The Parkinson's Experience podcast

After the series on Art Therapy, I was reflecting on all the great stories of how each guest truly benefited from their experiences with their mode of creative expression. It isn’t just people with Parkinson’s benefiting. Everyone can benefit from attempting a new art activity or going back to what you used to enjoy.

Then I started thinking what happens in our brains and body? How do these activities provide such joy and symptom relief? I spoke with the Chair of the Department of Neurosurgery at University of Arizona about the effects of the arts on the brain. Listen on to listen to our discussion.

https://neurosurgery.arizona.edu/profile/julie-g-pilitsis-md-phd-mba

https://www.dbsandme.com/en.html 

I’ve had a wonderful time this summer speaking with people with Parkinson’s who have found joy, meaning and symptom relief using one or more forms of artistic expression - let’s call it art therapy.   If you haven’t listened to the first three, please do. I found inspiration and information in each one. I hope you will as well.

This is the fourth episode in our art series and the topic is music. Just like the others we have discussed; music therapy involves no pills and side effects. There are ongoing research on music’s effect on the brain. We will have to stay up on the findings over time. For this episode, I interviewed  a university dean with young onset PD who discovered the joy in making music. He learned how to play the guitar along with his daughter and good enough to perform with her on stage. Dean Cole is a force to be reckoned with and an established Parkinson’s advocate. Listen on to hear about his experience finding joy in making music.

https://www.schoolofrock.com/

https://pdwise.com/

https://video.austinpbs.org/video/the-only-day-we-have-qtwu1l/  ("The Only Day We Have" from PBS Austin

https://socialwork.utexas.edu/directory/allan-hugh-cole-jr/

https://www.dbsandme.com/en.html 

Welcome to Part 3 of our series on the influence the Arts have on people with Parkinson’s and frankly most other conditions. It’s amazing what scientists are discovering about how much music, dance, painting, etc can be beneficial for brain health.

I’ve been humbled by our guests. The more I listen to these amazing, brave people, the more I’m impressed by their skills, reliance and courage. It takes guts and dedication to start something new or continue to hone your craft while managing a progressive neurodegenerative disease.

In this episode, we are really lucky to speak with a NY Times best selling author with a large fan base, Fiona Davis. She describes what it is like to write a novel and how it has helped her to manage her PD symptoms.  I think you will be impressed. Listen on.

https://www.fionadavisbooks.com/

https://www.fionadavisbooks.com/newsletter

https://www.writingclasses.com/

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

Welcome to part two of our four-part series on the arts and Parkinson’s disease. If you haven’t listened to part one, you can definitely listen to this one but I encourage you to listen to part 1 on photography and hearing from our guest, Torrance York, who spoke passionately about photography and how it helps her gain perspective on her journey with Parkinson’s.

In this episode, I am thrilled to have Pat Beilman as my guest to discuss dancing and it’s benefits for PwP and others. Dancing can help with your coordination, balance, core strength and posture. It also provides a way to interact with others avoiding isolation. It can help build your confidence in walking. And, it can bring some joy into your life. There is an actual dance program just for people with Parkinson's disease called Dance for PD.  If any of this resonates with you, keep listening.

https://danceforparkinsons.org/

[email protected]

https://www.dbsandme.com/en.html 

So, I hope you enjoyed the first episode in our four-part series on the Arts and their potential for a better quality of life for people with Parkinson’s. We are going to take a quick brake in the series since this is the 100th episode of the Parkinson’s Experience.

To celebrate and acknowledge he 100th episode, the interviewer became the interviewee. One of my fellow support group attendees and an upcoming guest on the podcast , asks if she could interview me for the 100th episode. So, we are reversing the mic. Let's learn more about the podcast and host, me, Sheryl Lowenhar.

But, before I share the interview, I often get asked what the most listened to episodes are. Great question so I looked it up. The Top 5 episodes of all time are: #76 PD  Tech Remote patient monitoring, #62 What is it like living with PD, #64 What should I eat, #70 Parkinsonisms Explained, #67 PD Medication Review; the art and the science.

https://17branches.org

https://www.dbsandme.com/en.html 

This episode kicks off our 4-part series featuring people with Parkinson’s who found one form of the arts to be helpful with managing symptoms and gaining perspective. We will explore four different art disciplines – photography, dance, writing and music. We wanted to hear directly from the person with Parkinson’s rather than an expert on the research on why the arts can be an important part of your Parkinson’s therapy. So, each episode will be a personal story about that person’s challenges and struggles with their PD journey and how each used a different art to find understanding, insights and joy.

Up first is an accomplished photographer whose work is in galleries and books. She will tell us how her perspective of herself changes after being diagnosed with Parkinson’s. This lead her to publish a book with photos which draw connections to her experience with PD.

This is a fascinating and interesting conversation about how you can use art to help in so many ways. For example, the art of photography in this case being used to visually confront the disease and learn to find calm and joy in the final product and the work to get there.

We hope you consider picking up a forgotten art interest or learn something new. It could bring you joy and help with your symptoms.

For information on the book, Semaphore, click here.

For more information on Torrance York Photography, click here.

To purchase Semaphore, click here to purchase from Amazon

For more information about Deep Brain Stimulation (DBS), click here.

Last episode we spoke with a MDS and Assistant Professor at Vanderbilt University about integrative medicine. This episode is a great follow up to the previous one.  This time it is student at the University of Cincinnati leading the charge to bring an integrated approach to Parkinson’s care. She formed a not-for profit organization called Parkinson’s Together. It brings students from multiple disciplines to help with patient care.  That may include law students, engineers, finance but mainly students interested in the medical field and with interest in helping others.

I had a delightful conversation with Mallika Desai about her efforts. She is a very dedicated, inspiring, smart young woman determined to make a difference in the quality of life for people with Parkinson's disease. We need more like her and her colleagues in our world. Enjpy the discussion.

https://parkinsonstogether.us/

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

What is integrative medicine and how is it different than what we are used to which is mostly silos of care and mostly Western medicine? My guest today will offer an alternative to this, a better way to treat a patient with a condition or disease.

Dr. Britt Stone, an Assistant Clinical Professor at Vanderbilt Medical Center, spent her pandemic time pursuing a fellowship in Integrative Medicine at University of Arizona. She will describe how clinicians can work together with the families of people with Parkinson’s to make for a better experience and a healthier outcome. She believes treatment should include prescribed exercise, a healthy diet and, possibly complimentary medicines.

We had a great discussion. She opened my eyes to possibilities and the team approach to a better quality of life. If you like what you hear, let’s see if we can change the healthcare system together.

https://www.vumc.org/neurology/person/britt-stone-md

https://www.herbsociety.org/

https://integrativemedicine.arizona.edu/health_hub/awcimagazine/what_is_integrative_medicine.html

https://www.dbsandme.com/en.html 

In 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://litwithin.com/

https://www.youtube.com/watch?v=Xz0hlJ6mzD4

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

What stage are you in? Do people ask you that question? If so, do you tell them? Do you even know? What are the stages and what do they mean? Frankly, I have never asked my movement disorder specialist neurologist what stage I am in. I don’t know why. We have never discussed it. However, learning and knowing more about how your doctor is tracking the progression of the disease is, I think, important.

So, today we are going to speak with a movement disorder specialist. He will explain the stages of Parkinson’s disease.  What they are and what that means to individuals and their families. I think you will find this episode interesting and helpful.

https://www.honorhealth.com/physicians/daniel-savitt

https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/stages 

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