The Parkinson's Experience podcast

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

Have you ever felt completely exhausted or fatigued during the day? Does this happen frequently? Not sleepy but totally fatigued or tired. Well, this could be one of those non-motor symptoms of Parkinson's disease or a medication side effect or something else. Either way, it is really annoying and can affect our quality of life.

We discuss fatigue with an expert on the topic during this episode. He tells us what science has discovered about the causes of fatigue and what has yet to be learned. Listen to find out the difference between fatigue and sleepiness as well as possible treatments and lifestyle changes that may help. We tried to keep the conversation lively, so no one gets bored and nods off during this episode.

https://vivo.brown.edu/display/johfried

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

This is the fourth and final episode in our tech series. We could probably highlight many more innovative ideas and companies. It is a very exciting time for the use of technology in the treatment of Parkinson's disease.

In this episode, we talk with a company whose product, StrivePD, is really cool and very useful. It is an app which communicates with the Apple Watch to monitor your motor symptoms throughout the day. You can monitor your symptoms, set medication reminders, and even share your progress with your care team using the app. Providing your neurologist with direct access to daily logs of your symptoms and medication adherence allows them to make appropriate adjustments to your care, and help you improve your well-being. The data from the Apple Watch is combined with data you input directly on the app like medications, how you feel and timing of symptoms. With this data, your care team will be able to help you manage your Parkinson's better.

I also speak with a person with Parkinson's about their experience using the StrivePD app.

Enjoy!

https://www.strive.group/

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

This is our third episode in our series on the topic of using technology to assist you along your journey of living with Parkinson's disease. In this episode, I speak with a representative of a company offering a telehealth platform specifically for neurodegenerative diseases including Parkinson's. We all quickly adopted to seeing our doctors via the Internet during the pandemic. Some of us grew to like it or even prefer it over in person appointments. It offers conveniency, expertise and a care team approach. Who might be interested in utilizing such a service? Anyone. More specifically, someone without easy access to a Movement Disorder Specialist in their area. Also, people who are looking for a second opinion. Or, someone who is finding it hard to get an appointment with their neurologist any time soon to discuss medications and other concerns.

Toward the end of the episode, I speak with a person with Parkinson's who is a client of Synapticure, the telehealth platform, who lives in a smaller city in Georgia. Don't miss her perspective.

https://www.synapticure.com/

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

This is our second episode in our tech series. In the first episode we introduced you to a couple of physical items developed to help People with Parkinson's improve their gait and avoid freezing. The other episodes, including this one, will be more about using the internet and software/apps to help you and your doctor monitor your symptoms and provide you with the best care possible.

What if all you had to do is push a button and remote monitoring of your symptoms would begin? You and your doctor will know the exact times you are on and off – when your medicine is working or not. If you have dyskinesia or tremors. Information on your gait meaning an abnormal walking pattern. In this episode, I talk with a co-founder of NeuroRPM. They recently won FDA approval for their AI and data analytics platform for doctors, patients and partners. Basically, you wear an Apple Watch which communicates to an app on your iPhone and shares data with your doctor to assist with your care. It's remote monitoring at its best.

I also had the privilege of speaking to a person with Parkinson's who uses this technology. Find out what he has to say later in the episode. He is very insightful and a dedicated Army vet, a treasure and clinical trial advocate. Enjoy the show.

https://www.neurorpm.com/

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

We are kicking off our tech series with this episode. Technology has changed the way we interact with the world over the last couple of decades. The pace of change keeps accelerating. We can ask a small box any question and get an answer within seconds. We can pay for items with our phones. The list goes on. However, the healthcare environment hasn't really caught up to the other sectors when it comes to using tech to assist consumers/patients in improving their lives. We have definitely seen tech improvements when it comes to surgeries like DBS as well as machines used for imaging. Yet, not much for the consumer/patient experience. Well, we at the Parkinson's Experience found four companies determined to change all of that for the Parkinson's community. And, don't worry, these episodes will be easy to understand no matter what your tech skills are. Like Tech 101.

Up first is a company called Walk With Path. They invented a device that fits on top of any shoe and emits a light for people to follow. It is proven to help people with gait, freezing and other walking issues. Also, they are in clinical trials for 'smart' insole for the shoe to help with balance and mobility problems. So, your shoe will be communicating information to an app on your phone. Wow. It's high tech for your feet. Keep listening.

https://www.walkwithpath.com/

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

When we hear the word "rehab," what do we think of first? Some might think of a place where addicts go to get clean. Others might think of traumatic injuries sustained in an accident and the road to recovery. And still others might think of the place you go after a hospital stay of any length.

In this episode, we will focus on rehab or rehabilitation for People with Parkinson's no matter what the reason for which you were admitted to the facility. However, the principles we discuss are basically the same for any illness or injury. Rehab is the process of helping an individual achieve the highest level of function, independence, and quality of life possible. Rehabilitation does not reverse or undo the damage caused by disease or trauma, but rather helps restore the individual to optimal health, functioning, and well-being.

Let's find out more and some specifics. This episode is for everyone. Best to understand it before you need it.

https://encompasshealth.com/

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

I really like the story you are about to hear. It's uplifting because my guest is uplifting and inspiring with a nonstop positive outlook and genuine desire to help others. And, I also have come to love the sport of Pickleball. Pickleball is quite the popular sport and growing. About 48 million people in the US play. But, can it help with your Parkinson's symptoms. Is it safe to play? Let's explore Pickleball for Parkinson's with my guest and find out. Oh, and be sure to listen to the end. We had a great conversation after we stopped recording. I'll fill you on some more interesting facts about my guest toward the end of this episode. OK, as they say in Pickleball…dink on. For those who don't play , Google it!

https://www.indypickleballclub.com/

httsDBSan

Pain. We have all felt it over the course of living our lives. However, it isn't often discussed or attributed as a non-motor symptom of Parkinson's disease. And yet, it can be one of those symptoms that most negatively impacts our quality of life. How common is it that people with Parkinson's experience pain? Is it due to the disease or another cause? Does it matter in how to treat the pain? Where should we go for help?

In this episode, we talk with an expert specialist in pain management who will break down the five categories of pain in Parkinson's disease and help us understand the treatment options for each of those categories.

Whether you have experienced pain in the past, present or not yet, you don't want to miss out on this very infomative episode.

https://pisapain.com/providers/efrain-cubillo/

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