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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 of Parkinsonism. It is very important to get the correct diagnosis in order to get the appropriate treatment. In this episode, Dr. Holly Shill, a Movement Disorder Specialist takes us through each of the Parkinsonism conditions, what are the symptoms, how to get an accurate diagnosis and how to treat each. We had a very interesting conversation on this topic.  Take a listen. https://www.barrowneuro.org/person/holly-shill-md-faan/ https://DBSandMe.com

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 disease or Lewy Body dementia, in the end it is a story of love, support and compassion. I really wanted to speak with the author after I finished the book and bring the story to you, the listeners of the Parkinson’s Experience podcast. What’s it like to be both a patient and care partner at the same time? How do you balance your needs with your partners? How do you make difficult, life altering decisions when you used to make them with your partner? This is not a sad story although there are sad moments. It is a story of true love that you will be grateful you have read it. Listen on. https://dbsandme.com https://www.leslieadavidson.com/

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 importance of community and research. I met Bill Bucklew through the Michael J Fox Foundation Patient Council. His story is inspiring in my opinion. He has walked across the U.S. and Great Britain, completed an Ironman, climbed Mt. Kilimanjaro, completed 11 triathlons and more than 40 marathons. Let's find out how and why he does it and how it helps him live his best life with Parkinson's disease. https://www.uncorkedadventures.org/  https://www.dbsandme.com/en.html https://www.michaeljfox.org/   

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 specialist, and I discuss that getting the correct combination of medications for each individual is as much of an art as it is a science. We will cover most drugs available for both motor and non-motor symptoms, why and when to use them and possible side effects, and touch on meds in the pipeline working their way to the market (hopefully) – all in a short time span. It will be a little like speed dating. So, buckle up and keep listening. Enjoy the show and I hope this is helpful. https://doctors.bannerhealth.com/provider/David+Shprecher/452122  https://dbsandme.com 

Are you a resolution person? Do you set yearly goals for yourself each January 1st? 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 journey with the disease? What follows are six brave people with Parkinson’s who tell us their New Year’s resolutions. We will be checking in with them in December. That’s a lot of pressure.  Want to play along? Send in your goals for the year via the comment section. https://17branches.org https://DBSandMe.com  

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 technology that delivers treatment directly to the affected nerves. So, this may include gene therapy or stem cells in the future. It’s exciting to think about. Let’s find out more from our expert neurosurgeon, Dr. Jonathan Parker who is the Epilepsy and Functional Neurosugeon at Mayo Clinic, about the what’s available presently and what is on the horizon. Warning – this episode is a bit longer than normal but well worth listening to the end. https://www.mayoclinic.org/biographies/parker-jonathon-j-m-d-ph-d/bio-20537491  https://stanmed.stanford.edu/vibrating-glove-reorganize-neurons-parkinsons/ 

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 your food selection make a big difference in your overall outcomes? Well, this is your podcast. We speak with a registered dietitian who specializes in neurological disorders like Parkinson’s. And, we get specific recommendations for a diet that optimizes your health living with PD. By the way, most of what we discuss applies to the general population so tell a friend and family member to listen in as well. https://www.eatright.org/

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 to research it after death. Therefore, this type of research is essential to discovering what causes Parkinson’s disease to develop therapies, hopefully, to slow the progression of the disease and to  cure it. Listen in to learn about the program and what they have discovered and contributed to research thus far. https://www.brainandbodydonationregistration.org/ 

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 described? Is it any different on a daily basis then how others feel? We asked six people living with Parkinson's from different parts of the country, different ages and both genders one question - what is it like to live with Parkinson's? Their answers are insightful, emotional and honest.  We hope you listen to all six.

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 and life and accomplish more than they ever imagined with or without the diagnosis. This is the inspirational story about one of those guys - Joe Drake. It starts with goal setting.  Along the way, he determined Parkinson's "is all part of the adventure." Stay tuned. https://joesgottarun.com/  https://www.facebook.com/joe.drake.391/  https://www.instagram.com/jddrake83/ https://www.uncorkedadventures.org/blue_ridge_relay/ 

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 ourselves, our family, and others on the road. So, we are talking today with an Occupational Therapist about when, why, how of driving while diagnosed with Parkinson’s. OT's are the professionals who see patients about activities of daily living and are trained to test people on their driving skills. We discuss the testing process and the legal implications. Listen in. Some helpful links are below. https://adaptivemobility.com/ot-driver-rehabilitation-specialist-directory/ https://impirica.tech/driveable/ https://driveablesolutions.com/ https://drivingtoindependence.com/

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 I need it. The trick is to have someone help you figure out what modification you should consider making before you have a real need for them. For example, avoiding trip hazards if you are experiencing falls or are starting to have dizzy spells, adding grab bars in the correct areas if you need help standing, and carpet versus tile floors. I think you will find this episode very informative and, frankly, upbeat. With a few changes, your home sweet home.

I often get questions from people in the Parkinson’s community about various symptoms they are experiencing. Is it the Parkinson’s or something else they ask. I usually refer them to their neurologist. Recently, I had a few people ask about changes in their vision which led to challenges in their daily living. I had never thought about vision changes being a thing. So, I sought an expert to explain what vision changes may occur with a Parkinson’s diagnosis, why they may occur and what can be done about it.  Whether you are currently having issues or not, I think you will benefit from the information shared in this episode. https://www.pennmedicine.org/providers/profile/ali-hamedani https://www.nanosweb.org/i4a/pages/index.cfm?pageid=1  

What is Young Onset Parkinson’s Disease or YOPD? Are YOPD people experiences different than the majority who are diagnosis at a later stage in their lives? How do they manage all the other challenges and blessings that life offers while dealing with this progressive illness? How do you navigate life with the PD symptoms you are experiencing in an ever-changing environment?  We will answer these questions and more with an expert Movement Disorder Specialist, Dr. Sana Aslam, and an inspirational young woman living her best life with Parkinson’s. More information on YOPD visit: https://michaeljfox.org https://parkinson.org https://davisphinneyfoundation.org For Kim Morgan: @ahealthydoseofstyle 

In this episode, we continue our discussion with Dr. Daniel Weintraub on the topic is mental health and the non-motor symptoms of mood disorders that some people with Parkinson’s experience. This is part two of our discussion. I hope you were able to listen to part one. In part one’s episode, we got a general overview on the topic of mood and thinking disorders in Parkinson’s as well as more specific information on the symptoms of depression and anxiety and possible treatments. In this episode, we address the symptoms of psychosis and cognition along with their possible treatments. I hope you’ll listen and encourage friends and family to as well. https://www.michaeljfox.org/symptoms https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Cognitive-Changes https://www.med.upenn.edu/geriatricpsych/clinicians_weintraub.html 

Our next topic is so important we are taking two episodes to tackle it. The topic is mental health and the non-motor symptoms of mood and thinking disorders that some people with Parkinson’s experience. It is a very sensitive and tough subject for some people. However, I always subscribe to wanting to understand as much as I can about my condition in order to be best informed and prepared. We have an excellent physician expert, Dr. Daniel Weintraub from the University of Pennsylvania, to walk us through this topic and the various disorders under the broader umbrella of mental health.  First up in this episode, we get a general overview and then address the symptoms of depression and anxiety as well as possible treatments. I hope you’ll listen and encourage friends and family to as well. https://www.michaeljfox.org/news/depression-anxiety  https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression  

Here at the Parkinson’s Experience, we try to cover every topic that may help even one person out there in podcast land. So, that includes not just the clinical or physical issues that can arise and not just the social and mental challenges that can be difficult but also the financial and work-related strains that can exist for people with a progressive neurological disease. That leads me to introducing this episode’s topic – Social Security Disability (SSD).  Because most Parkinson’s patients are over 65 years old, this topic might not be discussed much within support groups. However, understanding the who, what, where and why of SSD might be a vital lifeline for the younger crowd as they manage their PD journey.  Let’s chat with an attorney focused in this area to learn about this option and the process of applying.  We learned a lot, hope you do as well. http://www.injuredworker.com/ https://nosscr.org/

Summer travel season is around the corner. Although we are still Covid aware, it looks like travel is back. Whether by train, plane or automobile, Americans will be moving again. So, it is a fantastic time to check in with a Movement Disorder Specialist neurologist on how best to travel when you have Parkinson’s disease or are traveling with someone who does. We discuss general tips that can save time and frustrations as well as how to manage your meds. I get a lot of questions about the latter so stay tuned and take notes. I truly hope you can use this important information for your plans this summer or whenever you hit the road. OK, this podcast is ready for take off! https://www.tsa.gov/travel/travel-tips/can-you-pack-your-meds-pill-case-and-more-questions-answered 

OT is third in our 3-part series on the therapies most important to people with Parkinson’s. We covered physical therapy and speech therapy. If you haven’t listened to those two yet, please find episodes 49 and 51. They are very educational.  OT, of course, stands for Occupational Therapy. Wait, don’t stop listening. OT does not mean occupational training.  It does mean therapy or treating patients how to recover and get back to doing their everyday activities.  Occupational therapists like the one you’ll hear next listen to what activities of daily living you are struggling with and work with you to adapt and/or provide exercises to improve your abilities and live your best life with PD.  Some common symptoms might be buttoning a shirt, cutting up food, handwriting or typing and brushing teeth. The good news is occupational therapists can and do help us with any and all of the struggles we come across on this journey. You just need to reach out.  For now, stay tuned to learn from the expert and hear a patient’s story. https://www.lsvtglobal.com/ https://www.pwr4life.org/ https://www.honorhealth.com/neuroscience-institute 

Next up is part two in our three-part series on the therapies that are important to understand if diagnosed with Parkinson’s disease. This episode we focus on speech language pathology or therapy. I am guessing a lot of this information will be new to most of you. It was to me.  The speech language pathologist professionals help with communications disorders, cognitive-communication disorders, voice disorders, and swallowing disorders. We may encounter any or all of these at some point on our journey with this disease. So, listen in to learn from an expert speech language pathologist as she takes us through what to look out for and how to get help. We also hear from a real person with Parkinson’s tell her story on this topic.  Enjoy! https://www.lsvtglobal.com/ https://www.parkinsonvoiceproject.org/