029 Super Smellers

OK, I know what you are thinking. Another exercise episode, really? Yes, but this isn’t your run of the mill plead for people with Parkinson’s to exercise more. Up until now, we have been told to exercise but not given any direction on which exercises are best for us. Recently friends recommended a book that is filling this deficit. It is based on research completed over 30 years in this area. As one of my guests, Dr. Daniel Corcos, explains, “It is crystal clear, exercise slows the progression of Parkinson’s.” I found the book very useful. The author, Kristine Meldrum uses real people with Parkinson’s stories to highlight the positive effects they benefited from their personalized exercise “cocktail”.

The book is titled "Parkinson's: How to Reduce Symptoms Through Exercise". My conversation with authors was wide ranging and long. So, it became two episodes. This is Part One - the first part of our conversation.  Please look out for Part Two - the second half where we get more specific about the exercises that will help you the most in reducing symptoms.

https://www.parkinsonsbook.com/

https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=29101

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

Did you know that people with Parkinson’s disease have a higher risk of developing certain skin disorders than the rest of the population including melanomas? Have you had a skin issue pop up on you and not know what it is or how you got it? There is a good chance you were experiencing a manifestation of the Parkinson’s disease process or a side effect of the medication you are taking. Just one more thing to worry about.  Right? On the other hand, our skin might provide a non-invasive way to help with the diagnosis of Parkinson’s disease and maybe shorten the clinical trial process.

On this episode, a Movement Disorder Specialist who has researched the dermatological conditions related to Parkinson’s disease and published an important scientific article on this topic will discuss the various skin conditions that PwP are susceptible to, how to prevent and treat them.  He is going to give us the skinny on the skin! This might just answer the questions you have about that dark spot on your arm.

https://www.barrowneuro.org/person/nicki-niemann-md/

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

My guest from the last episode on Nutrition, Debbie Polisky, is back to talk about stress and stress management. Research has shown stress can reduce a person’s life expectancy. How many years are we losing is determined by other factors and lifestyle choices. However, I am pretty sure everyone experiences stress in their lives so this episode is important and relevant to all listeners.

Specific to People with Parkinson’s, we have many stressors that come with living daily with PD. And, there are other kinds of stressors in our lives – family issues, work issues, the weather, driving at night, horror movies, etc. Everyone’s reaction to stressors is different. How do People with Parkinson’s experience stress? How can we manage our stress better?

We get answers and tips from Debbie. Keep listening and find out!

https://www.wordsandhealth.com/en/home

https://nutritiontango.com/

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

It’s our first episode of 2024. How many of you have already stopped working on your New Year’s resolutions? History would suggest most people fail early. Some of you probably are striving to eat better for your Parkinson’s health and for your overall health. Therefore, it is the perfect time to discuss nutrition and diet. My guest is a dietician who helps the Parkinson’s community understand and practice good nutrition. She breaks down what is good and bad for us and why. She teaches how to shop for the ingredients that are healthy and suggests ways to throw together a meal quickly.

You can never know enought about nutrition. This episode is a great way to learn how food can be a part of your treatment and good for your overall health.

Don't skip this episode.

https://www.wordsandhealth.com/en/home

https://nutritiontango.com/

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

Well, I can’t believe we find ourselves at the end of 2023. Where did the time go?  I hope you had a good year. It was a fantastic year for Parkinson’s research and for this podcast. We witnessed a breakthrough in the study of PD with the discovery of a biomarker and how to test for it. That is a game changer. And this is my 85^th episode of the Parkinson’s Experience. I’m kind of an old pro at this (emphasis on old). Who knew?

On this episode, I follow up on this year’s first episode where I interviewed People with Parkinson’s on their New Year’s resolutions. Do you recall that episode in January? Episode 66 if you want to revisit.  Who stuck to their goals for 2023? Who fell short? Who never even started? You’ll find out because I followed up with them in December. What about yours truly? You’ll hear my confession after you hear from the others. So, keep listening…

OK, let’s get listening!

https://www.dbsandme.com/en.html 

This episode is about communication via your voice. Are you being heard? Speech issues is one of those symptoms People with Parkinson’s most likely will need to address as part of the journey with this disease. Does Siri or Alexa understand you? Is it frustrating to use these smart voice assistants? Well, my guests are working to change all of that.

This episode is about how technology may be able to help us with communicating when our speech isn’t as understandable as it once was. A very smart team at the University of Illinois Beckman Institute for Advanced Science and Technology is working to collect voice recordings that are being used to train AI technology how to recognize speech patterns from people who are having speech issues due to their disease progression including Parkinson’s, ALS, and stroke. They are partnered with all the big names in the tech world with the goal of improving the tech in order to improve our quality of life.

Let’s find out about this important effort and how all of us can get involved.

https://speechaccessibilityproject.beckman.illinois.edu/

https://www.dbsandme.com/en.html 

When you or a loved one has a chronic condition, where do you go to find support, information and your “community”? People with Parkinson’s may not all have the combination of symptoms, but we are all better off when we seek out and find others like us who will be there for you and lift you up. I am grateful to have found a couple groups that have helped me along the way. I’ve formed friendships that go beyond the confines of my disease journey. As I have heard others say, I didn’t want Parkinson’s disease, but the Parkinson’s community is very special and caring.

I happened to randomly get introduced to and invited to join a women-only group which meets on Zoom every other week. Most of these women are located on the East Coast – mostly in the tristate area of NY, NJ, Connecticut. I love this group and the women. We have honest, open and real conversations, and we laugh. We are all there to support each other, share our experiences and help in any way we can. No topic is prohibited.

I so enjoy this community, I wanted to share with you. So, I asked four members of the group if we could record what our conversations are like and release it as an example for others to recreate if they want.  What follows is this recording. I think you will really enjoy the conversation.

https://www.dbsandme.com/en.html 

This episode is a feel good, inspirational story about the decision to have Deep Brain Stimulation (DBS) surgery. Basically, it’s brain surgery and a major decision. I have the privilege of knowing my guest today and have followed her decision-making process and outcomes. As we know, every person with Parkinson’s is different. However, the decision process will mostly be similar. We focus on that as well as her circumstances and outcomes.

This episode is for everyone – people thinking about getting DBS, people who haven’t heard about it and their family and friends.

https://www.dbsandme.com/en.html 

Gene therapy has been a previous topic on this podcast. However, it was from a neurosurgeon’s perspective. I continue to be very excited about the possibility’s gene therapy might have for modifying the effects of Parkinson’s disease - stopping the progression. My guest and the company he works for are on the cutting edge of gene therapy research.

In this episode, I speak with someone in the trenches of making this possibility into a reality. So, what is gene therapy? How is it different from stem cell replacement? Where are we on knowing more about this therapy in treating Parkinson’s disease? What are the next steps in the research? How can you help make this a reality? 

Let’s find out. Listen on.

https://www.prevailtherapeutics.com/

https://www.dbsandme.com/content/DBS-Patient/us/en.html/ 

One of the most important problems to solve in the treatment of a disease is to find out how to measure its status in the person. In order to do that you need a biomarker to measure. For example, we take a blood test to measure cholesterol. If it is higher than normal, the physician can prescribe a diet and medication to treat it. Then, measure it again to see if it is working.

Well, for Parkinson’s we didn’t have a biomarker. Diagnosis and progression of PD have been mostly measured subjectively with various visual tests by a neurologist. Something objective, like a biomarker, would be huge improvement. This year all that has changed when it was announced that a biomarker was discovered, and a test developed.

Finding a biomarker for this disease is a huge scientific breakthrough. It’s one that the Parkinson’s community has been waiting for and the MJFF has been working on for over a decade and one my guest has been working on for just about 10 years. She will explain how it was discovered, what is involved in the testing process and why we all should care.

Don’t miss this episode. It’s good news.

https://www.michaeljfox.org/news/breaking-news-parkinsons-disease-biomarker-found

https://www.michaeljfox.org/ppmi

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