An interview with Rob Warner, 17 years and counting with Parkinson’s, and still hang’n in there on March 26, 2024 by George Ackerman, Ph.D, J.D.
Biography
My name is Rob Warner. I am the husband to my wife Wendy and a father of 4 kids, Emily, Robyn, Sara, and Grant. I was a flight test engineer for the USAF for 23 years at Edwards AFB where I worked on almost every aircraft in the USAF inventory. I am also a man of faith. As a member of the Church of Jesus Christ of Latter-Day Saints I know that God has a plan for each of us. I don’t know why I have Parkinson’s as a trial but I do know I need to be an example of faith and endurance.
Please tell me a little about your background.
I was diagnosed with Parkinson’s in 2008 at the age of 33 after about a year of having symptoms. My first symptom was my left pinky finger would wiggle all the time. I thought it was probably due to a bike crash where I fell off my bike and injured my shoulder. I saw an orthopedic doctor who said he thought it was Neurological. My tension then went up a factor after hearing that. Then after a visit to the general Neurologist and he recommended that I see a doctor who specializes in ALS my worries went through the roof! It was 4 months before I would be able to see the specialist at UCLA so for those 4 months, I thought I had 2 to 5 years to live!
When I went to see the specialist, he laughed at the idea of it being ALS but then he said that he wanted to see a movement disorder specialist because he thought it might be Parkinson’s. By that time my wife and I were like, Phew! It’s just Parkinson’s. It would be several months before I was positively diagnosed by a PET scan, but I pretty much knew it was Parkinson’s after that first visit.
Can you tell me more about your organization?
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure? My path to advocacy was pretty much immediate. Although I didn’t start my own organization, I have been an advocate for MJFF and have been involved in a lot of clinical trials.
I had 4 kids ages 7, 5, 3, and 3 months and I had a great supportive wife and a wonderful career. I wasn’t going to let Parkinson’s beat me. I researched all I could get my hands on, went to every meeting I could to learn about the disease including the MJFF Parkinson’s 360 meetings, USC annual updates on PD and several Parkinson Foundation meetings. I signed up for every trial that would allow me to be a candidate. I started a local support group where we met monthly with people from my small town where I live but that didn’t out last Covid. I am an advocate for MJFF for the state and national level. I have met with several congressmen and senators’ aids advocating for military benefits and for the elimination of Paraquat.
What type of goals do individuals with Parkinson’s have when working with you?
I guess my focus now is just raising awareness of the importance of exercise to those of us with Parkinson’s. I ride weekly with the ZWAP Zwifters against Parkinson’s, and I also am training for a ride across Canada relay which my goal is to cross British Columbia. The organizers are two guys that did the ride a couple of years ago on their own and I learned about them through Larry Gifford’s Podcast. I found out they were on Zwift and contacted them to ride with me for the PD Avengers club. I met them, Jim Redmond and Steve Isemann, in person at the WPC in Barcelona Spain 2023. Afterwards Jim contacted me about the ride they wanted to do again but with as many people with PD that could join in part of the ride.
What would you like to see as a future goal for your programs?
I would love to contact as many people with Parkinson’s as possible to let them know that the only thing that is going to improve their lives right now, until there is a cure is high intensity exercise. They need to think of it as medicine. If you don’t do it you will lose it!
What events do you participate in?
I just participated in the Pasadena Triathlon, and my family and I have done two Salt to Saint relay races, 2018 and 2021. This is a 24-hour relay race from Salt lake City Utah to St George Utah. We earned about 25,000 dollars for the MJFF during those two rides.
I also participate in the USC DBS support group monthly. I am there to answer questions of anyone who has questions about DBS from a patient perspective.
How does this also assist the caregivers?
As far as the exercise events my wife has participated in, most of the events I have done. I am not sure how it assists her or other caregivers.
With the DBS support group, I think it comforts the caregivers to know that DBS is not as bad as they may think it will be and that it has become almost a routine surgery. My doctor has done almost 2000 surgeries with only one minor complication.
How can someone get in touch? What is your website?
I don’t have a website. I used to do a newsletter called the Pedaling Parkie but I haven’t done that in years. rwerwarner@gmail.com. I’m also on Facebook
How can others also become advocates for awareness?
I am not the best person to ask that because I have struggled to get on everyone’s radar for being an advocate. I pretty much had to force my way into being an advocate for MJFF and I am a bit of a scatter brain. I tend to drift from cause to cause. I guess I would say be persistent.
In your opinion what is the key to effective advocacy?
Getting out there and letting your voice be heard.
How can we better fundraise to support a cure for Parkinson’s?
I don’t know. I think I have tapped out on my fundraising abilities. The last couple of fundraisers I just didn’t get very many people to donate. I think I have asked so much of people that maybe they are donored out. I mainly focus on raising awareness now rather than focusing on fundraising.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I ride my bike 4 to 5 days a week, try to run once a week, and play pickleball whenever I get a chance
Why should people who don’t have Parkinson’s care about this?
It’s the fastest growing neurological disorder and it is estimated that the 10 million people that now have it will double by 2040! If you don’t have it you are bound to know someone that does. We could probably stop or at least lower the rate of diagnoses by banning the harmful chemicals like TCE, Paraquat, etc. known to cause Parkinson’s
Have you had any family members or relatives affected by Parkinson’s disease?
No just me
If you had one song that would tell us more about you or represent your life which song would it be?
This is a hard one. I don’t really have one so I guess I would say, Right Now by Van Halen
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Keep fighting! Keep Exercising! And stay social!