Hi, welcome to Parkinson’s, Parkinson’s, and perseverance. Hi, everyone. My name is Daniel. It is coming up on a year since I was diagnosed with early onset Parkinson’s disease. And this podcast is about a man me that is attempting to come to terms with a diagnosis of Parkinson’s and turning the mental terrain around. Hopefully this is a show that helps answer some of your questions. And the overall question that I face that I have to answer is what am I going to do about it? Am I going to stay secluded, isolated and just wait for this disease to take control or do I go on the offense facing this disease head on but through this confusion, Then through this chaos, I am joined by my brother Brian, who is with me now, Brian. Greetings, Hackman, I’m bringing in the confusion and chaos.
I’m bringing it today, man. I’ve just completed my first week of school. So I’m bringing that confusion and chaos to the show today. Well, I certainly appreciate still willing to join your brother on this show. Well, it’s good, honestly to shift my focus and talk with you and be on the podcast. So thanks for having me. But enough about me. A lot of people are wanting to know how my brother is doing with his Parkinson’s journey. So Daniel felson on what’s going on in your world?
I have to be honest and say it has been a rough time, a lot of stress and fear recently, within the past several weeks I’ve noticed I can’t help but notice but there is pain shooting through my left eye My right hand to wear is like ice shooting through my veins is so painful that has caused the coordination in my hands to pretty much give out. It’s been disabling and is starting to spread through my legs. What’s concerning is the context I have and my neurologists, they said that they haven’t really heard anyone with these symptoms and it being related to Parkinson’s. I’ve already had carpal tunnel surgery on on both my hands by different surgeons. Again, I’m still waiting for the appointment with the movement disorder specialist. That’s still a few months away. It’s It’s scary. It’s been really rough. Yes, especially since at least to me as an outsider. I don’t usually associate pain short pain symptoms with Parkinson’s. So I guess that is unusual, is incredibly difficult to focus on anything with the internet. The going through my hands is constant strumming pain. Maybe this will reach someone who has experienced it and can pass along that information.
Is this just certain times of the day or all day? What?
It’s all day.
How’s that affecting your mental health?
Not being able to use my hands has been really taking its toll. It’s been crazy because I’ve been telling myself Geez, if it was only Parkinson’s that I was dealing with, if this is on top of it is going to be very, very, very rough.
No doubt, just the physical pains got to be insane to deal with. I guess the unknown is just kind of gone along with his Parkinson’s journey and just let our listeners know we’re going to talk with someone who was also facing the unknown as many of you who are diagnosed with Parkinson’s disease and began your journey not knowing what was going on. I believe we have our first guest outside our little group here, so I’m pretty excited. Tell us more about this individual.
His name is Ian Rodriguez and Ian reached out to my wife through Facebook and was checking in on me. Ian was diagnosed with Parkinson’s at age 25. He and I are the same age now. He’s had it for 18 years.
Wow. Imagine he has a lot of insights to share for myself and our audience. So let’s get into our conversation with Ian
Ian and I started introducing ourselves
Ian Rodriguez 4:42
I’m real excited to be here and, you know, let my voice be heard. And yeah, talk about my testimony with Parkinson’s disease seen as warm and inviting, and set your mind at ease. It’s very rare to be diagnosed at age 25 but I recall seeing my first tremor at age at age 10
Start us from the beginning, when you first noticed that there was something different.
Ian Rodriguez 5:12
You know, I worked 15 years for Pizza Hut. I was a restaurant General Manager and I started I don’t know, it’s feeling kind of awkward, you know, every single time the pizzas came out of the oven, I would grab the pliers to get the pizza out of the out of the oven and I would like boom, drop and what the heck happened, boom, and I kind of knows a pattern. And yeah, so I went to go see my primary care first and I said, Well, you know, this is going on and he started looking at me so you know what? neurology is not my department. Why don’t we go ahead and get an opinion from a neurologist and see what he thinks but to me it looks like signs of Parkinson’s. So when I first saw the first neurologist there I went in there and you know if he did his thing is and with the hand and had me walked, he came, you know, he came to conclusion that it was Parkinson’s disease and we went to get a second opinion, you know what the heck doesn’t hurt, right? So yeah, I went to Parkinson’s Institute out there. It’s in Sunnyvale, California. And so I saw a movement disorder specialist. He also went a little bit further testing and says, Yeah, he says, you know, it’s, it is Parkinson’s and like, holy, wow, okay. At that moment, when you’re told Parkinson’s disease, you know, so many things come to your mind, you know, a lot of how good it is, you know, I was telling them, well, could have been because my dad was an alcoholic. So no, that has nothing to do then. I was also thinking too, because my mom, you know, when she was a young age, kid, you know, she went through some traumatic stuff associated take some, you know, some heavy medications, and I said, Well, could they be better? No, that’s not it either. Um, they’re sitting and I’m thinking Parkinson’s, Parkinson’s. The first thing Daniel that came to my mind is this. You know, some Catholic the first person that popped into my mind was john Pope the second and I’m like, Holy guacamole. I’m gonna pop them like, oh, wait a minute, you’re telling me that I have a disease for older Thai folks. He’s Oh, yeah, I’m like, Well, you know, once again, how can that be? And back then now my wife, you know, we’re sitting there, and we’re thinking and I recall, you know, we both broke down in tears and like, what’s gonna happen to me? I have very, very, very little knowledge about Parkinson’s. The only thing I knew about Parkinson’s back then is this tremors. That’s all I that’s all. I all I knew. Back then in 2002. I felt really, really alone in this journey. Um, I didn’t have any chats or any communication with anybody else that had Parkinson’s, not even Facebook was up back in the days and so I felt kind of a little bit isolated. As we were talking, he was not given much information and simply the information that was out there wasn’t at its depth that it is now. So Ian, earlier you were referring to today. thousand and eight 2008 oh boy 2008 lots of things lots of lots of happy happy moments happened in 2008 and then lots of sad moments you know I took a vacation to witness the birth of my first child being born and so yeah came back the following week all motivated ready to take on the world had the ideas that I’m going to be doing this because now I have a baby newborn baby and I need an extra bonuses that I can capture wherever I can. Pizza Hut ended up firing me and so I ended up applying for my unemployment benefits. And then they decided to take me to appeal my unemployment benefits and so that’s when the twists will turn to bed because they ended up you know, making sure that i dot their i’s and cross their T’s on me had I did have had better information I would have probably got an attorney and sue the heck out of them. later on. I found out that the truth is they were really concerned about my Parkinson’s so from that point on, you know, knowing oh snap, I’m not getting any unemployment benefits. How am I going to do this? Everthing as far as depression, stress, I just broke.
In 2008, this is the peak of the Great Recession. What are the chances of getting another job?
Ian Rodriguez 9:10
What good does it do that I had a good resume 15 years of excellence of restaurants or general manager, but if I showed him with the interview, I would be tremoring shaking was gonna give me a job with that on the day I have Parkinson’s.
And that’s the great dilemma. So Ian, what’s the next step?
Ian Rodriguez 9:27
I ended up applying for disability in 2009. Daniel, we went for you know, I started the process, filled out the application. When I went to the SSI office here in town, even the person that was helping me fill out the application, so don’t be surprised you’ll be denied the first time up. That’s exactly what happened. I got the first letter of denial. I read it said that some due to my age, that I’m a young kid, but hey, what am I supposed to do? Even though I had the documentation from the first nuerologist and documentation from the moving disorder specialists that I went to go see in Sunnyvale, and the current neurologist, Dr. That and save now for two years, Dr. Bhatia, you know, he gave me some good documentation. I had all the documentation of the medications that I was taking. What they ended up doing is they ended up sending me to one of their doctors went there. The doctor came in, looked at the paperwork, and he looked at me and did his things. You don’t have Parkinson’s, I’m like, excuse me. You know, you don’t have Parkinson’s as something else you have from there I ended up hiring an attorney that would be able to help me with the case. And so from there, the attorney took over and you know, he reapplied again and because I got told that that’s the process, you know, that you have to be denied twice and then you get to your official hearing. Meanwhile, you know, you have more stress, more depression, and still keeping on back of the mind. Oh my gosh, how am I gonna do this tall bad for your Parkinson’s You know, I honestly felt that that moment was my breaking point.
And this is the complexity of career and finances, that is overwhelming, not to mention everything else that comes along with it. So on top of everything you were experiencing, what happened,
Ian Rodriguez 11:17
You know, when it came down to so that hearing, you know, the whole process it is it is a long process it takes it took me three years to to get my, my my winnings, you know, but after with a hearing and all that went down, and they’re proving to them that, you know, I was not capable of working as fast food restaurant, you know, I got my first liability for workman’s comp and we’re getting hurt through this entire experience with the trauma and everything that’s involved with it. It was a ray of sunlight. When I when we got the diagnosis, back then she was my girlfriend. I even told her to go Okay, so you know, it’s Parkinson’s, right? I mean, I don’t want to feel that you need to be here within the religion with me. If you don’t want to be She told me you know what, we’re both in this together and I am so thankful for it and my kids are here with my journey and so yeah, if the relationship is strong and then the love is there that’s battle you know? Yeah, this battle that
My wife shared your story with me you reached out to her and you had included some videos the changes of your condition now on the first video you were completely dependent on a walker you could hardly move forward the next several videos he said you’re running and boxing and this is a few months or years later take us through what changed
Ian Rodriguez 12:43
- I was doing really really really bad. I was surfacing around YouTube videos looking for I don’t know whatever I typed in something Parkinson’s, I forget. And bam, Rocksteady boxing popped up and went, Whoa, okay, and so I ran into video. Have a fellow Parkinson sister down I think close to the LA area and I started watching the video and outcomes okay down in Jennifer Parkinson’s. Yeah, she’s awesome. She got very good communication with her. She’s awesome. So I saw her video and like, wait a minute, I felt so inspired by planning minutes she could have Shikha they’re doing that down there should I can do this up here in the Central Valley. Why not?
Jenifier Parkinson was 32. She was diagnosed with Parkinson’s in 2005. Apparently, her neurologist told her that you’re going to be in a wheelchair in 10 years and unable to care for yourself or her children. And she told them I’m going to prove you wrong. So in 2016, Jennifer launched Neuroboxing. Now Ian credits his father in law to give him that initial push.
Ian Rodriguez 13:55
Okay, my father in law Whoa. There’s there’s another great person that came that really helped me out so much turned into as well. My father in law told me Hey my through his church I guess the isn’t the ministries that are there. They were opening up a building in there and they had a few punching bags out there too as well. So he says, Hey, I talked to my pastor and he wants to meet you’re like, Okay, popsicle alcohol. So yeah, we went out there and I showed him the video that I’ve seen of gender for Parkinson’s and you know, the program did so Hmm. Okay, so right away he you know, I had my gloves on handy that I have had born and so he had his net worth and we just started going boom, boom, and it slowly but surely in two weeks, I started feeling a little difference. I started feeling the difference as far as the power that I was getting, you know, on. And so that’s one of those keep to keep things I knew that the movement is a very big, huge key component in the battle against Parkinson’s,
It is very cool that his father in law recognized a way to help him to start moving. Starting out very slowly at first and then progressively becoming more active. We have the intro of Rocksteady boxing into Ian’s life. And from all the videos and information you find you find just a group of very diverse people in different stages of Parkinson’s. Ian was one of those that said that Rocksteady boxing, saved him.
Ian Rodriguez 15:21
There’s a video on YouTube of the whole history of Rocksteady boxing where it started in a new office in Ghana back in 2006. It talks about exactly the person that went in there and and you know, instilled in the nouns ahead of the program, but it’s just an amazing, awesome exercise program. Because it’s not only it’s not only designed for people that you know, just like me, they’re designed also for fellow parties that have mobility like wheelchair if you need to, if you use a wheelchair or a walker.Yeah, we can use a chair and do the same thing. It’s the same exercise. We’re moving our legs and arms.
Further in the conversation in described a recent set Back, the pandemic hit in gyms had to close and boxing had to go virtual. He continued to work with his trainer john Bowers using zoom. However, there was an incident that got him off track.
Ian Rodriguez 16:14
I had a situation about a month ago where my mom, my mom lives with us here at my house, my mom, she lost her bones and she fell in a room and I was attending her because she got a little bit of hurt and she got bruised up. I was making sure she was okay. Helping me she needed to go restroom. And so I kind of lost a little bit touch of doing the zoom right here at home, I have a my punching bag where if I’m not if I’m not at the gym, I’m here at home, punching my bags doing some exercise. I have my Bowflex machinery that I use as well. I have a little bit of a situation feeling bad. You know, I’m like, I felt wearing off more often more or more than usual, like, What the heck’s going on? And, you know, so if you consume high protein meals, it’s going to mess up with your interference of your levodopa Well, me being who I am my low cell carnia so it’s our turns instead of having six talks I should have three but did I overdo it? Like why am I freaking wearing off and I was really feeling really sluggish and I don’t know if you know the answer to why you feel like this is because you have it’s been close to three to four weeks a whole month that you haven’t even done an exercise at all. I actually looked at my video with the walkout and I all Heck no, no going back there. A couple days ago I finally broke through in the situation trying to help my mom and then not being motivated. After some reason it happens it happens you lose you lose motivation and and that’s one of those things that the Rocksteady boxing trainers are trained to, to motivate to inspire. I started thinking over and over and I went over my you know what, in the only way you’re gonna get going and break this those two take your own darn frickin advisor. You’re not a fighter learn to be one. If I don’t Do my cardio or keep up exercise. I’m gonna be in bad shape ended up looking at a YouTube video workouts hitting back and I found this one video this trainer was talking to that to me and says I’m gonna push you I’m up even though you see me on the video talking I’m gonna push you and Oh yeah, I needed someone to come on give me more bonus like, oh my black Yeah, I brought it on and I know what I need to do that sometimes that little push, come on in. Come on. We gotta do you know, I got back on track.
It’s been 18 years since you were first diagnosed. You have a wonderful wife, a 10 year old and a 12 year old. What’s it like for you to be a dad and have Parkinson’s?
Ian Rodriguez 18:42
Well, I am a little bit concerned because my oldest daughter is going to be starting Junior High this year like, you know, junior high or teenagers. Oh boy. But now you know what, Daniel? You know, my kids are you kids aren’t everything to me and I like to. I like to have an open communication with them. I’m not sure if they ended up I’m pretty sure they do understand how he salame. I’m not afraid to say that, you know, hey, you know later on down the road, Daddy’s gonna get a little bit weaker or worse, but I still keep on fighting for them, but also to another reason why I put on my boxing gloves and punch the heck out of Parkinson’s because I want to be there for them in their life later, be as much as involved as well as I can with them.
So, you received the Rising Star Award. What does that mean? And what does this symbolize?
Ian Rodriguez 19:42
Because I’m so much involved with the Parkinson’s foundation and I guess they found out what I what I do, you know, I reach out to people and talk to people and I’m very thankful that there are these sites, Facebook or whatever, I love and I enjoy Connecting with so many people if I’m not talking to you right now I’ll be talking to someone in Tucson, Arizona or somewhere in the New York area or even Mexico IBS. And so I always manually Yeah, just talk to fellow Parkinson’s in Mexico or, or the UK or Canada. Fellow friend Sharon that she lives in North Carolina. She was by herself and so I like reaching out to her once in a while to check up on her and a mama bear you Okay, making sure she’s fine. Just checking up on them, you know, and I guess the foundation found out that I do that stuff. Oh, yeah. I was totally so shocked to hear that. I was even a nominee and like thinking, well, how did this happen? Who did what what did I do or what’s going on? We were speaking before the show and you were telling me that your doctor said many individuals and Parkinson’s that are 18 years in are usually in wheelchairs or not able to be mobile. I should ask Absolutely be in a wheelchair. And you know what? That’s the honest truth a there’s there’s five stages of this disease of up at the stage where we’re I should be right now in actuality, I shouldn’t be at four. You know, I should be in a wheelchair. No, I should. I’m gonna say that because of the boxing and the exercise. I’m at a stage two three, maybe two.
What about your walker?
Ian Rodriguez 21:23
I have my walker in the trunk just in case. I you know, I hardly ever use it excited did ask him a while back. You know, when should we start worrying about me getting beds as well the day we see the carbidopa levodopa stops working here today, we need to start working on 43 now, okay, I think it’s totally worth promoting. And 10 years from now I’ll be 33 you know what I mean? reality I kept focusing or be concerned of what’s going to happen in the future. The only thing I can be concerned in now what I can do, what I can do in the now present. We have our bad and good moments. You’re allowed to cry. You’re allowed to do whatever you want with this disease, you know, but don’t let it define you. There’s still life. Yeah, it’s just keep on battling this disease. Never give up, do your exercises, you know, movement, do something. Don’t just be there sitting couch potato, and don’t feel bad for yourself. I don’t feel bad for myself. It seems like that my whole never give up attitude was born when I ever since I started doing the boxing and exercise. It just totally gave me a totally different power and a totally different view of looking at this disease. And ever since that point on my whole attitude changed too as well. feel good about myself, you know? Yeah. Might have Parkinson’s Parkinson’s does not have me at all.
And I just want to thank Ian Rodriguez for being on the show and sharing with us such a powerful testimony about how he does not give in the Parkinson’s and continues to put his boxing gloves on and take the fight to Parkinson’s to Brian a very inspiring story, one of the person that refused to give up, though we had such challenges along the way in being so young.
It definitely seems to have the Rocky Balboa spirit boxing ring of life getting knocked down and getting back up. And just as you say, Daniel pressing forward and also as an outsider just makes me kind of reflect on what am i complaining about, but he’s going through and he’s making the best out of his situation. So I really was glad that he was able to come up on the show and share his story. So Daniel, what is your takeaway from Ian’s story? As someone who does have Parkinson’s disease.
The biggest thing, among, everything else is number one, his attitude of don’t feel bad for yourself. I don’t. And know, it took a while for Ian to arrive at that outlook on life. Secondly, really spoke to me when he said he can’t look too far in the future. The foundation of this podcast is me trying to look deep into the heart of Parkinson’s and trying to find as many answers as I can. It was a great reminder to temper that and to enjoy the loved ones around you.
Something else I took away was just the similarities between your journey and his Daniel, and some of the differences. I would love to hear more people come onto our show and explain what they’re going through with this disease.
Looking at the next episodes that are coming up, there are only a few left.
So what does that mean the end of the series, the end of a season
For right now the season is going to end within next several episodes. What I’m going to do after that is going to have to be reevaluated. It may mean that there’s some time that needs to be Come between season one and season two, maybe I need to live a little bit more. Maybe I need a process and come up with new conclusions in order to share that in season two. I don’t know, a format change. Not exactly sure. But I think in the next several episodes, there’ll be a good way to wrap up a solid season one or at least that is my hope.
I believe our audience will think so as well. And while you’re busy reflecting during the offseason, we would love to hear from our listeners whether you have Parkinson’s or you’re someone like myself, who’s on the outside, it knows someone that Parkinson’s, just like Ian’s story. There was some similarities there with Daniel and een there are some differences. So we would love to hear your story and your feedback for the program and that contact information is coming up right, Daniel.
That’s right. And thank you for listening. Our email address is email@example.com. The toll free number to call for our voicemail, if you’re in the US is 706-873-1656. If you’re listening to this in a podcast player, look down in the description and there is a direct link to where you can click to call or to take you directly to our podcasts the address. Also, if you have the anchor app is a pretty cool app that you can find on Apple and Google’s app stores. You can search for Parkinson’s and me on the app Tap on the podcast along the top right you’ll see voice message tap on that and you can record a message and it will send it directly to us.