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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.
TODD VOGT (00:00)
our guest today is Jay Fry's knee. Fry's knee, there you go, that's better.
Friency,
How are you?
Jay Freyensee (00:06)
Thanks
doing good. I'm a little sore from a workout yesterday, so I'm just trying to recover, but good.
TODD VOGT (00:12)
Nice. How are you doing today, Eric?
Eric Von Frohlich (00:14)
great. Same thing, a little sore from a workout, but feeling pretty good.
TODD VOGT (00:20)
Nice, don't know, can't, this is unusual world. I'm not that sore, like I slept in, for whatever reason our dog let us, like, normally my dog gets up at like six in the morning to get food, but I think we kept him up late last night, so he didn't wake up until like eight o'clock in the morning, so I feel like, whatever, fresh, and ready, know, so to go. So, I'm the oddball here, I guess, in that regard, so. Okay.
Eric Von Frohlich (00:42)
Exactly.
So Jay, you want to give us your resume
Jay Freyensee (00:45)
So yeah, I've done a lot of different sports and activities over my life. I basically started when I was a kid in soccer and then went to track and field and cross country in high school. And then in college, I got hooked cycling for cycling national championships for college.
TODD VOGT (01:10)
Where'd you go to college?
Jay Freyensee (01:13)
College at Purdue So big 10 person. actually, yesterday, plugged to who's Purdue's biggest rival. They had little five yesterday, if anybody knows what that race is. If not, go look it up. It's pretty crazy.
TODD VOGT (01:30)
It wait, that's the reason
that's a race from breaking away, right?
Jay Freyensee (01:33)
Yep, that's it.
TODD VOGT (01:35)
That movie's great. That's one of like a top sports movie, you know?
Jay Freyensee (01:38)
Yeah, it is.
Eric Von Frohlich (01:38)
Yeah, one
of my favorites.
TODD VOGT (01:40)
Yeah. Anyways, okay, so you participate, did you participate in the Little Five Other Than when you were in college?
Jay Freyensee (01:42)
And then...
No, because it's for IU, so it's not for Purdue. And then I went from like cycling. I basically got which cycling rankings for road, it's cat five, four, three, two, one, throw. And mountain biking, pro, expert, sport. So I was racing
TODD VOGT (01:48)
Okay.
Gotcha.
Jay Freyensee (02:09)
expert mountain and category two road bike and then I just felt like I plateaued out it wasn't going to get any better so I
Eric Von Frohlich (02:19)
first
Jay Freyensee (02:19)
got into mixed martial arts cross-country skiing and did those for for a number of years and then stopped most of that because of
Parkinson's diagnosis where with my foot so that it's hard for me to cross-country ski and
martial arts I've continued to and I and there's one night where I go to the gym and then another night I just train with a couple I still I'm still
Eric Von Frohlich (02:49)
And you're still doing that?
Jay Freyensee (02:51)
I'm still able to do that. Sometimes I have a bad day and it's a little tough, but for the most part, I've been able to do that constantly two days a week because it just comes from like doctors from OHSU saying that if you can only pick one exercise that would target like everything that Parkinson's might screw you with, you would want kickboxing because it's got the power, it's got the speed, it's got the ingenuity, it's got the coordination all in one like
Five minute session.
TODD VOGT (03:21)
you did some cool stuff back in the day when, you're like Muay Thai fighter, right? Like tell us random trips overseas and whatnot and your fighting experience based off that.
Jay Freyensee (03:30)
Yes, I had one. I wouldn't say official fight, but it was loser buys the beer fight, but I went, um, I wound up getting a sabbatical from work,
years ago and I took it as an opportunity to go live in Thailand. Cause I, uh, so I was going to get four months off of work and I'm like, well, when am I going to get the opportunity to go live in another country again? so.
I went to Thailand, I trained five days a week near the end of that trip there was one guy, he was a Polish dude. He and I wound up being good friends where we could trust each other but we got to the point where we were like, all right, let's do a real fight. It's kind of like how, you know, there's Rocky, at the end of Rocky, Rocky III, Apollo Creed and.
are like in the gym by themselves and like, know, loser by buys beer they're talking trash and all that. That's basically how this fight went. That I was with my friend, we're like talking trash and then like a lot of neighborhood kids came over and just started cheering for us random. We did a real fight. Like we had a kid and ⁓ we went at it and
who ⁓ should I say who won? We decided to both buy beers so I'd say ⁓ we'd call this a tie. Tie right? Ha ha ha ha tie.
TODD VOGT (04:50)
How was it?
I wasn't doing the kickoff.
Eric Von Frohlich (04:54)
Was that all set up for that punchline, Jay?
TODD VOGT (04:57)
Yeah.
Jay Freyensee (04:57)
It
was, it totally stood up to that punchline.
Eric Von Frohlich (04:59)
you
TODD VOGT (05:00)
How was it doing kickboxing like in the homeland of kickboxing? know, it's like going to the
Jay Freyensee (05:06)
⁓ it was fantastic. I I took it as seriousness. Like I did not screw off. Like I was up Thursday, then took Friday off and went Saturday. Basically, I got up at seven, I got training facility at eight, went and did a 5K run, and then stretching, and then you do...
pad work technique work. I that pretty much the whole summer. yeah,
it was just an awesome experience. And they respected me too, because I was one of the only few people, whether I was Thai or white or whatever, I was one of the few people that they'd recognize. was showing up, I was first one in the gym and last one to was just telling somebody else how I got better at my.
kicking that basically at the end practice kicked the bag 10 times and that would be it for the day and then the next day it
Eric Von Frohlich (06:02)
So,
Jay Freyensee (06:02)
was 20 the next day it was 30 the next day it was 40 so I kept adding more and more kicks to the end of the day to where before I could go home I had to kick the bag a hundred times.
TODD VOGT (06:13)
Nice. That's yeah like ⁓ who is it either Steph Curry or Kobe you know whatever they had to do like whatever the number was like however many free throws they did every day you know it's kind like similar to that it sounds like.
Jay Freyensee (06:25)
Yeah, yeah it was. mean, because it was like, again, it was like, I looked at it said,
Eric Von Frohlich (06:30)
So,
Jay Freyensee (06:31)
I want to get my money's worth out of this, so I'm here and I want to make sure I learn as much as I can take full advantage of it.
Eric Von Frohlich (06:39)
How old were you when you were doing this?
Jay Freyensee (06:42)
I I was 38.
TODD VOGT (06:45)
Nice. Well, you said you were a sabbatical from your job. What was your job? And are you still working there?
Eric Von Frohlich (06:50)
So, thank you.
Jay Freyensee (06:51)
My job at the time, I was working for the Intel
I was software engineer and I was working on, I was actually working in their solid state storage department that they've now since sold. where I was working and I don't work for them anymore. That long has passed me. From there I
and went to a couple other jobs. So yeah, that's been a while.
TODD VOGT (07:19)
Okay.
Eric Von Frohlich (07:20)
So Jay, how long after the Thai experience did you end up getting diagnosed?
Jay Freyensee (07:27)
that was a while ago because I kind of look at the dates around COVID remembering like when it got diagnosed and the patterns So it was for me, was training with a bunch of friends for Jiu and things were fine. I didn't see anything going on training was good.
It was literally, was like, soon as society was pulling out of COVID, like finally getting to the point where it was kind and then starting to go back down again. from a friend's house gait felt a little off and I was like, it was a little funny. was that my gait? It seems kind of weird.
I noticed it, but I didn't really think much of it at the time. so for maybe a month or two was going on. then also the end of that, I was also trying to get ready for a trip that my wife and I were going to do in Mexico, which is basically it was over Christmas and we were to get in shape, you know, to just.
getting shaped to get ready for the year. And my foot was cramping. And it would cramp.
be would cramp right on like if I looked at my watch and it cramped, it always cramped seemed like 15 minutes after I started running. And that never failed. So I would, I'd start a run. I would try and run about 15 minutes and then all of start cramping and I'd have to stop for a At the time.
Eric Von Frohlich (08:47)
I'm
Jay Freyensee (08:57)
I could work the cramp out. could just like stop walking for a little bit and stretch it. And I was able work it out. But that was more noticeable because the fact that it was cramping like right, like right as clockwork, it was just cramping kind
of concerned me a little bit. So when I got home, this is January, about a
Eric Von Frohlich (09:14)
So,
Jay Freyensee (09:21)
to four months later, I scheduled an appointment with the And I had also recently had a toe surgery to remove two spurs out of my big toe so
I could get flexibility in my toe again. so the explained to what was going on. He wasn't sure. So he sent get like,
tested like those electrical test charge were like, you know, they take a needle and they just poke you all over the place and then they look at a machine to see like any pain receptors or anything going on. Like can you actually feel tapping that or was it I passed
Eric Von Frohlich (09:52)
So,
Jay Freyensee (09:53)
that test with flying colors. So the guy's I know something's wrong with you, but I don't know what it is.
I went back to the podiatrist and he got the results he looked at and said, all right, we're going to go to a different hospital. We're going to get a second And this second opinion came out Vincent's which was just right down the me. So I scheduled yet another one of electrical stimulus And it turned out that
the person that I wound up going to get the test, he wound up being a new neurologist that the hospital had just hired. So he actually had nothing to do besides do my tests.
week later. saw him again, me through a bunch of tests scheduled. cat scan, basically scan everything. then, we stopped out in the room. He said, you have Parkinson's. It's a classic case no doubt about it that you have Parkinson's
I just stood in the hospital just stunned. I didn't know what to do.
just totally shell shocked.
since then, left the doctor. He was a good doctor. I would recommend anybody if they needed a neurologist, but I wanted to go I didn't want to be a patient that walked in and be like, you know, take some pills, be like, oh, how do you feel? I feel great. Well, let's just do the pills. And that said, I wanted to also
start conversations with doctors trials going on? I wanna fight, I wanna see if there's any other drugs out there that will basically put this under control,
make it better, me, scenario. So I joined an OHSU neurologist there just to start getting plugged into trials.
where I am today. I'm waiting on trials. In the meantime, see my doctor every six months. yeah, at whatever trials are coming down the road see if it makes
Eric Von Frohlich (11:43)
I
Jay Freyensee (11:45)
sense.
TODD VOGT (11:46)
How old were you when you got diagnosed?
Jay Freyensee (11:48)
about 46 or 47 . I'm 49.
Eric Von Frohlich (11:52)
Did you make any changes to your lifestyle once you got the diagnosis or did you feel like you were pretty optimized for with it and keeping it in regression as much as possible?
Jay Freyensee (12:01)
I changed as much as I could. realized the first thing that the doctor that diagnosed had said that you gotta keep exercising. That's the only
so basically, you that was the first bit of advice that I got him saying, hey, keep exercise. After that, I started asking people, looking around, seeing if what I was doing was right. Because I didn't know. I wasn't sure if what I was doing was going to be good enough. And I think one thing that also got frustrated
It's just the limited amount of information I was pulling up. seemed like I remember going to the Michael J. looking for cures, I'm looking for what's down the pipe. I had a hard time finding anything. The only thing that I was finding pretty easily was like Michael J. Fox Parkinson's cookbooks.
That was pretty much all I was finding. And it took me a while before I finally cracked the dam and I found at least real data that something was coming down the pipe that might help all of us. And that was from obscure article the San Diego Union Times. And it was an old article.
Eric Von Frohlich (13:00)
Right.
Jay Freyensee (13:21)
And it was about some in San Diego who had gotten Parkinson's and didn't know what to do with her life. And she wound up developing a knack raising money for nonprofits.
though in the article she said she had no idea how she was doing it and it turned out she wound up being the president of a nonprofit organization was raising money to start up stem cell company that would treat people with Parkinson's
When I read contacted her and say hey, you I just got diagnosed with Parkinson's. I really don't know what to do
the coolest thing was you know, despite the fact she didn't know me, she had Parkinson's for I think a good 10 years already. And she was kind of a big wig raising money basically startups. These are bio startups. She took the time to listen to and I appreciated it. And then she's like, Hey, you know, I don't want to lose you.
figure out some things that you can do to help out that taking care of their social media profile. pretty simple job,
Eric Von Frohlich (14:21)
I'm to it it over
it
Jay Freyensee (14:26)
that nonprofit really appreciated it
TODD VOGT (14:29)
maybe take us through like a typical day as far as your like workout regime and diet. What does a typical day look like for you?
Jay Freyensee (14:34)
you know not nowadays. I don't have a job Have been going after a long-term disability, so if there's if there's nothing for me to do on that front Then how my how my week starts out is you know I'll wake up pretty early in the morning. I'll wake up at
Eric Von Frohlich (14:34)
a little bit of a brief introduction the topic of this and I'm give you a brief introduction topic of book, which is called The History World. It's a title that's been written by a named Robert F. Brown, who wrote
of So, I'm going give you a
Jay Freyensee (14:51)
5.30, quarter six in the morning to go run with my wife.
Eric Von Frohlich (14:55)
going talking of importance importance importance of importance the the the the importance the importance of importance of of of importance of of of of
Jay Freyensee (14:55)
And I will put on two pound ⁓ ankle weights my ankles, around my ankles because I went to go see a neuro when I was struggling with my running. And he told me to put pound ankle weights to try and force my body into getting into more of a better.
Eric Von Frohlich (15:13)
importance of of of of
Jay Freyensee (15:13)
gait cycle. And so I do that and then
I run with my wife. We go minutes, maybe 45, basically however I feel to do have breakfast cooked for then after care of chores, anything related to...
Eric Von Frohlich (15:26)
thank you you here.
Jay Freyensee (15:30)
disability that I might need to take care
So basically the late morning to early afternoon I reserve that errands or volunteer work then in the afternoon start preparing dinner and I'll go meet my wife at the gym for strength training and we'll do that for a good 45 minutes or so maybe an hour and then we'll come home.
Eric Von Frohlich (15:43)
So, we're start with a little bit subject of event. we'll move on to next part of So,
Jay Freyensee (15:52)
Tuesday, I will sleep in because the kickboxing class that I go happens to start in the evening at like 6.30. So I wind up doing stuff like stretching little bit of weight lifting.
agility work like stuff that I've seen Instagram that I thought might then I'll do kickboxing the evening with the gym I start going back on my Monday routine again where I'll go to bed early and wake up by 30 and go for a run I'm a lot of the training is I'm shooting for a
goal is basically to get in shape and have enough power and strength to be able to do something like a could be you know a Spartan DECA which is the 10 where it can be the Spartan Ultra 5k, you know that they around the US that as a goal
I found that that's still one of the few races I can still do. I used to cross country ski and I can't do that anymore for And I don't quite trust my body in just doing ⁓ a road running race. Maybe I could for a 5K, but I don't necessarily trust my body to not start spazzing out after, you if I'm doing a 5K race and after 4K it starts handling that, so.
But I still use that as a goal. That just keeps me going. So if I feel tired or I have space, I'll go and train. So I'll be like, oh, I got this race coming up.
Eric Von Frohlich (17:23)
when you do your races, do you actually put the ankle weights back on?
TODD VOGT (17:28)
I was wondering that too about the anchor weights. Do you pop those things off at any time?
Jay Freyensee (17:32)
Someday I'm gonna do that. I'm gonna show up at a race. I'm gonna have the ankle weights on. It's just gonna be the biggest scene. So I'll do that someday. I've thought about that. Maybe that's a way to get through the 5K at 100%. Is to actually do the ankle weights the whole time. So I bet it's a good idea. I might do that sometime.
Eric Von Frohlich (17:54)
Excellent, glad to inspire you.
Jay Freyensee (17:56)
Ha
TODD VOGT (17:58)
Yeah, actually, I want to mention one thing. Before I got formally diagnosed, I used to run a lot. That was like my main form of cross training for rowing. One thing that I noticed, this is like two years before I got formally diagnosed, is I was out running. Just like you said, the same thing. was like 25 minutes on the dot. I could run perfectly fine for 25 minutes. Boom, 25 minutes, regardless of like terrain, weather. Boom, I'd start having this like dystonia in my left foot, basically. It's like cramping in my left foot.
20th then it would go, you know, I'd stop for a second and it I could run for like five more minutes and boom, it would just happen every five minutes like like, like metronomic, know, metronomic. So it's kind of interesting.
Jay Freyensee (18:35)
Yeah.
TODD VOGT (18:36)
thing I wanted to mention was ask you as far as, because I think it's relevant to the people in the Young Onset community, know? Because when you get diagnosed, it's one thing to get diagnosed, it sucks no matter what to get diagnosed, whether you're 70 or 35, but I think a different ball of wax, I guess you would say, to get diagnosed with Parkinson's when you're 42. how long were you able to work until you...
go when you first got diagnosed?
Jay Freyensee (19:00)
So when I got diagnosed, I told my manager and
pretty much the next Basically, we didn't have an HR department I was working for startup company so the Boston the were so I was able to about another years
before I started noticing other issues that I was having. was getting worse. If you're a software engineer, if you can't type fast, might wind up being a little shorter than you so I was getting to the point where it was literally right now I'm trying to spread my fingers and I'm having like
like this. This is no issue. This is no issue. can spread them all.
that's as far as I can go. And so not to have full function of your fingers is a huge detriment I noticing that was getting a little worse. was also noticing
My getting and faster. They would change their much at will. I could cold room in my house hands could be on fire or vice versa. It could be a nice sunny day. I could be walking around the house and my hands would get cold.
And that's something I took to my neurologist. explained what it was and he's just like, yeah, that's something that really can't be treated. he's like, he kind of stuck with that for the most part.
little things more and more that was just making it harder and harder for me to work.
one to switch seats to try and work. Another one was I had a mouse. I used my thumbs. it's called Roller Mouse, sorry, Roller Mouse. And it uses your basically move the mouse across the screen.
I found it far superior than a normal mouse because I could get my back muscles. I could basically get all of my big muscles involved in moving the mouse instead of actually having a mouse and utilizing this muscle. I could actually use my whole back and my thumbs and my whole hand to use it. delayed it little bit, I'd say about after...
two-ish years breaking it to my company. was pretty much looking at graceful exit to basically try and
get long-term benefits, work out any compensation that needed to be worked out, et cetera, et cetera. to this day, I don't have a job.
I do have disability through a third party ⁓ my company paid for. Then I'm also going through federal social security disability to try and get that going. Because the goal for that one would be to get without basically medical insurance without needing to be going through somebody's
having the need to go to a company and have your medical coverage tied to that company. So that's what I'm going through now is just trying and it's just been a long process. this has been going on for two years at least. And I feel like this is, I've done some cool things in my two years, but I feel like this is the only thing I've been doing for two years.
I just the other day I talked to somebody that you know they had their own little health issue and I told them that and I was surprised they said the same thing they just said yeah after X amount of years it just felt like this is all I was doing was getting disability and satisfying the insurance policy and trying to get
the federal government to get off their asses and give me disability and get me going on Medicare, et cetera, et cetera. So it's been a laborious process. So I usually need, on average 30 minutes a day just to address any of the disability, federal government, whatever stuff. If I were to stick it together, it'd be like.
Six months of work, but like, yeah, one task every day for it seems like it's been going on for two years.
Eric Von Frohlich (23:29)
Well, it's intense
TODD VOGT (23:31)
Yeah, that's a bummer. mean, I think that, when I think it speaks to the challenge, like this is kind of where I was going, it like speaks to the challenge that people within the young onset community, the things they have to deal with, like, know, 42 is like, whatever, 42, that's typically like for most people, like the prime of their working years, you know, so.
Jay Freyensee (23:31)
Yeah.
It's been really tough too. Like I was just talking to somebody the other day and I gave him a hypothetical. I said, this is how I feel that I feel like say there's a stem cell solution that if I got a shot of dopamine in my I could say the very next day it started working, I
TODD VOGT (23:49)
Yeah, it's unfortunate.
Jay Freyensee (24:08)
felt like within two years could probably start doing my job again. But there's a lot of like, know, ifs and buts but it's because we don't know how, say, the stem cells are really going to work and fix everything in your head. how fast it's going to take. Maybe it takes couple of months, but it could also take a year. know how that's going to go. So it's like...
I feel there would be an opening for me to come back to work if on the best case scenario, but there's probably not gonna be a best case scenario. probably be a, scientists say on average 62 % of all stem cell.
surgeries are going to go well for people with Parkinson's Probably not going to happen. It's probably going to be like for people maybe 15 % or the next one might be 61 % the next one might be 41. It's like we don't know exactly What that data is even though we we have we're a little confident that It could work. It probably will work. We just don't know when it's going to kick in and when you'll start doing it. So that's like
I guess I don't know where I'm going with this, maybe it's just a feeling I've just had of that I do miss the industry. There's a lot of cool ideas and I just, I don't trust my body to do the right thing if I were to try and jump in and jump in once again and do a software engineering task unless I had some type of treatment
that scientists knew for the most part was probably going to work and get you back on a of health functioning order.
Eric Von Frohlich (25:44)
Yeah, it'd be nice if they would make us superhuman.
Jay Freyensee (25:47)
Yeah.
Eric Von Frohlich (25:48)
You know, if we got a treatment and all of a sudden we can transport or teleport or, you know, have some kind of superpower to offset the suckiness of Parkinson's.
TODD VOGT (25:59)
Yeah, I right? That's what they do in the comic books. You know, they give you an injection and suddenly, you know, you're climbing walls, you know, so hey.
Eric Von Frohlich (26:05)
Exactly, maybe Jay needs to be bitten by a spider, radioactive spider or something.
Jay Freyensee (26:05)
the time that
TODD VOGT (26:09)
Yeah.
Jay Freyensee (26:12)
And that's actually a theory I want to test because like Correct me if I'm wrong because I'm not about a Biomedical guy, but I swear to God I thought I heard a Statement saying that the average human body only has about 450,000 dopamine cells so in some of these stem cell theories that are looking to come out say it is 450,000 dopamine cells you had
These solutions are coming in with like seven dopamine cells. So picture that being shot into you and then all of sudden, yeah, the hulk muscle
TODD VOGT (26:50)
I've been looking some of this information up recently. There's approximately 65 billion neurons in your brain. So by the time like give or take 5 billion or so, that's the plus or minus 5 billion. by the time like with neurodegenerative diseases like Alzheimer's, for example, the progression, the building up a plaque takes starts like 20 up to 20 years beforehand. So
Jay Freyensee (26:56)
Okay.
TODD VOGT (27:12)
I'm sure there's, don't know what the progression has been looked at in Parkinson's, but I'm sure there's a similar sort of profile in that there's a level of neurodegeneration that takes place, obviously like we know from personal experience that our symptoms like gradually increase. So probably over a span of five, 10 years, like there's a degeneration going on. So I think by the time you actually get disease, you probably, I don't remember the exact number, but some number of billion cells have already been lost. So I was actually thinking about this. So.
Jay Freyensee (27:28)
So I think by the time you actually get disease, you probably.
TODD VOGT (27:37)
with the context of the stem cells is that if you inject, 10 million cells, like at first I was thinking to myself, my God, that could make a huge impact. But then I thought to myself, in the context of the overall capacity of your brain that has approximately 60 to 65 billion neurons, it's just a drop in the bucket, relatively speaking.
Jay Freyensee (27:45)
Yeah.
But like what about like actual dopamine cells so you have 65 billion connection
TODD VOGT (28:02)
Well, that's a good question. Yeah, I don't
know. mean, you have to look in, I don't know, let's say what's the size of the substantial nigra, like 1 % of the, you know, let's say 10 % maybe of the brain, 5%. If it's 10%, that's like approximately 7 billion, you know, six, 7 billion cells. If it's 1%, that's like 500 million cells or so. So, I don't know, the thing that impressed me, I looked this up, is like just the sheer capacity of the brain. And the other thing that blew my mind, sorry, I'm going off on a random tangent here.
Jay Freyensee (28:30)
No.
Eric Von Frohlich (28:30)
.
TODD VOGT (28:30)
Yes, there's 65 billion cells, but each cell has approximately anywhere from like one to a thousand synapses. there's like four quadrillion interconnections in the brain. That's wild number. These are numbers that are staggering to sort of comprehend. But anyway, not to get lost in the idea, there's like approximately 60 billion brain cells in there. I don't know how many are dopamine ones. Maybe a billion, maybe 500 million or so. So
yeah, that's a good question though.
Jay Freyensee (28:57)
Yeah, I'll have to look it up because I thought that the actual dopamine cell count was actually surprisingly low for a human body. It was a little, yeah. Because then I started thinking about, like I was talking to a neuro-PT guy that I know and I said, you know, I feel that even if this stem cells go wildly popular, like they're wildly successful,
TODD VOGT (29:06)
It could be.
Jay Freyensee (29:26)
I think you're still gonna have to train the human brain on some of these connections again, because you think about it like in new dopamine cells into the human body. They haven't been programmed to do anything. just like, stick dopamine cells in the pudimid in your brain. So seven million that's going in there. So I figured that...
once that happens, then it's like the PT's responsibility to start coming up with like new ways to treat people, basically to reprogram the new dopamine cells that were just put in your head. I don't know, this is probably where I'm starting to go like, my brain's starting to like come up with all these like scenarios or whatever, but it was just like, know, Buddhism, you're...
Eric Von Frohlich (30:13)
Radioactive spider radioactive spider.
We gotta keep it simple
TODD VOGT (30:18)
Yeah, exactly.
Jay Freyensee (30:18)
Yeah,
it could be, yeah, just a radioactive spider.
Eric Von Frohlich (30:23)
Yeah, there's got to be a compensation. mean, I'm all for for the downsides of Parkinson's and I'm starting to get a pretty decent understanding of them. But the upsides are, you know, I met some remarkable people that shaped me and grown me in ways, made me a better person in a lot of ways. I'm just wondering what what the other upsides are going to be to, you know, compensate for the loss of all the things that we that we deal
on a day to day basis because, you know, it seems like the universe works by compensation. And so there's got to be more upsides in what we're seeing. So I don't know if you guys have any thoughts on that, but.
TODD VOGT (31:04)
that yeah I was gonna say it depends on the day and how I'm feeling I suppose you know how generous I am you know I'm like well maybe this is you know maybe I have learned to be more open-minded or you know more appreciative for what I have but some days I'm you know some days you're just like frustrated and pissed off you know
Eric Von Frohlich (31:22)
Have you guys
found that you are more present or you live in the now or appreciate the moments a little bit more than what you used to?
TODD VOGT (31:24)
Yeah.
Yeah.
I'd say so. What do you think, Tre?
Jay Freyensee (31:34)
⁓ I definitely appreciate the time more, I do feel that at least with my sabbatical background from Thailand, like starting to learn in the now and being present, I had already kind of started picking that up and working that up on my trips around the world, which is something I enjoy about going on trips, like picking up the culture and seeing what things.
Makes sense that that I could use for my life
Eric Von Frohlich (32:03)
Anything that jumps out at you that was particularly helpful with your diagnosis or with the symptoms.
Jay Freyensee (32:10)
I do think there's a breathing app that I found that locks me in pretty good. do find that if do my breathing, and it only has to be about five, 10 minutes a day, I do feel a little more and healed by it.
when I was in I had kind of developed the breathing and the meditation and then I just kind of forgot it. And I think, Parkinson's coming back has definitely steered me back into meditation and deep breathing stuff that I used to do that, but I was no longer doing so.
That's one thing that Parkinson's has done that's been good. It's kind of steered me back to this, to this that everybody knows is beneficial. It's just sometimes society doesn't let you actually get to do it because of hectic schedules or something.
Eric Von Frohlich (33:09)
Right, it seems like it's in my category of like stackable wins. Like it's a must do in the morning if I'm expecting to have a good day or rough day. I need to make sure I get my breath work in.
Jay Freyensee (33:14)
Yeah.
Eric Von Frohlich (33:23)
And even that I'm thinking how much better would it be if I was doing it, you know, 10 minutes on the hour every hour, you know, just to recenter myself and, know, like you have an tells you to get out of your chair if you're sitting too long. It's, you know, I kind of feel like we need the same reminder for our breath work.
Jay Freyensee (33:24)
Yeah.
TODD VOGT (33:42)
Along the same lines, do you adhere to any special diet or anything, Jay, that you find you're feeling, or helps you deal with symptoms or anything like that?
Jay Freyensee (33:50)
I've always had a pretty good diet. ⁓ That said, I still tweak it. It's like everything else. look at yourself and you look at your routines and you can see, how do I tweak it to make yourself better? I that's kind of what an athlete does a lot of times. Tom Brady every year, I'm sure he was tweaking something that helped him make him become the football player ever.
One thing that I've actually been doing very recently I read an article on Moroccan oil, olive oil, and I don't have it memory in my head. I just remember reading it that it has more of a chemical that's good for your brain than any other olive oil that you could possibly use. So I've been...
taking one tablespoon of Moroccan oil and just slurping it down my throat. Been doing that daily. That's something I've just added. My wife gave me an article that I read honey saying that honey is another thing that can get, that's very good for your brain as well. And there was kind of a caveat about using honey that.
You don't wanna use like a metal spoon when you're serving the honey because it can actually have an allergic reaction. The honey and the silver spoon, metal spoon can have a reaction to one another and then making the honey that's on the spoon not really beneficial for you because it's mutated already to where it isn't as good for the brain as it would have been.
Eric Von Frohlich (35:12)
Okay.
Jay Freyensee (35:26)
So those are two things recently I've tweaked. Another one I've been looking at is cutting down milk, which
I'd already been, I never really drank a lot of milk to begin with. I forget the doctor, but she's up at Seattle. She's done 20 years worth of research on Parkinson's and her data all suggests that
dairy products are not good for Parkinson's. So as a result, I pick and choose which things I'll have for dairy. if I want vanilla shake and I haven't had anything dairy in two weeks, I'm gonna have a vanilla shake. But if I've had, yeah, exactly, but if I weeks of eating cheese, then I probably need to back off for a while.
Eric Von Frohlich (36:06)
Right. You got to a little.
And is that related to the inflammation response to dairy or is it something?
Jay Freyensee (36:21)
I believe so.
Yeah. So yeah, I'll have to send it to you actual chemical name of the, that's supposed to make Moroccan olive oil so much better and so much superior Greek oil or Spanish oil. I'll have to send that to you. But the key on that is that Moroccan oil is supposed to be the best because it struggles the hardest because of the...
the environment of Moroccan oil is just so tough to grow and foster.
Eric Von Frohlich (36:52)
Interesting. Yeah, that would be great to send that along we can share it with everyone. a you guys. I know you're both excited by trials. Are there any trials that are kind of on your radar that you're hopeful for that you may qualify for?
Jay Freyensee (36:56)
Mm-hmm.
TODD VOGT (37:08)
the what's called the Padover or the Pasadena is going into phase 3 as well. That's the antibody against the alpha-synuclein protein. They did a phase 2 trial for this a couple years ago. It didn't meet the primary endpoint but it met the secondary endpoint. So they're continuing on to the third stage 3, the phase 3, excuse me, the phase 3, I just looked this up a couple days ago, the phase 3 is scheduled to end, I want to say it's like 2028 or 2029.
Jay Freyensee (37:15)
Hmm.
TODD VOGT (37:34)
You know, so that antibody essentially clears the brain of alpha-synuclein clumps. So that could be real promising. I obviously, like, say it takes, what, would say it's, study finishes in 28, it takes approximately a year to process the results, and maybe, I mean, you could have a product, if it goes well, then it'd have to get FDA approval. That could be potentially on the market 2030 or 2031 or 32.
that attacks the underlying disease pathology
Jay Freyensee (38:03)
⁓ the one that I've been really looking at it is the, again, the Aspen Neuroscience, ⁓ the startup company for that, the one that's been working with stem cells to come up with a solution to fix your dopamine cells and to have a treatment for Parkinson's. It should be, the phase two results should be done.
Sometime this year. I think they're probably gonna announce something at the Parkinson's conference. Yeah, I think they will and I think they're gonna have it. I think their phase three might Maybe roughly a year from now It's coming up pretty soon. It's gonna be here and that's the one I'm looking at because if you go and look at other cell treatments that kind
Eric Von Frohlich (38:30)
World Conference.
Jay Freyensee (38:48)
it seems like more companies are going the way that Aspen Neuroscience is going. Like for example, so Aspen Neuroscience is kind of based on the Nobel Prize winner of 2012, a Japanese scientist, and he is starting a startup in Japan based upon his research.
Eric Von Frohlich (38:56)
Thank
Jay Freyensee (39:09)
Aspen Neuroscience, their solution is based upon his research. And then there's another company, I think it was called Orion, but they're a neurosurgeon center out in the East Coast, think Massachusetts,
their solution for Parkinson's is similar to the Japanese Nobel Prize winners work for 2012. So it seems like, at least from what I've seen, it seems like there's more kind of, and the solution they've been using is called like pluripotent, I believe, pluripotent cells. So I'm interested to see if more companies are gonna grow from the ones that I've just highlighted and.
and see what happens. I at the end, I don't really care which technology is used as long as it works. This is the end of the day.
Eric Von Frohlich (40:03)
Right.
TODD VOGT (40:06)
Yeah, so you're saying that one's phase two, so all right, they finish up at phase two in a year. Phase three takes two years or so, two, three years, right, then another year. So that's maybe five years they have FDA approval, so we're talking maybe five years from now at best, hopefully. So.
Jay Freyensee (40:22)
Maybe,
maybe a little sooner than that, but yeah.
also interested a bit ⁓ on. There's another company called Blue Rock. They have their own solution and how it's not a pluripotent solution. They have their own solution on how to handle stem cells, so it'll be interested to see. And I think they're ahead of everybody else in terms of coming up with a stem cell solution for Parkinson's, so.
Eric Von Frohlich (40:30)
Thank
Mm-hmm.
Jay Freyensee (40:50)
Yeah.
TODD VOGT (40:48)
that's called expedite that their clinical
trial their phase three trial. That's a phase three trial that's supposed to start later this year.
Jay Freyensee (40:55)
Yeah, so it'll be interesting to see how that's gonna go.
Eric Von Frohlich (40:59)
Well, it looks like we have a couple of things to get motivated I saw my neurologist a couple of days ago and it was kind of a hodgepodge of different things that we were addressing, but he mentioned that there was a trial that he thinks may be interesting in the coming up in the in the fall. So I'll get more details on it in my next meeting and see if it's something that, you know, it's beneficial for you guys and you can keep your eyes out for it. But
TODD VOGT (40:59)
Okay.
Jay Freyensee (41:26)
Yeah.
Eric Von Frohlich (41:28)
that jumps out at you that you would share with someone who got recently been beneficial to you.
Jay Freyensee (41:35)
I would say they need to, the first thing they need to do is they need to get tested for variance. That's the first thing. They need to understand what version of Parkinson's they have. could be you have a Parkinson's and it's an environmental, which means that they don't know how you got it. They just know you have Parkinson's. Or it could be a variance, which,
Eric Von Frohlich (41:56)
Great.
Jay Freyensee (41:59)
which they're basically saying that it's very possible that the variant is what caused you to have Parkinson's, so if we treat the variant, then we treat you and your Parkinson's is under That's basically the result you're gonna get out of the
You need to know that result because of new trials coming down the pipeline. You will never know you fit one of those trials without getting tested for the variant. So I strongly suggest anybody that's new to go out and get tested. And then the second suggestion is,
Don't quit the exercise if you get diagnosed. I know it can be shocking when you get diagnosed and you do feel like the world's coming to an end. And ⁓ you can't let the disease affect you that way. gotta figure out how to...
build the inner strength to get to the gym and train. As soon as you're diagnosed, if you get diagnosed on a Thursday, go to the gym Friday. ⁓ And that's basically how I handled my situation. It was very similar. I wound up meeting a guy in martial arts and he basically just said, he was the first guy that I told in my gym and he just basically said,
If you need a shoulder to cry on, let me know. I'm here for you. And there was times where I did that, that I took him up on the offer. it'd just be him and I in the locker for like 10 minutes and I would cry on his arm. And then after 10 minutes, it was all out. And then I would go train kickboxing.
Eric Von Frohlich (43:46)
Yeah, the importance of sharing it with your community. I find that lots of people when they get blindsided with the diagnosis, their immediate reaction is, I'm going to sit on this information and try to lone wolf it or try just trying to wrestle with.
I guess the plausibility that maybe the diagnosis is wrong. And so if they don't say it out loud, in a way are trying to, you know, make believe like it's not real. But one of those things that I find that the worst thing you can do is not have people to share it with and to lean on and find that emotional support, whether it's your martial arts community, your pickleball community, your church.
your neighborhood, you you need some people to to kind of share this with. Otherwise, no agency in how you're going to take control of it.
So good job someone that can kick your ass as well as comfort you.
Jay Freyensee (44:44)
Yeah.
Eric Von Frohlich (44:46)
Do you guys feel like Parkinson's attacked your identity or your confidence or your independence, if it's one or the other or kind of everything?
TODD VOGT (44:57)
I'd say probably yes to everything. mean, speaking honestly, yeah. It's certainly a mess with your identity, especially as an athlete, right? If you identify with being a good cyclist or a good mountain climber or a good whatever, and you're no longer able to do that or do that very well, that's certainly speaking from personal experience.
Eric Von Frohlich (45:18)
Yeah, I kind of feel like athletes go through that anyway, because you eventually can't row the same times that you were rowing when you were in your 20s. So there's a natural progression that happens. But it seems like Parkinson's certainly accelerated a hell of a lot quicker.
Jay Freyensee (45:18)
Yeah.
TODD VOGT (45:27)
you
Jay Freyensee (45:34)
Yeah, and that's one thing I've noticed. ⁓ I've done three, no, two Spartan decas and I've noticed my times been a little lower and I think that's just due to body.
Eric Von Frohlich (45:48)
Yeah, but you're still doing the races, which is amazing.
Jay Freyensee (45:53)
Yeah, I look at it like my goal is I want to make one person feel bad and they feel bad.
Eric Von Frohlich (46:00)
So as long
TODD VOGT (46:01)
without yourself,
Eric Von Frohlich (46:02)
as you're not the last person to come in,
you're doing something right.
Jay Freyensee (46:06)
Exactly right. Yeah, don't don't be last place and then if you have last place have fun with it be like, ⁓ I tried you know, but Yeah, come come and make that person and I like put it in the words make that person feel bad
Eric Von Frohlich (46:18)
Exactly, we know what your motivation is.
Jay Freyensee (46:21)
Hahaha
Eric Von Frohlich (46:23)
That's pretty good. Well, if you guys found if you were going to fill in the blank, has Parkinson's taught you anything about your strength, about your own internal fortitude, or have you been surprised by it? And has that changed as a result of you guys being or all of us being diagnosed?
Is there a question in there?
TODD VOGT (46:46)
Not sure. ⁓ I do want to come back to what you said before that. I definitely want to think that I definitely have taken away from Parkinson's on a very real level. It gives you an appreciation of living in the now. you know, this is how I phrase it, like, know your body is going to be deteriorating due to the nature of the disease. So it's like.
it gives you an appreciation that like today is the best I'm going to feel because tomorrow, you know, it's going to start declining, whether a lot or a little, depending whether it's tomorrow or down the line. it you, definitely reinforces that you're like today, this day is my best day, so to speak.
Jay Freyensee (47:24)
Well, it's right there.
Eric Von Frohlich (47:24)
Yeah, I agree
with that sounding too morbid. I agree.
Jay Freyensee (47:28)
Well, it's like that Russian saying that they say, have a good left hand and a great left hand.
Eric Von Frohlich (47:36)
Right.
Yeah, there's lots of sayings I've been leaning on that, you know, direction is more important than speed. You know, action dispels fear. You know, there's the the old Stoics, which are great. know, Marcus Aurelius talking about that which obstructs the way defines the way and advances action. You know, the obstacles, the is the thing that makes us redefine how we move through life.
because it's blocking us from achieving the things we want to achieve. So we have to find a way around it. So we're still living our lives, but we have this obstacle called Parkinson's that makes it a little more difficult, but consequently probably has some upsides to it also. so living in the now is definitely one of things. The more you can do it, the more you appreciate
the ability to zero in on what you're doing and really appreciate the clarity that that provides. be other upsides to this. I'm just confident that haven't explored it enough.
We'll see.
Jay Freyensee (48:47)
I'd try to the other thing go find a support group if it if at all else because I would say you know one thing for me that was definitely beneficial Parkinson's nonprofit organizations in Portland found Todd for me when ⁓
When I, it was basically, you I got diagnosed and I'm talking to the pro, which is what, Portland. What's pro? Parkinson's. Thank you. Resources. Yeah, so I had to ask them, said, hey, do you know anybody that's an athlete? Because like all these people that I'm seeing right now, we we're in different stages of our life. ⁓ I don't relate to what they're doing.
TODD VOGT (49:14)
Parkinson's I want to say? Yeah.
Jay Freyensee (49:34)
I need somebody that I can relate to and they did some googling and they found Todd on the internet. He's local star on the internet. And I contacted him and we got together and he took me to the Grant Foundation. We met our liaison Amy there and it's really helped me, especially on days where...
Eric Von Frohlich (49:43)
Yeah.
Jay Freyensee (49:57)
I feel like I just need to like, even if I just don't even talk and I just kind of listen to people, helped. So that's been a big help.
TODD VOGT (50:06)
Yeah, they have a monthly Young Onset Meetup group. We just meet at a bar, like the first Monday of the month. It's great, it's like anywhere from 10 to 25 people show up depending on the time. Yeah, some people have been there for a while, and it's always interesting to see, every so often somebody will come in and who just got diagnosed and they sort of have that deer in the headlight looks like, what am I gonna do now? I'm getting engaged in six months, I've just started a job.
Eric Von Frohlich (50:11)
Okay.
TODD VOGT (50:32)
and they're kind of freaking out, you know, because they just have this huge weight put upon them, you know.
Jay Freyensee (50:37)
Yeah.
Eric Von Frohlich (50:38)
it's a lot to digest when you first going through it and then you live with it for a little bit and you have those days where you realize you can deal with it and you'll be strong enough to get through it. And then you have those other days where you don't get your mindset quite as dialed in or your gratitude is dialed in as you need to or your breath work. And ⁓ those days seem like, know, the minutes are long and the hours are longer. ⁓
Jay Freyensee (51:02)
Yeah.
Eric Von Frohlich (51:04)
But I'm thankful for you guys and appreciate everything you're doing and the way you're approaching mindset of how to move forward with this diagnosis is admirable. So thank you for for doing everything you guys are doing. And, you know, there'll be lots. Unfortunately, there'll be lots of other people after I said will be diagnosed that will need some words of wisdom.
and ⁓ some experience to kind of help guide them as well. So thanks guys.
TODD VOGT (51:34)
You too, man. Thank you, Jerry. Thank you, as should do a race or something together.
Jay Freyensee (51:35)
Thanks Eric, anytime.
Eric Von Frohlich (51:38)
I'll come up to Portland as soon as I get my AFib done and I bounce back a little bit and get a little conditioning. I'm not gonna blow with the doors. I mean, I'm gonna do it primarily so Jay's not the last guy to finish because he'll definitely be slower than Jay. And Todd, you're in another league, so I can't, you know.
TODD VOGT (51:42)
All right.
Jay Freyensee (51:59)
Yeah.
TODD VOGT (51:59)
about that anymore.
Yeah, we'll see.
Eric Von Frohlich (52:02)
we'll see. I would love to get up there and do a race with you guys and go to Brian Grant with you and, you know, kind of see what's going on in that different part of the world. So thanks for the invite.
Jay Freyensee (52:12)
Yeah,
I'm sure that there'll be another DECA race in about July. I'm just still know what weekend. I'm sure it's gonna be, they had one in July last year, so I figured they'll do it again this year.
Eric Von Frohlich (52:25)
All right, well, maybe I can bounce back quick enough that will give me some good motivation to get back in the training cycle.
Jay Freyensee (52:34)
If not, you got a lot of real Spartan races down there are all awesome and you have your pick of which one you want to do.
Eric Von Frohlich (52:42)
Well, do is one thing, finish is another. So we'll see. But thanks again for the support, guys. I appreciate you all. And we'll circle back on the next time we have something to update. All right, guys. Thank you. Have a great day.
Jay Freyensee (52:45)
Ha
TODD VOGT (52:56)
All right, sounds good.
Jay Freyensee (52:58)
Thanks Eric. Anytime ⁓ Eric.
TODD VOGT (53:00)
See you
soon.