Speaker 0 00:00:00 Hey you. Yeah, you, if you or someone you know, is struggling with anything mentioned on today's program, please, please, please, please, please, please email
[email protected]. That's a U T H E N I C K. The
[email protected]. I am available 24 seven three 65 to help in any way that I can. I have resources. I have open ears and open heart and tons of hope. I've been freely given all these things and would love to give them to you. Be good to yourselves and each other. Follow me on Twitter, using the handle at authen, Nick and my dog, Marla on Instagram at DJ Marla dot Jean
Speaker 1 00:00:50 <inaudible>. This is authentic. <inaudible>
Speaker 0 00:01:42 My name is Nicholas Thomas Fitzsimmons, Vander enabled, but most people just call me Nick. And this is my show author.
Speaker 1 00:01:51 It's like authentic, but instead of tick, I put in neck authentic. Okay, cool. And with me as always is my dog Marla
Speaker 0 00:02:12 Nothing. Huh? Are you still alive? Oh, okay. Oh, okay. I saw her move anyway, here on authentic, where we get authentic. We talk about all things recovery. Well, what do I mean by that? All things recovery. Well, what I mean by that is if you are still living and breathing on this earth, you yes
Speaker 0 00:02:33 Are in recovery from something. As for myself, I am in recovery from alcoholism. I am an alcoholic. I am also a drug addict. I have an eating disorder. I'm a compulsive gambler. I bipolar disorder. Really? The list could go on and on and on. But lucky for you, the show is not about me. It is about two people. First is my guest. TJ. Second is the one person TJ his testimony is most certainly going to help today. He is going to save a life because we here on authentic are here to tell you that you are not alone without Fitbit do TJ calling from afar. My very first guest calling in. Wow. What a lucky man. TJ, welcome to the show. Please introduce yourself in any way you see fit.
Speaker 2 00:03:28 Thank you Nick. My name is TJ. I live in Southeastern Wisconsin. I am a diehard green Bay Packers fan.
Speaker 0 00:03:38 Thank God you are among friends. We scan has got to stick together. Is that not right? Exactly. Go Pecko go bucks. Go brewers, go badgers. All of the above. All right, TJ enough about sports. Why are you here? Why are you on authentic tonight?
Speaker 2 00:03:55 Talk some about what has happened to my life, uh, regarding, uh, an illness that I have called multiple sclerosis,
Speaker 0 00:04:02 Commonly known as Ms.
Speaker 2 00:04:05 That's the most common, easiest way to put it. It's clumsy. Then multiple sclerosis, TJ,
Speaker 0 00:04:11 What is multiple sclerosis?
Speaker 2 00:04:14 It's a nervous system disorder caused by inflammation of the, of the nerve linings, the nerve impulses, move, move along the nerve pathways. If you have multiple sclerosis, there's an exacerbation is when there's a problem during an exacerbation, there's an inflammation along the neuropathway and it blocks nerve impulses from moving. And when the inflammation goes down, it leaves a scar along the nerves. That is what is sclerotic. Multiple sclerotic sites are happened when the disease progresses and the nerve impulses are impaired and it causes a number of different physiologic symptoms, such as numbness or weakness or poor balance or a variety of different things.
Speaker 0 00:04:56 What symptoms do you have?
Speaker 2 00:05:00 I've had quite a number over the years that I've had Ms. Currently my balance is poor. I have numbness in my legs and feet and some weakness in my legs.
Speaker 0 00:05:11 Jay, are you aware? I did a little homework. I'm super excited to talk about this real quick. Are you aware? Fun fact, every one, the 2.3 million people worldwide have Ms. Did you know that
Speaker 2 00:05:26 I had no idea that it was that many I have, I didn't know that
Speaker 0 00:05:29 2.3 million out of a worldwide population of about 7.8 billion. You are not that unique is what I'm trying to tell you. Basically you are not that fucking special. Did you know that women are three times more likely than men to have multiple sclerosis?
Speaker 2 00:05:49 I knew their likelihood was greater. I didn't know the three to one ratio. I didn't know that is that unique or special or I really
Speaker 0 00:05:58 Don't know what the fuck that means. And I probably won't put that into the final recording. I just wanted it to sound smart for just a second. Think goodness, this show is not about me and not about statistics. So let's get into it. TJ. I always ask my guests what their upbringing was like, what was your childhood like?
Speaker 2 00:06:18 Uh, I grew up in a small town in Northeastern, Wisconsin, and it was a marvelous little town to grow up in. It was comfortable. It was safe. It was fun. Fact. The home I grew up in was built by my maternal grandfather. It was a nice home and we lived in a number of different cities in Wisconsin, over the course of my childhood and young adulthood. But I grew up in a small town, Northern Wisconsin from for the most part,
Speaker 0 00:06:43 As you got older, what did your family life look like?
Speaker 2 00:06:51 There were four kids in the family for the most part we were in average household and one of the difficulties in my household, my father had an alcohol problem. The consequences of that are obvious. In most households, there was a lot of tension in the household relative to the drinking. It's something we simply lived with an accommodated to. And my father would at times skip treatment, get better and then relapsed. But it had been a problem for much of his life until he went for treatment about 25 years ago and got sober and was sober for the remaining 20 years of his life, which was wonderful.
Speaker 0 00:07:27 Probably know that children take on certain roles in their family. If they have an alcoholic parent or if they have an alcoholic family member that lives in the home. What sort of role did you take on in that alcoholic household while your father was still actively drinking?
Speaker 2 00:07:44 Uh, my role in the family is family roles called the family hero. The one who tries to be as good as possible and grow up and be mature and try to help out in the household to try to do as much as I could to limit the amount of anxiety in the household or tension in the household. So as to limit the likelihood of my father drinking, no, obviously I was powerless to control his alcohol use, but that that's the role I fell into. And in the home or there's alcoholism or drug addiction, people tend to gravitate toward roles to survive the anxiety to living with. Cause I do that for a living.
Speaker 0 00:08:26 And what is it you do for a living? If you care to disclose,
Speaker 2 00:08:29 Uh, over the years I've been a director of alcohol and drug treatment programs, both substance abuse, as well as mental health counseling for the past 45 years.
Speaker 0 00:08:39 Let me say TJ, you are on the right show. However, we are not here to talk about alcoholism or your family or the role that you played in your alcoholic household. We're here to talk about you and your, and your life in recovery, because that really is by my definition, what recovery is because you are obviously still living and breathing because you're talking to me right now, which means that you are in recovery. And it just so happens that we're talking about a fairly rare illness that occurs Ms is what is that classified as
Speaker 2 00:09:19 Classify as an autoimmune disorder of the nervous system, not able to have the same type of immunology from the infections are exacerbations that are caused in the nervous system.
Speaker 0 00:09:30 Is there a cure for Ms? No
Speaker 2 00:09:33 There's treatment for it? And there's many different medications that are used some work. Some don't depends upon type of Ms. A person has and other contributing, uh, medical factors. Some are more, some people of Ms are more debilitated, even early on to the point of being unable to walk. Some have what's called exacerbations and remissions exacerbations are when it flares up in their symptoms. When the exacerbation dies down, then you're in remission. The nervous system calms down again. And sometimes there's leftover injury that never repairs, sometimes whatever incapacitation or difficulty during the exacerbation goes away. So it varies. All the cases are similar, but vaguely different.
Speaker 0 00:10:15 Talk about when you first started feeling symptoms, obviously at the time you had no idea what the hell was going on. When do you remember first having symptoms that you now know were symptoms of Ms.
Speaker 2 00:10:29 Yeah, in retrospect, uh, my first symptoms have I remember back when I was a junior in high school, you were 16. Yeah. 16 going on 17. And you're how old now I'm 77.
Speaker 0 00:10:43 And you've basically been living with symptoms of Ms for
Speaker 2 00:10:48 53 years, 53
Speaker 0 00:10:51 Years of symptoms in Ms. What did these symptoms look like when you were a junior in high school?
Speaker 2 00:10:56 I remember specifically one day walking home from school, I'm walking down the street and I could feel a numbness in my chest, my chest and my stomach. I had no idea what it was. I did not have an injury. I didn't. There was nothing that precipitated that I knew of. I felt this numbness and it was unnerving, but I didn't pay much attention to it. I went on, it lasted, I don't know, four or five days to a week. And then it subsided and went away. Did you tell anybody about it? No. Why not? He didn't seem to be significant enough to talk about, and I don't do a lot of talking about that stuff anyway.
Speaker 0 00:11:32 Why is that? Why, why don't you talk about that stuff if I'm just speaking from my own experience, if I was 16 years old and I had numbness in my chest and in my stomach that was happening for up to a week. I might've said something to a friend, maybe younger sibling. Why didn't you say anything? What is it about you that you don't like to talk about? Those things?
Speaker 2 00:12:01 I guess it sort of goes with what we had talked about a few minutes ago regarding that family hero role. Don't want to show the vulnerabilities or shortcomings because I've got to keep up, keep up front that things are fine and dandy and take care of things. My personality is not one to complain about or cry about my short and my difficulties anyway. So I just sort of pick up, handle it and go on.
Speaker 0 00:12:23 Not complain about it may not be the right term, but just to address it, to talk about it. Do you think that was directly related to your alcoholic household that you grew up in
Speaker 2 00:12:35 Maybe peripherally after the exacerbation, the numbness subsided, there was, there was nothing, no big deal again for I, as I recollect vaguely nothing for four or five months, and then I had some more numbness and then it would subside that was 67, 68. It was not a big deal. During that time, I was, uh, working in a job during summertime and on Christmas vacation, it was a tiring job. I moved furniture for a living and I was a truck driver. You know, I would work 70, 75 hours a week. I didn't know, but I was sort of pushing my nervous system to a limit that I not to have been, but I didn't realize that anyway, it didn't cause too many other troubles until about, uh, two years later when I went and when I went away to college, I remember very specifically, in retrospect now, periodic access, exacerbations and remissions.
Speaker 2 00:13:29 However, in my freshman year, I think it was in college. I was sophomore year, one of the other, in any event, we were playing football out on a big field on the campus that was running, running down the field. And suddenly my left leg started to get weak and I couldn't run nothing. I had no injury that precipitated it. Just, I felt a weakness. I was frightened and this was significant. And it got to the point where I was dragging my foot, like a club foot. It was very weak. So I went to the hospital where I went to see a doctor. They hospitalized me. I was in the hospital for a couple of days and they did some neurologic tests. I met with the neurologist after I was discharged from the hospital. And he said, I'll tell you what I think it is. He said, I believe it's a mass.
Speaker 2 00:14:12 He said, I can't tell you that for certain we'll need to see what happens from here could be Ms could be in the name one or two other things. He said, they'd have to see our goals. So I was honored, but I thought now I can't be it it'll pass. Then about, uh, two months later went to see them, see a friend of mine in Madison. He was at school and at university of Wisconsin in Madison. And I went to see him and I walked into his apartment and he said, what's wrong with your face? I said, what are you talking about? He said, when you smile, only half your face goes up. And I didn't realize that my thought was having the exacerbation, but I had weakness on that. Either left right left or right side of my face or my mouth. I didn't, I don't remember which, and as soon as he said that, as soon as he said, there's something wrong with your face.
Speaker 2 00:14:58 I knew, you know, I knew and my gut told me, that's it. I got it. And I sent that to him. I said, I think I got it. He said, Oh, no, I can't be. I said, well, I don't know. But that's what I think the next week I got back to Brown was going to school called the neurologist. He said, come on in. So I went into his office and he examined me and he said, yep. That confirms that my diagnosis, that is I mass and I, I was stunned. I wanted to jump out the window. I mean, I'm not suicidal, but I thought you serious. And I was, uh, uh, 19, I think he just started telling me about how it's treatable. It doesn't need to be debilitating. It that's not going to kill you. It's not fatal. And there are some medicines and really need to get a neurologist that you see. And that sort of thing. I left his office and I took a bus back to the college where I was going to school. And that was a long, a long bus ride.
Speaker 0 00:15:55 Thinking about on that bus ride. Do you remember?
Speaker 2 00:15:58 Yeah, I was angry and scared. Angry at how the heck this happened, uh, and scared. Cause I didn't know what to expect. Had these vague things. Why I want to die, watch stupid and I didn't want to die. I just wanted to surf. The race has just said to me, when I got back to the campus, I went to see my best friend and I told him, and he was the first person I told and he was wonderfully supportive. What did he say to you? I don't recollect. I think it was generally supportive ethanol. That's terrible. That's stinks. You don't deserve this. You'll be okay. You can handle this. I kind of stuff. I mean, it wasn't terribly in depth, but he's a person I knew and trusted. And then I wanted to tell somebody,
Speaker 0 00:16:39 When did you tell your parents?
Speaker 2 00:16:42 The next day I called him later that day, my dad drove up to where the school was to offer support.
Speaker 0 00:16:49 What kind of support did your father offer you? Do you,
Speaker 2 00:16:52 Yeah, the predictable. We love you we'll do anything we can to help you cope with this. We'll pray for you. And we're sad to hear it. It was genuine. My mom and dad were marvelous. One of the things that happened when I went, came back home to the Milwaukee area, uh, I went to see a friend of mine. This friend is a man who was a quadriplegic. He had had an accident when he was 17 years old. He dove off the shallow end of a Lake and snapped his head, his neck back and broke his neck. And he went from being a strong, aggressive 17 year old young man to being almost dead quadriplegic for the rest of his life. I came back, uh, to the Milwaukee area where I was living and went to see him and told him, cause I knew he knew what it was like to, to run up against a wall like that. Talk to the feminist wife and his wife who was a nurse, referred me to a neurologist. That's how I started seeing the neurologist. After that year, I was done going to the school up North. I came back to the Milwaukee area for the balance of my education. I continued moving furniture for, for that year. I suppose it was foolish, but I thought I had, it's not that bad.
Speaker 0 00:18:12 Why would that be foolish with somebody with Ms? Why would moving furniture be foolish?
Speaker 2 00:18:16 Uh, because it dramatically strains, uh, the muscle in the nervous system and it gets you extremely tired doing that kind of work.
Speaker 0 00:18:23 So this strenuous exercise, this heavy lifting makes your Ms worse, is that correct?
Speaker 2 00:18:30 Yep. Excessive work extremes of anything tend to exacerbate the problems.
Speaker 0 00:18:36 And the funny thing is, is that part of the symptoms of Ms are pain and exhaustion. That would be hard for me to discern it. Well, yeah, I'm tired. Well, yeah, I'm in pain. I've been moving furniture all fucking week.
Speaker 2 00:18:52 I don't have physical pain from the Ms. Some people in their symptoms. They do. I don't, I've never had pain, physical hurt kind of pain from the Ms. It's been either the weakness or the numbness, as a matter of fact, that brings to mind something else that happened. When I started, when I began graduate school, my first semester in graduate school, when it came time for finals, I had an excessive numbness in my, in my hand. So I couldn't hold a pencil to write, to do the exam. Therefore I took oral finals my first year in graduate school. As with the other times, the numbness receded spent finest and vague a little bit sense, but not bad at all, but I had to change my life. I had to change what I was. I had to quit moving furniture and I found a new job.
Speaker 2 00:19:36 I started working in a mental hospital on the maximum security ward. That's a little bit of a change, but in a way, it dramatically changed my life because working there changed what I was going to be doing for a living. He also gave me the full fee impetus and the support to get into graduate school. And my career took off from there. There there's some side effects or I'm sorry, some peripheral consequences of VMs, which has been marvelous that I didn't know about when it happened. It's been an interesting ride in any event. In the succeeding years, I would have periodic exacerbations and remissions with EMS would be treated with a medication which worked and it worked. So I had the exacerbating remitting type of the illness. I've been, I consider myself quite fortunate to have been able to continue to function as long and as well, and as well as I have. And I do not consider myself a disabled by any stretch of the imagination. I just need to make some accommodations to
Speaker 0 00:20:33 What do you consider yourself? If you're not disabled, if you're not crippled, what are you? Who are you?
Speaker 2 00:20:42 Well, I've got some level of impairment from the Ms, but it changed me in terms of my career and what I do. I'm also far more cognizant of the trauma of both emotional or addictive disorders than a lot of other therapists, because I know what it means to get her to seize that you didn't get on purpose, that you can't control what you are powerless too, that there's no cure for.
Speaker 0 00:21:06 Is Ms. Hereditary, did you get any sort of explanation as to how this came about? Were there any viruses that you got when you were younger? Was there any sort of explanation or was it just kind of bang happy 19th birthday? Yep.
Speaker 2 00:21:23 It's just kind of bang. And after I found out about it, I sort of dove into researching Ms. I read everything I could on it to try to figure out what brought it on, what I could do to control it, how I could keep it from progressing, what research was going on, cures, what the medicine is and federal know for sure what causes it. And they still don't. And I've been looking for a better than 50 years. Some of the medications work some better than others. Depends upon where you're at in the progression of the illness and other contributing medical factors. In fact, it's of course,
Speaker 0 00:21:55 I'd like to go back to a question that I was driving at earlier. Do you label yourself as a disabled person?
Speaker 2 00:22:02 No, absolutely not. Why not? In fact, I make a point of not talking a lot about my Ms, too much of anybody other than my family, because I don't want to be either treated poorly and not get a fair deal from somebody else because of it, nor do I want to do, I want to be treated special or be given extra benefits, just treat me squarely for what I do. So I don't talk about it much. And for many years during the progression of the illness, and I did not have obvious, obvious disabling or impairing symptoms, the vast majority of people in my world had no idea that I had Ms. And most still don't the ones who see me now can, because I'm, I progressed to the point where I'm using a Walker, because my balance is poor and I've got some weakness. So that's, that's obvious even then, I don't make a point of talking about it unless the person asks me. And if it's someone that I care enough about to tell, and I'm just cautious about who I talk to about what
Speaker 0 00:23:05 People would you say know about you having asthma
Speaker 2 00:23:09 Dodgy? I don't know. Probably a couple of thousand, cause I've seen so many people over the years and I know there's people wonder about it and think about it and gossip about it. Ultimately, I can't do much about that.
Speaker 0 00:23:19 Right. I'm talking about the people that you have told that you have Ms.
Speaker 2 00:23:24 Oh, a couple hundred, at least that would be at the most.
Speaker 0 00:23:27 Do you think telling people that helped you or hurt you or
Speaker 2 00:23:32 I don't think it hurt me. Well then how did it help? I don't think it, I don't think it made a big difference because if someone, if it would be a benefit to my relationship with someone to tell them, then I would, I don't talk about it when it comes to dealing with clients, because I think that sort of projection is not reasonableness as a professional. I don't talk about myself in the counseling, even though it might help them to understand that, like I identify with some things I don't do that. Cause that muddies the water in terms of the professional clinical relationship, in terms of people in my personal life, my family, I remember when my kids were young, I made a point of not telling them about my Ms until I thought they were old enough to get it and being a little kid or an adolescent is tough enough.
Speaker 2 00:24:17 Anyway, the last thing that needs is to worry about something that seems kind of overwhelming and frightening. And I waited until the kids were 12, 13, something like that. And then I talked with each of them individually about it, to give them an idea about what the Ms is and how it affects me and how they may see it. Even at that point though, they weren't seeing that much because my symptoms were not that obviously, uh, identifiable, but I didn't mind to be surprised about it or be held in the dark about it. But I told them about it. And I did. I waited until they were old enough to digest it or make some kind of sense out of it.
Speaker 0 00:24:52 You tell so few people about it. And now you're talking about it on a podcast. Why are you talking about it on a podcast? If you don't like talking about it really at all?
Speaker 2 00:25:05 I think it might be of some help maybe to some folks who've got, who've got us or who are other folks who are struggling with other personal difficulties that either may be embarrassing or frightening or doesn't read about may help them to come to some level of resolution with it.
Speaker 0 00:25:23 Well, you've come to the right place. And thank you for being here from the bottom of my heart. Thank you for being here to tell your story tonight, because I know you're going to save a life tonight. I, I literally mean that if someone is struggling, maybe not with Ms, but with a disease, with a virus, with something that is incurable and they want to end their lives because they don't see the point in living anymore. I guarantee you, you will save that person's life. So thank you for being on authentic and being authentic.
Speaker 2 00:25:59 Well, thank you. I appreciate the opportunity.
Speaker 0 00:26:01 Hey, we are going to take a short break. And when we come back, TJ is going to talk about how he got some H E L P hair.
Speaker 2 00:26:11 <inaudible>
Speaker 1 00:28:07 Welcome back. Welcome back. Welcome back. No, this isn't Mr. <inaudible>. This is authentic and we are talking to TJ about his asthma, multiple sclerosis. He just talked with us about his experience. TJ, let's talk about how you got some help. Finally. Jeez, you alluded to, or at least you talked about in the experience portion that you were given the diagnosis and you did some researching, you did some digging. What did you find out about how to address your Ms?
Speaker 2 00:28:44 What I found out was I needed to take care of myself in terms of diet, exercise, weight, and rest. Before I was diagnosed with the Ms. I had gone on a diet and I lost about 75 pounds. I had been uncomfortable with my weight for a time, so I lost the weight and I'm, I guess, unfortunate that I lost that. I lost it because excess weight is a drain on the body and the nervous system. So I had lost the weight and that kept my weight even ever since then. I'm about a hundred pounds less than what I was at my peak. So I also, I didn't drink excessive. Like I don't have an alcohol problem, but I was a freshman in college and I was doing stupid freshman college drinking crap. So I, I gained a lot of weight. Then I had, uh, I drank too much, but I, part of my weight loss, I dramatically cut my alcohol use cause I was getting sick and tired of it.
Speaker 2 00:29:33 Anyway, since then, my alcohol use has been average to minimal. It's not a big deal in my life and it never has been. So I, alcohol drugs are not a part of my life. My weight, I maintain my exercise and work out regularly for quite a number of years. I was a runner that helped a lot. I never thought I would run, but once I started, I really got hooked on it and I didn't run a lot. I didn't run excessively, but I would run about, uh, three or four miles, three or four times a week and kept me in great shape. It felt wonderful. I think it helped me in terms of my Ms. It's a great place to get out and be alone. I didn't wear headphones. I just walk and run and think and pray and dream about a vacation. Then just nice, quiet in time. And with, especially with the kind of work I do, it's nice to get away and just not cure anything that is extreme. I also meditate. I took some training in something called biogenics, which is like biofeedback, about a biofeedback machine. And I used to do aloud training of people in the treatment programs. I ran how to do the biogenics and I do it myself to bring down the overall stress levels and nervous system tension.
Speaker 0 00:30:47 Can you explain that briefly? What is biogenics?
Speaker 2 00:30:50 Oh, genics is closing one's eyes and focusing concentration on a body process. For example, a med closing your eyes and imagining your feet to be becoming extremely heavy and comfortably warm and focusing on that perception to the point where you really begin to feel it. And it's maybe four or five, six minutes on your feet, then move up to the legs and repeating quietly to oneself. For example, my feet are heavy and warm to help keep your mind focused on it because it's too easy for the brain to get flipped up and thinking about something else like needing to pick up gasoline or whatever it is
Speaker 0 00:31:26 Like some sort of some sort of mantra, if you will.
Speaker 2 00:31:29 Yeah. It slows the mind down it. The point is to try to slow down brainwave activity. The point is to focus on something, whatever it is, you focus on your finger, just look at it and focus on it. What will happen is that the brainwave cycles and your brain will start to slow down your head. Won't be bouncing all around. A lot of the folks who I work with who are anxious, one of the best things they can do in terms of their anxiety disorders, or if they have sleep troubles is to do a meditation like this and focus on something. Another thing that I did was I got back to my faith and I was raised Catholic and I was an alter boy till I was out of high school and all that sort of thing. In any event, I had fallen away from my faith and I'd got back to it in my thirties, early forties. That's been a big help to me, my faith. It helps me to become, it helps me to focus. It helps my sense of trust and belief that things will work out just fine. My faith is a big part of my life.
Speaker 0 00:32:20 What did your spirituality look like when you first got diagnosed? And you said you didn't really come back to your faith until you were in your late thirties, early forties. What did your spirituality look like between that time between your diagnosis? And when you came back to your faith, as you said,
Speaker 2 00:32:40 It doesn't look like much. I didn't do much. I was, I still believed in God that I was not practicing my faith. I wasn't praying. I wasn't closing my eyes and looking at God and thinking about him. I was just kind of doing nothing. It was on sort of the back burner. I, I believed, but I was not, uh, active in my faith or my prayer life. It's not like I'm genuflecting all over town now and being a preacher. But what I do do is when I lay in bed at night, I, I pray silently, but I'm dealing with people in therapy. Oftentimes I'll talk with them about their faith life, whatever faith they're in their call. What I found over the years is that anyone, anybody who's experiencing significant personal troubles, if they don't have some level of faith on some level, they have a much tougher time handling life's crisis, not like an absolute, if it just seems to work better.
Speaker 2 00:33:29 Faith was part of what helped me on my exercising, my diet, some of the people that I talked to, one thing that was a marvelous is that I, at one point I met a woman. It's a woman who I'm married to. Now that made a big difference too, in terms of the focus and strengthen that relationship, her faith quite frankly, was strong. And that helped me as well. Having someone of that strength fall in love with me and me with her was marvelous. That relationship helps helps me a lot in terms of my own personal sense of comfort and support.
Speaker 0 00:34:04 And at what time during that relationship, did you disclose to her that you have Ms.
Speaker 2 00:34:12 Uh, after she and I started dating and we kind of fell hard for each other fast, we really kind of were head over heels. I think it was like the second or third time we went out and I said, things are really moving fast with you and me, but I want to tell you that I've got Ms. And I explained to her what it was. I said, you need to know that because before you get too deeply involved, I want you to know, know what you, what you've got. And she said, I understand, thank you for telling me what's keep on. So it was an immediate acclimation or acceptance, and she's been a marvelous support ever since. Unfortunate.
Speaker 0 00:34:48 What kind of response you got from most people that you told about your diagnosis?
Speaker 2 00:34:52 Most folks say, gee, I never realized it. At least before my symptoms became obvious. I never realized it. How long have you had it? Why it's a raw deal. You really handle it well, good for you. People are marvelously supportive. And now that I'm somewhat more impaired in terms of I use a Walker and people will hold a door open for me, most people are so gracious. I don't find people to be snotty or small about it. Most people are very non-judgemental gracious and pleasant. I really appreciate that.
Speaker 0 00:35:21 Talk about treatments. What sort of treatments that you started when you had your diagnosis? What were those first treatments like? Were you taking medication? Were you, what, what did that look like?
Speaker 2 00:35:34 The early treatments were medication, oral pills or pills, and they worked, I'd have an exacerbation. I go to the neurologist, he do the exam, he prescribed the medicine. And within three or four days, the symptoms would dissipate. And within 10 days NAF a couple of weeks because you can't stop the pills right away. You have to slowly downgrade the toxicity. So you don't have a detox problem in any event, it would work. And that on that way for Florida, I bet you, 20 years, I thought I could, you know, I'm never going to be disabled. I've got this licked. And it worked that way for a long time. And then those medications were helpful. They had some side effects, but not dramatic after a while. Those stopped having the same effect, partly because, uh, my DMS was progressing and I tried different medications. One thing I, I did once I went to a test they were having on hyperbaric medicine. Hyperbaric is when you go into hyperbaric chamber, like you go into after you've. If you come up from under water to quickly keep you from getting the Benz, it's a big chamber in the chamber. They crank up the pressure, the barometric pressure are
Speaker 0 00:36:40 You in air or in water? What I'm having a hard time.
Speaker 2 00:36:46 What happens is you go to hospital, you go into, it's like a big chamber and they close it. And then they, they crank up the pressure in that chamber, put on a mask and I'm taking breathing 100, 100% pure oxygen breathing. 100% pure oxygen under twice, the normal atmospheric pressure. The theory was that that would help the nerves. And it worked. There is no nothing I ever did that worked as well as that, but that was a research project. And the researcher said, well, it didn't prove its validity. So it was not okayed for insurance coverage. And that's a shame.
Speaker 0 00:37:24 What did that do to you emotionally when you heard that it was being discontinued in that you could no longer use that treatment?
Speaker 2 00:37:33 I was irritated. I thought this doesn't make any sense. My opinion. And this is only my opinion was that, uh, the drug companies didn't didn't want that to work because drug companies, some are good. Some are not so good. Some make a lot of money and maybe it's truly the research findings were that it doesn't have enough validity that they could authorize it. But for me at work, it was a shame I did here. I did some research and I did hear that there is a treatment facility. I think it's in Florida where they do hyperbaric treatments, uh, even now, but I know insurance has not covered that. So it was disappointing. So I've tried everything else. I could, I, every time I knew a new medication comes out, uh, I try them some work to some degree. Some don't some have side effects that are unacceptable. Most of them don't do much. I'm at a point now where I think I'm in the progressive stage of the Ms, not the exacerbating and remitting it stage like it was in the early years, but now more progressive. One of the sad things for me about Ms is they don't have anything which repairs, previous nerve damage, and they don't have any cure to stop on-coming exacerbations from happening payment assets for 50 years. And they're still think got some, they've made some progress, but not, not an awful lot. That's a damn shame.
Speaker 0 00:38:49 Why do you keep trying these new things? Why not just give up?
Speaker 2 00:38:55 Cause I've got faith and hope and I'll tell you, that's where my faith helps me. I got faith that everything will eventually work out for the best in the end. And I trust that what happens, happens for a reason, whether I can see it now or not, that sort of commitment as well as that personal prayer helps me deal with some of the frustrations, but also it keeps me coming back for another swing at it. And for the next thing that comes up or continuing to do my exercises or whatever, giving up, it's not in the, not in the cards.
Speaker 0 00:39:24 Ms taught you balance balance of life, emotionally, spiritually, physically, mentally. It taught you balance at a very young age, which is highly uncommon. How have you used that knowledge and that feeling of balance to help others?
Speaker 2 00:39:49 Uh, I think I can, I'm far more tender and responsive to the whole idea of the sense of powerlessness and coping with, uh, dramatic personal difficulties that they didn't have coming. The sense of sadness and fright when some of those stronger parts of their, of their life start to weaken and fall apart. And the joy of really getting a hold of a certain part of, of your life that you thought you were powerless to affect any change on. I personally get a lot for myself out of what I do for a living. It feels marvelous to know that I've really touched and helped some people. I just got a Christmas card from a lady who was in a treatment program that I ran two or three years ago. Now, three years ago. And in the Christmas card, she said, I am now clean and sober three solid years. You touched me so deeply that you know, that sort of thing. It's just marvelous to get that sort of thing. And I'll tell you, I get a lot out of that. I get a lot of the emotional payoffs that I have, what I do for a living
Speaker 0 00:40:44 On a daily basis or at least intermittently. Do you feel shame when you are out in public with your disability or your difficulty better worded your difficulty physically with your walking? No. Why not?
Speaker 2 00:41:03 Because it's not a right or wrong thing. It's simply the reality. I got frustration that I'm not as agile or as mobile as I used to be. That's irritating. I'm not as you're irritated with and frustrated with some of the incapacitation is what I used to be, but it's more of an irritation, certainly not, not a sense of shame or humiliation because it's not, it's just what it is that as I said earlier, I think I'm fortunate. I think I'm fortunate that I am not born incapacitated than what others who may have. This are, as I said, some people who I went to a different programs I was in were dramatically incapacitated at a very young age, twenties and younger. And I'm not, I mean, I'm 70 and I'm mobile and I get around and I travel. I plan to keep up. I keep up with that.
Speaker 0 00:41:45 What would you tell someone that does feel shame that opens up to you and says, TJ, I have Ms. Like you, every time I go out in public, I am ashamed of how I show up physically. What would you say to that person that is feeling shame because of their Ms.
Speaker 2 00:42:04 I think I'd try to steer more toward taking a sense of pride, that they are surviving a significant illness as well as they are, because most folks who have a, any sort of significant medical diagnosis, many, I don't know most many folks have a significant medical diagnosis do not cope well with it that tends to exacerbate the problem. And I think that worry and anxiety about the severity of whatever the melody may be tends to speed their decline. I think taking a sense of pride that they had the courage to say enough, I got to get something done. I think that's one of the biggest things that folks who struggle with either mental health or substance abuse or significant medical diagnoses struggle with coming to the, their own moment of truth to say, look, that's enough. This has got to stop. I've got to accept the reality of it and start handling it. That's a big deal. So I think taking some sense of pride in coming to a genuine acceptance of what they're living with, how to handle it.
Speaker 0 00:42:57 What does your treatment look like on a daily basis? Can you walk me through what that looks like today, literally today? What did your treatment look like today? The medical treatment, the medical treatment, we can start there. Sure.
Speaker 2 00:43:11 Not much because most things don't work anymore. I take some medicine to help minimize muscle spasms in my legs and that's it. Yep. No other things that I do. As I said, I do meditation. I do exercising. I walk as much as I can. It's more difficult than winter. I don't want to take a slide, a slide. And I'm cautious because my balance is poor. I'm cautious to be, be certain. I don't fall because if I fall, I could hurt an elbow, hurt a wrist or something like that, which would then make walking all the more difficult. So I'm cautious going up and down stairs and I'm cautious walking. So as not to take a spill,
Speaker 0 00:43:51 What would you say to a person that was diagnosed with Ms. Today? Five minutes ago, I left the doctor's office and they told me that I have Ms. What would you say to me?
Speaker 2 00:44:06 I think I would, uh, tell them how sad I felt for them, because it's a difficult thing to hear. And it's frustrating as all get out because they didn't have it coming. I would tell them that they need to make changes in their life in terms of the lifestyle, in terms of rest and alcohol drug use the way they cope with our stresses, kind of shaped her. And about the lifestyle changes they had to make to help assure they have a slower progression as possible. And that, uh, they quite frankly take advantage of whatever current or new medicines come out and pay attention to what the research says, read about it and learn something about it. So it's not to be mortified or surprised by facts and to say their prayers as Hollywood, Hulk, Hogan would say, take your vitamins and say your prayers. We're going to take a little break. And when we come back, TJ is going to share his H O P E
Speaker 1 00:44:56 <inaudible>. He's going to share some home. <inaudible>
Speaker 2 00:47:00 Welcome back to all for NERC, where TJ is most certainly getting authentic. All right, TJ, we've made it to my favorite segment of the show where you talk about my favorite four letter word. No, it's not. Fuck it's H O P E hope. What sort of hope do you provide to those with Ms. Hope that some effective treatment comes into play. As the search goes on all the time, I'm con I'm convinced something will happen in terms of a, something to retard the progression of the illness. So it doesn't need to keep on for a person who is isn't as incapacitated and hopefully something that will, uh, repair nerve damage. A lot of times, those sorts of findings come up in research, uh, for other things by chance. And that's something I pray for all the time. So I'd tell that person, keep the hope up. Don't ever give up the hope and pray for the right thing to happen at the right time.
Speaker 0 00:48:01 TJ, what scares you the most about your Ms?
Speaker 2 00:48:10 My inability to stop the vague, vague progression that's going on right now?
Speaker 0 00:48:15 What does that make you feel? How do you feel
Speaker 2 00:48:19 Frustrated and irritated? Cause I usually get done with what I need to get done in my life. And this is one thing that I don't have the level of control over that I've got control over much of the rest of my life. So it's irritating.
Speaker 0 00:48:31 If you could have cured your Ms. 50 years ago, would you have done it?
Speaker 2 00:48:38 Absolutely.
Speaker 0 00:48:40 Do you think you would be the person you are today if you did cure it 50 years ago?
Speaker 2 00:48:48 No.
Speaker 0 00:48:50 I asked you again, would you have cured Ms. 50 years ago? If you could.
Speaker 2 00:49:01 I probably would have back then. Cause I didn't know what, uh, what benefits would come from it nor would I have believed it. Are
Speaker 0 00:49:08 You grateful that you have Ms?
Speaker 2 00:49:11 No. I'm grateful that I've handled it out, how I have and that the other blessings have come to me. He said because of it or in spite of it, it has been, uh, it's good for humility and it's good for the faith because something like this,
Speaker 0 00:49:30 That's very well said. I like that. You didn't bring it to the Ms. It always comes back to you as an individual. It really has nothing to do with Ms at all. Does it?
Speaker 2 00:49:42 No effect. I made a point of early on that. I would not define myself as having that. I have Ms. It's something it's illness that I have, but it didn't define me.
Speaker 0 00:49:53 So you are TJ who just so happens to have Ms. Yep. Not TJ. That's the guy that has Ms. You know,
Speaker 2 00:50:02 Which is one reason why I don't talk about it a lot, because I don't want that to be the defining characteristic of how people see me or my relationship with them if it's there. And now that it's become more debilitating, it's obvious. But even at that, that's not the prime focus of what I am with the relationships I have. It happens to be there. And that's reality and that's life in the big 10. That's pretty much it
Speaker 0 00:50:23 Ever considered getting involved with Ms. Awareness, any sort of those movements.
Speaker 2 00:50:29 No, I find a lot of, a lot of the people involved with it are kind of overwhelmed by it and passive to it. And some get into a rather strong victim mode. Not, I don't want to do that.
Speaker 0 00:50:41 That's so interesting because if you think about other awareness movements and I'm thinking specifically of cancer awareness, go get a mammogram or go get a colonoscopy, things like that, but not with Ms. I find that interesting, not only because cancer is a quote unquote for the most part curable disease, Ms. Is not, it's a much quieter disease, isn't it?
Speaker 2 00:51:10 Yep. And most of the other illnesses that you mentioned have aggressive, effective treatments. So they don't have that with them. Or they've got some, some things to help dull some of the symptoms or slow the progression, but in terms of really kicking it and making it have, they don't have much frustrating.
Speaker 0 00:51:28 What do you think is the most important piece of your Ms of TJ having Ms. What do you think is the most important piece of that that helps you to help your clients with their struggle?
Speaker 2 00:51:44 I think coping with the sense of, uh, frustration at getting something you didn't plan to get or deserve to get, or were prepared to handle sort of grieving the loss of normalcy. One reason why I've tried to make a point of keeping my life as unaffected by undefined, by and not impaired by the Ms as possible. It's not the whole shell, it's not my definition, but it's part of the, part of the deal.
Speaker 0 00:52:09 Did your grieving process look like?
Speaker 2 00:52:13 Oh, I did some yelling. I did some crying early on and resigning my self to make some changes that I had to make, which turned out to be a benefit to me. But at the beginning, I didn't see that.
Speaker 0 00:52:31 And what is your grieving process look like today?
Speaker 2 00:52:35 I always hold out hope for some sort of effective treatment to deal with current symptoms, to stop progression or to maybe repair a previous nerve damage. I always hold it, have that hope and I pray for it daily. And I live my life in a way so that I stay as mobile and unimpaired as I can, as long as I can. So when something does come up, it's not going to be too late. It's something I always think about. I mean, I got to watch how I don't fall when I walked on steps and so forth, this sort of an undercurrent of by maybe someday. And I pray for it.
Speaker 0 00:53:11 Ms. Is identified as a clinical disease, correct?
Speaker 2 00:53:18 Absolutely. You
Speaker 0 00:53:20 Work with people that are, as you said, addicts, alcoholics, do you think that addiction is a disease?
Speaker 2 00:53:31 Yep. Why? Because the way someone with an addiction reacts to mood-altering chemicals is different than someone who doesn't have the addiction. Alcohol. I don't believe causes alcoholism because look, all the people who drink them doesn't cause the trouble. However, if an alcoholic drinks things go off off the deep end, I think addiction is a highly inheritable genetic disease. The person who has the addiction decent, number one, stop drinking for anything can happen and then begin to work on the issues they need to work on in their own life to get into a strong, healthy recovery and avert a relapse. It doesn't mean they're cured, but they're recovered. Progressive incurable disease is what addiction is. So as Ms. It's progressive and it's incurable alcoholics, don't become alcoholics on purpose and people with Ms. Don't get that on purpose. So there's a lot of similarities in that vein. There are some obvious clinical behavioral differences, but still those core issues are the same.
Speaker 0 00:54:31 You view yourself as being recovered or in recovery.
Speaker 2 00:54:39 I'm recovered, not cured, but recovered. And why are you recovered? Because I made the decision a long time ago that I needed to accept the reality of the illness for what it was as opposed to denying it or minimizing it. I sort of came to my moment of truth. Like, that's it, this is the reality of it. You got to handle it don't point and dancing around the symptoms or denying the reality of it. And I think that's what happens for most folks on addiction as well. Once they come to their moment of truth, they can finally begin to get into a genuine recovery. And most folks with addiction need to go through quite a few bumps and bruises before they get there. For me, I needed to experience the dramatic symptoms and loss of control. If the EMS brought on to really bring myself to the point of coming to that emotional acceptance, man, I used to work for would always say, if you're struggling with acceptance, he said, you've really said, you know, the only way to get back in control is to give it up. He said, you know, until you finally come to the point, when you say I can't handle this, I got to quit this fruitless venture. I got to make some changes. You're not gonna make any changes. The sad thing about a lot of folks is they end up dead before they ever come to their moment of truth or what they call on the program, the surrender process, that's where there was some real freedom,
Speaker 0 00:55:50 Most important person in your life, or who was the most helpful at the beginning of your dealing with your IMS? Was it a doctor or a therapist, a friend.
Speaker 2 00:56:02 It was a friend of the man. I told you who had broken his neck him. Cause he did it. When he snapped his neck, they didn't give him a chance of living over night. And his dad did everything he could for him and with him. And he slowly pulled himself around. And even after he had stabilized, the emotional trauma was dramatic. And I think he was a miraculously powerful man. He never got up out of bed again, but he got several patents in the us patent office. He developed his own telephone answering service business. He was a bright, talented, successful man in spite of being incapacitated, he was something.
Speaker 0 00:56:41 What would you like to say to him today?
Speaker 2 00:56:44 I love you. And I appreciate you. And
Speaker 0 00:56:46 What would you like to say to your wife who accepted you and your disease completely?
Speaker 2 00:56:53 I am grateful to you, sweetie. And I love you. And I am fortunate and we've got a darn nice life.
Speaker 0 00:56:59 CJ, what do you want your legacy as a human being to be?
Speaker 2 00:57:04 Oh, that I treated people well, and I was honest.
Speaker 0 00:57:07 That's it? I'm sorry. I don't think I've ever had somebody come up with it so quickly and have it be so basic that
Speaker 2 00:57:20 I lot more through it also that I've got a good sense of humor. I can tell that too. You
Speaker 0 00:57:26 Can tell, even though this is some very heavy subject matter, it's great that you brought it down to really that, that quick answer is that you were honest and that you treated people well, isn't that life don't you think?
Speaker 2 00:57:43 Yeah. That's kind of the way it is. Everything else is just so much over analysis. And I do analysis for a living in psych.
Speaker 0 00:57:49 Trust me, I'm an addict. I get where you're coming from. Yeah.
Speaker 2 00:57:53 I got to give it a rest. All right.
Speaker 0 00:57:54 Now we're going to have a little bit of fun. Are you ready? Yep. Do you think, I say fuck too much. Do you think I say fuck too much on my show. You've you've listened to my show, right? Yes. Do you think I say fuck too much. Sure. Well fucking authentic. Jeez.
Speaker 2 00:58:16 I don't say it much. Well, that's good.
Speaker 0 00:58:18 It's not very becoming of, you
Speaker 2 00:58:21 Know, I think that
Speaker 0 00:58:23 Much fancier than I are you ready? I think that I have the best sign offline in the world. Any podcast or any DJ? Anybody? I think I have the best sign offline. You know what it is, right? What is it be good to yourself?
Speaker 2 00:58:43 Yes. It's important.
Speaker 0 00:58:45 Now. I would like you to give me your own sign offline for this show. Okay. So before I give my line and uh, you know, kill it, closing the show because I'm awesome. I want you to do your best to top mine. So TJ, what is your sign-off line?
Speaker 2 00:59:05 No, there was a friend of mine who I have fabulous sense of humor and his phrase when he was leaving, always was do your best. God will do the rest. Um, cause he had that drummed into him by the nuns in grade school. And he made a joke of that. So yeah. Do your best God will do the rest and in, that's got a lot of meat to it, but back then when I was a kid, it was the joke. So yeah. Do your best, God will do the rest
Speaker 0 00:59:29 And as always be good to yourselves. It is ever so important. TJ, thank you so much for being on the show today, getting vulnerable, sharing, some hope sharing solutions, sharing you. And I know that you've saved a life tonight, so thank you.
Speaker 2 00:59:52 You are welcome. Thank you. I appreciate this.
Speaker 0 00:59:56 All right. Are you going to hang up or do you want me to hang up? Shoot. Should we hang up at the same time or we could do that. Do you want to do that? Do you, should we count to three? Should we do it? Do it on three or one, two, three, hang up. Or should I do it on two? Okay, you're ready. We'll we'll we'll surprise each other one on two and as always be good to yourselves. It is ever so important. Always here on authentic and keeping authentic. We have to pay credit where credit is due. Therefore the musical stylings you add on today's program to kick us off. You always hear my, my, my, my, my, my, my, my mind madness by muse. Then we got into T J's to first break. You heard already gone by the Eagles. And at the second break, you heard green onions by Booker T and the <inaudible> long cool woman in a black dress by the Hollies. Pretty pretty sure I know who TJ is. Dedicating that one too. Oh yeah. Go ahead and be good to yourselves again. It's important.
Speaker 1 01:01:53 <inaudible> <inaudible>.
