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...
May 05, 2022•33 min•Season 3Ep. 8
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 ar...
Apr 21, 2022•36 min•Season 3Ep. 7
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 ...
Apr 07, 2022•24 min•Season 3Ep. 6
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...
Mar 24, 2022•37 min•Season 3Ep. 5
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 jou...
Mar 10, 2022•38 min•Season 3Ep. 4
So, listeners, we made it to the 50th episode of The Parkinson’s Experience podcast. Wow. I am absolutely thrilled to have made it this far and am encouraged that we will still be talking about our Parkinson’s experiences on this podcast for years to come. Of course, I couldn’t have done this without your support and the support of my exclusive sponsor, Boston Scientific. I am continuedly humbled and touched to learn from listeners who send in comments about how this podcast has made a differenc...
Feb 24, 2022•22 min•Season 3Ep. 3
This is the first of our three-part series on the rehab therapies – physical, occupational and speech. All three of these therapies are extremely important throughout our journey with Parkinson’s disease. Most people with Parkinson’s will end up interacting with all three and the trained professionals in each discipline. Up first, physical therapy or PT. This might be the one you think of first when you think of rehab or symptoms associated with Parkinson’s. You may see your physical therapist m...
Feb 11, 2022•32 min•Season 3Ep. 2
Someone suggested the title of this episode be “potcast” which would have been cute. However, this is a serious topic so we resisted the urge to be cute on this one. This is not an endorsement of a therapy for Parkinson’s (you should always speak with your doctor before taking any medication). Rather it is meant to be educational and informational – a good, quick reference to the use of cannabis in the treatment of some of the symptoms of PD. In fact, we have included important reference links i...
Jan 28, 2022•34 min•Season 3Ep. 1
The topic for our end of 2021 podcast episode is how the Veterans Administration in the U.S., services the needs of our veterans with Parkinson’s disease. And it is good news for our heroes. Additionally, everyone can learn something from our speaker, Dr. Paul Larson a neurosurgeon. It isn’t just for our vets and their care partners, friends, and family. Listen to learn more about the VA program called PADRECC and cutting-edge research that has helped all of us. It played a key role in bringing ...
Dec 28, 2021•26 min•Season 2Ep. 24
Most of us people with Parkinson’s know that exercise is essential to living well with PD. We may not realize how important it is to exercise our brain as well. Yet, it is just as vital to challenge our brain as we do our bodies. Improvisation is a fun way to check this box. Improv might not be what you think it is. It isn’t stand-up comedy, and it really isn’t scary. It is an unplanned collaborative response to others using games and play to illicit reactions. Anyone can do it and it seems to i...
Dec 04, 2021•37 min•Season 2Ep. 23
This episode introduces us to Palliative Care and is one of the most important topics we have covered on the Parkinson’s Experience podcast. Don’t be deterred by the subject. I guarantee you will learn a lot from our guest, and it will make you rethink how you manage your health and pick your care team. This is not about hospice care. Palliative care is defined as an approach to care that addresses the person as a whole, not just their disease. The goal is to prevent or treat, as early as possib...
Nov 09, 2021•27 min•Season 2Ep. 22
Why is boxing one of the exercises recommended for People with Parkinson's? The list of benefits from this fun fitness activity is long and includes a link to cognition, stretching, balance and strength. It's the whole package. Learn more as you listen to the owner and head trainer of Pound Gym. https://poundgyms.com/ Also, 17 Branches is holding it's annual fundraiser, Box4Bucks, on October 23rd in Scottsdale, AZ and virtual on Facebook Live. For more information, visit https://fundraise.michae...
Oct 20, 2021•20 min•Season 2Ep. 21
In the category of what treatment options are on the horizon for Parkinson’s disease, gene therapy is one of the exciting ones. It can also be difficult to understand what it is and how it might help our brain function more normally. Never fear dear listener, we found a guy, well a brain surgeon super smart guy, to explain it to us so we can get it. So, stay tuned as we learn all about gene therapy as a potential treatment for Parkinson’s disease and how close we are to possibly adding it to the...
Oct 05, 2021•35 min•Season 2Ep. 20
It’s been over a year since we have had an episode of the Parkinson’s Experience on medication. So, we are focusing this episode on motor symptoms medication and, specifically, medication to help during the "off times". We begin the episode by having our Movement Disorder Specialist neurologist define off times and dyskinesias. Then, we break down the medications used during off times and for dyskinesias by category or mechanism of action. This is a great reference and important information for ...
Sep 20, 2021•36 min•Season 2Ep. 19
We often talk about exercise and activities as a great way to slow the progress of Parkinson's symptoms. Golf may not be one that comes to mind. Until now. In this episode I speak with a golf instructor who specializes in the biomechanics of the golf swing. His father had Parkinson’s disease. This led him to a passion for helping PWP. It just so happens the correct way to stand and swing a club and even the best way to putt aligns with the best posture for PwP to help with balance, core, and fle...
Sep 09, 2021•31 min•Season 2Ep. 18
I was introduced to my guest today by a past guest who takes her forced exercise cycling online classes for People with Parkinson's (PwP). Forced exercise isn’t exercise at gun point which is kinda what it sounds like. It is exercise with goals of hitting certain higher watts or rpms (revolutions per minute) so you maximize your heart rate. In other words, it isn’t sitting on a bike and reading a book. You may have heard of the now famous tandem bike ride that changed the way some think about ex...
Aug 24, 2021•35 min•Season 2Ep. 17
Welcome to the 3rd episode in our 3-part series on inspirational people living their best lives with Parkinson’s. We’ve highlighted a woman who climbed Mt Kilimanjaro and biked across Iowa 6 times and a woman who took up Ping Pong and won gold. She will be defending her title next month in Berlin. Good luck Margie Alley ! On this episode, we speak to an inspirational woman who took up painting after her tremor disappeared with DBS . She finds that painting is calming and helps with other symptom...
Aug 10, 2021•33 min•Season 2Ep. 16
The working title of this episode was "Ping Pong Phun". Instead we named it the same title as the guest's documentary which is a much better title and reflects our guest, Margie Alley's, motto. This episode is second in our summer of inspiration series. We hope you listened to the last episode featuring an inspirational woman who climbed Mt Kilimanjaro after her diagnosis and has a great way of looking at life. On this episode, we speak with a woman on the opposite coast of the U.S. and took on ...
Jul 27, 2021•36 min•Season 2Ep. 15
We are in the middle of summer and a great time to listen to podcasts on those road trips, beach vacations and long walks. So, the Parkinson’s Experience has lined up an exciting three-part series featuring inspiring people living their lives with Parkinson’s disease. Nan Little is my first inspirational guest. She asked a great question at the end of the episode - how are you going to live? Everyone faces challenges in their life. Some face multiple challenges at once or over time. It’s what we...
Jul 13, 2021•34 min•Season 2Ep. 14
Whether you can sing or can't hit a note. It doesn't matter to this exclusive club. You can only join if you are a Person with Parkinson's or a family member or friend. It's called Tremble Clefs and it's more than just singing. Music therapy is at the heart of this wonderful program. Parkinson’s disease tends to decrease voice volume. A monotone voice quality is another common symptom. In this episode, we learn from an expert in music therapy, different than just singing, about how we can improv...
Jun 29, 2021•37 min•Season 2Ep. 13
In this episode, we discuss not letting Parkinson's win . There is a new, make a wish type program for Parkinson's patients founded by a passionate advocate for the community and owner of a PD gym. What do you want to do again that PD has taken from you? Exercise is the only thing proven to slow the progression of Parkinson’s disease. Regular listeners of “The Parkinson’s Experience” will know we have featured PD gyms across the country devoted to helping People with Parkinson's (PwP) fight the ...
Jun 15, 2021•41 min•Season 2Ep. 12
What if a simple skin biopsy test could provide a deeper story about your health? The answers that the neurons in the skin can provide is amazing and has helped neurologists feel more confident in diagnosing a neurodegenerative disease like Parkinson’s. It certainly is less invasive than other tests used to confirm a diagnosis. Why is this important? The earlier the diagnosis, the faster you and your doctor can start planning your treatment and path to better outcomes. Also, it provides a quick,...
Jun 02, 2021•26 min•Season 2Ep. 11
How’s your handwriting? Has it worsened over time? Mine has. In fact, that was one of my first clues that I may have Parkinson’s. Small handwriting is a symptom of PD and it can be frustrating. It may also mean a decrease in hand strength. Legible handwriting is still very important skill and a source of pride. In this episode we speak with a person who is dedicated to helping PwP improve their handwriting through workshops and workbooks and a PwP who has taken the classes. In a matter of a few ...
May 18, 2021•32 min•Season 2Ep. 10
People with Parkinson’s have a 2-9 times increased risk of falls than a healthy person of the same age. This can be due to freezing of gait which occurs in about 40% of patients on average. Do you experience times where you just can’t move, can’t just take the next step for short or longer periods of time? Let’s explore why and how you can help yourself without necessarily increasing or adding medications. In this episode, we will hear from the inventor of an innovative device to help with freez...
May 04, 2021•35 min•Season 2Ep. 9
Do people ask you to repeat yourself frequently? Do you think you are talking loud enough for others to hear? This is not uncommon in PwP. It has been estimated that approximately 90% of all Parkinson’s patients will experience speech issues at some point in their journey with this disease. Some people don’t know they are speaking softly and/or not clearly so others can understand. This can lead to poor communication and social isolation. Speech therapy can and does help. However, now there is a...
Apr 21, 2021•38 min•Season 2Ep. 8
In this episode we tackle the extremely important topic of caregiving. Being a caregiver or care partner is often challenging and offers its own journey. It can be exhausting, frustrating, fearful, painful, as well as joyful, hopeful and rewarding. This is true for all caregiving not just for our love one’s with Parkinson’s disease. Today you’ll hear from someone who has experienced all the humanness of being a caregiver and ended up making it her life’s work to help all of us with the complex f...
Apr 06, 2021•39 min•Season 2Ep. 7
As of today, there is still no objective test to diagnose Parkinson’s disease. While we wait for researchers to find a biomarker, there is an organization using dogs to sniff out and detect an odor associated with PD. Yep, you heard it right. The dogs are super smellers and can detect PD with a 90% or better accuracy. To learn more about this and what this means for diagnosis and treatment of PD, we talked with the program director and one of the dog handlers. You won’t want to miss this convers...
Mar 17, 2021•38 min•Season 2Ep. 6
There are numerous opportunities around the country to get educated on Parkinson’s disease. There are books, videos, webinars, websites, and educational classes offered by clinics and outreach centers, as well as national foundations and organizations. It is very important to start your education very soon after diagnosis and continue to learn the rest of your life. Today, I want to highlight two not-for-profit groups offering free educational classes to the newly diagnosed but with a twist – ho...
Mar 02, 2021•41 min•Season 2Ep. 5
In this episode we speak with Dr. Shill again to get an update on the COVID -19 pandemic, the vaccines and how this all relates to Parkinson’s disease. Dr. Shill gave us a fantastic overview in August 2020 in episode 11 if you want to revisit that one. Also, we are trying something new on this podcast. Listeners recorded and sent in their stories of how using Zoom has helped them through these isolating times. Their stories are included in this episode. Enjoy.
Feb 17, 2021•25 min•Season 2Ep. 4
There is a special place in Portland, OR where an enthusiastic, trained fitness coach built a gym dedicated to helping people with Parkinson’s. She calls the people she trains – Fighters. That is very appropriate and sets the tone for what she expects from them. In one building they can take classes in drumming, singing, dancing, boxing, Tai Chi, yoga and more. 350 people take advantage of this opportunity to work on their physical and mental well being. Listen in as Kimberly Berg describes how ...
Feb 04, 2021•37 min•Season 2Ep. 3
