The Parkinson’s Fight Club

You Should Probably Stop Running (Jamie's Story Part 2)

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Episode notes

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.