PD AVENGERS MEMBER SPOTLIGHT
ROB WARNER
PD Avengers Member Spotlight - Getting to know us!
Each month we will be posting full blog posts about each member of the newly formed newsletter team! This month, we will be getting to know Rob Warner.
Picture of Rob Warner on his bike in front of an Air Force Jet
When were you/loved one first diagnosed?
My name is Rob Warner and I was diagnosed with Early Onset Parkinson’s Disease in 2007 when I was 33 years old.
Can you tell the story of your path to diagnosis?
My initial symptoms were dystonia in my left arm, no arm swing and slowness of movement, which occurred mostly in my hands. I wasn’t too worried about these symptoms because I had crashed my bike during a recent triathlon and thought I had just pinched a nerve. Initially, The doctor referred me to an ALS specialist (Lou Gherig’s Disease). This came as quite a shock because I had a wife and four kids at the time (ages seven, four, two, and four months old). I had to wait four months for this appointment and it was a very emotional and scary time for me since I knew there was a chance that I might never get to see my children grow up or have many more years with my wife. Fortunately during the appointment, the doctor confirmed that my symptoms were not related to ALS and referred me to a Movement Disorder Neurologist. I did not get my diagnosis with Parkinson’s Disease until a few months later, but at that appointment, I remember telling my wife as we left the office, "phew, it's just Parkinson's!” The misdiagnosis from the first doctor was bitter sweet. Even though it initially gave me so much stress, it also gave me the perspective that even though Parkinson’s is a crappy disease and will alter how I do things, at least I’ve seen my kids grow up and I’ll be with my family for a long time.
Once diagnosed, with the help of medication and exercise, my symptoms stabilized which allowed me to continue doing triathlons which I had grown to love, as well as work as a flight test engineer at Edwards AFB for 15 years until just this May I finally retired on disability.
Why did you want to become a PD Avenger?
I can’t remember how I came across the book “Ending Parkinson’s Disease” but after reading it I wanted to March on Washington! Non-violently of course but I didn’t know how to do it. But when listening to Larry Gifford’s podcast, “When LIfe Gives You Parkinson’s” and hearing he had started the PD Avengers I knew I wanted to be a part of such an awesome organization whose main focus is to end Parkinson’s.
What do you see is your superpower as a PD Avenger?
I think my superpower is being an example of perseverance and helping others with the disease, their family members, and anyone else who is curious about the disease. I refuse to let it win. I beat the odds by continuing to work for 15 years. Also, continuing my passion for flying by getting my glider’s license when my medical was taken as a private pilot. My goal has been to lead as normal of a life as possible while learning can about the disease and then helping others either through my newsletter the “Pedaling Parkie” or online, support groups, or just talking one on one with anyone that will listen to me. I have found that because I was diagnosed at such a young age that it is a great talking point to anyone who sees me shuffling, tripping, or freezing that I’m not drunk but that I have Parkinson’s. I guess helping others understand PD is my way of fighting back against the disease.
What is something you wish people knew about Parkinson’s Disease?
I wish people could understand the 24/7 aspect of the disease. It never stops trying to take from you. It is relentless in how it messes with every aspect of your life, physically, mentally, emotionally, socially. That's why we need to educate those around us, family, friends, coworkers, and government leaders on just how difficult it is to live everyday with PD so we can fund research to continue fighting for a cure.
What do you like to do for fun?
I love spending time with my family. We like to go boating, travel, and exercise together. My family is super supportive. They support me in my exercise and fundraising campaigns for PD. In 2018, I started a team called “Team Fight’s On!” to earn money for PD research. “Fight’s On” is a reference to what fighter pilots say to initiate a dogfight. Sometimes I feel like I am in a dogfight with this disease. My immediate family, my two brothers, my sister and her husband have now completed two “Salt to Saint” rides as part of the “Team Fight’s On!”. The ride is a 450 mile relay race from Salt Lake City to St George Utah. We have earned over $15,000 for PD research for the Michael J Fox Foundation (MJFF).
What advice would you give to someone who is newly diagnosed?
My advice to anyone fighting PD is that I cannot stress how important it is to exercise everyday you possibly can! It doesn't matter what it is, find something you enjoy because you'll do it. Boxing, cycling, dancing, Tai Chi, walking, jogging, yoga whatever it is just get up and move! We can't give up, we can't let it win!
What do you wish you were told when you were diagnosed?
One piece of advice is, I wish I had been told to look for trials that I could’ve been a part of much earlier in the course of the disease. I started on Sinemet as soon as I was told it was Parkinson’s. If I had known that would disqualify me from so many trials I would’ve delayed the use of it while my symptoms were still very manageable. I have been able to take part in many minor trials, but none with drug therapies. I found that by the time I was looking to be a part of many drug trials it was too late. So my advice to the Parkie Newbie is go to MJFF.org and sign up for the PPMI study. You can have your family sign up for it as well. You can also use the MJFF.org website to search for available trials in your area. The earlier you get involved in studies the better it is for all of us.
Is there anything else you would like to share with our community?
I had DBS surgery in Nov 2015 and it was a game changer. After the DBS surgery, I was down to 7 pills versus the 20 pills a day I took before the operation. Now I take 12 pills everyday, but these are not any of the pills that cause memory loss or compulsive behaviors I had taken previously. Best of all, it halted the dystonia issues I had in my leg and arm. For some reason the operation has made it more difficult to coordinate my arms and legs for swimming, which is one of the parts of the triathlon which I loved doing for many years. Just like everything else that comes with PD, when it zigs, I zag and now I exclusively ride my bike. I love the bike! A strange thing happens on the bike for me. I can be stumbling around hitting shoulders against walls, freezing, shuffling, and all the other fun that comes with the advancing disease, but when I get on a bike and start riding I feel almost normal. It is a great escape for me and if I don’t do it daily I usually pay for it. My medicine is not as effective, I have major sleep issues and I will have extended off time.
Do you have any PD hacks to share?
My way of getting out of a freezing event is by using a cheap $8.00 laser pointer. If I shine it where I want to take my next step it helps me get unfrozen. It also helps my shuffling gait by helping me focus on longer strides.
