PD OUTLIERS PREMIERE (EPISODE 1)
So often in medicine we aim for average. When we visit our neurologists for a check-up, if everything seems "OK" (we tap our fingers and stomp our feet successfully, we have no new problems, etc.) we are sent on our way with a pat on the back.
This makes sense. Our neurologists help us manage our problems, and counter any distress that takes us below normal functioning. When you have a progressive disease maintenance, after all, is considered progress.
Yet most of the Parkinson‘s patients I encounter want to be more than average. They want to thrive. I feel the same way. I‘ve had a drive to excel from an early age, and that is one thing Parkinson's has not taken away from me.
It is in this spirit of thriving, that I present to you the first installment of PD Movement Lab's new "PD Outliers" podcast. In this monthly series I will be interviewing top-performing PWPs to discern the habits, lifestyles, and psychological dispositions that allow these people to succeed.
In the first episode today I will be talking to John Ball, one of the most prolific marathon runners with Parkinson's in the world. Since turning 51 John has completed over 25 solo-marathons, numerous team events, and one thirty-plus mile ultra-marathon in the high, dry California desert. He is also a motivational speaker at Parkinson's support groups up and down the west coast.
In the conversation that follows we talk about:
- How he handled the challenges of an early diagnosis
- His evolution to being part of the Parkinson's community
- The importance of being a PD athlete
After you finish the interview, look below for follow-up links and notes on the topics we touch on upon.
***A Note On How to Use This Podcast: If you have the time to listen to the whole podcast, do. John has fantastic insights, stories, and advice for people living with PD. If you cannot listen to all 45 minutes, however, I've made it easy for you to just listen to the parts of the interview that peak your interest. Use the "show notes" below to see exactly when John and I talk about each topic, and skip straight to the section(s) you think will be the most helpful to listen to. These interviews are meant to give you new tools to improve your life with PD, so please use each podcast in whichever way works best for you.
Positive feed back or constructive suggestions about the podcast are welcome in the comment section at the bottom of the page.
Follow-up Tips & Links
- To try out or find a Parkinson's support group near you can check out America Parkinson's Disease Association's directory of local support groups and events here.
- If you are in the LA area check out the free 5K group training hosted by neurologist Sarah Ingersoll here.
- Here is the downloadable pdf letter sample John gives to doctors at the hospital to allow him to manage his own PD, while he is treated for something other than Parkinson's. You should only attempt to use this letter after you have had Parkinson's for an extended period of time, and have consulted with your doctor. That said, what a great idea John!
- A follow-up tip for dealing with heavy breathing (from John)
"When I’m running hard, or boxing, or doing anything that escalates my cardio-vascular demands, I find myself patting and gasping for air. I know it is worrisome to the people around me and I just have to back off the workload for a while and get it under control. There are some good habits to be learned through yoga, tai chi, or any good physical trainer or physical therapist, but for me the key is just calming down, stop working quite so hard and then re-establish an aerobic level that’s sustainable."
- A follow-up tip to deal with your excess perspiration (also from John)
"Once again, the answer for me seems to be to calm down and wait it out. It can certainly be awkward in some social conditions, but I usually try to explain (without going into detail) that it’s an infrequently discussed effect of PD"
- Finally, if you want to learn about John's experience more in depth, you can check out his memoir "Living Well, Running Hard" here.
Early-On Set Parkinson's
3:55 How his two kids handled his diagnosis at age 39
5:25 How John felt as someone young diagnosed with Parkinson's
6:00 John's initial poor experience with support groups
7:50 How his diagnosis affected his role as a father
9:05 John's progression from dealing with Parkinson's alone, to dealing with it as part of a community
11:25 The moment John realized he wanted to become a Parkinson's Advocate
12:15 Running and fighting Parkinson's as a team sport
14:55 Why John's dermatologist is so important
15:55 How John manages his PD during races
18:02 How to adjust the time tables of our dosing
19:05 Managing your Parkinson's when you go to the hospital for something other than Parkinson's
23:15 How Parkinson's effects both of our breathing
26:03 John's comical sweating problems at work
28:32 How much exercise is too much exercise?
Being a PD Athlete
31:13 The Importance of Becoming a PD Athlete
33:50 How being an athlete helped with our early diagnoses
36:40 Health factors people with Parkinson's will always be in control of
37:55 What John would do differently if he were diagnosed all over again