Listen to the audio conversation and learn more about Ken here.
Ken: It was dark out. There was a chunk of ice. And I thought I had it, walking around it. And I didn't. I had my walking stick with me, but my foot hit it. I went down. Luckily I-
Jen: Oh no. You were live?
Ken: Yeah. And I was live on YouTube right now. This happened. And I told everyone, I'm like, I'm okay. But I was down.
Jen: I’m Jen Gann, and this conversation was produced by AllStripes, the leading research platform designed specifically for rare disease. It’s part of our ongoing content series about the rare community.
Today, I’m speaking with Ken, a YouTuber whose family has been impacted by adrenoleukodystrophy, or ALD, a rare disease that leads to progressive neurological symptoms.
Ken: These days, just getting back up without some type of assistance, even with the cane, is difficult. I could do it with the cane. But luckily where I fell, there's a business that had a work van there that I was almost right next to it. I was able to get over and get back up. But I have all the people in the chat were like, "Should we call 911?" Everyone's like, "No, we heard him say he's okay." You know?
I always have people watching me too. But they get it, they're concerned. But as much as we don't care what other people think, we don't want to draw attention to it. We want to be normal too, so to say. I've always got them watching out for me too, when I'm tripping over ice bags, but yeah.
My name's Ken. I am 37 years old. I live in central Pennsylvania and I have AMN. I work full-time. I am a CAD draftsman. I work for a modular home company, located here in the Eastern US.
I started my YouTube channel back in 2013. My name is The Lotto King. I was actually inspired by, I've been a gambler since I turned 21. But I had friends in the space that were doing slot videos. Like they would go to a casino, you play a slot machine, you get a bonus, you record it. They were uploading those videos onto YouTube and they were actually making money from the monetization. So I thought to myself, I'm like, well, and at the time a lot of casinos weren't cool with that. So I didn't want to have to go to the casino, look out for security.
So I'm like I can scratch lottery tickets in the comfort in my own home. Which is what I started doing. And at the time, I really realized that there was others out there, which there were, very minimal. So that's how it all got started. And again, that was all before I knew what AMN even was. And so, I went with it. And again, I've been 2013. 2013, I did take about a year break. But other than that, yeah, since then, it's just evolved into many other things as well, but still The Lotto King.
Jen: Like Ken says, he didn’t always know what AMN was. But he was well aware of ALD, which can cause vision problems, deafness, difficulty swallowing, seizures, muscle weakness and dementia. His uncle had passed away from it, and his brother was actively struggling with the condition. Ken has adrenomyeloneuropathy, or AMN, the adult-onset form of ALD, which is milder and progresses more slowly.
Ken: We knew that there was a gene defect. We knew that it affected children, but none of us knew that it affected you as an adult. That's what I mean by that, that I didn't know what AMN was. I knew it was there and I knew my uncle had suffered from. But, again, I still didn't know exactly how that happened, what that was, until one day I sat down on the internet, started doing my research. Then I found out what AMN was. And even at the time, I was not seen by a doctor for it.
I knew my brother, when he was a child, he basically was going through, when he should be going through puberty, he was actually having growth issues at the time. And they finally pretty much figured out what it was. They actually put him on Hydrocortisone steroids. And at the time when you think of a steroid, a steroid makes you beef. It makes you all big and muscular. And at the time, all I knew is that the steroids actually did the job and he actually started growing normally. So I'm like, okay. And then he pretty much grew up into be, what I want to say? I don't want to say a regular person, but a person like me and you. Which he eventually, it turned into AMN, which eventually turned into cerebral ALD, and unfortunately he lost his battle.
I knew I had the gene defect, because I was tested for it when I was a child. But again, still never knew that was AMN. That this is what it would be.
My brother was pretty much exactly like me. As we said, we were nerds in high school. Nerds in high school. He actually went to school for computer drafting, which is pretty much what he went into as a career, when I followed in his footsteps. So I did the exact same thing.
And my first job was actually at the same company that he was actually working at, at the time. I think we were closer more than my other brother, just because, again, we shared a lot in common. But I think they're pretty much mostly the same. And then when I started watching him go into this AMN track, that's where we'd be. But yeah, that was Rod. He was a good guy.
It eventually got to the point, and then he was falling out of everywhere.
He was falling out of bed. He'd have to call my parents, say, hey, he was on the ground. He couldn't get back up. It just, yeah. And it just went from there and then it just got to the point where he just couldn't. At the time, they were more worried for his girlfriend, or the caretaker at the time, that she was going to hurt herself, or even my parents, from having to pick him up all the time. And so he moved into an assisted living home, which is pretty much where he finished his last couple months of his life.
At that point I was actually at the very beginning stages of going to Mass General as well. So yeah, kind of came. That was a little rough. At that point, he was actually with me when I went to a lot of my doctor's appointments, because he could relate and he knew. And I know he went to my first neurologist and stuff. And then when I got the diagnosis, yeah, he was still here for that. It was shortly after that, though, where it started to progress.
There's days now that I still wish he was here, that I knew that I could bounce things off of him and he would be like, yeah, yeah.
Jen: Do you remember much about that time, when you got diagnosed?
Ken: Yes. It sucked to put it bluntly. Because again, at that time, I still was left with, okay, I see my brother. I didn't have my uncle. And leaving the neurologist who really didn't know much, it left me walking out of there, like yeah, I'm going to die, basically. That was it.
It put me into a stage of depression. It wasn't a deep depression, but it was a depression that led me into different pathways. I’ve been gambling since I've been 21. I started gambling more. I was drinking more. Anything that you could cope, that would provide me some type enjoyment to take my mind off of it. And it was spending. And as I say it, the Tim McGraw song, Live Like You're Dying. If you haven't heard that song, go listen to it.
Jen: When I asked Ken what changed for him, he mentioned Catie Becker, a nurse practitioner at Mass General, where he received care.
Ken: Catie Becker, she got to me, I think. And she said keep your head out of the sand. What you're seeing elsewhere, it's not necessarily what's going to happen to you. And she's 100% percent correct. Because, at that time either I did my research, but it's still very vague. You look up the ALD, AMN a textbook, it's very depressing. And you're going to feel like you're probably going to die, sadly.
But then, it was at that point where I had that. And then I start getting involved with more social media and the community, just doing basic research that ... it was like a total 360. I went from I'm not going to die to pretty much I've always kept a positive attitude.
Once I started getting involved in the community, yeah, there was mothers who have young children with ALD. And obviously we share common things, them being carriers, or children. I think there's more of the curiosity thing too. This could happen. This is what could happen to my child. Everything hopefully goes well, they can live a normal childhood, which we're rooting for every kid out there, no matter bone marrow transplant or they're just asymptomatic. We're rooting for you to live your life. I definitely am.
They say ALD sucks, but the community is great.
Jen: You mentioned earlier, the mental health impact of getting a diagnosis like this and how it sent you into a depression and some things you did to cope, like drink and gamble. How do you manage having a YouTube channel that is about gambling, with knowing that it could go too far?
Ken: Obviously you have to know your limits. There's limits, specifically here in Pennsylvania, we have online casinos now, where I can sit right here at my computer, pull it up and I could lose everything, if I wanted to, right there with a couple clicks. It's very dangerous. And it's been out now for a couple years, and I'll be completely honest, I've told this story on my YouTube channel. But I got to a point where I was just, I mean, there were nights I would just sit in my bed with my phone and I would close my eyes because I wanted to go to bed. But I also, oh my gosh, I could get a bonus.
If I lose $20 or $30, you know what, I can afford it. I had a little bit of fun. But overall with my YouTube channel, yeah it does come into play. Because again, I do so many different things. Lottery tickets, we have this and that. But it's hard to manage. Obviously being on YouTube, I'm monetized. So I do make a small cut from the ads that play at the beginning of my videos. So that helps. A lot of times, as long as I have a good month, that pretty much covers the majority of my gambling. And again, the YouTube channel was good for me and it's still good for me because it keeps me busy. And again, I work a full-time job. I work anywhere between 45, 50 hours a week.
So between that, my YouTube channel where I'm live a lot of nights, I don't have time to sit down and dwell that I have AMN, I have this. This could happen to me. I feel like a lot of people that don't keep themselves busy, that can really hurt the mental end of it. So I look at that too, as if I do have a bad week or something, I'm like okay but I'm still keeping my mind off of this and I'm still going on. And also, I always say I can't take it with me.
To put it into perspective too, when I first learned all about this at my job, I was putting a lot of money in to my 401k to look at retirement. And when I very much felt like I was going to die, I'm like why am I doing this?
I'm like, I might as well spend the money now because you can't take it with you and I might not make it to that point. And I did that. I just cut back. I cut to the bare minimum that my company would match, which is weird. But the people in the accounting department, they're like, "We understand what you're saying." As I say, live it while you got it. Well I'm living it while I got it. I'm just going to spend the money now. I mean it having AMN, yes, I could live to retirement age. There's people that do live to retirement age. Maybe I'll regret it later, but I'm a gambler. I'm rolling that dice of having a good life now, just in case life's not better later. But again, I don't live day to day like that overall.
Jen: What do you think about, when you think of your future?
Ken: Obviously I would hope that I could live. I mean I have my issues, but I would be happy to live in my body right now until I'm 60, 70. So that's what I look forward to. But at the same time, it is a big cloud of the unknown. But again, I don't dwell on that. It may be what it'll be, but I'm living while I got it.
There's like the survivors’ guilt. Why did I skip that part? Why did I not have the issues as a child and deal with it as a child? Why was I kept here until now? And so say, who knows? Maybe you were kept here until now to do this — research. To potentially change someone's future. Like, okay. Yeah. I'm here for that. Sign me up.
Jen: You can learn more about AllStripes by visiting our website at allstripes.com. This conversation was edited by José Vadi, and produced by me, Jen Gann, along with Ken Dieffenbach. It’s dedicated to the memory of Rod, a very good guy.