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
063 Brain and Body Donation
This episode is an important research topic. We interview one of the most significant and relevant brain and body donation research programs in the country. Some might find this topic tough to think about since people need to donate their bodies upon their death. However, it is one of the least selfish things to do.
Since the brain is difficult to study during the life of the person, it is crucial to research it after death. Therefore, this type of research is essential to discovering what causes Parkinson’s disease to develop therapies, hopefully, to slow the progression of the disease and to cure it. Listen in to learn about the program and what they have discovered and contributed to research thus far.
062 What Is It Like Living with Parkinson's? Six People Respond
Each person experiences the symptoms of Parkinson's and living with Parkinson's uniquely and it changes as the disease progresses. So the saying goes "if you see one person with Parkinson's, you have seen one person with Parkinson's". No one can assume they will live the same as others with the disease.
However, what does it feel like to live with this neurodegenerative disease? Can it be described? Is it any different on a daily basis then how others feel?
We asked six people living with Parkinson's from different parts of the country, different ages and both genders one question - what is it like to live with Parkinson's? Their answers are insightful, emotional and honest.
We hope you listen to all six.
061 6 Marathons in 6 Weeks
The headline read “Six marathons in six weeks.” That hooked me in. Then I read a person with Parkinson’s disease was the runner. Wow. I had to learn more.
Everyone reacts differently to the PD diagnosis. Some don’t know what to do or where to start. Some are in denial for as long as they can stay that way. Others tackle it with all they have and find they can take more control over their symptoms and life and accomplish more than they ever imagined with or without the diagnosis. This is the inspirational story about one of those guys - Joe Drake.
It starts with goal setting. Along the way, he determined Parkinson's "is all part of the adventure." Stay tuned.
060 To Drive or Not To Drive
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 about when, why, how of driving while diagnosed with Parkinson’s. OT's are the professionals who see patients about activities of daily living and are trained to test people on their driving skills. We discuss the testing process and the legal implications. Listen in. Some helpful links are below.
059 Home Sweet Home (Safety)
The topic of this episode is home safety and how we might think about what we can modify in our homes to be safer in them as we age or as our Parkinson’s progresses. I don’t think of myself as an anxious person or someone who worries excessively. However, I do like to have information stored away for when I need it. After speaking to our expert on this topic, I feel like I have a resource for when I need it.
The trick is to have someone help you figure out what modification you should consider making before you have a real need for them. For example, avoiding trip hazards if you are experiencing falls or are starting to have dizzy spells, adding grab bars in the correct areas if you need help standing, and carpet versus tile floors. I think you will find this episode very informative and, frankly, upbeat. With a few changes, your home sweet home.
058 The Eyes Have it - PD and Vision Changes
I often get questions from people in the Parkinson’s community about various symptoms they are experiencing. Is it the Parkinson’s or something else they ask. I usually refer them to their neurologist. Recently, I had a few people ask about changes in their vision which led to challenges in their daily living. I had never thought about vision changes being a thing. So, I sought an expert to explain what vision changes may occur with a Parkinson’s diagnosis, why they may occur and what can be done about it. Whether you are currently having issues or not, I think you will benefit from the information shared in this episode.
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!