The Parkinson’s Experience is a podcast hosted by a Person with Parkinson’s (PWP) and based on her daily experiences. Listen in on her journey living with the disease and how she lives her best life with humor, generosity, empathy and knowledge. Her conversations with experts and patients like you are fascinating and authentic. They cover relevant topics from DBS (Deep Brain Stimulation) to exercise to diet to medications to much more difficult subjects like personal relationships. Of the few podcasts available on this topic, don’t skip this one from the viewpoint of a patient.
Thank you to my sponsor – Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about Parkinson's treatment options, please visit DBSandMe.com
Off Medication Update
It’s been over a year since we have had an episode of the Parkinson’s Experience on medication. So, we are focusing this episode on motor symptoms medication and, specifically, medication to help during the "off times".
We begin the episode by having our Movement Disorder Specialist neurologist define off times and dyskinesias. Then, we break down the medications used during off times and for dyskinesias by category or mechanism of action.
This is a great reference and important information for all People with Parkinson's. Please share with your friends who have questions.
041 Improve Your Golf Swing Improve Your Life
We often talk about exercise and activities as a great way to slow the progress of Parkinson's symptoms. Golf may not be one that comes to mind. Until now.
In this episode I speak with a golf instructor who specializes in the biomechanics of the golf swing. His father had Parkinson’s disease. This led him to a passion for helping PWP. It just so happens the correct way to stand and swing a club and even the best way to putt aligns with the best posture for PwP to help with balance, core, and flexibility. I’m a golfer but really didn’t think about it in terms of my Parkinson’s. It is good to know with a few changes, I could knock strokes off my handicap and continue to play longer. If you play golf, you are really going to learn something. If you don’t play, you will still learn a lot about your body, posture, balance, and gait. You may decide to pick up the game. It’s never too late.
040 The Many Benefits of Indoor Cycling (No Head Wind)
I was introduced to my guest today by a past guest who takes her forced exercise cycling online classes for People with Parkinson's (PwP). Forced exercise isn’t exercise at gun point which is kinda what it sounds like. It is exercise with goals of hitting certain higher watts or rpms (revolutions per minute) so you maximize your heart rate. In other words, it isn’t sitting on a bike and reading a book.
You may have heard of the now famous tandem bike ride that changed the way some think about exercise as a benefit to PwP. Dr. Alberts at the Cleveland Clinic was cycling on a tandem bike with a PwP. He noticed improvements in her symptoms after the ride in which she was forced to cycle the speed he was setting. After studying the effects of forced exercise, it was determined that this type of exercise may help improve motor symptoms and cognition. Of course, it helps with your cardiac health as well.
Kathy Helmuth with Parkinson’s Cycling Coach explains it all - as well as the fun and social aspect of an indoor stationary cycling program. If cycling isn’t your thing, you will still learn a lot from Kathy. Or, you may end up online looking for a bike afterwards!
Kathy can be reached at firstname.lastname@example.org or https://www.parkinsonscyclingcoach.com/
039 Parkinson's, Paint and DBS
Welcome to the 3rd episode in our 3-part series on inspirational people living their best lives with Parkinson’s. We’ve highlighted a woman who climbed Mt Kilimanjaro and biked across Iowa 6 times and a woman who took up Ping Pong and won gold. She will be defending her title next month in Berlin. Good luck Margie Alley!
On this episode, we speak to an inspirational woman who took up painting after her tremor disappeared with DBS. She finds that painting is calming and helps with other symptoms. And, she has become a real student of her new craft – improving, exploring and being bold with her creativity.
The image for this podcast is one of her paintings. It depicts the mechanical hardware used during her DBS surgery.
Listen on. I hope this episode, as well as the others, inspires you to do something you haven’t done before.
038 Gotta Keep Moving
The working title of this episode was "Ping Pong Phun". Instead we named it the same title as the guest's documentary which is a much better title and reflects our guest, Margie Alley's, motto.
This episode is second in our summer of inspiration series. We hope you listened to the last episode featuring an inspirational woman who climbed Mt Kilimanjaro after her diagnosis and has a great way of looking at life. On this episode, we speak with a woman on the opposite coast of the U.S. and took on the challenge of learning Ping Pong which led to a gold medal in an international tournament. She will be defending her title in Berlin this year. Talk about a challenge and an anxious provoking experience. Wow. Plus, there is a chance encounter and meaningful conversation with Michael J Fox which will turn out to be beneficial at a later date. Again, listen on and prepared to be inspired as our guest opens up about her life, what challenges she faces and how she found and uses Ping Pong to help.
037 How Are You Going to Live?
We are in the middle of summer and a great time to listen to podcasts on those road trips, beach vacations and long walks. So, the Parkinson’s Experience has lined up an exciting three-part series featuring inspiring people living their lives with Parkinson’s disease.
Nan Little is my first inspirational guest. She asked a great question at the end of the episode - how are you going to live?
Everyone faces challenges in their life. Some face multiple challenges at once or over time. It’s what we do, how we react to these life challenges that matter. Nan Little is a woman who got busy after her Parkinson’s diagnosis and is a true inspiration. A self-described non-athlete, she has biked across Iowa six times and climbed Mt Kilimanjaro among other ambitious activities. She took what life gave her and decided to take control of her disease and work to help others do the same. I had been looking forward to speaking with her and she exceeded my expectations. Listen on and be prepared to be inspired.
Educational and inspiring
This podcast highlights topics that are often “out of the box”, not the typical Parkinson's information. You will be glad you listened.
Podcast blends insights of people with PD with information from medical experts to educate and inspire others to stay positive, self-advocate, and live their best life. Highly recommend - uplifting!
I have heard a lot of talks on PD medication but this really broke it down into simple terms!