The Parkinson's Experience podcast

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 policy and community support organizations.

Lisa represents this demographic. Still working at a TV station and under a lot of stress, you'll hear how she navigated her disease and employment over the years. How she came to a place where she decided to "own her truth." She will also open up about the decision to have DBS surgery and the outcomes from that.

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

https://www.michaeljfox.org/news/early-onset-parkinsons-disease

https://www.3newsnow.com/rebound/positively-the-heartland/stunned-by-an-early-onset-parkinsons-diagnosis-omaha-woman-now-finds-purpose

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 way of explaining things so regular people can understand.

If you want to learn more about the pumps or even a recommendation of when to go from oral to pump to DBS, this is your episode.

https://www.vyalevhcp.com/

https://www.onapgo.com/

https://crexont.com/.

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

As the earth continues to get warmer and we see record high temperatures across the globe, scientists tell us that this pattern is going to continue and be more common. Higher temperatures, more frequently has led to more heat strokes and other conditions when people aren't prepared for this situation. Additionally, people with neurodegenerative diseases like Parkinson's are at greater risk for heat related complications,

A recent article published in JAMA Neurology, describes the issue, what to look for, and how we, as individuals and community, can help to prevent people from heat related complications. It was co-written by my guest today, Indu Subramanian, MD, a neurologist and movement disorders researcher at the University of California, Los Angeles (UCLA), and Al Saad, MD, a neurologist with expertise in climate change at the University of Colorado.

With summer around the corner, this is a great time to prepare for the heat and work with your healthcare team on a plan to prevent any heat related issues. We as a community need to look out for our neighbors, friends and family. Our neighbors may be isolated or scared if they have Parkinson's diseasae or are older. As a community, we should come together to identify people who may need our help during a difficult situation such as heatwaves and higher temperatures, especially in areas in the world where they are not prepared to assist. We should keep in touch, check in, offer some water.

Learn all about how to prepare, provent, find help as well as recognizing the symptoms of heatstroke on this episode of the Parkinson's Experience.

https://www.parkinsonsecrets.com/

https://parkinsonsnewstoday.com/news/heat-intolerance-rising-parkinsons-risk-climbing-temperatures/

https://www.uclahealth.org/providers/indu-subramanian

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

We are well into 2025 so saying Happy New Year is not appropriate anymore. I think now people are asking others how they are doing with their resolutions. I have just one goal this year and that is to learn something new. I'll let you know how I do. Send me your resolutions in the comment section.

I am excited for you to listen to my conversation with Dr. Brian Fiske, Chief Scientist for the MJFF. I like to kick off the new year/new season with a medication update. This year we are going to get an update on the research landscape and what it means compared to previous years. There are therapies in various stages of clinical testing using several different therapeutic approaches. It is exciting to learn about what to expect in the future and how we all can contribute to move things forward faster.

Let's learn from Dr. Fiske what we now know about the biology of Parkinson's, genetics and the environment's contribution, the advances in testing for a Parkinson's diagnosis, and where we stand in slowing the progression of the disease.

This podcast is sponsored by CND Life Sciences, home of the Syn-One Test ® - the first commercially available skin-based test to help clinicians diagnose Parkinson's and related disorders. CND Life Sciences supports the care of patients facing the potential diagnosis of a neurodegenerative disease. CND's Syn-One Test® helps clinicians to diagnose suspected synucleinopathies using skin biopsies to detect, visualize, and quantify phosphorylated alpha-synuclein located in nerves in the skin. The Syn-One Test is performed in CND's CLIA-certified and CAP-accredited laboratory located in Scottsdale, AZ.

https://www.michaeljfox.org/state-field

https://www.michaeljfox.org/ppmi

https://www.michaeljfox.org/trial-finder

https://cndlifesciences.com/

https://cndlifesciences.com/syn-one-test/

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 has a professional and personal connection.

Let's listen to the discussion.

https://search.asu.edu/profile/192444

https://www.asha.org/

https://www.hearingloss.org/

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

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. These important people are part of the care team and should have access to the resources and assistance they deserve.

So, let's get some insight into the care giving from a couple of real-life caregivers who care for their partners with Parkinson's. Each has a different situation determined by the progression of the disease, current working status as well as other factors.

This episode is for everyone. You never know when you might become a caregiver for a loved one. 17 Branches and the Parkinson's Experience recognizes and appreciates all of you who care for your partners and your family.

Happy Thanksgiving. I am grateful for all the people who listen to the Parkinson's Experience podcast.

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

https://www.caregiveraction.org/

https://www.parkinson.org/library/fact-sheets/coping-care-partners

https://www.pingpongparkinson.org/

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 this context means shortcuts or tips. In other words, this episode is about the various strategies or compensations or adaptations people use to complete a task when their PD symptoms prevent them from accomplishing them they way they used to. For example, if you have trouble buttoning your shirts, what would be a hack you could use? Only wear shirts with no buttons? Do some hand exercises before buttoning? Allow more time to get dressed? Purchase a tool that helps you button our shirts?

What hacks do you use to get by? We all have them. I think you will enjoy listening in on the conversation the four of us had on this topic. I learned some new tips and insights. Frankly, it is very affirming to learn you are not alone and share the same struggles and same hacks with other people with Parkinson's. As you listen, if we didn't mention a hack you found helpful, please share in the comment section or on our Instagram or Facebook page. You can help out people in our community.

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

https://parkinsonsbuddynetwork.michaeljfox.org/v2/

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