The Parkinson's Experience podcast

I've been eager to share with all of you in podcast land some important information and history about what I believe is one of the key drivers in helping fulfill the Michael J. Fox Foundation's mission to cure Parkinson's disease. The Parkinson's Progression Markers Initiative (PPMI), launched in 2010, is a groundbreaking study involving people both with and without Parkinson's. It gathers data over time to help researchers better understand how Parkinson's starts, how it progresses, and — most importantly — how to stop it.

Sound important? It absolutely is. And it's still going strong, continually recruiting new participants to join its large and growing community of volunteers. The more data we collect through PPMI, the faster we can accelerate the path to a cure.

Maggie Kuhl and Alyssa O'Grady are at the heart of this effort — overseeing the data, bringing in new participants, and tracking the initiative's progress every step of the way.

Listen to what the experts say about how you can contribute to the solution to the Parkinson's puzzle.

Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

https://www.michaeljfox.org/ppmi

https://www.ppmi-info.org/

Listening to personal Parkinson's stories offers valuable insights for everyone. In this episode, we interview Greg Ritscher, who responded to his diagnosis with determination shaped by his business and personal experiences. Greg also shares a notable DBS story. His journey highlights motivation, positivity, community support, and advocacy. Enjoy our inspiring conversation with Greg.

https://gregritscher.com/

https://www.dbsandme.com/17branches

Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

The range of symptoms and affected body systems in Parkinson's disease is extensive. One area that is less frequently discussed is the vestibular system—the inner ear structure directly connected to the brain, responsible for balance and spatial orientation. When this system malfunctions, individuals may experience dizziness, balance problems and an increased risk of falls, highlighting its importance in your overall health.

With aging, the inner ear naturally becomes less robust. Although current research has not yet identified a definitive cause for the higher incidence of vestibular dysfunction in people with Parkinson's disease, effective interventions are available. In this episode, Christopher Taylor, Occupational Therapist at Mayo Clinic, will provide insights into the diagnosis and treatment options—namely vestibular therapy—that can assist with symptoms such as dizziness, gait disturbances, freezing, and postural instability.

This discussion aims to enhance our understanding of the crucial role played by the inner ear and its connections.

Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

https://vestibular.org/

One of the possibilities along the Parkinson's journey is losing the ability to drive safely. This possibility is a scary one. For many, driving equals independence. So, it means more than just the hassle of getting around. It means losing your independence. It can lead to depression and anxiety. However, it is important to be safe on the road while driving a multi-ton vehicle. We must protect ourselves, our family, and others on the road.

So, we are talking today with an Occupational Therapist who is so passionate about this topic that she started a business focused on helping people keep their independence if possible. She will take us through the when, why, how of driving while diagnosed with Parkinson's. OTs are the professionals trained to assess patients on activities of daily living which includes testing people on their driving skills. We discuss the testing process and the legal implications. There are many options for people once it is determined there is a driving defiicit. So, don't give up. Ask an Occupational Therapist for suggestions.

Listen in to learn everything about driving with PD.

https://drivingtoindependence.com/

https://www.aded.net/?

https://www.dbsandme.com/17branches

Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

Where do you exercise? Is there a place you can take classes specific for people with Parkinson's? Is it convenient? I know of only a handful of cities where there is a one stop fits all approach to PD wellness. Most are created and managed by someone stepping up and doing the work to make it happen for their community and beyond.

I am excited to highlight some of these magical places where people with Parkinson's take classes designed for their needs, provide social support, and community. I am thrilled to bring. you this first magical place. It is in the greater the Austin, TX area and on their YouTube chamnnel. Power For Parkinson's was founded by two women, Dr. Nina Mosier and Susan Stahl. They both had fathers with Parkinson's and saw a need, so they found a way to provide research-based exercises while offering them for FREE. With nine locations, the classes are very accessible. Add in the YouTube channell with available streaming and on demand videos all for free, well that is magical.

After listening to my guest today, you are going to want to have a similar opportunity in your area as well. Listen on.

https://www.powerforparkinsons.org/

https://www.powerforparkinsons.org/youtubeq

https://www.dbsandme.com/17branches

Thank you to our sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about the latest treatment options for Parkinson's disease at https://DBSandMe.com/17branches

Do you have trouble falling asleep, staying asleep, getting enough sleep? Well, you are not alone. It seems lack of sleep is an epidemic in the US. In particular, getting a restful night's sleep is very difficult for the majority of people with Parkinson's. Why? What is going on and how can we improve our the quantity and quality of our sleep?

This is a meaty topic to tackle. It is very important to understand it and make changes to improve your situation. Luckly, we were able to get a highly qualified expert on sleep disorders with experience helping people with Parkinson's. Dr. Joyce Lee-Ianotti is fantastic and speaks in layman terms so we can understand the information.

If you have sleep problems or if you know someone who does whether you are a person with Parkinson's or not, this is the episode for you.

https://dbsandme.com/17branches

https://aasm.org/ for more information and to find a sleep specialist close to you.

https://www.thensf.org/. Another resource

https://www.barrowneuro.org/person/joyce-k-lee-iannotti-md-faan-faasm/. Our guest expert

Did you know there is a connection between loss of smell and Parkinson's disease? In fact, it may turn out to be a predictor of the disease up to 10 years before a clinic diagnosis of PD. Here are some interesting stats:

1. · 100% of major brain disorders are associated with smell loss
2. · 96% of newly diagnosed people with Parkinson's have lost some ability to smell
3. · 70% of people living with smell loss don't know it until they are tested
4. · 50% of people over the age of 60 may be living with smell loss

I am fortunate to have spoken to a leader in the research of smell loss, Dr. Richard Doty. We had a fascinating discussion on smell loss and what it can mean for those suffering including a loss of taste which may lead to weight loss. Additionally, we chatted about the work the MJFF is doing with its landmark smell loss study through the PPMI program. Using Dr. Doty's scratch-and-sniff test, PPMI hopes to help scientists learn more about this risk factor for PD. I've taken it twice. I don't think I passed it.

https://www.michaeljfox.org/smell-loss-brain-health-request-your-smell-test

https://mysmelltest.org/mjffbsd

https://sensonics.com/product/smell-identification-test/

https://www.dbsandme.com/en.html

This is a very important topic and one in which you can make a difference. Our environment is sickening the population. Parkinson's disease is one example of a condition that likely was caused by pesticides and other toxic chemicals in our water, food, air and soil. All of us can contribute to preventing future generations from getting Parkinson's and other diseases. Those already diagnosed may benefit as well. If we avoid these chemicals now, we may slow the progression of the disease just as exercise has been proven to do so. Bottom line: we need to work together to get these destructive chemicals banned forever.

I spoke with Dr. Ray Dorsey on this topic. He and his colleagues have been sounding the alarm on all the ways certain chemicals are causing the increase in PD cases all over the world. Their first book, "Ending Parkinson's", started the conversation on preventing and treating the disease. In their new book, "The Parkinson's Plan", there is specific plan for each person or community to follow in order to live a healthier life and advocate for change to help prevent future generations from suffering due to exposure to these toxic substances.

Listen on to hear Dr. Dorsey's passion and efforts to ban harmful chemicals still being used in our communities. Let's make our voices heard and advocate to ban pesticides and harmful chemicals.

https://pdplan.org/

https://www.michaeljfox.org/news/national-plan-end-parkinsons-act-makes-progress-congress

https://www.atria.org/

[email protected] (Dr. Dorsey's email address)

https://www.congress.gov/members/find-your-member

https://www.dbsandme.com/en.html

$41M, 41 days, 2800 miles. Those are the stats for Team Human Potential who competed in the World's Toughest Row. The boat race happens annually and showcases teams of four, rowing across the Pacific Ocean from California to Hawaii. Patrick Morrisey with Team Human Potential became the first person with Parkinson's to finish the race. They raised over $41M for the Michael J Fox Foundation for Parkinson's research. Amazing.

We spoke with Patrick and his skipper, Brendan Cusick about their experiences, challenges, commitment, and learnings on the trip. What did it reveal about working together and becoming close brothers in the end? How did Patrick manage his symptoms while rowing and living on a small boat for 41 days? What did they learn about their mental and physicial limitations? What's next?

Listen on to enjoy some time with this engaging, generous and courageous team.

https://humanpoweredpotential.org/

https://www.dbsandme.com/en.html

It is difficult to believe that in the over 100 episodes of the Parkinson's Experience, we have not talked extensively about gait and balance. Gait and balance is something a lot of us Parkies face at some point in our journey. This symptom can be very scary and life limiting and, therefore, important. Why does this happen and what can we do? I spoke with a researcher in this space, Dr. Dan Peterson, who has a lab and studies people with movement disorders and making some progress on finding some help. The discussion is next. Stay tuned. 

Resources:

FOG tricks & hacks paper :

https://www.neurology.org/doi/10.1212/WNL.0000000000201159

Mancini article about gait:

https://www.nature.com/articles/s41531-025-00897-1

Nice presentation by Bas Bloem (leading expert in PD, on the benefits of exercise generally for PD):

https://www.youtube.com/watch?v=Q6d0J81VomY

https://gaitandbalancelab.asu.edu/

https://www.dbsandme.com/en.html