The Parkinson’s Fight Club

In this episode, Jamie talks to Sara Whittingham, an anesthesiologist, Air Force veteran and mother of 2 diagnosed with Young Onset Parkinson's Disease. They discuss her journey, from noticing symptoms like a tremor in her arm to her diagnosis in November 2020.

Before diagnosis, Sara was an active athlete, participating in triathlons and Ironman races when she wasn't being deployed overseas. After diagnosis, Sara thought her triathlon days were over until she got an opportunity to participate in a cycling study for Parkinson's that ultimately turned things around for her. 

Sara recounts how riding a Peloton regularly as part of a research study at The Cleveland Clinic put her on a trajectory that ultimately culminated in her crossing the finish line at Ironman World Championships in Kona Hawaii in October of 2023.

In this episode, Jamie has a conversation with Joe Barrett, a fellow ultra-endurance athlete from New Jersey who also has Parkinson’s disease. They became friends last fall when Jamie saw a post from Joe about how he had attempted to run the Moab 240, one of the toughest ultra-distance running events in the world. Though they have never met in person, Joe and Jamie share a lot of commonalities that are highlighted in this conversation.

Both Jamie and Joe have Young-Onset Parkinson's Disease (YOPD) and share a passion for extreme endurance challenges like Ironman, and ultra-marathon events. In this conversation, they discuss their experiences participating in these events. They talk about the mental challenges they faced during these events and the importance of positive mindset and perseverance. Joe highlights the importance of a positive mindset, supportive friends, and finding the right doctor to help navigate the challenges of living with Parkinson's disease as a young active person.

Joe expresses his determination to face challenges head-on, both in his running endeavors and in dealing with Parkinson's disease. He believes in the power of mindset and the importance of perseverance in overcoming obstacles.

Despite their condition, both Jamie and Joe maintain an active lifestyle and a positive attitude towards managing their YOPD.

Mentioned in the episode: UCAN Nutrition and Hydration

In this episode, Jamie has an illuminating conversation with Dr. Rodolfo Savica, who is professor of neurology and epidemiology at the Mayo Clinic in Rochester Minnesota. In his clinical practice, Dr. Savica specializes in movement disorders, particularly Young Onset Parkinson's disease (which is also called Early Onset Parkinson’s Disease).

Dr. Savica explains how he became interested in this field after encountering a patient with young onset Parkinson's who lacked resources and support. He highlights the main differences between young onset and late onset Parkinson's, emphasizing that the brains of young onset patients do not have the aging-related damage seen in late onset patients. He also discusses the challenges in defining and understanding the various conditions within the umbrella term "Parkinson's disease."

Regarding treatment, Dr. Savica explains that historically there was a hesitation to start medications aggressively in young onset patients due to concerns about complications. However, current data do not support this approach, and he advocates for individualized treatment based on each patient's needs and responses. He emphasizes the importance of optimizing medication dosages and timing to minimize off times and improve quality of life. The discussion

The episode also includes a lengthy discussion on lifestyle, including the importance of exercise for Parkinson's disease. Dr Savica emphasizes that 30 minutes of aerobic exercise, five times a week, is the best treatment to delay the progression of the disease.

The conversation concludes with a discussion about the need for further research on specific subtypes of Parkinson's disease, and the significance of collaboration between patients, experts, and policymakers to advance understanding and treatment of the condition.

In this episode, Jamie has a conversation with Joe Salazar from Brownsville Texas. They discuss Joe's Parkinson's diagnosis at a very young age and how that has affected his life. Joe was doing ok as a person with YOPD, staying active and still pursuing his dreams... until he contracted COVID-19 which took away his ability to walk. Joe was wheelchair bound until he was fortunately able to have DBS (Deep Brain Stimulation) surgery. The surgery changed his life, and the effects were immediate. Joe walked out of the hospital the day the doctors turned the device on.

After getting his life back, Joe began the difficult journey to get back his physical health. Through perseverance, determination and grit, Joe not only got his physical strength back... he is now training to compete on American Ninja Warrior!

In this episode, Jamie and Christy talk about how things went from bad to worse in 2021 when Jamie found out he had a mass on his kidney. He subsequently underwent major surgery to remove the mass, which turned out to be clear cell carcinoma. As if that wasn't enough... shortly after the surgery, Jamie got COVID, and THEN was hospitalized again due to an internal bleed (a rare complication to the surgery).

After all of that, in early 2022, their luck turned around, and Jamie and Christy found hope at the Mayo Clinic in Rochester Minnesota. They discuss their time at Mayo, and how Dr. Savica, the leading expert on YOPD in the United States, changed their outlook on life with Parkinson's.

After going to the Mayo Clinic in February, Jamie went on to complete an Ironman 70.3 at the beginning of April of 2022, a mere 3 months after having major abdominal surgery.

In this episode, Jamie and his wife Christy discuss the results of Jamie's DaTscan and how his scan looks like a classic case of Parkinson's. They talk about how difficult it is dealing with a diagnosis like Parkinson's, especially when you get the official diagnosis over a Telehealth appointment.

After diagnosis, Jamie and Christy struggled to find a doctor who saw Jamie for who he was... a 39 year old Dad of 3 young kids with a full time job, a 2x full Ironman finisher, with his whole life ahead of him. He even had a doctor tell him that he should probably stop running. They discuss the first time Jamie went for Physical Therapy for the Big and Loud treatment, and what the therapist said to Jamie that actually helped him start to feel a little better about his immediate future.

Jamie also really struggled to find the right medications, had bad side effects from some of them, and was given conflicting information about levodopa for YOPD patients.

As if getting diagnosed with Parkinson's disease was not difficult enough for them in 2021, Jamie also accidentally discovered that he had a mass on his kidney.

In this episode, Jamie and his guest Rune Vethe discuss the Bike to Barcelona project (aka Tour de Parkinson’s). This June (2023), Rune will be joining a group of cyclists, including 9 people with Parkinson’s, who will ride their bikes from the UK to Barcelona. They will cover 1,600 kilometers (almost 1,000 miles) in just over 2 weeks. They will arrive just in time for the start of the Parkinson’s World Congress, and they will also be met by a couple of other teams leaving from different locations.

Also in this conversation, Jamie and Rune discuss Rune’s journey with Young Onset Parkinson’s disease, his DBS surgery, and how he has used exercise and advocacy to fight back against Parkinson’s since his diagnosis. Rune has been a strong advocate for many years. You will hear about what Rune has done to help people with Parkinson’s in Norway. They discuss how Rune went to the World Parkinson’s Congress in Montreal 2013 where he met people from Rocksteady Boxing, which led him to start a project to bring the program to Norway. Rune is now a Rock Steady Boxing Coach.

Rune has also participated in past cycling projects for Parkinson's patients. One of his current projects, called ZWAP, which stands for “Zwift Against Parkinson’s,” is a group that meets online to ride virtually together. Rune and Jamie discuss how they met through indoor cycling on the Zwift platform, and how cycling can benefit people with Parkinson's disease.

You can follow the Bike to Barcelona journey here: https://wpc2023.org/page/bike

ZWAP - https://www.zwap.no/t-en

The Parkinson's Fight Club Facebook group - https://www.facebook.com/groups/parkinsonsfightclub

In this first episode of the Parkinson's Fight Club Podcast, Jamie and his wife Christy begin to tell the story of Jamie's Young Onset Parkinson's diagnosis. Part 1 of Jamie's story is all about what led him to see a neurologist and the difficulties of finding a diagnosis.

Jamie's journey with Parkinson's disease began in early spring of 2021. He and Christy reflect on the stress of the ongoing pandemic and their experience with a family member's hospitalization due to COVID-19. They discuss the subsequent emergence of Jamie's leg tremor, how his leg began constantly shaking all of a sudden, which led them on their search for answers.

Jamie saw two different neurologists, who gave him two completely different diagnoses. It was the second doctor who ultimately gave Jamie his initial Parkinson's diagnosis, which would later be confirmed by brain scans.

Jamie and Christy discuss how receiving such a terrible diagnosis is super difficult to deal with, especially for someone who is young and has a young family. But even during those early days they started to see some silver linings. They hope that sharing their experience will help others who may be in a similar situation.