The Parkinson's Experience podcast
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. 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...
info_outlineThe Parkinson's Experience podcast
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...
info_outlineThe Parkinson's Experience podcast
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...
info_outlineThe Parkinson's Experience podcast
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...
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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....
info_outlineThe Parkinson's Experience podcast
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: · 100% of major brain disorders are associated with smell loss · 96% of newly diagnosed people with Parkinson’s have lost some ability to smell · 70% of people living with smell loss don’t know it until they are tested · 50%...
info_outlineThe Parkinson's Experience podcast
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...
info_outlineThe Parkinson's Experience podcast
$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...
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Some of my favorite episodes are when we hear personal stories from people on the same journey as us. Every story is different but all of them can help us find our way, learn from each other and get motivated to live your best life. On today’s episode, I have a conversation with Lisa Volenec. She was diagnosed as young onset PD which is defined as diagnosed at age of less than 50. It is estimated that only about 10% of the PD population is diagnosed with young onset. However, we know this is growing due to many factors including pesticides and our diets. This is a growing concern for health...
info_outlineThe Parkinson's Experience podcast
Have you heard about the new medication delivery systems or pumps recently approved by the FDA? It has generated a lot of buzz at support groups, clinics and social media. What do these pumps do that makes them different and a new tool for our Movement Disorder Specialist to use to help People with Parkinson's live well with Parkinson’s? What can you expect? When should I ask my doctor about if its right for me? I asked Dr. Ospina these questions and more, including the new long-acting oral levodopa called Crexont. She has answered other important questions in the past and has a great...
info_outlineIn April 2010, Allison (Allie) Toepperwein experienced a tremor in her left hand while living in Austin, Texas after giving birth to her daughter. Around eight months later, in December 2010, Steven Eury noticed a tremor in his right hand while filming the birth of his son 1100 miles away in North Carolina. The following year, Steven received a diagnosis of Young Onset Parkinson's Disease (YOPD). It took another 4 1/2 years, and 2 1/2 months after Allison's divorce before she, too, was diagnosed with YOPD New Year's Eve of 2014.
Allison went on to make history by becoming the first person with Parkinson's to compete on the popular TV show American Ninja Warrior. She began blogging, delivering motivational speeches, and advocating for single moms, women, and young adults with diseases.
In May 2020, Steven, who had recently gone through a divorce, purchased property on a street named Allison. He intended to build a new home and embark on a fresh chapter of life with his children and his dog named Allie.
In August 2020, one of Steven's friends sent him a blog post written by a stranger named Allison, sharing her experiences of "Dating With Parkinson's." Steven felt an inexplicable connection and decided to reach out to her. Two months later, in October 2020, the two finally met. Two years later the couple were married. They now reside on the very street named Allison, alongside Steven's dog Allie, their three children, a cat, a bunny, and a new puppy.
In September 2022, the pair joined 10 other people with Parkinson's to run the Blue Ridge Relay, which is an arduous 208 mile relay through the Blue Ridge mountains, two states and more than 16,000 Feet of ascent.
Then, in December 2023, one week before Christmas, the couple created a new spark between them, by both undergoing deep brain stimulation (DBS) surgery. The couple had brain surgery on the same day, by Baylor's Dr. Sameer Sheth and team, in the same operating room, in the same hospital, Baylor St. Luke's Medical Center back to back. It is now considered standard of care for people with PD that qualify to have DBS.
Let’s check in with them and learn what it is like for the two PwP to live together and have surgery/recovery together.
https://www.youtube.com/watch?v=Xz0hlJ6mzD4
https://www.dbsandme.com/en.html