107 Is Your Hearing Loss Related to Parkinson's?
The Parkinson's Experience podcast
I had a random request from a listener a few months ago. She was struggling with her hearing and wondered if it could be another symptom of Parkinson’s. My first thought was no, I hadn’t heard of that before. But, I told her I would look into it. To my surprise, hearing loss and Auditory Processing Disorder (APD) is another gift PD can give. So, let’s explore the what, how, and why People with Parkinson’s may experience hearing loss or APD. First we will learn about the differences between hearing loss and APD which is important to understand. I spoke with an expert on this topic who...
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106 Care Partner Stories
The Parkinson's Experience podcast
As we wind down the year with a final couple of episodes, this may be the most important topic. November is caregivers’ awareness month. The Caregiver Action Network (CAN) mission is to promote resourcefulness and respect for tens of millions of family caregivers across the country. This not-for-profit organization is responsible for caregivers’ awareness month. It is vital that we recognize this important person in our lives. They are the unsung heroes in our journey with Parkinson’s or any other chronic disease. They are often overworked, overlooked, and overwhelmed....
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105 Hacks - Strategies for Life's Challenges
The Parkinson's Experience podcast
This episode is one of the reasons I started this podcast called the Parkinson’s Experience. We have four people with Parkinson’s including myself sharing their lived experiences with all of you. The subject is the hacks we use to compensate for challenges we face while living our best life with Parkinson’s. So, what is the definition of “hacks’? If you Google it, you will first see links to the HBO show of the same name. Not helpful for this purpose. Basically, most definitions I found were of negative connotations like hacking a computer or IT system. The word “hacks” in...
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104 Brain on Art
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...
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103 Art Therapy Part 4 The Joy and Benefits of Music
The Parkinson's Experience podcast
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...
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102 Art Therapy Part 3 Writing Keeps Your Brain Active and Learning
The Parkinson's Experience podcast
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...
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101 Art Therapy Part 2 - Dancing the Symptoms Away
The Parkinson's Experience podcast
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...
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100 Reverse Mic in Recognition of 100 Episodes
The Parkinson's Experience podcast
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...
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099 Art Therapy Part 1 - Photography
The Parkinson's Experience podcast
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,...
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098 Parkinson's Together Student Power
The Parkinson's Experience podcast
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...
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