Modified By MS: Turning Diagnosis into Drive featuring Matthew Price

In this episode, Matthew and I dive deep into the inspiring story behind the birth of his non-profit organization, Modified By MS. Matthew shares his personal journey living with Multiple Sclerosis, the challenges, the resilience, and the moments that redefined his outlook on life. Through his experiences, he saw a gap in the support, understanding, and resources available to those navigating life with MS. That realization sparked the creation of Modified By MS, a community-driven non-profit aimed at providing education, connection, and empowerment for individuals affected by this often invisible illness.

We discuss how the organization came to life, the obstacles Matthew faced, not just with MS but in building a movement from the ground up, and the incredible impact it's already having. Whether you are someone living with MS, know someone who is, or simply appreciate stories of hope and determination, this conversation will leave you uplifted and motivated.

Matthew and Rebecca Price are the founders of Modified by MS and have been married 34 years. They are known as teachers and mentors in the market place as well as ordained pastors. 

 After being diagnosed with MS in 2004 Matthew began his journey to fight back with HSCT, as well as modifying his diet, exercise and his daily routine. 

Matthew and Rebecca’s passion and desire continues as they speak and encourage the lives of men, women and families. It is their heart to equip and empower others to live a life by not just surviving, but a life where they can thrive.  This is accomplis

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Transcript

SPEAKER_00: 1:19

Welcome to today's episode of Unapologetic Living. I am excited to welcome Matthew Price to the show. Welcome Matthew.

SPEAKER_02: 1:28

Thank you, Elizabeth. Great to be on.

SPEAKER_00: 1:32

Yeah, I'm excited to have you. I know I recently sort of had my introduction to you and your organization called Modified by MS for those out there who don't know for multiple sclerosis. And you're the founder of Modified by MS with the goal to connect and encourage others while providing resources so that they can live their best life.

SPEAKER_02: 2:01

Correct. Correct. And I have to take only half of the credit. It's the co-founder between my wife and I. So Rebecca is the other co-founder. She is definitely the engine behind all of this.

SPEAKER_00: 2:15

Yeah. And I remember when I founded your post or whoever posted the post. Yeah. It was a picture of you and your wife.

SPEAKER_01: 2:23

Yes.

SPEAKER_00: 2:24

You've been married 37 years and she has been by your side all through this journey. And I just, it was just an inspirational message. And that's when I reached out because part of my, the goal with my show is to help everybody live their best life. And we're all maybe dealing with something different. And even if you don't have MS per se, I'm sure there are tools that and insights, nuggets of wisdom that you have for us today that will help just about anybody live their best life.

SPEAKER_02: 3:03

Well, yes, I hope so. I say this a lot. I've been saying it more recently over the last few years, several years, is most certainly not a medical doctor, but I may know a thing or two about a thing or two as it relates to multiple sclerosis and how to live with it and how to live your best life. So yes, thank you. Appreciate that intro as well.

SPEAKER_00: 3:27

So can you go back and tell me a little bit about... when you were first diagnosed and anything leading up to that diagnosis?

SPEAKER_02: 3:39

Sure, sure. So I started noticing a couple things. We were living in the state of Missouri at that time. And We'd only had our three daughters at that time. And we'd actually gone to a movie in December. And I know, I remember specifically exact movie we were watching. And I remember exact scene we were watching in the theater. And we were sitting there and watching, we were watching Santa Claus too, because it was Christmas and such like that. So it goes back a bit. And I felt like my face was getting numb and it really was getting numb. And I was sitting there in the movie and obviously I'm there with my three daughters at that time and my wife. And I didn't really say anything. I didn't scream and loud or anything like that, but I just noticed that I just sat there. I'm like, okay, did I just eat a piece of popcorn that just, I don't know, lodged on my tooth. And, and as the evening was going on, I was like, that's, You know, and I started kind of moving my mouth a little bit and I was noticing, again, I was keeping this all contained and I was like, okay, something's going on. So we get into the car and I said to my wife, I said, sweetie, I said, will you, can we turn the light on real quick? I want to, you know, can you look at my face? And she said, sure. And she said, your side of your face is really dripping. What's going on? And I said, I don't know. So I, you know, that was really the initial symptom. Okay. I didn't know what that was at that time. Excuse me. And so obviously, you know, 33, 34 years old or whatever. I contacted the doctor and the doctor said, well, let's let's, you know, check you out. And and at that point it was kind of dismissed and said, well, it could be your wisdom tooth coming in. And so I went and, you know, went to the dentist and I said, well, you do have your wisdom teeth. They both have come out. And but that really shouldn't cause any facial paralysis or any drooping and things like that. But it might not be a bad idea to, you know, see a follow up with a doctor and maybe get an MRI. And of course, you know, you're in the early 30s. And what do you think I did? I just ignored it. And so fast forward, at that point, I was exploring different career opportunities and career growth opportunities. And also at that time, we had our fourth daughter born. And so it just kind of became, my facial paralysis went away and didn't really think too much about it. So, you know, if it's not in front of you, it's forgotten. And so fast forward into 2004, I started a new career in Northwest Florida at a large hotel resort in Destin, Florida. And I was experiencing some unique things. I didn't even call them symptoms. I just, you know, I was 36 years old at that time and I was experiencing some unique things that were going on. I was always wearing long sleeve shirts like I'm wearing now. And even in the dead of summer, July, August and such. And, you know, here I'm working at a beach resort and I was wearing these long sleeve shirts, even rolled down to my forearm. And because I couldn't put my arm on the desk because it felt like I was putting my arm on a block of ice. It was that uncomfortable. So if I'm talking to a manager or talking to a client or just putting my arm in the rest. It was very, very uncomfortable. And my wife had noticed that there was a couple of times I would stumble going up the steps or it was a couple, you know, it was a few other things. So I had, you know, I'd said to Rebecca and I said, let's, I think I need to see the doctor. So we had a good relation, a great relationship with my family physician. And I went and talked to him and shared with some of those symptoms I was coming or having. And again, this is in 2004 and there's no social media, there's no Facebook, Instagram, et cetera. And he said, you know, I know sounds like MS. Awesome. what's MS? And he said, well, I don't want you to get concerned. And what I don't want you to do is I don't want you to go to Dr. Google and look up anything because we don't know. And let's get you in with a neurologist and they're going to want to do some MRIs and things like that. So what do you think the first thing I did over that weekend? I went to Dr. Google and I typed in MS. And again, not knowing everything about it, when I was reading several things, again on the internet i was like oh gosh i got this i got this and i was starting to be a little concerned and um you know selfishly i was like is this going to kill me and it didn't it wasn't going to kill me but obviously it was going to change a bit of a direction in my life or could potentially change the direction of my life and um so i did go through the series of MRIs and met with a neurologist who was not an MS specialist at that time, didn't know even what an MS specialist was. And the neurologist came into the patient room with my wife and I, and he said, you know, it's not every day I tell a 36-year-old man he has MS, but you have MS, you have multiple sclerosis. And I had pretty much kind of accepted the fact that this could be the trajectory because I was looking at all the things that I was having and I was like, gosh, this is adding up. And so I'd already kind of accepted it even from a, you know, overview like that. And when it really impacted me was he said, okay, if you can excuse me for a minute, I need to go grab something and I'll be back here. He came back into the office about five, 10 minutes later and brought a box of injectable medications and And again, this is 2004. And he said, you're going to need to take one of these injection medications every day, once a day, every day for the rest of your life. And this is a guy that doesn't do needles, doesn't do medication, things like that. Pretty active lifestyle, raising four daughters, a wife and living in Florida, very full-time intensive career. And I was like, And, you know, I looked over at my wife and she was melting at that point. It's like, wow, what's happening? So he, you know, said, do you have any other questions? And of course my head is spinning with all sorts of questions inside and what's this going to look like and things like that. But I just was looking at my watch and I said, I have a meeting that I have to conduct and manage in the next hour. Are we done? It was a little, probably impatient, but, So I get in my car and I headed back to the resort and my wife got in her car and she headed back home. And so that's where we kind of, you know, I didn't know what she was thinking. You know, I knew what I was thinking and so on and so forth. And it was a bit of a gut punch from the confirmation. So those were those initial symptoms that I had felt and experienced. And then that diagnosis came in November of 2004. All

SPEAKER_00: 13:36

right. So you parted ways after that meeting. Right. you all came back to kind of discuss like your steps moving, your action steps moving forward?

SPEAKER_02: 13:48

Yeah. And again, you know, it's in 2004. So there's not, you know, now in 2025 or whatever, we would be going to social media and looking at things and, you know, whatever. It wasn't there. So I was in this little bit of an island. Didn't know I was on an island, but I was on an island. So I had never even met anyone who had multiple sclerosis that I had known. I didn't even meet another person who had MS until 2016. So all that period of time from 2004, clinically diagnosed, and to 2016, I'd never met another person who had MS. And so, you know, when I came home, you know, my wife and I, we talked about a little bit of it. We talked to the girls, the girls were young at that time. We, at that point had a, our youngest daughter, she was only a year. And so obviously she had no knowledge and, you know, our third youngest. or third old, excuse me, she was probably five. So she, you know, wasn't even barely putting M and S together. Right. And then we had our two olders and our older daughters, and they had some understanding that something was going on with dad, but, you know, we were very, we were pacing ourselves as far as how we're talking about it and things like that. It wasn't a big issue at that point. It really wasn't defining. It really wasn't life impacting. I was still doing life. I was still working full time. I was going to work in the morning, working until late in the evenings, sometimes seven days a week, 60 hours a week. And so doing life with my daughter and my wife, it really wasn't impacting that much. So that's kind of the continuation of those first, not only that first night, but also those first several years with my diagnosis of MS.

SPEAKER_00: 15:45

So you did not choose to medicate or did you?

SPEAKER_02: 15:49

Well, again, this is 2004. It's, you go to the doctor, the doctor tells you, this is what I'm giving you. And this is what you're, you know, what I'm telling you to do. And it's not every day. I tell a guy, he's going to take, you need to take this every day and this medication. And I did, you know, again, going back to, I learned a thing or two about a thing or two as it relates to MS. And again, Interesting enough, Elizabeth, a year later, almost to the date, I was at home. I went into work a little bit late for whatever reason. My wife was out and she came home, I guess around lunchtime. And I was feeling a little warm in my face. I wasn't thinking twice of it. I was thinking, okay, you know, maybe, maybe running a small fever. I don't know. But I wasn't thinking about it. I was thinking I got to get into work, et cetera. And Rebecca said, what's the last time you, have you seen your face? And I said, no. And she said, you've got welts all over your face and your face is really red. And, and so I looked the mirror and i had all these welts all over my face and didn't even know it and literally at that moment um my throat was starting to feel like not feel it was closing up so what's happening is going into anaphylactic shock and didn't even know that thank goodness rebecca did come home at that point because you know i don't know what would have happened and so we immediately went to the er and uh the emergency room um you know started administering medications to counteract the anaphylactic shock And it was interesting enough, it was literally a year to the date. And so that's in, you know, 2005 now. And then had another follow up with a different doctor, because at this point, I'd kind of graduated, okay, I need to learn a little bit more about this medication, what medication should I be taking, and things like that. And, you know, I went to this new doctor, and he suggested a different medication, it was an injectable again. And I had major problems. side effects with that. Nausea, you know, just major, major side effects. And at that time, there was only four medications out there. There was what they call the crab drugs, Copaxone, Rebif, Epinox, and Betocerone. And so those were the only ones that out there. And so I did that particular medication for probably about six, seven months. And again, it was an injection that I had to take in the evening because, you know, the instructions were taken in the evening. You would sleep through the nausea, you know, to sleep through, you know, not feeling so well, take an aspirin and things like that. And, you know, seven, eight months into that, I was like, can't live like this. I can't live feeling this bad all the time. And I remember saying to Rebecca and I said, I just don't want to you know, this medication is making me feel terrible every day, not just a couple times throughout the week, every day, every morning I was waking up sick, nauseous and fatigue and many of these other types of experiences. And I said, I'm just going to make the decision. I'm not taking this anymore. I just cannot do it. I cannot focus. I cannot do my work and life and whatever. And so I decided to take myself off. And, and then I was, you know, I was doing okay. You know, I was, you know, trying to look into things about my health and what could I do? What could I focus on and what could I manage? And again, this is 2005. The social medias just weren't there. So I was subscribing to different medical periodicals and journals that were being mailed to my house or I was subscribing to them, going to my emails and things like that so I could learn everything about the health. There's got to be a cure. There's got to be something to really manage this disease and to take it away. way. And so I was obviously very naive and things like that. But I did learn a lot. I would get on these journeys about once a month and I would sit in front of my desktop computer in our bedroom and I would just sit there for hours and hours and read and research and look through periodicals and journals. And so I was spending lots and lots of hours in doing these things. And I was learning more about health and supplementation and vitamin D and all the things that we now know we can possibly get into this discussion in a bit. But I still was looking into that basic medication. Was there something that could help the MS? Is there anything out there that's gonna take this MS away? Am I going to feel better by taking a medication and things like that? And I went to another different doctor. We were in North-Oast Florida and the medical community for multiple sclerosis at that time was very, very limited. And we met with another doctor and she had suggested about Avanox. And at that point, again, there was another in the crab family. And so I did that for a short period of time. But again, it was having the same side effects as the other one. That's the second injectable. And again, I said to my wife, I said, I just can't do this. I'm not going to do this. I'm not going to live like this. And so I continued the exploration. And that's at that point, it was probably in 2008, 2009, somewhere around there. At that point, I was like, you know what, I'm just going to do clean. I'm going to do as clean as possible. Unfortunately, it still didn't have the education and didn't even have the discipline as I do now as, you know, what health, what that really looked like, whether it's a daily exercise, meditation, prayer, all those things that I'm doing now, which we possibly might talk about in supplementation. And so I was, I made a commitment. I tried to make a commitment. I can do better with healthy eating and so on and so forth. At that point, I started reading things about anti-inflammatory foods and, you know, and so on and so forth. But when you're raising a family with four daughters and, um, and a wife and things like that, you're still going to enjoy life and things like that. And so I would, you know, try a little bit of it. I would get on that train of eating well and anti-inflammatory and so forth. And then I'd be I'd do really well for two or three days and I'd fall over the wagon. It's just easy when you're running and managing a family like that. That continued on. By this point, Facebook had really been created and social media. It was probably in 2011, I picked into heard about something called CCSVI that's chronic cerebral venous insufficiency. And there was a liberation treatment where individuals could go and, um, get checked to see if their jugular veins were stenosed and mine were. So this was 2011. And at that point I did have significant, uh, blockage in my, uh, both my left jugular and my right jugular. And, um, considerably. Uh, this one was closed up by 90% and this one on the right was closed up by 70%. And my agasys, my azagus vein was closed up about, it was twisted like a candy wrapper. So they went in there and, um, you know, basically open those up venoplasty and, um, it was, again, they call it the liberation treatment. And that was pretty much life-changing the very first time. So I'll never forget two days later, my daughter had come down. She was probably six or seven at that point, coming down the steps. And I met her halfway at the middle steps, picked her up, carried her down. And then I was off work that day. And my wife and I, we went to the local grocery store and I picked up a watermelon. I was walking all the way through the store with this watermelon, carried outside, put it in the car. And thought everything was fantastic. Unfortunately, with that particular procedure, it's not permanent and your veins do stenosis and they can close back up and they did close back up. And I had that particular procedure done five different times at a hospital in middle Florida and they were fantastic and it helped me each time. Unfortunately, it wasn't a long-term. And then in 2014, I started investigating HSCT, stem cell transplant, and was looking into, you know, again, how do I stop the progression of my MS? What can I do to halt the progression? Because at this point, now I'm reading more. Now I'm reading more into the social media and, you know, what could happen and, you know, walking and wheelchairs. And it's just, you know, it was just very, very overwhelming because at this point, my physical health did start to deteriorate. Again, I was in a very high stressful job. There was a lot of stress going on with that position. And, you know, it's just life. And again, having four daughters and a wife, not that it was stress, but it's just, you know, it's just life. And so I started investigating HSCT, which was not approved in the United States, still not approved in the United States. And I found that there was two international clinics that were doing this. One was in Moscow and one was in Pueblo, Mexico. And my wife says, we're not going to Moscow. We're just not going to Russia. And I said, okay, fair. So this also same time, there was a doctor up in Northwest University in Chicago who was doing a clinical trials for HSCT. And I had requested to be checked into and looked into that I could try out for the trials, if you will. And I was denied. But then three months later, I received an email that says, hey, we'd like to check you out. I'm like, fantastic. This is going to be life changing. Went up to Chicago Northwestern University, went through the whole battery of different tests, sat in a sat late in an MRI tube for four hours and all to be seen by the doctor for four hours. maybe six minutes and had me stand up and walk three steps. At that point, I was using a cane for assistance walking. Again, this was in October 2015. And he said, you're not going to qualify for this trial. I said, okay. I mean, it was a big, jagged, tough pill to take. And Days later, I found out it's because I wasn't a female. He was looking specifically for relapsing remitting in a particular age group, which made me feel a little better, but it didn't take away the fact that I wasn't going to get it done. And within 24 hours, I submitted my application to both the international clinics in Moscow and Pueblo, Mexico. And I was actually accepted in both. And again, it goes back to what I was saying. The wife says, we're not going to Russia. And so I was accepted into the clinical Ruiz in Pueblo, Mexico. And it was in January 4th of 2016. My wife, Rebecca had actually come to my work and we were going to go out to dinner. I was working a little late. So I remember it being dark. So it was probably around seven 38 o'clock at night. She picked me up and we're going to go eat. And she said, you want to, show you something. And I said, okay. And so we went to the top of the parking lot and she had me read this email and they said they wanted me, they being the clinical request, they said, we're happy to have you at our coming HSCT. And we would like you to be here starting on February 1. And again, this was January 4th. At that point in January 4th, we had not done any sort of It's a very expensive process. It's about, at that time, that was 2016, and it was$54,$55, somewhere in that number,$1,000, to go and do this, the actual treatment, which didn't take care of air travel, didn't take care of daily details such as menus and food and things like that, didn't take care of after meds and so on and so forth. So we... needed to do a little bit of fundraising, which was all self-funded and, you know, thank God, um, you know, we had wonderful people that wanted to pour in into invest into our life. Um, at that point I did go to clinical clinical, uh, Ruiz and started my process on February one. I lived in Mexico for about 28 days, uh, with my wife. Uh, meanwhile, my four daughters at this point, we're now obviously a little bit more grown, but, uh, Mom and I had to go to Mexico so dad could get a stem cell transplant, which sounds easy, but it was nothing but easy. It was very difficult, challenging, nothing I ever want to do again. You do go through several rounds of chemotherapy to eradicate your current immune system. And happy to report even to this day that HSCT, the stem cell transplant, did take and it did work and it was successful. It stopped the progression. So after several MRIs since then, there hasn't been any change with my lesions or MS and things like that. But anyway, so I'll just kind of pause right now. So that takes me up to February, right after stem cell transplant.

SPEAKER_00: 33:43

And it took.

SPEAKER_02: 33:44

It did. It did. So again, happy with it. I had bigger expectations. You know, some of the things I had read and even YouTube videos that I'd seen, oh, you know, they had the stem cell transplant and they're running on the beach. Well, those were a little bit exaggerated, let's just say. And so I had bigger expectations. But unfortunately, that wasn't the case with me. But I have to look back now and say, hey, the best thing was for it to stop the progression. And there are and have been some symptom recoveries that I've had, which has been fantastic. But as it relates to running on the beach, no, that never happened. You know, my water walking did, it was pretty much the same, essentially the same, but there was quite a bit of healing that needed to take place after a stem cell transplant. It's not as something as, oh, you broke your finger and we're going to put in a splint for the next four to five weeks and you'll be fine. It's, you're talking about a stem cell transplant and you're taking several rounds of chemotherapy to, again, eradicate your immune system.

SPEAKER_00: 35:01

All right. So up to that point, were you still working this high pressure job?

SPEAKER_02: 35:06

I was. I was. And initially it was in my first several years with my diagnosis. I kept it very close to the vest. I didn't share with my employer just because I didn't know. And there was obviously, you know, I was fine and it looked fine and things like that. And it wasn't until I started using a cane that I needed to be a little bit more open and share with them what's going on. And I wanted to, you know, the only modification I ever asked for my physician at that time that there was a, I just needed to make a change as far as a manager on duty. When you do a manager on duty at a hotel, that means you have to be the manager of the hotel in the evenings. And I never wanted there to be a situation that I couldn't get to a guest or a child if there was an emergency, because at this point, again, I was using a cane and I never wanted to be, the person that couldn't get to the guest or the emergency quickly. And so I just requested that my MS or excuse me, my manager on duty schedule be not do it. So I said, Hey, if you, take me off the manager on duty schedule. If I need to do something else for somebody, I can, but I just cannot do, I just want to be available if there was an emergency situation. So that was the only accommodation that I had requested. But yes, I was still working full-time at that hotel. And it was definitely very involved and very much pressure and such. Also during that time, I had taken a promotion. You know, even being diagnosed with MS, I had taken a promotion from another position in the leadership of a director into a higher position in the sales, you know, in the sales capacity, which brings on its own stress and things like that. But yeah, it was still working all the way up till June of 2016. Okay. And then

SPEAKER_00: 38:22

you went to Mexico once. When? What year? It

SPEAKER_02: 38:25

was February 2016. Okay, so

SPEAKER_00: 38:28

you continued to work after you returned home.

SPEAKER_02: 38:31

Yeah, well, again, I was on leave, meaning sick leave, FMLA, and things like that, whatever that looked like. And I was, unfortunately, I came, I went back to work, I guess, for a week, maybe two weeks. And unfortunately, I was significantly, again, the job doesn't change just because I went through a medical thing, doesn't change anything on the outside. But there was still a lot of things taking place with the job. And my body was just wasn't able to keep up. I had certain levels that had to be monitored on a weekly basis. And I really had thought that I could get back to it and so on and so forth after just two or three months. And unfortunately, that just didn't work out. I remember going back and being there and I went back to my doctor and I said, here's how I'm feeling and stuff like that. And he said, Matthew, you need to understand your body's not healed and you're a long way from it. You're going to probably need to be at work for, you know, I would recommend for the sake of you and your family that you really need more healing. Whatever that looks like, you're probably going to need at least another 30 days. And, you know, I sent a, I contacted my hotel and let them know what was going on. And within 24 hours, I received a FedEx letter and they were separating employment from me. So that was a bit of a gut shock and a bit of a gut punch. And, you know, after, you know, investing 12 years of my life to this company and doing what I'm doing, and they actually had been very personally vested into my healing and my MS treatment and things like that. And there was some other outside things that I, sometimes think that might have been some of the reasons of why they decide because when you have somebody's walking around the hotel with a cane it's not necessarily the picture that someone looks at that you know here's you know a very vibrant hotel resort And what's this guy doing walking around with a cane? And again, sometimes I get in my own head and I was thinking those types of things. But anyway, so unfortunately, my employment had ended in right before June of 2016. So,

SPEAKER_00: 40:58

you know, I like to look at those things as gifts. They're all opportunities. Right. And I'm sure something has blossomed since then. Right. Like maybe. you didn't know it right but i always think god is working for us not against us if we can

SPEAKER_02: 41:13

didn't feel it that way i

SPEAKER_00: 41:14

know but but you know your body who knows right had you stayed or they continued like you don't really know in what space you would be right now at 20 in 2025 right

SPEAKER_01: 41:26

exactly

SPEAKER_00: 41:28

and um but yeah i i'm sure it did it felt like a gut punch i have no doubt

SPEAKER_02: 41:33

It really did. And, you know, if it wasn't for my beautiful wife and just the love and the patience, not only with her and my girls at that time and our wonderful friends that rallied around us and things like that, because unfortunately, you know, when you're in a position and whether you're a man or woman, but especially as a man and not being sexist at all, it becomes your identity. It becomes your job, becomes your identity. And I had a wonderful career. I enjoyed every job. 90% of what I was doing and who I was doing it with, as well as the clients I had and things like that. But unfortunately, um, you know, you're wanting to, your mind is there, but your body is not cooperating. And so I loved every part of what I was doing in it to be again, 100% transparent. I went into a very, very dark depression. Um, it, get to, because my identity was now taken away. I didn't give it up. I didn't do it as a, as a suggested. It was taken away. And it was a really, again, it was a real gut punch. And it took me quite some time to be able to get out of that. So like what you said, Elizabeth, you know, you don't know what those God moments are until you have a reflective, when you go back and say, now I know. My wife used to say, and she still says to this day, she said, you never would have left that job if it wasn't kind of forced upon you. So it was probably the, it was the biggest blessing that you've ever had in, you know, since then. So just because who knows if my healing would have taken place the way it did, had I still been there.

SPEAKER_00: 43:09

Right. Yeah. I know. Sometimes I feel like you get these little taps and then they become punches and then they become, I'm just going to rip the rug right out from under you. So you, so you take a look at your life right now.

SPEAKER_01: 43:23

Right. Right.

SPEAKER_00: 43:25

Especially when it comes to disease. I know my mom had breast cancer like eons ago. And, you know, she had to take a real good look at how her life was out of alignment.

SPEAKER_02: 43:37

Right. Exactly. And that's exactly what I, you know, you don't know it when you're going through it. And did I take a hard look at myself in those first couple months about what's that alignment? No, I did. It took me a lot. And my wife really helped me with through that. I, you know, needed to take some time with God, a lot of time. And he had, I had to hear from him. It took a while for me to actually hear and for me to listen. Looking back, I, you know, it's kind of like, your hand is being held the entire time and you don't know it. And that's what, looking back now, that's what I can say. So yeah, it's at that time, I didn't know all the challenges and, but now I look back and realize, like you said, they are a bit of a gift.

SPEAKER_00: 44:28

And I also read that you and your wife are both ordained pastors.

SPEAKER_02: 44:32

Yes.

SPEAKER_00: 44:34

Now is that, do you like, work in a church? Do you? No,

SPEAKER_02: 44:40

no, no, no. We, we do not. At one time, my wife had opened up a beautiful little church there in Destin. And it was just a beautiful little, beautiful little church. And for about a year, and this was actually right before my stem cell transplant. So when the stem cell transplant came when it was over, and some other things that happened outside of me and us, there was a decision that we needed to make that we needed to close that church. It had nothing to do with Rebecca and I. It had everything to do with they just didn't want to renew a lease. That's really what it came down to. But our heart has always been for years of a bit of a marketplace ministry. And how can we help those? We've always been involved in church. We've always been involved in some sort of ministry. We've always been involved in some aspects of counseling couples and young ones and things like that. So it's always been our heart to give back into that space of community.

SPEAKER_00: 45:50

So does that play a role in the inspiration for Modified by MS? Or was that birthed from a completely different...

SPEAKER_02: 45:59

Yeah. So how it kind of... Not kind of. How it did birth is, you know... The pandemic was set in in 2020. And so it was probably May of 2020. At this point, we had moved from Northwest Florida to Tennessee, which we currently reside right outside of Nashville, Tennessee. And at 2020, everything was shut down, as we all know, because of the pandemic. And I had been part of a few Facebook groups and had seen a bit of a... consistency as it relates to these two Facebook groups that I was part of. And it was called, you know, men with MS specifically. And I had never been part of a support group per se. I remember at one time, my doctor years ago says, Hey, you know, there's an MS support group that meets on Tuesdays and they have coffee. If you, you know, I'm like, I have no interest in that. It's just not. And again, this is very early in my diagnosis. But I did notice, feel a really felt a tug um that you know what what i'm going to do so i'm going to there was somebody on facebook who said it would be really great if we could actually talk to each other and i said well i've got a zoom account why don't i just put a zoom together and see what happens so i put a zoom together on a monday And there was probably four to six guys on there all across from different parts of the country. And, you know, we were able to talk and share. And that first Zoom was probably about an hour long, an hour and a half. I never met these gentlemen. They had never met me. And yeah. What happened? It was just, again, very organic. So I started having this consistent Zoom every Monday. It's called Men with MS Get Together. Very simple. And so it just continued going on every Monday, same time, same bad time, same bad channel. And I was probably in 2022, I was contacted by the National MS Society and said, hey, we heard about this group. And with this, would you all like to, we'd like to put your information on our website because it is a unique, because MS unfortunately is higher diagnosed in females than it is in men. And in men, typically it hits harder. It's a little bit more challenging for a variety of different reasons. But anyway, so we have our, my contact information was listed with the National MS Society for this particular Zoom. And it just kind of started you know, increasing by size and the volume of men that we're getting on there are consistent. And honestly, from a sales and marketing side, I started contacting various MS clinics across the country and saying, hey, here's what we're doing. So if you have individuals that would, men, if you have individuals that would like to be part of this, so I'd give them information. And again, it was just a very organic process. And then very soon after that, Rebecca, again, my wife had said, have you thought about maybe doing a Zoom for couples that have MS? You know, not both couples, but, you know, open it up because you've got MS, I got MS, you know, from a different perspective. And I said, sure. So we put a Zoom together and we had several couples that get on. Going back to the men with MS, the men with MS group has grown leaps and bounds. So there's times where the minimum number of guys that are getting on all across the in Canada is averaging between 30 to 60 guys on every Monday. And it's a great safe space where we can get on and talk about symptom management, health, nutrition, if individuals are, how they're handling the disease, not only from a physical side, but also from an emotional side, from an identity side. And so I've been hosting and moderating that for over five years And then, like I said, Rebecca, we started doing the couples one that's been going strong consistently. And then I guess in the winter of 2024, Rebecca said, you know, I feel as though that the direction that we're going, that we're, what you're doing with the Zooms, I feel as though there's a really opportunity, a great opportunity to help and outreach to more. And I said, okay, what are you thinking? I said, she said, I think we can, I think what we need to do is create a nonprofit. And I said, okay, you know, necessarily didn't know what that would look like. And we went through the process and we've been a nonprofit since March of 2024. And in that time, we've also created other Zooms. There wasn't a space specifically for women with MS for Zoom. We now have men with MS Zoom. We have the women with MS Zoom. We have a Zoom specifically for newly diagnosed, for anyone and their loved ones to jump on a Zoom and have to understand what we're going through from a new diagnosis. And that has really increased in size. We're seeing an average attendance of around 30 to 35 individuals on there and it rotates. It's not always the same people each week. Again, not only the overcomers, which is newly diagnosed, but my wife also has a caregiver support group that she does twice a month. And then we also have our are united, which is for couples. So the various Zooms that are happening either on the weekly or even on the monthly. And we started, we just really felt as though there was an opportunity that our organization could provide unique resources to those impacted by the disease of multiple sclerosis and to help them live the best life they can. So that's essentially our model. Our first motto has always been not broken, not defeated, just modified. Hence the word modified by MS. So I have learned over these last, more than the last 10 years about how to learn modify. So my way of life is I've had to make some modifications, whether it's using, you know, an additional cane, whether it's a rollator, whether it's a scooter, whatever that keeps me because I want to live my life the fullest. And if I have to make a small modification in order to do that, I'm going to do that. It might have taken a little bit more than just I make it sound all nice and sweet now, but it didn't take that it didn't take that way at first. It took some time to get to that point. And that is kind of our message. And within the MS community is, again, not broken, not defeated, just modified. And how we can assist and how we can help those individuals and their loved ones live the best life they can. And it was also about that same time, Rebecca said, Have you ever thought about doing a conference? And, you know, again, with my background and history of event planning and, you know, those types of things and in hotels. And I said, no, we're not doing a conference. I literally said, absolutely no way. And, you know, it's a typical wife. And she says, I'll let you pray about that, which means I know what's going to happen. And so a couple of days later, I said to Rebecca and I said, what are you thinking? And I said, can we talk about this? And she says, oh, sure. And we're talking about it. and I'm getting excited and so on and so forth. So we had our first MS, modified by MS, Stronger Together conference in Nashville, downtown Nashville last year, and it was a great hit. It was a two-day conference, chocked full of, packed full, I should say, of all sorts of wonderful speakers, presentations, not only from the MS specialist point of view, but also nutrition and supplementation. We also had a filmmaker who showed his screening of a film that he had just put out. It hasn't made the airwaves yet, but it will very soon. So there was a special screening that was taking place, but it was more important that there was a whole sense of community when you've got individuals that are impacted by multiple sclerosis. And again, we had individuals come all across from the country and even Canada that came to this. And we're hosting our second annual conference this summer in August. And, you know, Rebecca came to me about second week after the conference was over and she said, you know, would you like to do this again? I'm like, whoo, I don't, how do we make the best better? Because we, you know, put everything in the kitchen sink in it. And we, you know, Everything from the events, the hotel, and we wanted to make it accessible for everyone. And everyone came to us, how wonderful it touched their lives and how impactful it was and such like that. And I kept on hearing these things and I kept on thinking, how do we make the best better? And so we are now going to our next conference is actually going to be at a four diamond resort in Missouri, southwest Missouri and Branson, Missouri. It's at the Chateau Lake. So we went from a Holiday Inn Express, you know, downtown Nashville to now a year later, we're going to be at a four diamond resort in Branson, Missouri. And my biggest thing was I want to make it very attainable for individuals to go to this. So not only is it a much better experience that people are going to have, but it's going to cost less. It costs less for the individuals to go to it and things like that. The experience is going to be so much better. And again, the opportunity for individuals to have knowledge, experience, people speaking into the lives, and also just a beautiful sense of community.

SPEAKER_00: 56:23

All right. And when are the dates for this conference?

SPEAKER_02: 56:27

So the major arrival date is folks are coming in on the 17th of August and sessions start on the 18th. And then we have our closing dinner on that Wednesday night, whatever that date is. I don't have the date in front of me, but I think that's going to be the 21st. So the conference agenda actually starts on August 18th, again, at the beautiful Chateau and Lake. People can, any individuals with MS or individuals that are, you know, think that this might help someone or they want to learn more they can go to our website modifiedbyms.net and learn Everything that we're talking about here, they can learn a little bit more about my individual story, our story as Rebecca and my wife, Rebecca and I, what we've journeyed together. And they can also learn about the conference and our Zooms. We have a whole landing page dedicated specifically to the Zooms where they can find out more about that. And again, they can find out all the information about our conference. We have a whole several pages dedicated specifically to the conference and another page dedicated specifically dedicated for unique resources for individuals living with MS.

SPEAKER_00: 57:40

That's one of the things that I was really grateful to see when I found your website is that you want to connect them, connect others with resources that, you know, having a partner with MS when he first got that diagnosis, which is his initial symptom was years ago, face, And like no vision, numbness down his arm. And they didn't diagnose him at that time. I think at that time, the doctor who saw him said something like, you know, it's like before you could have a pre-existing condition, right, in that matter. And so they didn't diagnose him. But he alluded to, I think this is what's going on. He said, try not smoking cigarettes. And, you know, he didn't have anything else really, again, until... 2021 of fall

SPEAKER_01: 58:37

right

SPEAKER_00: 58:38

and there could have been some subtle things that he probably or may or may not have picked up on over the years you know but um And it was like tingly pants and his legs were all the way down to his toes and things weren't going away. And he'd had a kidney stone and he also had a stent put in because he was so inflamed. And I think just the stress of all of that, his body was like on overload.

SPEAKER_01: 59:04

Right.

SPEAKER_00: 59:06

And which is and really the chiropractor is the one who. Requested the MRI. It wasn't even, and he said, you know, I've done everything I can for you. And I think you need to go have an MRI and

SPEAKER_01: 59:18

MRI,

SPEAKER_00: 59:19

you know, and then they sent us to the spine doctor and he's like, nope, you need to go right away to a neurologist. And so he gets the diagnosis and it, we felt as though there was very little insight into lifestyle modifications. Exactly. It was medication. And that was the only choice. And he knew then that he was not going to be pursuing that route.

SPEAKER_01: 59:47

Right.

SPEAKER_00: 59:48

And then my friend told me about the movie Living Proof.

SPEAKER_02: 59:54

That's who screened the video or the movie. He did Living Proof 2 and he screened it at our conference last year. And he will be our speaker, one of our speakers this August as well.

SPEAKER_00: 1:00:05

Well, maybe we can make it down there. And so it just, that's what I appreciate with your work, because when you walk away feeling like this is my only choice and zero other, literally, it felt like zero other options.

SPEAKER_02: 1:00:24

Exactly.

SPEAKER_00: 1:00:25

No other advice.

SPEAKER_02: 1:00:26

Exactly. And, you know, you bring up a good point, Elizabeth. It's, again, and I look back at my history of 21 years, there wasn't that. I mean, I can't tell you how many times I've had this conversation on a daily, as far as if you're going to be diagnosed, it might be better you're diagnosed in 2025 or 2024, if you will, versus 20 years ago, because the resources are out there. There's a Double-edged sword to that because there's a lot out there. You do have to filter through all the stuff and it can be quite overwhelming, especially for individuals recently diagnosed. If I were to be diagnosed now, there's so much out there. Social media is on fire between Facebook, Instagram, the different social media platforms that are out there and YouTube and things like that. Anything you want to find, it's at your fingertips and it can be very overwhelming. And you have to kind of, filter through and divide what you want to see and what you want to be a part of and in my particular journey especially over the last 10 years i've invested into what you're just talking about is i have had to make a collective decision that there's certain medications i'm just not going to be part of anymore and i'm not saying that's that's just my journey i'm not saying that Certain MS medications don't work. There's data out there that may or may not. Everyone has to do their own personal journey. But I know what has worked for me over these last 10 years, and that's an anti-inflammatory diet that is staying, you know, sometimes that word no has to be important for me. I've had to learn, especially over these last several years, about my investment and my my bandwidth and what I can do and what I cannot do and what I should not do. And if I step my foot outside of that circle, what that's going to look like, whether it's from a physical side or an emotion side or even a spiritual side. And I have to, you know, I'm very, I tell my groups that I'm to the point where my focus has to be, I have to specifically invest the first two hours of my day to me. And I know that sounds like a long time, but it was 24 hours in a day. But if I don't invest those first two hours into me, I'm going to be a train wreck for the rest of the day. Now that doesn't mean every day because we've vacation life family. We now have six grandbabies and so life changes a little bit and that's fine. Um, but I know what I need to do on a daily basis. I know what things I need to do that are going to be best for me, uh, whether it's, uh, my daily exercise once or twice a day, you know, my fitness regime, my supplementation regime, you know, whether it's smoothies, what I call my refrigerator clean out smoothies and whatever, you know, it just has to be that. On the flip side of that, I also am a 50, almost 57-year-old guy that has had MS for 21 years almost. But I also want to live life. So that means that if I'm with my grandbabies and they say, hey, Poppy, are you going to have a cupcake with us? Guess who's going to have a cupcake? Yes, I'm going to have a cupcake with them. But also know if I have a cupcake, what's that going to do And how am I going to feel in 20 minutes or even the next day? Um, but you know, I have to, you know, I'm not going to miss out life and I'm not going to say, Oh no, I have to eat cucumbers and, and things like that. And you haven't your cupcake, you have your cheesecake. Um, because let's be honest, those types of sweets are, is everyone's kryptonite. And I have to recognize what my kryptonite and I have to recognize what my kryptonite is. And if I can take a small little piece, then I'll be fine. But if, It's those big pieces of kryptonite I just can't do. And that's not just food, but that's everything. There are certain things that may trigger certain symptoms, whether it's heat and humidity. It could be ridiculously cold. It could be a barometric change. It could be being in a room full of noise and craziness and things like that. I have to moderate that and mitigate that. You just have to learn. And again, I have to always remember the message that we created, the not broken, not defeated, just modified. So I have to live that as well each day.

SPEAKER_00: 1:05:17

Yeah, I agree with you. My son just came home. And I'm pretty much gluten free when he's not home when he's not here. And then he comes in town from New Mexico. And he's on vacation. So let me guess that means I'm on vacation. And we hit all of his favorite spots. But I know for a couple days, I'm going to have joint pain in my hip, like there are just going to be things that I have to that I'm going to be living with if I make those choices. And I want to, you know, enjoy life too. And because too much restriction, then there's no And we all need, I mean, you know, this one, like vitamin J, like we all need vitamin J. We can't be living life so strict that we don't have enough of that joy and fun. And so, because that's equally as, you know, distressing to the body too.

SPEAKER_02: 1:06:09

It has to be. It has to be. And I agree with you. You know, when we have joy in our life and happiness in our life, that's that's probably the best medication, if you will, for all of us. And there's enough enough. You know, my wife and I talk about this all the time. There's enough stress in the world that we can determine whether we want to be part of it or not. Now, social media is could be could be a trigger for some of those things. Many times I'll have individuals say, oh, do you see this on social media? I'm like, no, I just don't have the bandwidth. That's my saying is I just don't have the bandwidth for it because I'm investing in what's going to pay dividends. And if I invest into something that's not going to pay dividends in my life, I don't want a part of it or into my family's life or my wife's life and things like that. So I'm a bit probably overprotective on that, maybe to the point of neurotic. But there's some aspect of it. I have to, again, be protective of what's going to work for me.

SPEAKER_00: 1:07:11

I agree. Absolutely. And I was just listening to a book. This book is called because I do I do have a time today, a time limit today, because we and I want to. And maybe we can do a part two. I want to tackle some of the lifestyle choices you have made.

SPEAKER_01: 1:07:29

I'd love to do that.

SPEAKER_00: 1:07:30

And some of the supplements and things that have worked or modalities that have been beneficial for you. But this Keys to the Kingdom, I think she kind of goes through men or princes. I forget. But the archetypes, the young archetypes. And one of them is King. And King is generally a man, 50s to 60s and older. He knows what he wants. He's not And it's not because he is unloving. It's just that he's not interested, right? And that's what he is because he knows it's not going to serve

SPEAKER_01: 1:08:03

the

SPEAKER_00: 1:08:05

group, the family. I

SPEAKER_02: 1:08:06

love it. I love it.

SPEAKER_00: 1:08:08

It makes sense.

SPEAKER_02: 1:08:09

Yeah, it does. And I was just speaking to someone earlier and I didn't have the wisdom when I was 36 years old. You're 36 as I do now. and the Muslim immaturity because we've lived. And when you go through a life-changing impactful thing like multiple sclerosis and the stem cell transplant and journey and those types of things and things being taken away from you and you obviously learn and live through those things. But yeah, I would definitely, that's something that I don't do enough of Elizabeth, even in my personal groups. is i will have you know i'll talk about hey this can help you this can help you because i know it Because for the last 10 years, I've been doing those things. There's certain supplementation, as you mentioned, that have been helpful for me. And it's not like, oh, it's just working for Matthew. It's science-based information that, like you mentioned, gluten. There's aspects of those things that it's now research science-based. And unfortunately, the majority of the population still doesn't necessarily embrace that. That's a whole other conversation. That could be a part three, right? But seriously, I would love to have that conversation because I don't do it enough and talk about, let me tell you what the regimen that I'm doing and why it's working. So, yes.

SPEAKER_00: 1:09:32

Yeah, I would, I want that to be part two. And I want to hear about the two hours that are, that are dedicated to you and, you know, for, right. We, you know, that, that selfish word may come up, but we have to, take care of ourselves in order

SPEAKER_01: 1:09:46

to,

SPEAKER_00: 1:09:47

you know, and so, you know, what's that two hours look like? And then all the other things you mentioned, your supplementation, the modalities that you've integrated. So let's plan on that. I'd

SPEAKER_01: 1:09:57

love to, love to do that.

SPEAKER_00: 1:09:59

Now we're, they people can connect with you through modified by ms.com or is it.net yes

SPEAKER_02: 1:10:06

it's actually modified by modified by ms.net and we have a few different ways that people can connect with us obviously our website again modified by ms.net we do have a facebook page modified by ms we do have we are on also on instagram not as much as we probably should because You know, it's a different demographic and what we are on there. And that's the best way for individuals to reach out to us through the modifiedbymus.net website, because there is a chat feature. If people want to ask questions for unique resources to be navigated a certain way, where is this information? Do they want to know information about the conference? Do they want to know information about the Zoom and things like that? So that's probably the best way to reach out to us.

SPEAKER_00: 1:10:55

Okay, so all these links will be in the show notes. And the conference details are also on the website?

SPEAKER_02: 1:11:00

Yes, they sure

SPEAKER_00: 1:11:01

are. Okay. Well, it was a pleasure. And I'm going to text you by tomorrow so we can look at another date. Love it. Because I do think a day in the life and then those two hours are... you know, could be helpful for someone out there because it can be overwhelming when you get information or you're deciding how to make lifestyle changes, food choices and supplement choices. It's a lot. And like you said, overwhelming. And then there's so much, um, consumer confusion.

SPEAKER_01: 1:11:31

Right.

SPEAKER_00: 1:11:33

Um, and I think it's important to have real life, uh, experience or stories. And again, what works for you may not work for somebody else, but you have some knowledge around it, what has worked and maybe food for thought for those in the audience.

SPEAKER_02: 1:11:48

Yeah. No, I would love to do that, Elizabeth. And I, and, you know, I will say this as a closing point to that is if it in to reverse it, to reverse the script, if you will flip the script, if it works for me, it will work for you. And you just have to season it a little bit. You might have to season a little bit different for you as far as what that looks like, timeframe and things like that. It took me a long time to get to the point where I'm at. And listen, I still have MS and I still have sometimes there's tough days. It doesn't excuse those things. But I know if I'm investing... what those good days are and what those two hours of my golden two hours, if you will, what those are, then that means my day is going to be good. My week is going to be good and or good or slash great. Because if I don't do that, then that's where the challenges are.

SPEAKER_00: 1:12:42

Yeah. Well, thank you so much for joining me and I will look forward to our next conversation.

SPEAKER_02: 1:12:47

Okay. Sounds great, Elizabeth. And I will look forward to your text.

SPEAKER_00: 1:12:51

All right. Have a great day.

SPEAKER_02: 1:12:52

All right. Thanks,

SPEAKER_00: 1:12:53

Sam.