Multiple Sclerosis (MS) - Day in the Life with Bobby Small

We sit down with Bobby Small to talk about living with multiple sclerosis (MS) and what it’s really like day to day. Bobby shares his diagnosis story, how MS has affected work, energy, and routines, and why transparency and self-advocacy matter. They also discuss disability identity, hobbies, and practical takeaways for listeners navigating MS or supporting someone who is.

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BOBBY 0:01

Yeah, I mean, I think you know that for me, the big takeaways, if you're, if you're, you know, if you are faced with a situation, whether it's MS, any type of disability to your daily activity, I mean, I, I, you know, the thing that helped me the most was to demystify it, was to learn. You know, I didn't know the, like I said earlier, I didn't know the term MS. So demystifying it helped me to understand. Finding the resources to understand quickly what you can, cannot do, where you should go, what the true broader picture is, is important. And that'll help you get to the second thing, which is just to regain, you know, the life you want. I mean, you mentioned there's no, there's nothing that anybody with any disability can't do. I mean, there's too many examples of people who play guitar who have no arms. It's like, yeah, that's awesome. They learn how to do it a different way.

TAYLOR 0:52

Welcome to the Accessible Community Podcast, where we will be exploring disability, aging, and accessibility through lived experiences. Join us to deepen your understanding in these areas, and for show notes, you can find them at accessiblecommunity.org slash podcasts. Be accessible and be inclusive. Welcome everyone to another episode of Day in the Life. And as you know, we talk about a different disability each month. And this month we are talking about multiple sclerosis or MS. And today I have my first guest in this in this month, Mr. Bobby Small, and I'm going to be turning it over to him in a moment to introduce himself. But as usual, a quick accessible introduction for myself. My name is Taylor Dorward, and I'm the host for this series. And this is a podcast brought to you by the great people at Accessible Community. And I am a white male with short brown hair, a short brown beard, blue eyes. Today I am wearing a white t-shirt with a denim colored flannel layered over top. And my hair is a little messy today, but I'm kind of digging it right now. So we'll see. And selling my hair as a blind individual can be a bit challenging. So it's looking good, man. I'm gonna I'm gonna thumbs up that. All right, nice, nice, good to know. All right, so with that, I will go ahead and turn it over to my guest, Bobby, and let him introduce himself.

BOBBY 2:27

Appreciate it, Teddy. My name is Bobby Small, and and to just to follow up that accessible introduction, I'm also a white male. I've got a graying beard. I won't say how long it's been graying. I'm wearing a a cream-colored sweatshirt, hooded sweatshirt, and an orange and gray MS hat. And behind me is a bunch of records and and nonsense on my wall on my countertop. So I'm I'm down with the with the knickknacks.

TAYLOR 2:59

Nice. I I totally get that. I I also have quite a bit of records in in my office or room as well. It's kind of multi-purpose. Right. We have love collecting records and all that those kind of knickknacks, so I I get that. All right. So can you that was a wonderful accessible introduction as well. But could you just start off by telling us a bit about yourself, who who Bobby is, and yeah, maybe a little bit about what you do and just what makes you you.

BOBBY 3:29

Yeah, so currently I've been in the Dynamics channel, which is where I met Taylor. I've been doing work in the Dynamics 365 channel since 2000, since about 2002. started with a product called Xapta, and have kind of used every version of that software up to the point where I was with a partner in the channel and at some point jumped into the community, and that's where things really started to connect for me. And so I've been a part of the dynamics user community for about 15 years now and leading different groups locally in Colorado where I live or nationally and travel globally to support the the software and the in the community. So I love doing that, and and it turns out I was able to find a job doing that in the community in 2024. So I've been working for an organization called Dynamics User Group or Doug. People love it when I say I work for Doug, and they're like, oh, is he nice? He's like, he's a pretty good dude. I mean, you know, he's got his ups and downs, but you know, Doug's okay. So I've been doing it, you know, for the community for the last year and a half. And and to be honest, it's one of my favorite jobs I've had. I mean, I love everything I do. It's one of the ways I approach work, is like if if you're gonna you're gonna be be at work, approach it with it with the opportunity to love it in that moment. And when you can't do that anymore, it's you know, that's the time to do some considering. But I love what I do for the community and and happy to be here serving the folks that we get to meet with and and interact with on a daily basis.

TAYLOR 5:00

Awesome. And that's wonderful when you get to enjoy your job to that level. So that's awesome. So for any viewers or listeners, can you give some more context as to what the dynamic space is?

BOBBY 5:13

Yeah, you bet. So this it's huge, obviously. It's Microsoft's main ERP system and kind of connecting connecting systems and stack on top of that. So this includes what are called ERPs or enterprise resource planning systems, which run businesses. They're your financials, your your production, your supply chain modules that are in in businesses, you know, and these are typically small, medium to enterprise level businesses, alongside of other software like the power platform, which now tacks on and allows you to expand and and and build off of those ERP systems. And then within that, you've got partners, ISVs, which are independent software vendors that are providing value. You've got your users and Microsoft and consultants that are all part of this ecosystem that get together in various ways, whether it's online or in person, to share and educate and network and learn from each other and and grow great relationships. I mean, I've been doing this, like I said, for 15 plus years and know a lot of people that I met in those first iterations of going to events and being a part of the community. So that's that's you know, in a nutshell, what the dynamics community is, supported by multiple communities, by the way. It's not just one, like we're Doug, but there's other entities that put on events and create space. Microsoft supports this community. So there's a lot that goes into this, and one of the best I've ever seen, certainly in the software industry.

TAYLOR 6:44

Awesome. Well, thank you a lot for that, Bobby. It's because I I feel like there's gonna be times later on their discussion where having that context will be very helpful for listeners. So thank you for that.

BOBBY 6:54

You bet, of course.

TAYLOR 6:55

So we talked about how we're gonna be covering MS or multiple sclerosis this month. So can you tell us a bit about what that means in your situation, what that means to you?

BOBBY 7:07

You bet. So I don't know if I'd heard that term before I was diagnosed. So you know, it a lot of people don't, although it's certainly becoming more prevalent. Interestingly, there's a there's a stat that came about a few years ago. For the longest time, there had been this consideration that there were hundreds of thousands of people living in the United States with with MS, which is a pretty small number. But because of just some advancement in understanding what the disease is, that number jumped in like one blip, jumped from a thousand a couple hundred thousand to millions of people in just the United States. And obviously that you know gets exponential when you get across the globe. There's a lot more awareness around this disease now than say when I was diagnosed or 20 2003. So it's been about 23 years since I got my diagnosis. So for me, it was just a a life-changing moment, and you know, set me on a path of learning about the disease and learning how to manage the disease. And and at a time where I was just starting my tech career, so it actually there was a lot, in my opinion, that was concerning to me. You know, with with the way the disease works and the the job I was going to be doing for my chosen career.

TAYLOR 8:26

Nice. Yeah, so you said about being diagnosed in 2023. Is that what you said? 2003, sorry, yeah. Oh, 2003. Yeah. All right, not sure if that was you or me. Getting the wireless point.

BOBBY 8:38

No, I I babbled it in there. I started a cycle, like I think I gave three dates in a row. It's like, you know, da-da-da-da-da. It was but it was 2003.

TAYLOR 8:45

Gotcha, gotcha. So, what was that process like? And once you got that diagnosis, did that kind of shed light on previous stages in life and illuminate why things may have gone certain ways for you?

BOBBY 8:58

Yeah. So for me, it all started on a Friday night. And this was Friday, it was around it was in January or February. Don't know the exact date, but sometime beginning of the year, January, February, on a Friday night, I was having trouble sleeping. And the best I could equate to it was my leg felt like it, like, you know, what people have described, and there's an affliction called restless leg syndrome. I just couldn't get my leg comfortable. And so I was just, it felt weird, and I just kept wanting to move it. And so Friday through Monday morning, I literally got very little sleep. Got to work on Monday and just was not feeling well. I just, you know, cognitively, I just was in a malaise, you know, and and just the little bits, bits and pieces that I remember very distinctly. Again, I just started my IT career. I was in a meeting with my boss, and she told me to do a bunch of really complicated things around a database. We were transitioning from JD Edwards into Microsoft Dynamics. So it's, you know, so it was kind of this transition period, and we were doing a lot of data workup. And so she's you know, you know, gave me all these instructions. And I went back to my office and I sat down, and it felt like forever. And I finally had to get up and walk back and say, Allison, I'm sorry, but you're gonna have to, if you don't mind, go over, I just am, I didn't sleep really well over the weekend. I think I've got sleep deprived, you know, depravity. Can you just, you know, help me, you know, refocus what you need me to do? And that kind of kept going. So finally, I said, you know, I'm gonna go to the doctor because this just doesn't feel right. It's maybe I've got this restless leg thing. I don't know. I'm gonna go see my, you know, primary physician. And that was like maybe like a Tuesday. So I had an appointment on Friday, and by the little things that I recognize now that I didn't recognize then, but little things. As I was getting to the appointment, I had to park, you know, and a couple streets away and go to the building. And I was running a little late, which I typically do. I was literally running to get to the office building, and I noticed my right leg was slightly the gait was wrong. Like I was, you know, it was dragging a bit, like I couldn't run with a full speed. And I'm a fast guy, and I'm used to my legs working in tandem, but this right leg just kept kind of, it was like I almost had like a limp to it. I didn't notice it much at the time, but now reflecting back on it, I was coming into a full-on MS episode and an attack. I was starting to get some numbness in my right arm. And so by the time I got to the doctor, I said, I don't know what's going on. I couldn't sleep, I haven't been sleeping well. Now I've got this, you know, I'm kind of limping, and I have this little numbness in my arm. And she did some, you know, just some tests up and down the arm to look for nerve blockage and other things. And interestingly, because when it comes to neurological issues, sometimes it's hard to diagnose because your brain is like, you know, this compact thing, but with a trillion things going on in it. So there's no way for, you know, there's no way for a doctor or a team of doctors to sometimes definitively say, yep, this is it, because it could be a thousand things. But she said to me, I don't think you have got a nerve blockage. I think you have MS. I mean, first thing out of her mouth, she's like, I've seen people. This doesn't feel like I'm seeing the normal, like when I tap here, you know, it just feels like you guys, I would go see a neurologist and have them do an MRI. So I set that up, did that, and then they did immediately see, and so you know, to give you know folks an idea, if you don't know, MS is an attack of your body on itself. And so your body feels like there's something in your system that is invading, and so your white blood cells literally go on the attack. And in MS's case, they attack your nerve, your nervous system, and they eat holes in it. They're called lesions. And so they just, wherever they are, they just start eating holes in your nervous system and create these lesions. And so when they did the MRI, they found I had lesions in my brain all over and in my spinal cord. Through all this, I was getting worse and worse. And one of the things that, again, just looking back on how I equate the story to people, just to get a feel for how it affects a body. At the time, I was, you know, and I still do, I take care of myself, I work out regularly, but I was lifting weights pretty regularly. I was going to the gym every day in the morning and and, you know, an hour and a half of, you know, workout routine with weights, sometimes heavy weights. So I was pretty strong. And, you know, you're not looking at me now, but I'm a short, compact person, about five, two and and about 125 pounds. So pull-ups are really easy for me. Strong upper body, low weight, so I can do pull-ups all day long. So at the time, I happened to be doing a routine of pull-ups. And I, you know, could typically do, you know, for a routine, I might do a couple hundred pull-ups, and I could clip off 40 to 50 at a time. So, you know, 40 or 50 pull-ups in a set until I exhausted out. So when my MS hit, you know, I obviously wasn't going to the gym as much for the for about a week. Went through all the doctor's tests and and and finally got this diagnosis of, yeah, you've got the lesions. They did a spinal tap as well. They pull fluid out, they look for an antibody that verifies it. In my case, going back to what I said, it was a quick diagnosis. Sometimes it can be years to, you know, decade before a person finally gets diagnosed with something like MS, but for me, it was a month or less. It was, you know, it was within a, you know, from the time I had my episode to the time I got the diagnosis was a couple of weeks. I went back to the gym for the first time after a couple of weeks, and I couldn't do one pull-up. So, you know, consider what's happening in your body now. My brain knows that I want to do a pull-up. I'm standing there, I've got the bar in my hands. I'm, you know, I'm, and, you know, I'm silently telling, I know what to do, a pull-up. I'm gonna pull. But when the brain says that direction to the muscles to do their thing, it doesn't get there. It hits all those little lesions along the way and gets confused and never makes its, its destination. So I went from doing 40 or 50 pull-ups at a time to doing zero. And that's it, but my muscles are still there. It's not like they atrophied, it's just my brain couldn't tell my muscles to work. And that's that's typically, you know, one of the ways that MS affects a person, physically.

TAYLOR 15:07

Wow. Well, that that's really interesting because I mean I've heard of MS, and I actually know a couple other people as well who have it, but I've never had a full understanding as to what that looked like living with it. So I really appreciate you sharing all that.

BOBBY 15:24

Yeah, yeah. No, and and like you said, it comes in all different flavors. My MS can be widely different because my lesions are in widely different places than anybody else's. So mine are affecting a certain part of my body, typically my right side, others might be their left side or just their legs or just their vision. I mean, there's it it just depends on where the where the damage and attack has occurred.

TAYLOR 15:46

Yeah, absolutely. And that's part of the reason why we're doing this, because disability itself is a wide spectrum, but even when getting to the more niche things like blindness or MS, they're their own spectrum. There are I can name like five different forms of blindness, and and like you were saying, there's very different ways depending on where the lesions are and how many, yeah, and how it can appear in in a certain person. So that's a really, really valuable insight. And thank you for sharing that.

BOBBY 16:15

Yeah, of course.

TAYLOR 16:17

So, how does that affect like work? I I know that you do a lot of work remote, but we also do a lot of conference stuff. So, how does your MS affect you in those certain environments?

BOBBY 16:31

Yeah, so that's that's a great question, and people ask a lot. And you know, from the beginning, I you know, because I am an analytical person, my first inclination was to learn everything I could about MS. So it's 2003, we didn't quite have the you know breadth of knowledge online that we have now. You know, certainly were search engines and there was you know information, but just not quite quite as developed. So I literally went old school and went, you know, joined a number of local groups and caught up with what MS is, what it does to the body, how it can affect, all the different things. I just, you know, I mean at the time, 2003, I have two small kids. One is three and one is one. sorry, one is five and one is three. So I've I've got two young kids. So I'm my thoughts are around, you know, as I'm reading about MS, and at the time, a lot of the publications, you know, they didn't know as much as they do now. But you know, MS has three or four distinct stages. There's a remitting relapsing MS, which is what it sounds, it kind of comes and goes, but it doesn't progress consistently. there is a progressive MS, a secondary progressive, which means it progresses, but it's but it's slow. And then there's a primary progressive MS, which progresses quickly. And so when I got diagnosed, I was diagnosed with remitting relapsing MS. But that can switch into secondary and primary, just depends on, you know, they just don't know at the time of diagnosis. They know you've got something, they can't tell you how it's going to progress until they see a pattern happening. But I I happened to find out that somebody I graduated with had progressive primary MS. And within like six months of me finding out that he passed away, not from the MS, but it's always the complications of. He lost his ability to move his body, and so he died of pneumonia. But it's because he's in the hospital and he's on you know feeding tubes, and there's just more risk involved when you've got to that level. So the MS didn't necessarily kill him, but he died because of complications around that disease. So there's a lot going on in my mind at this point. The second big thing, I mean, family is huge. I mean, I'm you know, am I gonna be able to walk and play with my kids and do the things that I intended to do as a parent? Two, I just started this job in IT. it requires a lot of brain. I'm gonna be a programmer. I want to, you know, I use my brain a lot. You know, you know, IT work, it's just a lot of brain work. It's a lot, and a lot of my my symptoms were cognitive, a lot of brain fog. There's a stigma around the the physical side of MS. And again, early on, less people knew about it, so it's hard to distinguish. But there was a lot of people who would be mistakenly considered drunk because of two things you because of your gait, because I can't, I'm a little unsteady now. I can't walk the way I normally can, and it feels like maybe I'm I'm wobbly. And that's coupled with, and I do have this symptom, slurred speech. So when my MS is acting up, my jaw gets tight and and I and I have trouble forming words. And so all of a sudden it's like Bobby's at work and he's like over there slurring and stumbling, and he's and so people there was a big decision to make and whether or not to tell my employer that I had MS. So I spent some time just marinating around that, deciding what's the best course of option. And ultimately, you know, much of my life is like this. Being transparent is much easier to be in life where you can. And so it's better for me to say, you know what, here's what I got. And so I told everybody, you know, I'm not I'm you know, not afraid to talk about it, not afraid to discuss it, you know, good or bad. So I told my work and they were, you know, super helpful and understood now. They understand if I'm struggling, they'll know why, and I've got some extra space around that. So that was my initial concern, Taylor, was just, you know, how is this all gonna work? And then the secondary piece was literally just doing the hard work of learning everything about it and then just pushing the boundaries where I could. It's like like I said, I went back to the gym, couldn't do a pull-up, it, but but you know, for me, I went back to the gym every day. And every day I'd walk in, I would go down to the gym, get myself gym clothes on, go up to the you know, upper gym, go up to the pull-up bar because that's where I knew my litmus test was. If I can, if I start to see this progress, I know I'm getting better. So I would go there, couldn't do a pull-up. After like a week, I could do a pull-up. After two weeks, I could do 10 pull-ups. And after a you know, a couple months, I was back to kind of a normal routine. and and kind of back to past the idea of of you know this initial phase.

TAYLOR 21:03

Wow, that's some powerful powerful stuff, and thank you so much for sharing all that. That's pretty impressive. And and I love you talking about being transparent and being open about your situation. And I I know it can be very difficult because for me, being blind for a long time, it as well as MS can be a hidden disability. And me and you have spoken how there's it's interesting how there's some similarities, even though our disabilities are vastly different. Yeah. Like I I have dealt with a lot of that same stuff, people thinking I'm intoxicated while at work or at nine in the morning at at like a family event, like and it it can be hard, but just being open can make it easier on you, but it can also make it easier for others to assist you. Yeah, but if they don't know what's going on, they may not know. You might benefit from assistance or benefit from a workplace accommodation or just having that understanding can be extremely beneficial. So it's it's great to see you advocating for that as well.

BOBBY 22:13

Yep. We've talked about this too. The other the other thing that I was worried about and still fine concern about, I didn't want it to define me. Like I, you know, I didn't want it, I didn't want I wanted to be open and transparent, but I also didn't want it to be like the leading story every time I walked into a room. Like, oh, how are you feeling today? Is everything you know, oh sit down. I I you know, I wanted I still wanted to control that message and that kind of pathway, if you will. And so as much as I'm open to talking about it, I also don't look for avenues to bring it up at every turn just to just to you know prove a point. There's time and place for that. I do a lot of fundraising uh on behalf of MS. I've done that for years now to you know toot a little horn. I just crossed over the $100,000 mark uh for fundraising um for MS locally here in Colorado and also in DC some. So I've I've done you know I've done a lot of that. There's so I find space for that. But in my day-to-day, I just don't, you know, I don't want this to be like the the number one leading factor that I'm I'm talking about.

TAYLOR 23:15

Yeah, I I fully agree with you there, and that that kind of brings up a very interesting talking point when it comes to this is identity first language versus person first language. Yeah, and earlier you heard me refer to myself as a blind man or a blind individual, but also sometimes I like to say a person with blindness, and so people have different preferences, and even though sometimes I'm fine using the identity first saying blind man, yeah, I don't want it to feel like that's all I am. Because there's a lot more to me and a lot more to you than our disability. And yeah, and so are there certain situations where you prefer one or the other, or do you strictly like person first, or how does that work for you?

BOBBY 24:01

I think it's interesting when you've got, you know, it's hard to, you know, typically you wouldn't refer to somebody as an MS person, or you know, it just all kind of falls more like you've got a, you know, a disease, which may or may not be curable, but you know, you could say I'm a cancer survivor, I'm an MS survivor, which is then kind of putting it like in that same identity first, right? Language as opposed to saying I'm a person who has MS, I'm an MS survivor, or an MS, you know, I live with MS. There's yeah, so it just it typically comes up more on that latter side than it does like I'm a blind man. It just doesn't come up quite in those those instances, I think. At least in my opinion, you usually it's more like me just saying it's something I have, as opposed to it defining me in that other way.

TAYLOR 24:47

Yeah, that makes sense. like with certain disabilities, like may may not sound grammatically correct to use that person or identity first. but yeah, but when it does cross over, I think more like holistically just disabled person, person with a disability. But yeah, it's it's a very interesting thing because so many different people, whether they may have the exact same or very close to the exact same disability, but one person might want to only use identity first when referring to themselves, and some people only person. So yeah, I always find it very interesting.

BOBBY 25:25

And I found myself in a unique position too, and this is just my own pathology when it comes to this. But when when people ask about my MS and how bad the symptoms are, and what the symptoms are, and and when they come up, and how you know, so to when that disability rears its head, uh Taylor. So I do I do have disability. I just it does like this. Is you know, we both have something that can be considered invisible disability to some degree. It's like you walking around, you you do so well, people might not know that you have this disability. If I didn't mention it, nobody would know typically that I've got this disability. But for me, it comes up in vision. I do get vision issues, not blindness, but vision issues. I get speech issues, I get gait issues, I get cognitive issues, and they can range from very mild to very I had it, I had an experience a couple weeks ago where I I came close to thinking I was having a heart attack. And I'm, you know, close to 60, and I thought, okay, this could be real. My arm's kind of numb, it's a little new, my legs are hurting a little bit. It just and I got then the anxiety hits in, and I start to have a bit of a panic attack, which is you know something I'm prone to when in these situations. I've gotten good at managing it, but it but it was something that was early on and it just sticks with you. It's just one of those triggers. So I started to feel a little anxious, so I'm calming myself, and I realized I'm just having I'm having an MS attack. And and just so people know, with MS, there's lots, there's lots of levels. So I had an attack on my body, it it ate up my nervous system, created damage, and that damage is permanent. Now I've got a new baseline. So it was like baseline, you know, pre-MS attack. It's right here, right? There we are. It's right here. And then and then MS attack, now I've got a new baseline. This is my new reality. It was down here, now I've got these symptoms and things that happen in my life. And and what can happen is that can go up and up and up. So people can continue to get attacks, and and that's where we talked about that progressive nature of it. Like, oh, it just keeps attacking, and more and more of these lesions um creating more and more issues. For me, my lesions have been pretty stable. Like, I haven't had these upward attacks, but what happens is I you know, even my baseline, I can have these fluctuations of symptoms. So currently I'm feeling pretty good. No real, you know, no real symptoms to speak of. But again, if I if I don't sleep well enough, if I drink a I mean, even just you know, more than like two or three drinks, which I don't do anymore because of this, um I typically stay pretty clean, you know. Every once in a while I might have, you know, one or two that and knowing though that it's gonna create this upward slant of possible symptoms that can do everything I talked about legs, you know, arms, head, speech, um, all these things that that um that come into play. So so that those are just kind of some of the things that will happen to me. So we have this invisibility nature to our disease. So you know, for me going in, um I was you know more concerned about um dealing with um, you know, people ask me how you know how bad my symptoms are. I always start to think about, well, I know enough about MS that I'm my symptoms are pretty mild. They're symptoms and they're real, but gosh, that guy over there can't walk. Or that guy and that gal can't talk. I feel pretty lucky, um, you know, and grateful that, you know, for whatever reason and whatever reason my body is what it is, it's handled it in a way that I'm still able to do a lot and not feel like I'm you know struggling at most times. So it's it's a straight that's a strange pull and pull push for me. It's like I I'm you know I'm less sympathetic to myself, I guess is the point. It's like when people say, Oh, you have the MS, I'm so sorry. It's like, yeah, you know, I hear you and I appreciate your your you know your empathy, but there's you know, not just outside of MS, there's so many other people in the world that you know I feel more sympathy and empathy for than than myself.

TAYLOR 29:17

Yeah, I I certainly share that because like like I as I said I have blindness, and what a lot of people don't know is around 90 to 95% of people with blindness still have some functional vision like myself. I can get around fine without a white cane or a guide dog. I would certainly benefit some from either or, and I think I'm still in the process of potentially getting a guide dog. So we'll see how that goes, but I always know it could be a lot worse, and it used to be a lot worse. That I used to be one of those five percent where I saw nothing. Yeah, and it's gotten better, and so like when I explained it to people, they're like, Oh, that's awful. I'm like, yeah, it's not ideal, but it could have been a lot worse. And I know people who have a lot worse, more severe cases of blindness, and they're able to live very fulfilling lives and have happy and healthy families and wonderful social life, so it's not something that needs to be pitied.

BOBBY 30:21

Yeah, and that's an interesting that's an interesting view on it because it ultimately I, I know that people aren't pitying me, but it just there's that feeling of not wanting to have that attention, but also knowing that, you know, in the course of, you know, this has been, you know, like I said, I was diagnosed in 2003. It's 23 years later, I've learned to be more comfortable knowing limitations and accepting them. My, you know, my 23-year-old-to-go self, you know, would have said, I know, power through it, do all the things and and don't worry about the body. In my current stage, I definitely pay more attention to my sleep. I've always been good with diet, but, you know, just tweaking that, knowing, you know, where my limitations are when I go out, you know, just all those things that, and and I know the choices I make are gonna create, you know, certain responses in my body. So I, I've come to really, you know, understand that and and accept it also. So it's like I, you know, there's that reticence, but there's also that acceptance that I've also come to, you know, agree with and and and be okay with.

TAYLOR 31:26

Awesome. And one of the things I love about this project we're doing day in life is people like me, or even someone who's maybe a little bit younger and they aren't aware of any of these disabilities. If they come across in life where they start to see these symptoms and maybe get diagnosed, they can have people like you, Bobby, sharing your journey and they can learn from it and understand that you can still have a very fulfilling life with any of these disabilities. Just having the awareness is the big thing. And so I'm really appreciative of you sharing your story with us. And we've had a lot of great conversations so far about MS, but as we both know, there's a lot more to you and as myself, as with myself, than our disabilities. So tell us more about Bobby. Like, what are some hobbies and passions of yours? Like I know you're saying about your knickknacks and how you used to like working out, anything like that. Like, just tell us more about you.

BOBBY 32:32

Yeah, so I'm you know, I am a high energy, it's this is strange because it actually is is against the the nature. Like when people find out I've got MS and they they've known me for a while, they're like, holy crap, how do you have so much energy? Like you're out energying everybody, and that's just I I wonder, like, if I didn't have MS, what I'd like be like a a rocket. I don't know what would happen, like you know, what my energy levels would be like, but I I sp I fill a lot of time and I create a lot of easy space too. So I like to watch movies, so we we like to catch up with like right now's the perfect time. We're catching up with all the Oscar nominated movies that just got nominated this past week. And so we'll try to see all the nominated Oscar movies. So that's a like watching good cinema is something that I like to to to get into. I I am a thrifter, so a lot of the stuff I've collected I either made or thrifted, you know. So it's like love to get it out. And just you know, I started this when I was a programmer, and spending you know hours, eight to ten hours programming something complex, I sometimes just wanted the stupidest thing I could do. And to me, it just became there's a thrift store down the street from my office. I would just go and walk through this thrift store and just look at things. Like, oh, here's a plate, looks good, put it down. But it became more of a hobby of like just going and and on like a treasure hunt, like, oh, this is cool. And that's where my album collecting really kicked in. I started buying more albums, and so I like to buy and I listen to to you know albums all the time. I love the sound quality of an album. The little bit of hiss and scratch is kind of perfect for me. I like that feeling of of just that's seems a little bit more real. I I'm also artistic, so I carve and and draw and mostly doodle, like you know, nonsense crazy doodles like this kind of stuff. I'm gonna pull it up just because it's it's right in front of me, but but just like the doodle dumb looking things. And carve I carve some stuff, so I do artistic stuff. I play music. I see you get a guitar. I taught myself to play guitar about you know 40 years ago and and you know, still play ukulele guitar a lot. there's you know my ukulele sitting off to the corner there, but yeah, and then sports. I like to, you know, I don't play as many sports because I just just don't have time, but I'll get out and like shoot a hoop and throw a football and that kind of stuff, you know. So pretty pretty much stay active at all levels. if I'm not working, then I'm usually doing something else, you know, and right- I write and and and try to read when I can. So stay pretty busy.

TAYLOR 35:04

Nice. And and just for your information, that guitar in the background is purely aesthetic.

BOBBY 35:09

I so I I do see the dust on top of it now. You're right. The HD is giving you away, man.

TAYLOR 35:15

I've tried it here and there, and I I just couldn't pick it up. And I even bought like a little program where they it's specific for teaching blind people how to play.

BOBBY 35:26

Yeah.

TAYLOR 35:26

And but uh it's like 20 years old and it's fairly stale and hard to listen to. Like it feels like I'm listening to like to NPR and how to play guitar, and so it's hard to sing games.

BOBBY 35:40

I tell you what, I I know this people ask, like, how you know, how do you learn to play guitar? And it's like, you've got to withstand sounding crappy for about a year. That's that's the easiest lesson. Like, you're gonna sound like crap for about a year because it takes that long to figure out how to get your fingers to hold down the strings hard enough to get your fingers to move in the different positions that they need to move to, and to get your other hand strumming and all that, it just takes a long time. But once you do, it's kind of it sounds kind of sweet. So hopefully if if the if the notion hits you, you'll pick it back up and and you'll work through, you know. Maybe like I said, maybe that next level of of tutorial comes along that's a little more exciting than Irish Shapiro or you know whoever on NPR.

TAYLOR 36:23

Yeah, well we'll see, but I actually thought I'd be a little bit more stereotypical, so I got a keyboard for Christmas. So nice. I'm learning a little bit of that, and I enjoy that quite a bit because I also the instrument I love to use the most is my voice. I love to sing, and a lot of the songs I love to sing are piano-based. Nice, and so my dream is to be able to play some of my favorite songs and sing along to it.

BOBBY 36:49

So I think that's where most of my musical what type of music, what's what's your favorite genre of music? Like if you're picking one.

TAYLOR 36:56

I mean, I I've recently started to like reach another level with my singing. I finally had these things click that I've learned over the years, but never was able to see in my own voice as I'm singing, yeah, or more so feel. but now I've gotten to a point where I love singing rock music, pop music, soul, like RB.

BOBBY 37:19

Yeah.

TAYLOR 37:20

But yeah, but a lot of the stuff is very like I love singing with emotion, and so a lot of it's like very soft, like soul, RB type music.

BOBBY 37:28

Yeah.

TAYLOR 37:29

yeah, so it's it's been a lot of fun so far, and having those hobbies is is great, especially for your mental health.

BOBBY 37:35

Do you sing? Like I sing a lot. I've sung in choirs, I've sung in bands, I've sung on musical theater stage. But in general, and the the crazy thing is I don't do karaoke. Like I've I haven't done karaoke in who I mean, maybe once or twice, but like it's not my thing. But I love to sing. So I'm the fool that you'll hear in Target, like three aisles over, singing to whatever songs overhead at the top of my lungs with emotion because I I don't I just love to sing, and you know, hopefully it doesn't offend anybody. Usually people are excited that you hear me sing, you know, they'll they'll sing along sometimes. Somebody asked me, is like, don't people think you're crazy? Like every once in a while, I'll I'll hear somebody harmonizing two aisles over and I'll go find them.

TAYLOR 38:19

Yeah, that's awesome. Yeah, I I I love singing as well. It's it's very freeing, and and what's great is singing doesn't discriminate. Like you can be whatever color, you can be LGBTQ plus. It like you could be blind, have MS, like obviously certain disabilities. Like I had a lot of severe muscle atrophy in my throat, my vocal cords, yeah, and my jaw muscles. So I had to go through speech therapy and like all that stuff, but having that ability to sing and it's just so freeing, and having that kind of outlet for that emotion can be extremely beneficial.

BOBBY 38:58

And you maybe think about it, I do it for me. That's why I sing because I like to sing and it makes me feel good. Which is probably why I don't like karaoke as much. I don't I don't crave the attention, you know, or the the stage part of it. I just like to sing. So and it it is something visceral that I just like to do. It it it pleases me.

TAYLOR 39:17

So yeah, I fully agree with you there. Yeah, it's it's amazing. And you don't have to be great.

BOBBY 39:24

No, you you you just if it's for you, you you it's it's for you, and that's all that matters.

TAYLOR 39:29

Yeah, absolutely. And now with all the resources that we have available on social media platforms, you can always spend five minutes, ten minutes a day working on something, whether it's singing, learning a different instrument, or any kind of hobby. It's always great to have those things to take your mind off of the work in life and the more stressful things. But speaking about work, can you walk us through like a typical day? What does a typical day look like for Bobby from morning to night? And you can be as descriptive as you want.

BOBBY 40:04

Yeah, so I get up, so I again, I get up at 5 every morning, 5 a.m. Typically when I'm, you know, in here or on vacation. I've been I've been letting this slide a little bit recently. Like I've been letting myself, if I'm on vacation, maybe get up a little later. But I'm a five o'clock, I'm a morning person, so I'm up at five, get my coffee going, and get a big chunk of work done early. Like I like to get heavy, you know, brain work, lots of, you know, if I'm having to think or or, you know, create, I'm trying to get that done. Plus, it's a time where typically nobody else is working. I'm on mountain time. A lot of folks I work with are on East Coast time, so they're just kind of getting started. The, you know, Pacific coasters are not even nearly up yet. So I get a lot of this quality of like two hours, sometimes three-hour blocks of quality, no meeting work time. So that's what I that's what I like about my morning routine. And I, I do follow that through. I get up on weekends at five, I get up and I write and I work out and I do all these things just to just because it's again, the family's asleep. My, you know, people in my house aren't getting up until seven or eight o'clock. So I've got this free time to really to do stuff, whatever it is I choose to do that morning, whether it's writing or art or whatever I feel like I want to do. And then for work, you know, what I do is so fractured, it's not a it's not a, you know, it's not like a grind kind of a thing. One day, if I look at my calendar, you know, currently I'm spending a lot of time coordinating DynamicsCon. So I'm I'm the main liaison for programming. So I'm working with all the track committees for F and O and BC and Power Platform and CE and cross product and keynotes and all these things around programming the event. So I'm I'm kind of coordinating and juggling all that. So that's a big portion of what I'm doing, just kind of following through and and making sure everybody's got what they need and we're moving that needle forward. I did the same for convergence. So when we have big events, I'm doing that. And even locally for our regionals, if they need help, I'm there for programming for, you know, for assistance. So that's a part of my week or day. And then another parts could be direct, you know, direct communication with the community, like what we're doing. I do a lot of podcasts, either, you know, my own or on, you know, as a guest, probably one to two, maybe three a week, of of just this, just talking with and to the community. You know, sometimes it's, you know, kind of adjacent topics, like we're talking about, you know, something that's not really tech related. I just got out of a licensing webinar that we we did live with a great panel of, you know, D365 licensing experts. Again, giving directly back to the community. So that's a one-to-one learning opportunity. So I've got those that are layered in, as well as planning, you know, a lot of planning activities. So then it's down to, you know, the next stages of like planning out the next best, greatest things to do it within the community. So my job as a community strategy director is again, it's fun and it's it's somewhat green field to every week, but a lot of it is just being in touch with what the community is doing and and trying to meet them there and provide things that they they they want, and making sure they're getting the best experience out of what we provide as a as a one small piece of the community. So that's so that's it. And so that's, you know, that's kind of waking up, getting a lot of stuff done, kind of hitting my meeting zone typically starts around eight o'clock. I'll start getting into those, you know, half an hour blocks. I leave my calendar open for that purpose. If you aren't out there doing this already, I block off time for myself too. don't leave your calendar wide open. Bobby's tip number 933: don't leave your calendar wide open, especially when mine's attached to my email. Block out your time. So I block out space for lunch. I block out space if I need it. Like, hey, I need a couple hours here to get prepared for something. Or if I'm doing a webinar, I need a half an hour before if I can make that happen. that's important to me. Obviously, some team meetings every once in a while filtered in. And then when I'm done, that's when I'll go back, I'll go out and start to look at like family, what's going on? Do we, you know, is it a movie night? Are we, you know, is it gonna be, you know, do I need to make dinner or are we eating leftovers? Like what's what's the next level happening, family? Did I want to go out and do some thrifting? Or do I have that project I wanted to work on a little bit later? So now I've got time to do that. So I'll have those things ready to go. Yeah, you know, one of the things that we do here, and it's it's just a fun thing, we we do a lot of crosswords. So we'll typically knock out a crossword a day, you know, like a Sunday type crossword in a day. So we'll sit and do that as a family, and then I do decompress with either reading or more likely a movie or some sports, something we're watching, you know, and then I'm in bed by nine because I get up at five. So I'm getting trying to get my seven and a half to eight hours sleep.

TAYLOR 44:54

Nice. Yeah, I should probably work on getting more consistent with my sleep schedule, especially when hits the weekend, it can fluctuate, especially this time of year with NFL. I'm a huge football fan, especially of NFL.

BOBBY 45:08

So yeah, and you're on that East Coast time where those games that they're night games are like that's why I love mountain time, like our games end by nine. it's pretty nice.

TAYLOR 45:16

Yeah, it is nice, especially like if I'm like at a conference like on the West Coast or like in Denver, like Colorado in that area. Like, like one of the bigger conferences, community summit, is usually in October, right around baseball postseason, and I can watch those games a little earlier in the day and not have to be up till midnight watching these games.

BOBBY 45:39

So those get crazy. Like some of these games go on after after like to one o'clock.

TAYLOR 45:45

Yeah, absolutely. So you were walking us through that typical day. Like, are there certain points throughout the day or like whether it be doing certain activities, anything like that where you feel like any accessibility barriers?

BOBBY 46:00

Yeah, I mean, like you know, I've mentioned this before. If I don't get enough sleep, I'll notice that my my my speech gets I get a speech impediment. It's not really that discernible, but my wife notices it. She'll know if I'm having because I'll start to stutter a little bit. I just quite can't I can't quite get my words out. And it'll literally feel thick to me. Like it just feels like my entire face. I get spasticity, same thing. So I so it's so sometimes I'll get like like even just doing a lot of mousework. If I've had a bad night, it'll I'll still have to feel it. And becomes I get this claw, I call it, that I just have to stop and and pull it up, pull it back. It's you know, it's just a just a reaction to to the MS. But the other thing I I do, this is just a shift in the way I work out. I used to work out like an hour and a half at a time, do cardio, do weights, do all these things in one bulk period. And what I found with my MS is I can't do that anymore. Because if I do all that in one block, then I get then it I do start to feel the effects of the MS creeping up, and therefore I'm I can't I don't recover as well. So if I open the morning with a two-hour workout, I I would I probably couldn't start working for another four or five hours. Like I'm just you know, I could, but it would not be as effective. So what I do is I do I call micro workouts. So I do my workout through the entire day. So I start off the morning with like maybe a set of pull-ups, some jumping jacks, a few things, and then I stop. So like maybe five minutes, then I start working, and then like an hour later, I do another five minutes, and an hour later I do another five minutes. So I don't, I might not get the same quality, like as if you're trying to like bulk up, like that you're not gonna get the same probably experience. But I'm also at 60 not trying to bulk up, I'm just trying to stay healthy and and active and fit. And so I don't have different goals, but so I do micro workouts throughout the day too. So that's part of my daily routine that keeps me keeps this at the exercise piece and keeps me from totally wearing myself out.

TAYLOR 47:55

Nice, and that's another very interesting similarity, and again for different reasons, but I'll I'll do the same thing. I'll do a set of push-ups here, I'll do some jump rip here, like I'll do some planks here. Like, I don't do that long duration workout, and it's part of partially for me, it's just preference. I'd rather space it out throughout the day, like it's almost like getting a quick caffeine boost, like just getting that blood pumping and yeah, just feel more energized throughout the day. And and also exercise can be extremely good for your mental health as well. You bet. If you're if you're having a rough day or you had a rough call that didn't go your way, or you performed poorly in the meeting, least to your standards, like having exercise, whatever level of exercise anyone can manage, can be extremely helpful for kind of equalizing and just in that kind of mental reset.

BOBBY 48:55

Yeah, I agree with that.

TAYLOR 48:57

Alright, so we've we've covered a lot of great stuff, and and I feel like this has been a lot of great content, and I don't want to make it where it's too cumbersome for people to absorb all this content at once. So, what would be some big takeaways that you would want viewers or listeners to take away?

BOBBY 49:17

Yeah, I mean, I think you know, that for me the big takeaways, if you're if you're you know, if you are faced with a situation, whether it's MS, any type of disability to your daily activity, I mean, I I you know, the thing that helped me the most was to was to demystify it, was to learn, you know, I didn't know the like I said earlier, I didn't know the term MS. So dem demystifying it helped me to understand. I talked to a lot of people. I interviewed probably 30 people over the course of the last year who with MS to hear their stories, much like you're doing, like a day in the life type of a thing. And, you know, 90% of those folks were concerned they were gonna die within a year because all they knew was this pattern of like, oh yeah, it goes from this to this to this, and and I'm gonna be in a wheelchair and then dead in a year. And so demystifying that, you know, to your point earlier, finding the resources to understand quickly what you can, cannot do, where you should go, what's what is the true broader picture is important. And that'll help you get to the second thing, which is just to regain, you know, the life you want. I mean, you there's you mentioned there's no there's nothing that anybody with any disability can't. I mean, there's too many examples of people who play guitar who have no arms. It's like, yeah, it's awesome. They learn how to do it a different way. They learn how to paint that you know, people can you can overcome if you've got the desire and the mindset, you can overcome and do most things that you want to do. And it doesn't have to be on any timetable. That's the other thing I'd say is that there's no right or wrong timetable with this. Nobody's saying, hey, if you're not, you know, you know, back doing this by six months and you're failing. It's no, it's it's your own timetable and it's your own desire that will get you there. Just you know, know that you've got it in you and know that, you know, again, the things that help me, that the demystifying, you know, knowing what you want, and then and then being that transparent, that that gets you the next level of of assistance when you need it, that that accountability partner. It's like, hey, I'm I've got this disease, and so now I'm I'm open to this this side and people knowing so that when I am struggling, I've got people there, you know, around you know, around me helping me out. So those, you know, as far as the disease goes, that's that, you know, those are my my top takeaways from what where I was and and how I quickly came to to you know basically, you know, for better terms, just own the disease. It didn't own me. It's like I'm not gonna, I'm not gonna let this be, I'm I'm gonna be the the person who controls it.

TAYLOR 51:45

Awesome. And and those are all great takeaways, but it's I especially love that last one because it can it can apply to anyone regardless of what disability you have. Like I I even like was listening to it and I was like, I can apply that to myself just just as easily, and and even people without disabilities, and that's one of the best things about accessibility is it is for everyone, and and that's also what this project is for. It's for everyone, it's not just for people with disabilities. Yeah, it's to yes, give some people with disabilities an opportunity to learn from other people who've gone through similar situations and experienced life with the same disability, but also shedding light on these situations to those who aren't aware. And regardless of someone's ability, hearing that message can benefit them greatly. So yeah, thank you so much for that. Yep, I feel that. All right. Well, Bobby, thank you so much for joining us, and I'm really excited to be sharing sharing your story in this episode with everyone, the community. So thank you very much for for talking with me today, and I hope you have a wonderful day.

BOBBY 53:00

You too, Taylor. I I appreciate being here with you, and and I hope that you know a couple people find this helpful and again pushes somebody past that barrier where they are. So again, appreciate you doing this for the community and and look forward to seeing you again soon.

TAYLOR 53:14

Yeah, absolutely. All right, thank you. Yep, peace. Thank you all for joining us while we explore accessibility and disability. If you enjoyed this podcast, check out more episodes and show notes at accessible community.org slash podcasts. Remember, be accessible, be inclusive.