PD Outliers is an interview series in which outstanding PwPs talk about and share the methods they use to succeed with Parkinson’s Disease.
John Ball is 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
How he customizes his medication to boost his performance
The benefit of thinking like an athlete in relation to PD
Notes below each section detail what each part of the interview has to offer. At the bottom of the page you can find a series of follow-up links and notes from the interview.
Section 1 - Handling Early-On Set PD
Section Notes:
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
section 2 - Customizing medication for races & More
Section Notes:
15:55 How John manages his PD during races
18:02 How John and Pam adjust the time tables of their dosing
19:05 How John navigates the problem of many nurses not being familiar with how to administer Parkinson’s medications
23:15 How Parkinson's effects John’s breathing, and how he deals with it
26:03 John's comical sweating problems at work
28:32 How much exercise is too much exercise?
SECTION 3 - Thinking like an ATHLETE
Section Notes:
31:13 The importance of thinking like an athlete
33:50 How being an athlete helped with John and Pam’s early diagnoses
36:40 Health factors people with Parkinson's can be confident in controlling
37:55 What John would do differently if he were diagnosed all over again
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 to calm down, stop working so hard, and then re-establish an aerobic level that is 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.
To read more about the PD Outliers series or discover other interviews click here.
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