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Parkinson’s: An Athlete’s Journey is for athletes navigating Parkinson’s, the coaches and clinicians who train them, and anyone who wants real-world strategies for performance and longevity. Hosted by Eric Von Frohlich and Todd Vogt, the show focuses on tactical takeaways: how to train, recover, manage symptoms, and stay consistent when the rules keep changing. Expect honest conversations, tested routines, and guest experts who go deeper on what works.
Eric Von Frohlich (00:59)
So tell me about your life prior to your diagnosis. What were you doing and who were you and what what was going on in your life? Obviously having children was a big part of it.
Rob Warner (01:09)
Yeah, so lived in Lancaster, California at that time. It's about 70 miles north of it's in the high desert. It's near Edwards Air Force Base where I worked. all the shuttle landings used to be.
Eric Von Frohlich (01:15)
Okay. Where is Lancaster in Northern California or where is that?
Rob Warner (01:30)
It's where all the flight tests for the US Air Force is done. Because there's just a huge lake bed and it's in the middle of nowhere. So it's a great place to test airplanes, but not a great place to live. So when we first moved out here, my wife was like, where are you taking It's kind of desolate, huh? I said, no, it's totally desolation.
Eric Von Frohlich (01:39)
Yeah.
Right.
Wow.
Rob Warner (01:53)
But we made the best of it. We had four kids in Lancaster. three girls and a boy. We moved in a house there. And I was working as a flight test engineer. I worked mainly on weapons integration. So we would sure all the weapons were integrated correctly on the airplanes.
Eric Von Frohlich (02:14)
A
a slightly important job, I would imagine.
Rob Warner (02:17)
Yes.
you want to make sure the bomb goes where you want it go the right target, for sure. and just had a great time out there. I love my job. It amazing. I was probably about eight years in when I was first having symptoms and stuff.
Eric Von Frohlich (02:33)
what
were the first symptoms that showed up?
Rob Warner (02:36)
first symptom was similar to Michael J Fox, my left pinky. You start moving on its then my left arm would start moving across my body when I would be And I had swing in the arm. I did a triathlon out
fell when I was coming area. I fell on my shoulder thought that was what it was. I thought it was an orthopedic
Eric Von Frohlich (03:02)
You fell off the bike or you fell from the from the swim to the bike transition?
Rob Warner (03:05)
fell off the I
fell off the bike as I coming in the transition area. hit the curb, I hurt my left arm, so I thought I'd made an OT-type So went to them and they said, no, it's neurologic.
Eric Von Frohlich (03:18)
wow. So
that was a bit of a surprise, I take it.
Rob Warner (03:22)
Yeah, it was total surprise. And so I went to the neurologist and it took a long them to diagnose me first guy told me it was ALS, I told He said, I think...
Eric Von Frohlich (03:32)
wow. So you actually got a
diagnosis of of ALS initially.
Rob Warner (03:37)
Well, he was a I think but I want you to see a specialist at UCLA. So of course it takes four months to get into a specialist there. And so for four months I thought at a seven year old, five year old, a three year old, seven month old. And I see these kids grow up, you know.
Eric Von Frohlich (03:57)
Wow.
Rob Warner (03:59)
we were doing that and my wife said, okay, to this guy. We went down there and the guy said, who told you he had ALS? That guy's an idiot. So we're like, whew, at least we know it's not ALS. And then he was like, I do think it may be
Eric Von Frohlich (04:09)
Ha ha ha.
Right.
Rob Warner (04:18)
So we left his office we just talked to each other like, okay, well, it's not ALS. What does Parkinson's mean? No. first thing we looked at is, is Parkinson's fatal? No. Okay, well then forward and keep going. finally, about a year later, is when I finally got...
completely diagnosed, brain scan done actually. it was still not sure because I was so They weren't sure if I Parkinson's or Parkinson's disease.
Eric Von Frohlich (04:50)
Mm-hmm.
Rob Warner (04:51)
mid 2008 when I finally got the diagnosis. Now this is 2007 to 2008, so about 18 months.
Eric Von Frohlich (04:58)
Did you see a significant increase in your symptoms once you had the diagnosis or when you started working through it?
Rob Warner (05:05)
Luckily my symptoms started pretty slowly. had lot of dystonia, like I said, with my arm going body. I didn't have a tremor ever. I do now, but not hid it from work. I it from my coworkers four or five years. I didn't really keep a secret, but I just didn't really talk about it. I had told my boss.
I really hadn't told my coworkers And probably in 2012 was probably symptoms got worse. It started slowing down stutter stepping slowness of walking. Yeah. Yeah, people started asking questions and I just finally decided I was a supervisor at that point.
Eric Von Frohlich (05:42)
Right, you weren't able to keep it concealed anymore, I guess, at that point.
Rob Warner (05:52)
I brought all my employees in and they had this presentation of what is Parkinson's and said I have Parkinson's disease and just cut it out in the I was so grateful to do that. It was so much better after that.
Eric Von Frohlich (06:04)
Yeah, it must have been a huge relief as ⁓ I think it is for most of us when you first share it with your friends and family to be able to, know, not carry that burden by yourself anymore is is significant.
Rob Warner (06:08)
Yeah.
Yeah, it was a huge relief to find out. I'd already told my family, told my family three months after diagnosis, they knew I had all these other diagnoses. all happy to just know what we were going to be fighting at that point.
Eric Von Frohlich (06:36)
Right. Once you have a a list of the symptoms and the you're able to least rule out the other things that you you're not fighting. So you know that that was a huge relief for me as well. you know, upon my initial diagnosis, I noticed that my symptoms became a little more prevalent. must have been a psychosomatic
Rob Warner (06:47)
He's out.
Yeah.
Eric Von Frohlich (06:59)
symptom is to knowing what I was dealing with and then some of symptoms manifest a little bit more pronouncely. so it's not uncommon, but relief that it was an is significant. And so it gave you an optimistic ⁓ mindset right from the get-go, which is great.
Rob Warner (07:08)
Yeah.
Yeah, wife she said, you hey, you can't give up because I'm not raising these kids by myself. And it's just always been that way. She's been really just keeping it real and just my whole my kids, they tease me about my symptoms. you I mean, they're very sympathetic when I need help. They help me when preach.
Eric Von Frohlich (07:26)
Right, she didn't have by herself, so she's not raising them by herself.
Rob Warner (07:45)
I have lot of issues now with freezing and falling and stuff. there to help pick me up and they brush me off. But they never feel sorry for me or make me feel like I can't do something.
Eric Von Frohlich (07:58)
that's
remarkable. Did they pick that up from your wife or did you have some or counseling to help them kind of understand what was going on?
Rob Warner (08:07)
I don't know what it is. just... My daughter was seven when I was diagnosed, so we told her when she was probably about And my son, he's really... He was seven months old, so he doesn't know me without And so it's I guess they've how we act, try to always stay positive.
Eric Von Frohlich (08:21)
Right.
Rob Warner (08:29)
not always easy, but I try to keep going and then they just kind of follow suit.
Eric Von Frohlich (08:35)
Well, it seems like you had such a good perspective that they didn't see it as threatening to them as or misunderstand it because of the perspective that you and your wife had in setting challenge accordingly as opposed overwhelmed.
Rob Warner (08:43)
Yeah.
Yeah, if you have time for a quick funny story.
Eric Von Frohlich (08:54)
Yeah, I
have plenty of time. So this is what it's all about is a story. So please share.
Rob Warner (08:59)
So my son, when he was about three years old, we were in the grocery he's like, I'm just shaking like, do you have dyskinesia The elbow placed, left leg, it goes nuts when I have dyskinesia.
Eric Von Frohlich (09:09)
Yeah.
Rob Warner (09:14)
was dancing, funny dancing. And he's like, Dad, do you have dysentery? I'm like, no, it's not dysentery. He just yelled out, Dad, do have dysentery? I'm like, no, it's dyskinesia, kid, it's dyskinesia.
Eric Von Frohlich (09:23)
Ha ha ha.
It's too funny. my
kids I I didn't get diagnosed as early as you, so my kids make old man jokes about me anyway. So the in a similar way they, you know, they're aware of my Parkinson's, but don't break a hip dad or they call me Unc, sets the tempo that that I'm just an old man and I'm having challenges
Rob Warner (09:46)
man.
Eric Von Frohlich (09:50)
It kind of takes the edge off of it a little bit.
Rob Warner (09:53)
You have to have a sense of humor with this thing for sure.
Eric Von Frohlich (09:56)
That's for sure. I often liked exercise a lot before got Parkinson's. Now I it's become a necessary form. So I could always joke with my wife about needing to go to the gym instead of doing chores around the house I need to exercise for my Parkinson's.
Rob Warner (10:11)
Yes.
Exactly, yep, And very supportive exercising, you Every time I need to go out and long rides and
Eric Von Frohlich (10:24)
So were you a cyclist beforehand?
Rob Warner (10:26)
I guess it was when my first child was born, Emily. wife had the typical pregnancy. I have cravings and stuff.
Eric Von Frohlich (10:36)
Right.
Rob Warner (10:36)
And I had the same cravings, so would go and eat along with him. So I gained like 40 pounds. So I was like 240, no 230 was my max. yeah, it was.
Eric Von Frohlich (10:39)
Ha ha ha.
wow.
And you don't look like you're that big of a guy, so that must have been a lot of weight on your frame.
Rob Warner (10:56)
she was born and stuff, I started to work out of just coming home and sitting and watching TV, stairs or something. my goal was to, first goal was to here in California. My friend had done it and he said, yeah, let's do that.
Eric Von Frohlich (11:08)
wow.
Rob Warner (11:13)
All the training for that, I lasts about 20 pounds with that.
Eric Von Frohlich (11:17)
That's amazing. Nothing like going from climbing stairs to climbing Mount Whitney. That's quite a it's quite an ambitious jump. Is that emblematic of your personality or is that something that Parkinson's brought out?
Rob Warner (11:25)
Yeah.
mean I didn't do competitive sports besides I was on the swim team in high school. tried out probably the sports I was probably too small not talented enough always a stubborn little bit of a temper and stuff when I was growing
I played soccer and things couple of red cards and stuff. So I've always had a really attitude.
Eric Von Frohlich (11:51)
Yeah, sounds like you're a
feisty feisty athlete.
Rob Warner (11:55)
know if this pardons it or not, not anymore that way as far as anger and those issues. definitely... Exactly, exactly. But I feel like I a will to do better, guess, at whatever I
Eric Von Frohlich (12:02)
Well, we don't have the energy for it anymore.
Fantastic. So so you did you get in shape to climb Mount Whitney and ⁓ imagine you eventually climb Mount Whitney. How'd that go?
Rob Warner (12:23)
It was up is easier than coming killing me. That was something I discovered. was knees were so dead by the end of that. I was just toast. it was 21 miles in one day and probably
Eric Von Frohlich (12:27)
you know that or did is that something you discovered?
Rob Warner (12:41)
feet of climbing. my wife if she ever wants to it, I'll do it with her, but I won't do it besides that, and she's never wanted to do it, so that's good.
Eric Von Frohlich (12:43)
Amazing.
Ha ha.
Well then you pick the right person to offer that to.
Rob Warner (12:55)
Exactly. That's
Eric Von Frohlich (12:57)
that's great. So how'd you get into s what made the transition from climbing mountains to cycling?
Rob Warner (13:02)
So I was thinking, well, I gotta do something else, because I still have a lot of weight to And so I decided to try biking a little bit. And so I had a mountain bike. And I'd go like five miles, and I'd be dead tired. there's a lot of wind. So I made the mistake of going with the wind. I'm like, this is awesome. This is great. And then go up like five miles. I had to call my wife to come pick me up, because the wind was too strong on the way back. I'm like, oh, man.
Eric Von Frohlich (13:07)
Mm-hmm.
Yeah.
You only make that mistake once.
Rob Warner (13:28)
But,
exactly. then after never heard of anything besides Iron Man triathlons. But I heard about Sprint on the news. I told my friend about it I said, we should do this. you know, three mile run.
Eric Von Frohlich (13:36)
Uh-huh.
Rob Warner (13:45)
15, 20 mile bike miles mile. This is about 2004.
Eric Von Frohlich (13:48)
year was this around?
okay, so this is pre-diagnosis.
Rob Warner (13:54)
Yes. So I did about probably about 10 triathlons I got diagnosed. So I did St. George one, Island, did Fields here in Ventura County, various ones.
I've done a couple since then, the Pasadena triathlon, which is in a pool, which little safer for me to was how I got into it, and just trying to lose So I was able to lose most of weight that way, and once I got already still liked doing triathlons, so doing
Eric Von Frohlich (14:15)
Yeah, I would say so.
Rob Warner (14:28)
noticed that that was probably when I was deciding on getting DBS because when I'd be running, talked to my doctor because whenever I run, left leg starts to twist. So she said, well try, you know, running, doing side step, you know, or running backwards or things. So that helped a lot. And so it resets your brain somehow.
Eric Von Frohlich (14:40)
Mm-hmm.
Right.
Rob Warner (14:52)
or my left arm would be crossing and stuff. So she'd do this and in the middle of a triathlon. was pretty good swimmer. I'd always be in the top 15, 20 out of the water. I'd hold my own on the bike, but not a runner.
Eric Von Frohlich (15:05)
wow.
Rob Warner (15:09)
I'm in the front and the bike, some people start passing me and then the whole gang just goes right past me and I run. And so I would be back with all the older women and stuff I passed them and then my left leg would start to twist, I'd start running backwards. And these women are like, what the heck, these guys.
Eric Von Frohlich (15:09)
⁓
Rob Warner (15:35)
Making fun of me or something.
Eric Von Frohlich (15:36)
Right.
Rob Warner (15:38)
I didn't have time to explain it to him, so I'm sure they hate me still. That jerk just trying to show off and run backwards in front of me.
Eric Von Frohlich (15:46)
Well, it just goes to show you that has something that being challenged by that you may know nothing about.
Rob Warner (15:52)
Exactly. Don't judge, for sure.
Eric Von Frohlich (15:55)
And
⁓ it's a lot easier just to, you know, assume that there's something going on as it is to assume that they're that they're, you know, mocking you or anything else. So one of the lessons of Parkinson's is it teaches you a lot of humility and a lot of forgiveness and lot of patience.
Rob Warner (16:11)
for sure, for sure.
Eric Von Frohlich (16:12)
Well that that's amazing. So did you go back to mountain climbing at all or did you give that up when you got diagnosed?
Rob Warner (16:20)
I've been go camping with my son. he was in scouting through our church. have different leadership opportunities in our church and I was the young, or the young men So in charge of taking them hiking and stuff.
So would do it with them, but I didn't do it on my own very much. Mainly because I love fishing and I just couldn't do the tiny hooks.
Eric Von Frohlich (16:44)
I just
went I just went through that on a fishing trip. we took my boys up to Alaska we just were fishing the this last week. We came home with halibut and king salmon, but I didn't have the dexterity to lines. So I was fortunate that we had a very understanding, patient captain who would tie my lines and bait my hooks make life a little bit easier on me so I could put my energy where it was needed.
Rob Warner (16:49)
Yeah.
Yep.
when my father was still brother, planned really cool trip to Montana. It was all just us guys. my brothers, him and his son, and my dad, his grandpa, we took a trip up to the Three Rivers area in Montana and did a fishing trip. That was awesome
Eric Von Frohlich (17:30)
beautiful.
Rob Warner (17:33)
beautiful area and just great conditions. But yeah, that was just awesome to have a guy there, a tour guide that tie all your lines for
Eric Von Frohlich (17:42)
Yeah, it helps when people understand what your challenges are. what often gets misunderstood as being or unwillingness to do things. quickly realize when they see how long it takes me to tie a knot, they quickly realize it's just easier to tie it than the the urge to have me do it myself.
Rob Warner (17:55)
Yeah.
We're in the process of moving our house. We're moving Utah. thank you. Yeah, we're excited. It's mainly because of my Parkinson's and get back. Yep, my family is up there. where I am, in Tatchby now, which is about two and a half hours from my doctor USC.
Eric Von Frohlich (18:05)
congratulations.
To be closer to your your your care center.
Rob Warner (18:24)
I'll be about 20 minutes away from my doctor up in Salt Lake City.
Eric Von Frohlich (18:29)
Well, we have lots of parallels. I just moved last week just before we went to Alaska. And been a bit of a challenge because as you know, moving can be a little stressful and little challenging to clear your house out and do all the things you need to do to to move. But it's been it's been wonderful and I'm sure that you'll have the same experience. It's challenging at first, but you realize how important it is to
Rob Warner (18:34)
Hi.
It's helpful.
Yeah.
Eric Von Frohlich (18:53)
have the right people around you and and support.
Rob Warner (18:56)
Yeah,
I'm so grateful for all the people that have helped us my wife's still working, but we're trying to move and so her last day is next it's just been my daughter and I, we've just been trying to do anything she does about 15 things the amount of time I do one My wife does about 40 things the amount of time we do anything.
extremely patient with me, is good because it's work too hard, I'm dead for two days.
Eric Von Frohlich (19:23)
Right. It's frustrating enough to have to deal with the symptoms and to everyone else have to pick up the slack. But it's ⁓ hard if people aren't willing to do that. We used to joke when I had shoulder surgery, I'd have trouble putting my jacket on and my kids would just watch me get stuck in a position and they would kinda want to help, but more I think it was just them being like, the old man struggle a little bit.
Rob Warner (19:48)
Yeah.
Eric Von Frohlich (19:49)
And ⁓ it was kind of tongue in cheek. And one day I got to a point where I said, you know, I can appreciate needing to do certain things when I have to, but if you see me frozen in a position, would be more helpful if you just kind of pull the jacket where it needs to be and and let me get on with my day and get frustrated and short tempered as a result of my own inability to do certain things.
Rob Warner (20:05)
...
Yeah. Yep,
exactly. Yeah, you have to train them a little bit, they get it eventually, for sure. So my daughter, be 26 this other daughter is 23, and then my son is 19.
Eric Von Frohlich (20:20)
Exactly. How old are your kids at this point?
So I had the a challenge of have a twenty-one year old, fourteen-year-old and a nine-year-old. And my twenty-one year old grew up with me having no symptoms and being fully capable as an athlete and as a provider. so she grew up with an appreciation of my abilities at that time in my life. then my fourteen year old kind of has had experiences. One where I went from surfing with them every day when we were
living in California and doing and and being very capable to being challenged and having this kind of like Jekyll and Hyde And and then my youngest is just kind of grown up with me only knowing me some of my symptoms and stuff. And so he's he seems to be the most understanding of all of ⁓ but it it's it's a challenge for for your family to make that adjustment is
Rob Warner (21:01)
that.
Yeah.
Eric Von Frohlich (21:26)
As I'm sure you found.
Rob Warner (21:28)
Yeah, I think actually like what you said there, because my kids are much more compassionate with other people, I think. And maybe other kids of me. my oldest was seven when I was diagnosed. So all the kids have pretty much known me with Parkinson's is it.
Eric Von Frohlich (21:35)
Mm-hmm.
I'm sure.
Rob Warner (21:46)
And so, mean, it's been 18 a long time, and my wife, we were talking, and I've had Parkinson's since now we were married. I mean, she's known me with Parkinson's than she knew me without. Yes, well, I'm pretty sure.
Eric Von Frohlich (21:48)
Almost twenty years, right?
Well,
And she still likes you.
Rob Warner (22:06)
I think sure, I hope sure. No, she's very awesome and just very supportive. She is frustrated when I don't talk clearly and talk too quietly. What? can't hear you. Speak up. all keep it real for sure.
Eric Von Frohlich (22:09)
Right. It's funny.
Right.
Well that's it's a beautiful thing when you have a family who can support that and understand process of what you're going through. It doesn't solve it but away a lot of the frustration and a of the anxiety that otherwise exists when you're dealing with the general population.
So
tell me about how you decided to have this big idea of exercise and movement and it was making your life better and was that transition like?
Rob Warner (22:51)
I was first doing it to lose weight then with Parkinson's that came this is before they really even had any studies the
Eric Von Frohlich (22:59)
Right. Yeah, you've
had it for quite a few years, so is is good, is kind of a new thing in in this world, right?
Rob Warner (23:07)
Yeah,
yeah, I felt better when I exercised. I kept doing it and it also became a thing of I wanted to do advocacy with it. that's kind when I got my involved with it and they would do these sprint triathlons and a couple Olympics and stuff with me.
we would do it for the Parkinson Foundation or the Michael J Fox Foundation. So we earned a lot of money that And then when I finally had DBS, DBS was incredible. It was in 2015. reasoning for doing that was just because when I would bike and I'd get the twist in my left leg and it would...
I'll see a lot of dyskinesia in that leg. And I decided if I can't exercise, I'm not going to get any you know...
Eric Von Frohlich (23:48)
Right.
Right. There's no
way to modulate symptoms if you can't exercise.
Rob Warner (23:56)
Exactly.
And it seemed like it got worse the pace I would go at. It would get worse, I have to have something. So I did the DBS and it changed and everything.
Eric Von Frohlich (24:08)
Yeah, to that
a little bit because V S is probably not on the radar at this point,
Rob Warner (24:13)
so I had the STN version which allows you it helps a lot with dyskinesia, helps lowering the amount of meds and helps a little bit with dystonia and went to USC to get it marvelous doctor, took a while for him
with all the updates of the battery and things trying get it all set up correctly. You have a lot of medicines you're already taking and you're trying to balance the tune of the meds DBS settings and things.
Eric Von Frohlich (24:44)
Right. So you have to relearn your medication mis requirements based on the effectiveness of the D V S, right?
Rob Warner (24:52)
Yep, exactly. it took probably about a year and a half before I felt like I really had tuned in. But man, even after just the surgery itself, get this call it the honeymoon stage because before you even get the DBS set up.
Eric Von Frohlich (24:59)
okay.
Rob Warner (25:08)
because of impact it has on the brain when they put the leads in. you improvement, lot of people have improvement of symptoms for couple days. For like two weeks, had just, I didn't. Yeah.
Eric Von Frohlich (25:21)
wow. you you were thinking it was just a DBS procedure
that had brought that on and and it was kind of more of a side effect.
Rob Warner (25:31)
Yeah, it was amazing. I remember being in the shower and I was like, I move and I got done like two minutes. was like, this is awesome. I it was great. to get a little bit worse. But as they started changing the settings and getting the actual DBS it got back. And so I probably had about two years of pretty much almost.
Eric Von Frohlich (25:41)
Right.
Rob Warner (25:55)
down from 20 pills a day to probably six Yeah, I was on that. I was on Haslett. was Comtan, all these different drugs. And I got off all of them except for just the Carbidopa Levodopa. And I was taking six pills a day and that was But I'm right target and I have a
Eric Von Frohlich (25:58)
wow. Of your Cordoba Lovidopa? Amazing.
Amazing.
Rob Warner (26:22)
I mean, had probably three to four years of just bliss, of almost like It was great.
Eric Von Frohlich (26:29)
I did
appreciate that because when I had my shoulder surgery, my wife realized that my anesthesia my tremor and that it eliminated it for the at least not only the time that I was under the anesthesia, but for like two or three hours afterwards. And she was amazed at how still it was. And to feel your body actually relax like it used to is euphoric. I mean it's something I never
Rob Warner (26:50)
Yeah.
Eric Von Frohlich (26:54)
would have believed happen or I'd ever experience again and just the ability to your arm speaks to the challenges of of this disease more than anything else. Something as easy as rest isn't easy.
Rob Warner (27:01)
Yeah.
Yep, exactly. For me, it's almost like an internal tremor at night, where if I'm really tired, I just... I can't relax. I would say that every muscle in my body just tenses and I just can't get through And then you can't sleep, of course, so it's just... It's never been a battle.
Eric Von Frohlich (27:15)
Mm-hmm.
Right.
Right. Well they they they often say that you don't die from Parkinson's, you die with Parkinson's, but a part of you actually feels like it's died because you don't have some of the things that you didn't appreciate as much as you do now, affecting you.
Rob Warner (27:44)
phrase I think is something that we need as a community to get away from in September I broke my back, I fell off my bike because I dyskinesia in my left It got caught in the back of I thought I was going about 15 miles an hour down a hill.
Eric Von Frohlich (27:50)
Completely agree with you on that.
wow.
Rob Warner (28:06)
scared to almost to stop and then they got sideways and they landed on my back and broke my back.
Eric Von Frohlich (28:12)
Well
bite cycling is dangerous enough without Parkinson's. With Parkinson's, it seems that you're gonna have accidents.
Rob Warner (28:15)
I know.
like, I wouldn't have had that accident if I didn't have Parkinson's, you know? And then I broke my toe later because I tripped on something, I in the bathroom. I'm like, man, all these things happen because I have Parkinson's and not because of the things I'm doing. Exactly, yeah.
Eric Von Frohlich (28:23)
Right.
Not just because of life. Yeah, well,
it's you as much as we dislike the saying, it's certainly more probable that you're gonna die as a result of some of the symptoms that you to fall and if you hit a car instead of falling on the ground, you might have very well have died because of your Parkinson's. And you might have very well have died if you tripped your from in the bathroom and hit your head on the toilet.
Rob Warner (28:55)
Right.
Is that?
So.
Eric Von Frohlich (29:04)
You know,
there's there's certainly I agree with you it's truism, but it's not one that's very comforting when you're living with the disease and kind of minimizes the impact it has on us.
Rob Warner (29:13)
and
Exactly. mean, my friend, he just fell and broke his hip and his femur and has really bad Parkinson's. mean, he's bruised quite a bit. well, wouldn't know that would happen if he didn't have Parkinson's. know, so, so it's like when we say we don't die from Parkinson's, but we wouldn't die
Eric Von Frohlich (29:33)
Right.
Rob Warner (29:40)
is kind of morbid to talk about, but I don't think we would die if things weren't happening because of the Parkinson's Exactly.
Eric Von Frohlich (29:46)
Well, ve eventually we're gonna die anyway. I
guess is the comforting part of it is like no one's getting out dying. But but life is hard. And I think that what we get is that isn't supposed to be hard. And when you can accept that life is hard Parkinson's and life is hard without Parkinson's.
Rob Warner (29:55)
Exactly. Yep.
Eric Von Frohlich (30:09)
Life is hard if you're disciplined, life is hard if you're undisciplined, life is hard if you're overweight, life is hard if you exercise. You know, life is just hard and challenging and your ability to do hard things is what Parkinson's teaches you to accept. so you become more resilient and at dealing with adversity the average person because you're confronting it every day.
Rob Warner (30:17)
Yeah.
Yep, that's so true. so I kind of go back to what you're asking about the exercise and things. for me it's hard to just exercise because it's fun. I I enjoy cycling and I think the best thing about cycling is
Just for example, I had broken my toe. So I had broke my back in September and so I four months off of a bike for Then I got back on the trainer at least for a little bit. Then I broke my toe in January. So I'm like, I have this big huge run in May I have to I had about two months off in January because of that. So as I...
Eric Von Frohlich (31:02)
Mm-hmm.
Rob Warner (31:14)
I an e-bike just use in case I couldn't do all the mothers we were doing for our trip to Phoenix. I... The electric bike, or?
Eric Von Frohlich (31:22)
Right. How is that then?
Yeah, the e and the support that that's been able to provide for you.
Rob Warner (31:31)
It's been good. used it probably about a third of the time on the trip. fun. I I go a lot faster with it. And it was kind interesting that because of the miles we were doing every day though, were doing like 60, 70 miles sometimes a day. So it was...
Eric Von Frohlich (31:36)
huh.
Right.
Right.
wow.
Rob Warner (31:55)
The challenge of trying to use a neat that distance is if you want to lose the whole time, you can only use it the lowest level. So I wasn't really getting that much of an assist. And it was kind of a heavier bike. love it. And it's fun just to be around town now. But when I was doing it for that, it didn't really help as much as I thought it would.
Eric Von Frohlich (32:04)
Yeah.
Right. So how did you how did you come up with this idea start this foundation of ride to Phoenix?
Rob Warner (32:25)
Yeah, extended family is very supportive as well. we've done a couple of long rides and things. We did one called the Salt Lake Saint Ride. from Salt Lake City to St. George, Utah. 400 miles. So it's a relay race. It's overnight, so you start in Salt Lake.
Eric Von Frohlich (32:39)
Wow, how far is that?
Rob Warner (32:46)
He did like 20, anywhere from 15 to 30 mile of And he was from a team of eight people. yeah. so we had eight of us, my sister, my two brothers, and my brother-in-law, my wife, and my kids did it us.
Eric Von Frohlich (32:51)
Okay.
and you just rotate?
Rob Warner (33:08)
the kids that were around at that time, know, were in college or whatever. we did that. I started doing a little bit longer distances because of that one. And then when I was, I started on Zwift in the wintertime or I was able to meet some people on
Eric Von Frohlich (33:22)
Mm-hmm.
Rob Warner (33:25)
They were from from Norway. told me about the World Parkinson's Congress. They told me they were doing a ride to Barcelona They were going to ride from England and from Italy from Spain, three different They had a ride to the Congress. And this was back in 2023. was like, wow, that sounds fun. I wish we could do that.
I went to the amazing to go to that, but I was unable to be a part of that ride. So I determined then, if the next one's in the United States, we're do a And wasn't sure, know, if I'd just be part of the ride or I didn't want to lead a ride for found out it was in Phoenix,
I said, hey, this will be great because we'll be living in Utah. We'll get to ride down there. And so I took on captain role. we didn't actually move to Utah yet. So that's kind of a bummer. just went up drove up there instead of going from there.
Eric Von Frohlich (34:23)
Right.
Rob Warner (34:30)
Yeah, was just an amazing experience get my family involved, my brother and his wife. our SAG, right,
Eric Von Frohlich (34:40)
so how many people were participating? You said you got your family involved, but how many people did the ride?
Rob Warner (34:46)
So my brother and my sister-in-law, they were the sag wagon and they would ride, you know, when they weren't or, you know, getting monitors or whatever for So they probably averaged about 15 to 20 miles a the two I had my brother, he was doing a lot of the...
logistics work he couldn't take off work enough to do the ride with he did all the training plans for everybody and my sister she was doing a lot of the work to find funding for us and she gave it was the one talked me starting the charity Cycling to End Parkinson's
Eric Von Frohlich (35:23)
⁓ great.
Rob Warner (35:24)
And she was instrumental a lot of the logistics of, know, we're going to stay and stuff. husband, the one that got all the hotels for us. we had three of us full-time writers. There was a guy so Steve Newton.
Eric Von Frohlich (35:33)
Mm-hmm.
Rob Warner (35:45)
his son-in-law Richard. They rode with whole way and they were both on trike bikes. yeah, me on two wheels and them on three And then every once in while, my brother and sister-in-law would be riding with the entire ride from Salt Lake to Phoenix.
in May and it got really hot. It was cold at first and it just got really hot by the time we were done but was great experience.
Eric Von Frohlich (36:12)
it's fantastic. It's it's wonderful that you had so many of your family members supporting it.
Rob Warner (36:17)
teased me, like, Rob, can we do one family event where we're not on a bike, please? Because it seems know, we've done the Salt the Saint twice, and we now did this. Next year, let's just go to Bear Lake and just chill. Yeah, exactly. Okay, I guess.
Eric Von Frohlich (36:33)
Right fish.
that's great. you set up in your next challenge or are you you have any races that you are looking forward to or going on in in your own training?
Rob Warner (36:46)
I
haven't yet because we're moving a lot. it's a little bit difficult figuring out what I'm to do next. to have something though need something to motivate me a little more.
Eric Von Frohlich (36:58)
Exactly. the only time you're happy at a race is when you're setting up your next race. The finish the finish line can be a little depressive if you don't have a if you don't have something else organized.
Rob Warner (37:03)
Yeah, exactly.
Yeah, I am looking forward to being on a ride with my brother up there in Utah my sister as well.
Eric Von Frohlich (37:16)
I I
whereabouts in Utah are you moving?
Rob Warner (37:20)
Maybe you live in North Salt Lake?
Eric Von Frohlich (37:22)
So you'll have plenty of athletic people around you. You people from Utah seem to work out quite a bit.
Rob Warner (37:25)
Yeah, so much.
Yeah, exactly. And Rock State boxing there in the same town. And they do rock climbing. Yeah, There's a couple in the back east that did some with people and they found it really helped their symptoms.
Eric Von Frohlich (37:33)
great.
Rock climbing for Parkinson's.
fantastic.
it seems like soccer's been on the mindset and I just saw something today on soccer for Parkinson's.
Rob Warner (37:55)
wow. I mean it seems like it doesn't matter what you do if you just gotta do something.
Eric Von Frohlich (38:01)
playing back and forth between the world of pickleball and the world of jujitsu. So I get socialization in both of them and I get movement in both of ⁓ and lot of camaraderie because both fairly ⁓ So it it works very beneficial.
Rob Warner (38:17)
Yeah.
I've done pickleball and stuff and I enjoy that. was so concentrating on getting ready for this ride and just doing all biking. be nice now to be able to do a little bit more of different things. I've also heard of neuro-pong. So ping pong,
Eric Von Frohlich (38:35)
No. What's that?
Rob Warner (38:38)
were at the Royal Parlaments and Scholars Phoenix. They had table tennis there in Setup.
Eric Von Frohlich (38:45)
Well they talk about all the benefits for normal populations of pong and the longevity and the neuroplasticity that it builds. It's ⁓ it's well known have lots of positive effects on and consequently even more so for for people with Parkinson's.
Rob Warner (38:53)
Yeah.
Yeah, I have a lot of issues with freezing, but when I'm pickleball, I'm almost normal. It's like that initial, you when they serve it, I have to stumble, but after that, I'm fine until the ball goes out and then I'm like stuck again. So it's just amazing how the brain works.
Eric Von Frohlich (39:25)
It's a motivation to keep the ball in play.
Rob Warner (39:27)
He's heavy, yep. As I keep telling him, like, can we just volley for a little guys
Eric Von Frohlich (39:32)
Exactly.
great. Well yeah, you certainly have great attitude dealing with this challenge. thing I I often say is as much as Parkinson's takes away from you, gives and and resilience and it teaches you a lot of personality skills that you can only develop through adversity.
Rob Warner (39:53)
Yep.
Eric Von Frohlich (39:56)
And I've never I never admired people with an easy life they usually are boring and don't have very good character. give me some people some adversity or deal with adversity on a daily basis and they're usually much more interesting and rounded people.
Rob Warner (39:56)
Exactly.
was why World Parkinson's Congress heard about that much?
Eric Von Frohlich (40:18)
I
I have. I couldn't go this year because I had a surgery for AFib. I had some heart issues that were challenging and it was the day before world Parkinson's and I was on bed rest for a couple of weeks. So I didn't make it unfortunately.
Rob Warner (40:24)
Okay.
amazing because just say around 4,000 people either have the same issue that you have or people that are understanding of your issues. You know, all stay in the same hotels. They all stay within a four block radius. everybody you see walking down the street has some stutter step
walker being able to talk to people that understand what you're I don't think it's because people with Parkinson's are better, but it's maybe because the people that go to things like those, population want to do something about it, not just give up, so it's...
Eric Von Frohlich (41:14)
Right.
Yeah, it must have felt like a huge
hug from four thousand people.
Rob Warner (41:21)
It was just amazing thing in Barcelona. was just. you have the doctors there and you're learning all the new and things. So that's why I have this. the newest on apco thing. a napco.
an infusion system, kind of like
Diabetic insulin. I'm.
Eric Von Frohlich (41:41)
Yeah.
And
what what's it infusing you and what's how's that supporting you?
Rob Warner (41:46)
So it's, I started a couple weeks ago, so I'm not up to a level yet that really helps much. slowly tightening me up as we go.
Eric Von Frohlich (41:53)
Mm-hmm.
Rob Warner (41:57)
the same class of the drug Requip not the same as
Carbidopa Levodopa.
Eric Von Frohlich (42:07)
Okay, but
it works d ⁓ does it work on different symptoms?
Rob Warner (42:10)
it's a dopamine agonist. what that drug is called. So instead of giving you dopamine, works on the receptors to make them accept more dopamine. wife said I'm walking better already. don't really know, it's too much of a change
Eric Von Frohlich (42:21)
okay.
great.
Rob Warner (42:30)
And I have a little bit more dyskinesia because of it, we get going more more I'll able to take more medicine off.
Eric Von Frohlich (42:38)
And your movement specialist or your neurologist was the one behind this or is something that you discovered at World Congress and to it to them?
Rob Warner (42:48)
So I talked to my neurologist about there's two different types of one that gives Cinemat, the Carbidopa Levodopa through infusion system and this one. And then I decided I wanted to try this for the World Partners of Congress. I went and talked to the people there I actually met with the company and talked to them and talked to a couple of doctors that were there and saw some presentations on it.
Eric Von Frohlich (42:54)
Mm-hmm.
Rob Warner (43:12)
I was gonna, okay, this is I really wanna do. was gonna.
Eric Von Frohlich (43:15)
And so far
you said it's it hasn't been as beneficial as it will be, would you have to titrade up to it?
Rob Warner (43:22)
Right. that was my nurse that was on the phone. She's coming today to... So they actually come to your house And they're the ones that actually up you every week or something. Yeah. Yeah, it should help level out the ups and downs, you know?
Eric Von Frohlich (43:26)
good.
well good luck with that. It's it's exciting news.
Rob Warner (43:41)
You have the off and the on time. And they have dyskinesias. it's supposed to help level that off so you don't have the issues with all the gut issues protein interfering and the blood brain barrier. It's going right into your blood already. it should be good. I'm hopeful.
Eric Von Frohlich (43:41)
great.
Yeah.
That's very exciting. I did you across anything else that you in the near future the conference?
Rob Warner (44:10)
Yeah, there's a lot of work on the you know, the one that they found, the Michael J Fox Foundation found
Eric Von Frohlich (44:15)
Mm-hmm.
Rob Warner (44:19)
they're really trying to look at gene and also at different things really is more than one disease I think with Parkinson's. family of diseases really. So I the biomarkers are really helping with that.
Eric Von Frohlich (44:30)
Uhhuh.
Rob Warner (44:37)
And the really exciting thing is what they're doing stem cells. a company in Japan that have stem cells they seem vast improvement in symptoms and really no negative effects yet.
Eric Von Frohlich (44:51)
Fantastic.
Rob Warner (44:52)
And that is phase two trials so far. So it's very, very helpful with that.
Eric Von Frohlich (45:00)
Excellent. Well, there's a lot to look forward to. It's it's the reason why I think so many people look forward to the World kind of brings everyone together and that information out there in in a timely fashion.
Rob Warner (45:09)
Yeah.
Yeah. So anyone watching this podcast go to the conference. Next one's going be in going to be in not too far. Yeah.
Eric Von Frohlich (45:21)
okay. That's not not too far.
you had a moment to talk to someone who's newly diagnosed, what would you say to them?
Rob Warner (45:31)
I'd say it it's not life-ending. the world is actually something you can actually find some positivity in. through my faith and also my and just like was saying before, my
Eric Von Frohlich (45:33)
Right. There's no getting around that.
Rob Warner (45:50)
to be much more sympathetic of others. been a benefit to them to help me and to see me and there's not any life that you do that's going to make it easier, but you definitely take every trial and keep at it and not give up.
is not an option.
Eric Von Frohlich (46:12)
Well that that's that I agree with. it's gonna be hard whether you exercise or you don't, but if you exercise it's gonna be easier in the symptomology. it's gonna be hard whether you diet and you eat properly or you don't, or if you take your medicine at the right time or you don't. So you might as well do the hard things up front the benefits of as opposed to ⁓ avoiding
Rob Warner (46:22)
and
Yeah.
grateful I was able to be an athlete before I know how hard it is for people that have been sedentary and get the disease and try to get a lot of my friends on bikes. just really hard to make that transition. So.
Eric Von Frohlich (46:52)
Well,
I never thought about it, but you brought up as an option from a balance perspective, which seems to eliminate a lot of the fear of falling, if ⁓ if you're responsible and you ride properly.
Rob Warner (47:01)
Yeah.
Yeah, there's a lot of companies are making trikes. In fact, other team, was three teams, Seattle team, Utah, and one from Chicago. they all went to the Parkinson's Congress. And most of the ones in majority of ours were trikes. tandem trike and about three or four different trikes.
from Chicago. easier with balance and things. I've been very lucky, I actually feel like I don't have any except for like...
Eric Von Frohlich (47:36)
When you're
when you're writing or in general?
Rob Warner (47:38)
When I'm riding, leg issues are still there, like dyskinesia and some of But as far as my balance, in front of you and then I'll get on the bike are like, is he going to be all right? Is he going be fine? And my wife says, watch him take it off it almost says I don't have symptoms on the bike.
Eric Von Frohlich (47:59)
that's a remarkable statement. So I'm surprised you're not living on a bike in your house.
Rob Warner (48:05)
have a trainer and two or three bikes.
Eric Von Frohlich (48:08)
wonderful. very optimistic that you've that you found something that's worked so well for you. And I think that it speaks to the variety of things that can try, whether it's cycling or running. was a gentleman who I spoke with yesterday who a hundred marathons in a hundred days, and his message was
Not that he's such a strong athlete, but he runs for people who think that they can't run. And he, you know, wants to motivate people to to get out and do something. And whether it's pickleball jujitsu or it's any any sort of sort of movement you can surround yourself with community seems to be highly beneficial and and it's something that we can't encourage enough.
Rob Warner (48:49)
Yeah.
Yeah, I think that was kind of our message as we were going through each of the cities and going to Phoenix yes, cycling does help, but anything helps. It's just do something. Get out, run, bike, swim, whatever you can or feel comfortable doing. Boxing, there's jujitsu, rock climbing for pete's sake. There's all kinds of things you can
Just go out and do something. an important thing. Give that heart rate up and do something that you enjoy.
Eric Von Frohlich (49:26)
Well, it sounds like wonderful advice and you know, it's it's coming from someone who's been living with this for years than most of us. And so it has a tremendous amount of weight and value your message and your you know, taking your pain and turning it into purpose powerful for, you know, motivating people. And so
I applaud you for your efforts and for all you've been doing. It's ⁓ and I'm looking forward to hearing the next adventure that you've in.