap between appointments can be significant. The priorities you want to cover might be different than those your doctor plans to discuss. It can be frustrating to leave an appointment without talking through your top concerns or fully understanding your doctor’s recommendations. Taking an active approach to your healthcare can address this frustration and help you get more out of each appointment.

Parkinson’s care is a partnership. Your healthcare team brings medical expertise to the relationship while you bring your own expertise — your unique experience living with Parkinson’s and the knowledge of what is most important to your daily life and well-being. You know how Parkinson’s is getting in the way of the things you want or need to do.

“Remember, you are the one going through the process, so you're the expert on what your experience is — your healthcare team relies on you to share what your concerns may be and what the priorities will be,” said Dr. Nashatizadeh.

Active Participation is Key to Empowered Care

Self-advocacy — understanding what you need, gathering information to make good choices and speaking up for yourself — is a skill; one that gets stronger with practice. Research shows people who speak up about their needs and actively participate during their healthcare appointments experience improved outcomes, increased satisfaction and more cost-efficient healthcare.

“Self-advocacy matters because you are the only consistent member of your healthcare team. You are present throughout your journey, not just during the clinical visits but between the visits,” said Dr. Blake, who is living with Parkinson’s.

More Tips for Optimizing Your Care

If you are comfortable including someone, bringing a companion to healthcare visits can be invaluable. Discuss roles before the appointment, so your companion or care partner knows how you prefer them to participate. Participation can help your companion gain a deeper understanding of Parkinson’s. They may also be able to take notes, share unique insights or help you follow through with any recommendations.

While movement symptoms can take center-stage at a PD appointment, Parkinson’s impacts more than movement. Mention any non-movement symptom concerns to your doctor. Anxiety or depression, common in Parkinson’s, can impact your ability to follow through on treatment recommendations. Talk to your neurologist about persistent feelings of sadness or worry.

“Mood should certainly not be discounted or minimized because it's not a motor symptom,” said Dr Rush. “It affects motor symptoms, it affects quality of life, and it affects relationships and functioning.”

Finding the right provider can be a process. If you feel like your healthcare provider isn’t hearing you or addressing your needs, or you leave appointments frustrated, it’s important to take action.

Try addressing your concerns by:

  • Expressing your needs and expectations at the beginning of each appointment. Bring a written list of your top three discussion topics or ask your doctor about sending your list through the patient portal ahead of your next visit.

  • Having a friend in your corner. Consider asking a companion to support you or to help explain the details of how PD symptoms, challenges or care needs are impacting you.

  • Calling the Parkinson’s Foundation Helpline. Our Helpline team can help you prepare ahead of a visit, brainstorm solutions to challenges, or help you explore other care options.

Visit our Making the Most of Your Parkinson’s Care page to discover resources to help you prepare for your next visit.

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