The Parkinson's Experience podcast

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 t...

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...

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 trenc...

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...

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. H...

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 symptom...

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 t...

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...

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 c...

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 th...

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 explor...

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? Wher...

Maintaining good overall health and quality of life is important to everyone. Part of the maintenance, my parents always taught me, is regularly visiting the dentist for cleanings and cavity checks. It turns out dental care is particularly important for people with Parkinson's. Dental hygiene can be challenging for people with Parkinson's due to their symptoms, both motor and non-motor like apathy...

It wasn't that long ago that I heard the word Parkinsonism. What is that? Is that what I have? Why am I just now hearing this term? It turns out that a couple of friends were reassessed and found to have a different, but related, diagnosis than Parkinson's disease. Each had a different variant of PD. There are several conditions that have similar symptoms as PD. They fall under the umbrella term o...

Someone suggested I read a book titled "Dancing in Small Spaces." I downloaded it from Amazon and read it quickly. It is a gripping true story of a couple's life together. Leslie Davidson and her husband Lincoln get diagnosed with Parkinson's disease and Lewy Body dementia, respectively, around the same time. Although it can be tough to read if you are currently a person with either Parkinson's di...

This episode is about one person's persistence, resilience, and positivity and how these characteristics can lead to be more friendly with your Parkinson's disease. My guest has many amazing accomplishments that most of us will never even attempt but are interesting to learn about. The message he communicates to all of us is one of self-advocacy, exercise by doing something you like to do, and the...

It's been over a year since we have focused an episode of the Parkinson's Experience on medication. These episodes are always popular. Even if you think you know a lot about the choices available to treat the motor and non-motor symptoms of PD, I urge you to still listen in. There is always new information and new medications and something for everyone to learn. So, my guest, a movement disorder s...

Are you a resolution person? Do you set yearly goals for yourself each January 1 st ? Do you regularly accomplish your goals? Don't worry, this isn't an episode whose goal is to shame you into making resolutions. It can be fascinating what people choose as their resolutions each year. Do they accomplish their goals? For the people with Parkinson's community, are their resolutions related to their...

This is our final episode of 2022 and we have covered a lot of topics this year and heard from a few of you as well. However, this topic is an important one to understand as we all keep our therapy options open. Neuromodulation, which mostly means neurosurgery and includes Deep Brain Stimulation, may be a perfectly normal option either in the short term or longer time frame. Neuromodulation is the...

We weren't sure what the title of this episode should be at first. However, we get a lot of questions from fellow Parkies and others asking what they should eat for better disease outcomes. Thus, the title. Have you ever wondered what would be a good diet for people with Parkinson's? What foods to eat, what to avoid and why? Do you plan your meals to live your best life? How can a slight change in...

This episode is an important research topic. We interview one of the most significant and relevant brain and body donation research programs in the country. Some might find this topic tough to think about since people need to donate their bodies upon their death. However, it is one of the least selfish things to do. Since the brain is difficult to study during the life of the person, it is crucial...

Each person experiences the symptoms of Parkinson's and living with Parkinson's uniquely and it changes as the disease progresses. So the saying goes "if you see one person with Parkinson's, you have seen one person with Parkinson's".  No one can assume they will live the same as others with the disease. However, what does it feel like to live with this neurodegenerative disease? Can it be describ...

The headline read "Six marathons in six weeks." That hooked me in. Then I read a person with Parkinson's disease was the runner. Wow. I had to learn more. Everyone reacts differently to the PD diagnosis. Some don't know what to do or where to start. Some are in denial for as long as they can stay that way. Others tackle it with all they have and find they can take more control over their symptoms...

One of the possibilities along the Parkinson's journey is losing the ability to drive safely. This possibility is a scary one. For many, driving equals independence. So, it means more than just the hassle of getting around. It means losing your independence. It can lead to depression and anxiety. However, it is important to be safe on the road while driving a multi-ton vehicle. We must protect our...

The topic of this episode is home safety and how we might think about what we can modify in our homes to be safer in them as we age or as our Parkinson's progresses. I don't think of myself as an anxious person or someone who worries excessively. However, I do like to have information stored away for when I need it. After speaking to our expert on this topic, I feel like I have a resource for when...