Latest / OneLegUpAlex Sports / One Leg Up on Spina Bifida , Baseball and Dysphagia With Danny Voyes and Derrek Cooke

Transcript

One Leg Up on Spina Bifida , Baseball and Dysphagia With Danny Voyes and Derrek Cooke · OneLegUpAlex Sports

• 0:01
  Here's your host, Alex Garrett. Hey everybody, I'm Alex Garrett, and
• 0:09
  tonight's going to be a very special conversation about spina bifida and adaptability. And
• 0:15
  I'll tell you what, Folks, in a day where you read that the
• 0:18
  House of Representatives is holding Merrek Garland in contempt the Attorney General the United States,
• 0:24
  it's nice to get some better conversation on the table. And I think
• 0:28
  my friend and brother, really Danny Boyce, would agree nights talk something other
• 0:34
  than politics once in a while. Danny, one, you see the craziness
• 0:37
  in the house. Why I brought you on tonight is because Monday night you
• 0:42
  had invited me to a webinar basically hosted by No No No than Joe Salonica,
• 0:49
  a fellow spine A Biffin A member, and Danny, I feel like
• 0:53
  these webinars and I see why you love them because they're so informative in such
• 0:58
  a community. But I want to say, with the fact that they benefit
• 1:00
  so many more people than just those respine A Bifito, when you agree,
• 1:04
  definitely tell me why you go to those webinars. I want to start there
• 1:08
  because it was just it was fascinating in the community you find with these webelars.
• 1:12
  My mom she has a friend who is a speech pathologist. She also
• 1:26
  works and volunteers for the National Foundation of Swallowing Disorders. She told my mom
• 1:36
  about these webinars that they do about dysphasia, which I have, and she
• 1:45
  told my mom to tell me about it to see if I would be interested
• 1:49
  in attending these webinars. Of course, I said yes, since I have
• 1:56
  dysphasia. So I've been doing these webinars for two years in November and then
• 2:02
  I also get emails from Please Find a Bilital Association. As a last year,
• 2:13
  I've been getting emails like monthly about webinars that they do, so I'm
• 2:19
  like, fourth, I'm going to do those webinars. Also, it keeps
• 2:24
  me very busy every month to do these webinars, and it's fun and very
• 2:30
  informative and creates community. You probably turn to these webinars in times of real
• 2:38
  need. And what I mean by that is whenever you might have like a
• 2:42
  step back or something like that with the dysphasia or whatever you're going through.
• 2:47
  I would say the webinars help you realize, Okay, I'm not alone on
• 2:51
  this right. Not only that, it also gives me more tools to go
• 3:00
  forward in my RASIA journey. As an example, maybe there's something out that
• 3:07
  I didn't know of, and these webinars helped me to know about these tools,
• 3:16
  and maybe I can somehow integrate those tools into my own journey with therapy
• 3:28
  and all that. And you know, by the way, folks, Danny
• 3:32
  is not only appearing on this podcast, he was able to get on a
• 3:36
  couple of other things. Tell us the opportunities you've been getting through your participation
• 3:40
  with these webinars. I know that you were on a podcast in April,
• 3:44
  if I'm not mistaken. Into May, the Nasal Foundation of Swallowing Disartists decided
• 3:51
  this year to create a podcast for Rasia Awareness Month, which is this month
• 4:02
  June, and they were looking for contitionans uh to talk about their journey with
• 4:14
  this radio for each episode. Of course, I was interested in doing that
• 4:19
  since their year I shared my story and my story changed over the past year
• 4:30
  in a positive way, so I was like, I'm definitely gonna do this
• 4:35
  podcast. In April, they are contacted them, I'm saying I was interested,
• 4:42
  and they got back to me saying okay, they sent me, they
• 4:46
  performed to fill out like a questionnaire something, And after I feel that out,
• 4:53
  they emailed me back an outline of the questions that they were going to
• 4:58
  ask me, So that way I was prepared to answer them. When the
• 5:02
  same time came to re coined my episode, which was at the end of
• 5:10
  April. My episode actually comes out on Friday. I'm so proudy Danny,
• 5:15
  that you're talking about your story. Do you ever find it difficult or emotional
• 5:20
  too? Man, I'm here like I'm able to talk about my success.
• 5:25
  Does that get you emotional or what? Last year, when I first shared
• 5:31
  my story, because that was the first time I ever really shared in detail
• 5:38
  what I've been through, that was kind of emotional, especially because I shared
• 5:44
  it twice in a matter of months, and that was emotional. But now
• 5:54
  it's a much easier because shared it so many times already, it's just as
• 6:00
  easy to just tell my story without getting all choked up. So I just
• 6:09
  got to say, to talk about this, I would say, you're very
• 6:11
  proud to have overcome this phasia, and of course you're humble, but you
• 6:15
  have that pride that yes, I have this and I'm not afraid to talk
• 6:19
  about it, and I feel like more people need to have that attitude.
• 6:23
  I'm not going to be afraid to talk about what I'm going through and that
• 6:27
  would make the world a more understanding place, wouldn't you agree? Definitely?
• 6:31
  I begin also being a psychology major, I understand when people are first going
• 6:43
  through something like when I first went through having this phasia, you don't want
• 6:50
  to talk about it because not that not that you're in various I mean that
• 6:58
  could be a part of it, but from me, and it's just like,
• 7:01
  I don't want to talk about it because you don't want to have the
• 7:04
  condition in the first place, so you don't want to talk about it.
• 7:10
  But as time went on, you know what I have it and needs to
• 7:16
  be talked about. What hurdles and what do you find when adapting to a
• 7:24
  sudden health crisis, Because I know you just went through something a couple of
• 7:28
  weeks ago and I found about about on Monday or Tuesday, and I know
• 7:32
  you want to tell us how things are going because you had a bit of
• 7:34
  a setback and now you're back to normalst How did you adapt through that setback
• 7:40
  if you will. The setback that you are talking about is that I two
• 7:45
  weeks ago I got sick with en applestory infection, which in itself is common
• 7:54
  with me because I have severe scoliolysis and because of the scholosis, mike lungs
• 8:01
  are small and compressed, so I have really issues because of it. So
• 8:09
  it's quite common. But on top of that, because I have this physia,
• 8:16
  I am prone to asperating. We think smili aspirated on something I ate
• 8:26
  or drank in the past couple of weeks, so we called the doctor.
• 8:35
  Of course, the first time I got sick was Memorial Day weekends, so
• 8:41
  no one was uh in on on that Monday, so we had to wait
• 8:46
  until Tuesday to call and say that I was sick and I need an anti
• 8:52
  embiotic. Luckily I didn't have to go to see doctor. They just describe
• 8:58
  the antibiotic over the phone. They gave me a five day course of the
• 9:05
  daily biots. To me, it's kind of a little weird because usually they
• 9:13
  gave me a seventh to day to ten day course of antibiotics, but they
• 9:22
  only gave me five this time. I started to feel better by the third
• 9:28
  dose, which that's normal for me, and then by the end of the
• 9:35
  five day days, I was feeling much better. I was still I'm stilling
• 9:41
  well, I'm still on option now, but I was still in oxygen,
• 9:46
  but I was feeling better. Three or four days later, last Tuesday,
• 9:54
  I wasn't feeling good again. Yeah, saying the symptoms as a first time.
• 10:01
  So my mom and I figured that whatever I had the week prior,
• 10:07
  I wasn't over right, and we think that they didn't give me enough.
• 10:16
  They with the antibiotic, so my mom called them again. They gave me
• 10:22
  the same antibody for another five days. I just finished it the other day
• 10:30
  and I'm feeling so much better now. I'm still on out, as I
• 10:35
  said, but I'm working on that. And on top of that, because
• 10:43
  I asked rated well as we think I asked for it, my therapist desired
• 10:52
  that it would be good for me to take a step back and go back
• 10:58
  to a puree diet instead of a missed and diet, just to uh make
• 11:07
  sure that I'm not asperating on anything, and to go without the liquids because
• 11:18
  apparently liquid to all the worst thing to as for it, so I would
• 11:28
  imagine water would not be good choking up. That's that's yeah, how is
• 11:31
  your mental health during all that? Because I know you told me all fair
• 11:37
  man, I was really missing my mint diet. Did that that really have
• 11:39
  a drastic change on your daddy? Yeah? So when my mom uh told
• 11:46
  me that she talked to my therapist about going back to the pure diet,
• 11:54
  I was not happy about that, but there was there's there was more to
• 12:03
  that than just nothing happy about that. First of all, when my mom
• 12:09
  told me about it, she chose to woke me up from uh sleeping because
• 12:16
  she wanted to get me up to do some breathing treatments. So, uh,
• 12:26
  I just woke up and she that's when she started to tell me about
• 12:33
  it. And I'm like, I'm thinking, I just woke up. This
• 12:37
  is not when I want to hear. When I left her story up and
• 12:41
  I'm not feeling good. But then when she says that the therapist also said
• 12:48
  that I shouldn't have any liquids, any freaking liquids. That I was not
• 12:58
  happy about. Because when I eat uh, whether it's pure or min mincinise,
• 13:07
  what I do is I take a couple of a couple of the Moon
• 13:11
  of the Thinking liquid just to moisten my mouth and throat so that way when
• 13:18
  I go to eat the food, it goes down easier. And uh one,
• 13:24
  when my mom said no liquids something, how am I going to eat
• 13:30
  when I can't moist in my mouth first? And how do you prepare when
• 13:35
  you have to go from one step to another and then back. I mean,
• 13:39
  is it do you find your body adjusting a lot, Danny to all
• 13:41
  this? No, my my body just handle and uh easily easily. Uh
• 13:54
  So what I found I found actually I found a loophole with the liquids.
• 14:03
  So I I eat apple sauce like every day because as a snack, because
• 14:15
  I like apple and it's just easy to eat. So I'm like, apple
• 14:22
  is pretty much just like uh chunky version of apple juice. So I'm gonna
• 14:31
  use apple saice as my liquids. So with every meal, I would have
• 14:39
  apple sauce with whatever I'm meaning. So I would take a go hole spoon
• 14:46
  force of apple sauce and then eat my food, take another hole spoonfool stuff
• 14:52
  apple sauce, eat again, you know, back and forth. So I'm
• 14:58
  like, this is work him much better than our thoughts. And I've learned
• 15:03
  the last couple of weeks that anything that we go through, Danny can be
• 15:05
  applied to anybody go and see adjustments. So hearing that you have overcame that
• 15:13
  or whatever you want to say, I hope inspires others because you know,
• 15:16
  you go through a lot in a day. I can only imagine Danny,
• 15:20
  but and you talk about it. Hopefully people who go through this that aren't
• 15:26
  in a disabled community, if you will understand, they too can get through
• 15:30
  it. Right. Yeah, you and I have a very similar thing in
• 15:33
  the awes. I mean we've talked about that before. I realize on this
• 15:37
  webinar Monday night, every quote unquote condition has crossover situation. So it's like
• 15:46
  not that anybody's better than anybody else. We all have the same we all
• 15:50
  have different conditions, but sometimes the same kind of symptom, right exactly.
• 15:54
  That doesn't get talked enough about exactly. So I learned that, you know,
• 16:00
  listening to you guys, listening to them in the spider befit, I
• 16:03
  can approve appot everyday. That's why you and I need to a webinar.
• 16:06
  I'm dead serious. We gotta do something because can you imagine we start our
• 16:10
  own little community of people that that want to talk. That's what we're here
• 16:14
  for. Really, Yeah, I would be down for that, just for
• 16:18
  sure. Now, this is very awareness months. And what are you working
• 16:22
  on on your platform because I know when these months come around you have projects
• 16:27
  that you talk about. Yeah, I'm so busy this month. So basically
• 16:37
  no, I, like I said, I did the podcast episode for the
• 16:44
  uh the Foundation again coming on Friday. But then, but I'm also posting
• 16:53
  for more, like reposting sites of information about this asia that the National Foundation
• 17:04
  of Small Disiners would post on their Instagram. I would just think that and
• 17:14
  we posted on my Instagram and Facebook. And yeah, that's what I'm doing
• 17:22
  every day. And are you finding a good reaction to it? Because I
• 17:26
  think the beauty of you and I is we have this ability to do crossover
• 17:30
  into that able body world, you know that what they say about the world,
• 17:36
  and educate and I think that you do that really well all the all
• 17:40
  the time. Dandy. Yeah, I'm getting I'm getting some good feedbagage,
• 17:45
  especially on Instagram. Yeah, it's been pretty good. Now do you do
• 17:55
  you ever have people who are just going through this for the first time or
• 17:59
  even is there a thing that seven vets with this asia that that comes to
• 18:03
  you and say, hey, Danny, what you know, what can you
• 18:07
  tell me about this and the other even those who have had it for years
• 18:10
  as long as you have, I'm sure everybody's learning something new, right,
• 18:14
  Yeah, I've had so. I'm also part of a support group for this
• 18:22
  radio through the foundation that I've been doing for in the past. Here,
• 18:34
  not necessarily that I need to support. I'm just able to support the other
• 18:41
  people. And I've had two two of them reach out to me to see
• 18:52
  what I know about it and when I know, and if there's any tools
• 19:00
  that I use that might be helpful to them. Unfortunately, their situations are
• 19:11
  very different from mine, and when I what I do for my therapy to
• 19:21
  get better and stronger, then they are unable to do because of their condition.
• 19:30
  You kind of talked them through their own things, right. It's so
• 19:33
  nice that I was able to at least give them some pointers and options even
• 19:42
  though they are unable to use them. It's not wide. They talked about
• 19:48
  how similar CP could have a condition that you and I have, or it's
• 19:52
  almost nif could have the same kind of condition, because I feel like what
• 19:56
  you're talking about does cross over and I we use that word a lot,
• 20:00
  but that's just the new theme I you know, I gues that all of
• 20:03
  these things intersect and we need to highlight that exactly. And to that point
• 20:10
  is dyustrasia is not a very common uh it's it's actually more common than people
• 20:18
  think it is. The reason why we don't know about it much is because
• 20:25
  well, two things. One is basically an invisible disability, and then you
• 20:36
  see them eating on in this case not eating, you won't know that they
• 20:41
  have it. And also, what I've learned is that most people who have
• 20:52
  some form of this shagia, they don't go out in public that much because
• 20:59
  of how our society we've used food as like a main staple of being together
• 21:15
  and having fun. Now, when you say it's unseen, I'm kind of
• 21:21
  curious because obviously, if your friends are dead and you're around them, I
• 21:26
  mean, do you feel like people literally sort of monitor how your swallow therapy
• 21:32
  is going, like you're swallowing is going even during a meal, or are
• 21:36
  there at guys on you If you will you are closest people to you,
• 21:41
  obviously we will know what you're swallowing difficulties are. But in the general public
• 21:52
  unless they will, unless they see you out and about, Okay, they
• 22:00
  will they won't have any clue that that you can't swallow. And that's uh
• 22:07
  why I said, most people don't go out, Yeah, if they have
• 22:14
  just traded, because everything we balance a own food. How do you find
• 22:19
  the best insurance resources? And maybe can inform others listening to this podcast,
• 22:23
  Hey, you're not alone. You can find the right resources. Well,
• 22:27
  love Luckily, my dad's insurance still, and his insurance is very good.
• 22:37
  I'm also on Medicaid, which we all know isn't very good. And but
• 22:47
  with what God's insurance, it's, like I said, very good, and
• 22:56
  I found out recently, Like I think the end of rush here, which
• 23:03
  is astonishing to me, is that I can go for a small therapy infinitely,
• 23:15
  but I can't do physical therapy all that for whatever reason, and joints
• 23:26
  whether does not want to pay for a long term physical therapy, but they'll
• 23:33
  pay for long term swallow therapy, which is so weird to me because physical
• 23:41
  therapy is more common and more common therapy than small therapy. Is insurance should
• 23:51
  cover everything, but they're like, well, what do you have more common
• 23:53
  than the other. That's I don't think that's necessarily right. I don't think
• 23:56
  you would think that's right either they should cover as equally, right. Yeah,
• 24:02
  it's so funny. I feel like I'm dealing with baseball theme as well
• 24:06
  because I can't help I think Derek is a big Yankee fan, You're a
• 24:11
  big met fan, So I guess I got the Subway series going on here.
• 24:14
  But does baseball help you take your mind off the pain if you will
• 24:22
  in the past year or no, using on the I'm doing, you know,
• 24:30
  because they're painful to watch, but at least it's an outlet, And
• 24:34
  yeah, it is. That's why I started. That's that's when I started
• 24:38
  watching baseball when a decade ago, mister help me up with what I was
• 24:47
  dealing with that at the time. And after I dealt with those issues,
• 24:53
  I was actually getting into the into the game. So I can't watching Team
• 25:02
  three watching. But yeah, but in the past year, so I haven't
• 25:18
  when it really watched a lot of base especially this year because of how that
• 25:26
  mat have been doing. Danny also gets his mind off things with a lot
• 25:30
  of memes. I know, you're like a mean king over there, Danny.
• 25:33
  You love your memes, that's for sure. Yeah you can. You
• 25:37
  can think for that and you two have some great back and forth. So
• 25:41
  that's that's awesome. And to that point, socialization going through this is so
• 25:47
  vital, isn't it. Oh? Definitely, Like I mean, I know
• 25:52
  Liz and you and Liz have kind of saved each other from a lot and
• 25:56
  and that's a testament to your friendship. But overall, socialization has really helped
• 26:00
  you get through a lot of this. Yeah, and really has I look
• 26:07
  great toot youse uh and a lot of other friends of mine and my family.
• 26:18
  Of course, we haven't done a check in since his passing really in
• 26:23
  this regard. But does Max way on your mind every day because I feel
• 26:26
  like he weighs online a lot, even if it's subconscously. He's always there
• 26:32
  with us, you know, the dude. W Yeah, I can feel
• 26:37
  him, right, I always can. I can always feel him around me,
• 26:42
  Like I said, the want me here, which is a good thing
• 26:47
  when Yeah, he will always be a character. You know, he just
• 26:53
  had this. He was one of the best storytellers. I gotta say,
• 26:56
  he just told me. And the way he would facial expressions and animation.
• 27:04
  Yeah, I missed that kid, and you know, we we live on
• 27:10
  in his memory. And I think I think what he could also do just
• 27:15
  is to advocate, right, So he was a big advocate for himself.
• 27:19
  Yeah, And I know you and I have had our parents and thank God
• 27:25
  for them sort of advocating, but sometimes it's up to us too. I
• 27:27
  mean when I was in the hospital, Danny, I was walking around asking
• 27:32
  for different supplies. Yeah, that time. And I don't know if you
• 27:36
  found yourself advocating that way when. Thank God for my mom because she's my
• 27:45
  biggest advocated cater. But over the years, I uh started advocating for myself,
• 27:56
  uh in the as sending. So now I'm used to when my mom
• 28:04
  isn't there in the hospital with me, I'm used to speaking up for myself
• 28:11
  and saying, hey I need this, or hey, what's going on with
• 28:17
  whatever? And when are we doing the abound ab and cree and all that.
• 28:22
  I mean, the only way to have health is when you're involved in
• 28:26
  your own help, right. I think we've both been learning that way.
• 28:32
  And if I could just say, I feel like some people are just letting
• 28:38
  the doctors tell them what to do. I hate to say it that way,
• 28:41
  but it just seems like they let them guide, which isn't bad,
• 28:45
  but sometimes you can ask the question. It's not bad to ask questions.
• 28:48
  Of course, we should listen to hour doctors and nurses nurses because they are
• 28:56
  the ones that really take care of them. But at the same time,
• 29:03
  we know our bodies better than anyone else, so we need to speak speak
• 29:11
  up when we know they've an issue. By the way, I just think
• 29:18
  about it, four years ago, now seven forty three, we were just
• 29:21
  done chanting and cheering for them at seven o'clock. What happened that, Danny,
• 29:26
  The nurses and doctors got so much support during the pandemic and then boom,
• 29:30
  it all went away, and that kind of screwed up. I feel
• 29:33
  like they should always be what we're talking about. Yeah, they should always
• 29:37
  be cheering on and anything. It's he ran. It's so weird than during
• 29:48
  the pandemic they weren't being cheered on and reveered and now radio silence and I
• 29:57
  won't go there, but somewhere fired for not getting the vaccine. So that's
• 30:00
  how much the appreciation went to that. So I just I got to throw
• 30:04
  that out there. It was just it's just a shame that that appreciation has
• 30:07
  kind of left us, but doesn't leave us. Danny that's why we continue
• 30:11
  these talks, because someone's gotta shout them out right. Yea, So Derek,
• 30:18
  you know here, Derek Hook, Danny and I are basically thirty plus
• 30:21
  year old guys who are working on our health condition and health situations. I've
• 30:26
  been hospitalized last few a couple of weeks ago, recovering as I've been talking
• 30:30
  about. Danny just had his thing. Derek, you'll learn, had his
• 30:33
  situation a little while ago. But for all three of us, it's like
• 30:38
  we're all getting older and our bodies seem to be getting older too. I
• 30:42
  don't know if you feel that, but I certainly feel like that's I had.
• 30:49
  So I'm at night, I will so as you know, I'm up
• 30:53
  until more, right, I mean, come on now, good home.
• 31:00
  Know how I stay up with Lately? In the past, I would say
• 31:06
  a year or two, I find myself falling asleep earlier than I usually do
• 31:18
  I in the in the past, I mean, I can still do it,
• 31:23
  but it's a less now. In the past, I was able to
• 31:29
  easily stay up until three in the morning on weekends because during the week I'm
• 31:36
  getting up early, but on the weekends I'm I would easily stay up with
• 31:41
  the three in the morning, watching whatever and uh texting you or Place or
• 31:51
  Max. In the last year or two, I find that I can barely
• 31:57
  stay up past warm in the morning, that all night spent mostly m I
• 32:07
  would say, at least three nights out of a week. I'm a I'm
• 32:13
  tying to see. Really, it's amazing to talk about that, because I
• 32:17
  found since my gallbladder gave me issues that I've been going to sleep at about
• 32:23
  twelve thirty, which is not like me. So it's like, what's going
• 32:28
  on? Yeah, it's it's it's a little worrisome when you can't be on
• 32:32
  that regular pattern you're so used to, you know what I mean, It's
• 32:37
  just a litt uneasy. But my god, to just keep living day by
• 32:44
  day? What was the tiktoks on? L I B I N Right,
• 32:49
  just old parts you and I are really tell me, man, I'm going
• 33:01
  to be in my unless step my mid thirties and September he's man, thirty
• 33:07
  five, thirty four, thirty four, all right, so you're a couple
• 33:10
  of years older than me, and I'm gonna be thirty three in October.
• 33:14
  That's going to be. It still feels like a young age, but for
• 33:17
  us it's not younger. This is the harsh reality that I think has just
• 33:22
  stuck with me through all this if I can, and maybe you feel this
• 33:27
  too, but knowing there is a pattern people not making it through their thirties,
• 33:37
  like I want to reverse that. I want to make it into my
• 33:39
  forties, fifties, sixties, you know. So there's this shit out of
• 33:44
  me when I get all backed up and everything, you know, with the
• 33:47
  with the gall buter, it's like, this is the most sensitive part of
• 33:51
  my stomach. And I'm sure when you feel the most gradual part of you
• 33:54
  acting up, it's like, uh, what does this mean? Right,
• 33:59
  So there's it's like a fear, but then we overcome that fear by just
• 34:04
  crying and working through it exactly he told me. Right, It's like,
• 34:13
  like, let's take the extreme, most extreme example. When I was in
• 34:21
  the hosph I was six years ago and I was very, very sick.
• 34:27
  You knew, never I was like I was. I was nowhere near dying.
• 34:35
  But that was probably the closest I've ever been too dying even there,
• 34:46
  even though I wasn't dying. Maybe that's what it is. We feel like
• 34:52
  we are because it's in our head that we are, you know, dealing
• 34:55
  with this and it's such a dire crisis. But that's interesting whether we really
• 35:01
  are what we're it was just a feeling and sometimes we can't separate that,
• 35:07
  can we Exactly interesting. I got to think about that when I processed that,
• 35:12
  because I'll just say it today, I had a bit of a thing
• 35:16
  and I was like freaking out and I said, God, whatever your plan
• 35:22
  is for me, just let me know. And then hey, I had
• 35:25
  a movement, Danny, and you know what that means. So I'm like,
• 35:29
  right, God to me here for a while, you know. Yeah,
• 35:32
  and you and you and Derek, you're talking to both of you today.
• 35:36
  I've really felt the ability to just talk about what I'm going through because,
• 35:38
  as you know, I spend most of my time on this show alone
• 35:44
  besing about the news of the day and my sports rants, and I don't
• 35:47
  really talk about me because you and I we're all come from the same cloth.
• 35:52
  We don't want to be defined by but it is something to talk about.
• 35:57
  It maybe help others get through as we're talking about it exactly. So,
• 36:04
  yeah, anything else you wanted to add Inny, because I h I
• 36:14
  just love the idea of the webinar. I think if we get more people,
• 36:16
  and I was surprised to learn that I was the only one that asked
• 36:20
  to me, you know, and we both have had this thing for a
• 36:22
  long time. So what does that say. It means that there's not much
• 36:27
  out there. There's some resources, but it's not front and center, if
• 36:31
  you will, Yeah, I think it's right. I think it's like this
• 36:37
  ragion in a way where you don't see the hones to me, honest,
• 36:44
  honest, you're not wearing your shirt and it's hitting them away. Just like
• 36:51
  with Zsisia, it's hidden. You can't really tell someone can't swallow on this.
• 37:00
  You actually try to see them trying to swallow something. This has been
• 37:05
  so importantve we went about an hour, Danny, how about that? Yeah,
• 37:08
  I think that's the longest we've gone ever, and I would love to
• 37:14
  keep the conversation going. Obviously, July is going to be the month where
• 37:17
  we're all kind of rolled out. There is the disability uh disability friend works
• 37:24
  and then we're literally rolled away as soon as July thirty first hits. I've
• 37:28
  never heard from it, right, So there is another reason why I love
• 37:31
  podcasting because it keeps the conversation before July and after July. And that's the
• 37:37
  big Once this facial awareness is gone, you're not going to stop talking about
• 37:43
  it. No, into my life when it comes to having a disability and
• 37:49
  going through what we're going through, I am no longer believing in such thing
• 37:52
  as oversharing. No, we're just sharing our story. That's what it is,
• 37:55
  right, That's what it is. Over that's what it is. And
• 38:00
  I was always always changing, whether it's whether it's one the better for the
• 38:07
  worst. Hopefully it's always for the better. Well, yeah, I was.
• 38:13
  It's always changing, and so of course we know we're going to continue
• 38:20
  to share it. One last thing you mentioned you're a psych major. I
• 38:23
  have to ask, despite all the setbacks and and all the progress, are
• 38:30
  you able to go back to school? Is that still a goal for you?
• 38:32
  Yes? It is. Once I'm done with SOLI therapy, then I'm
• 38:39
  gonna look into going back to school because I can't focus on two things that
• 38:51
  once. So I was. My mom was completely uh time with that.
• 39:00
  Uh she said, whenever you're ready to go to go back to school,
• 39:07
  uh will we'll do it. Just uh, just focus on your swallow therapy
• 39:17
  right now. Again, I struggle as you can with that. And then
• 39:25
  we'll deal with school when I do finally decide to go back, which I'm
• 39:35
  hoping we'll be like in a year or two, hopefully next year, I'm
• 39:43
  gonna I'm definitely gonna do online classes just because it's just easier to stay home
• 39:52
  and not come me back and forth. Well one because it's just here in
• 40:02
  general, but because then I don't have to deal with able, right I
• 40:09
  know. Well, thank god you have your parents help you out. Yeah,
• 40:14
  and that and that's a good thing. Well, guess what, this
• 40:16
  has been a great conversation and we definitely have more. And Danny, I
• 40:22
  love you like a brother, and I know that we always bond, even
• 40:29
  even through baseball, through some sports. I mean, you know, like
• 40:32
  every sport like I do, but we do bond through sports somewhat. Yeah.
• 40:37
  The next the next one would be the Olympics. That's gonna be fun.
• 40:44
  And of course they're in Paris this year, so that's would be a
• 40:47
  lot of fun. Not making Team USA. Actually that might turn off some
• 40:53
  viewers, to be honest with you, because I really love you. Have
• 40:57
  a chance to make it this year. If I'm honest with you. But
• 41:00
  that's what it is, I guess, so it's it's kind of bs,
• 41:06
  but that's just me this phage awareness monk, Danny Voice, love me like
• 41:10
  a brother, and love that we shared the same humor to you. I
• 41:13
  gotta say that. I mean, I could say this is a kid anything.
• 41:17
  It gives me a whole emoji string of It's great. Hey, you
• 41:24
  know what you got to say too? From my conversation with Derek Cook of
• 41:28
  Derek's Bags, that's coming up right after this. Here's your host and Alex
• 41:52
  and we're back here on the Alex Scare Podcast Network. You know, we
• 41:57
  just heard from Danny Voice and love him like a brother. It's great to
• 42:00
  have him on. And I just want to draw your attention to this study
• 42:05
  on Wired magazine. Howe if you guys follow that or not. But on
• 42:07
  Wired they actually on an article just I was about to do this one with
• 42:12
  Danny and Derek called the science of having a great conversation. Performing minim bonds
• 42:17
  can help improve your health, make you mentally sharper, and feel creativity.
• 42:22
  So I think Danny's Danny Voice's conversation was great. And now here's another great
• 42:28
  one with Derek Derek Cook. As you know, Derek has spine a bifida,
• 42:34
  and just like fog syndrome, I think spinea has its own challenges,
• 42:38
  and Derek, you recently had something. But first of all, thanks for
• 42:42
  joining my show today. Thank you for having me. Alex. I'm really
• 42:45
  happy that you did not want to monetize memorial that I think that was the
• 42:49
  right thing to do, and you felt really strong about it. The main
• 42:52
  reason I felt strong strongly about it was my grandfather. He was in the
• 42:59
  Navy during the Korean War. He did not see any combat, but he
• 43:09
  taught guys how to fly planes and he I remember he didn't talk about him
• 43:19
  his time in the navy a lot, but I remember he said he had
• 43:25
  a friend whose nickname was Red, and Red did not he read went over
• 43:35
  to Korea, and he did not. He did not come back. And
• 43:39
  just hearing that, and along with all the other people that laid down their
• 43:46
  lives through our country's history, through all the wars, I just felt like
• 43:54
  me running a Memorial Day sale would be a slack to Red's face and to
• 44:01
  everybody else that laid down their lives. And I think we both agree you
• 44:07
  know, they didn't storm the beaches of Normandy. They didn't lose their lives
• 44:09
  on the battlefield wearing our uniform just to have a day at the beach,
• 44:14
  right. I feel like that gets lost right every every Memorial Day. So
• 44:16
  thank you for truly honoring that day and after Memorial Day, I understand you
• 44:22
  had some things going on, And tell us how you've been adapting since that
• 44:27
  day to what's been going on. Derek, I'm curious. Well, back
• 44:30
  in December, I was right to the hot well. I was sent to
• 44:40
  the hospital by an alliance December, I'll never forget it, December thirtieth of
• 44:47
  black here, all right, for the majority of all black here. I
• 44:53
  was treating a blister on the heel of of my right foot and I don't
• 45:02
  know how I got how I got it got it, but I ended up
• 45:13
  finding out that I had a flesh eating bacteria in my foot, and I
• 45:22
  first they sent me over to the local hospital, Saint Luke's here in Newburgh,
• 45:28
  New York, and then they did not have a doctor there to treat
• 45:36
  me. Uh So I was transferred down by ambulance down to Montefiure Wakefield in
• 45:45
  the Bronx and I come to find out I needed emergency surgery on my foot,
• 45:52
  and I was told if I had waited four more hours, I would
• 45:59
  have have dined. I was told before the surgery two that I could have
• 46:08
  lost UH. I could lose my leg or my entire leg or up to
• 46:17
  my knee. And thankfully I my leg was saved. The I ended up
• 46:29
  having two operations to have the UH to remove all the flight shating bacteria.
• 46:37
  And I was in the hospital down in uh down in the Bronx for two
• 46:45
  weeks, and I was transferred up uh here back up here to Newburgh and
• 46:52
  to a nursing home. And I was there for a little over a month.
• 46:57
  And that was the experience in itself. But yeah, pretty something.
• 47:04
  So a nursing home must have been very weird, right, it was weird.
• 47:07
  I I was, let'd say, I was the youngest person besides the
• 47:15
  nurses. I was the youngest person in there. I did my grandmother.
• 47:23
  She's been dealing with her own medical issues, my mom's mom, and she
• 47:30
  ended up in the same nursing home as well. She was there before May,
• 47:37
  but so she was there and I would see her when I was there.
• 47:43
  But it was it was weird, and it was it was the experience.
• 47:50
  I didn't really talk about this part, but when I was in the
• 47:52
  hospital for five days, I mean, I can't imagine nursing home. But
• 47:54
  I wasn't the geriatric award of the hospital, which is very, very weird
• 48:00
  to find out as I was getting released, but so be it. They
• 48:02
  put me where they had to write, So that's kind of I guess that's
• 48:06
  well, what is at the end of the day, So now are you
• 48:09
  are? Are you infection free? What do what kind of things you have
• 48:14
  to take or how do you monitor something like that? Derek. After a
• 48:19
  little while being in the nursing home, I started going to the wound care
• 48:25
  center that's near my apartment. As sense about mad about early February January,
• 48:37
  Yeah, end of January, early February, and I they were monitoring the
• 48:45
  wounds there, taking care of them. And then after I got out of
• 48:52
  the nursing home, I had to I started five days a week hyperbaric oxygen
• 49:04
  chamber treatment. And what it was was they put me. It was like
• 49:09
  going into like a like a tube. There was glass, there was glass
• 49:16
  where I could see out, and thankfully they had the Yankee network, so
• 49:22
  I could watch Yankee spring training games and uh some Yankee some Yankee regular season
• 49:30
  games. But I was going doing that five days a week for two hours.
• 49:39
  And also I would once a once a week I would see the wound
• 49:44
  care doctor that I am currently uh still seeing, but uh another go ahead.
• 49:52
  I'm sorry. I don't mean to make you sound old here, and
• 49:57
  I'm not trying to, but honest trying. They make like therapeutic socks where
• 50:00
  you sort of prescribed those as well or no. One of things I had
• 50:07
  in the hospital and then in the nursing home and then for a while,
• 50:12
  uh when I got home here was what was called a wound back. And
• 50:21
  what it did was it would like suck like it was like a suction on
• 50:29
  U for both wounds, and it would like suck the wounds, suck any
• 50:37
  like any like back, not bacteria, but anything out of the wounds.
• 50:42
  And then it would yeah, it would uh they get the wounds more close
• 50:52
  to the opening of the wound, like near more of my skin because the
• 51:00
  wounds they were pretty deep, and for a while I was not looking at
• 51:06
  them when I did not want to see them. When they would change the
• 51:12
  wound back, I saw the wound care doctor on Monday and he's saying a
• 51:20
  couple more weeks they'll be closed. But unfortunately he did allow me to do
• 51:29
  physical therapy, which I had here at my apartment for a while, but
• 51:34
  unfortunately I developed a blood blister. So I'm dealing with that and to get
• 51:40
  a little bit bigger. So got wait till that closes, now till I'm
• 51:46
  up back and walking again. So you know, I was thinking because I
• 51:51
  actually was part of a spinder bit of a webinar this past Monday with my
• 51:53
  friend Danny Voyce. I was on the webinar and I realized that even if
• 51:58
  you don't have spin a bit, but some of the stuff that you go
• 52:01
  through is so informative to others. I mean, I'd say, but even
• 52:06
  a naturally, even if someone without Spider bff I could get this flesh eating
• 52:10
  thing happened to them. So from the spider bit of perspective, what is
• 52:15
  your advice when someone goes through that and they don't even have anything. You
• 52:17
  know, it's like a random thing to someone, but to you, it's
• 52:22
  something you got to tackle, but you do it damn good. What's your
• 52:25
  advice to those that maybe don't have spider BFFDA, but do get something like
• 52:29
  flesh eating bacteria because it could scare anybody. Right, Oh, oh,
• 52:32
  it's definitely scary. I remember even even when before I had the second surgery,
• 52:45
  I was still scared. I was thinking, oh I could because there
• 52:50
  was still a point that I could have passed away in the hospital. So
• 52:55
  I was definitely scared as scary. So I would I do say this on
• 53:09
  my Twitter? Uh, well, I have said this a few times.
• 53:15
  Be I would say this, anybody be pro health, take care of yourself
• 53:22
  no matter what it is, because it could it could no matter what is,
• 53:29
  it could be a flecking, flecking bacteria or something else. Go to
• 53:34
  your doctor. Don't be don't be afraid to go to the doctor. It
• 53:38
  could save it could save your life. There as you're getting older, maybe
• 53:44
  you're finding the same thing as I'm kind of finding as new challenges pop up
• 53:47
  almost every year, it seems like. So I don't know if you're feeling
• 53:50
  that too, But just like, all right, well here's another thing we
• 53:52
  got to navigate. But at the first inkling of it, it's kind of
• 53:57
  jarring, isn't it. It really is, it really is. For the
• 54:02
  past oh the past seven years or so, I've been dealing with wounds on
• 54:13
  my feet from uh blood blisters, uh blisters, blood blisters, all that,
• 54:22
  and it's like, oh God, here we go again type. But
• 54:27
  uh, yeah, it's it's just that, Uh. There has been times
• 54:35
  where it's just uh, past several months, I've thought to myself, I
• 54:42
  wish I wasn't born with SPINEFA. But at the same time, I know
• 54:49
  if I wasn't, I wouldn't be where I am right now. I wouldn't
• 54:53
  be the person I am right now. So it's it is definitely jarring going
• 55:00
  through things, especially Daddy older, no doubt about that. The New York
• 55:07
  City Spin and BIFDA Association does a hell of a job getting the community together.
• 55:12
  Are you involved with that at all? I know I asked you last
• 55:14
  time. Was there any further involvement with that? By chance? I need,
• 55:20
  I do need to reach out to them to let them know, let
• 55:23
  them know about me, not soundful of myself, but lem know about me,
• 55:29
  and then let them know about my business stuff. Like Bennett, I
• 55:34
  will tag them in this post today because it seems like it's going to be
• 55:37
  a spine a Biffita kind of awareness day with you and Danny, because you
• 55:40
  both have different things. I often find, especially in this last conversation that
• 55:45
  I was part of Monday Night, I often find that if maybe said it's
• 55:52
  a while ago, but if you don't have spider BFDA, maybe we're all
• 55:54
  connected because maybe we have similar conditions from our different condition. Do you find
• 55:59
  that you have similarities with someone who has CP or something like that and you
• 56:02
  didn't realize it because they don't have to spind a bit but it? Do
• 56:06
  you know what I'm saying exactly? Yep, I know exactly what you're saying
• 56:09
  because one thing, one thing I have. I was involved when I was
• 56:17
  younger. I was involved with when I played baseball. I played baseball when
• 56:25
  I was younger, and I was involved with the Challenger Baseball League, so
• 56:31
  I would play with people with other physical disabilities and then uh mental, oh
• 56:42
  not mental, uh but other disabilities and so and I back then, I
• 56:50
  wasn't really nosy, and I was more quiet and reserved. So I went
• 56:55
  and asked, and I'm like, oh, how does whatever, how does
• 57:01
  what you have affect you? But since I started Derek's Bags, I have
• 57:15
  not being nosy. I haven't asked people like, oh, like, how
• 57:19
  does you know? How does you know cerebral palsy or whatever affect you?
• 57:25
  I have uh seen through like Twitter posts and like doing my own research looking
• 57:34
  things up. I have seen like, oh, this is kind of similar
• 57:39
  to spine of having spine a bit of the like m h, So,
• 57:47
  yeah, you know you mentioned about not being as vocal about this. Let
• 57:52
  me ask you about the advocating obviously of your great parents and and by the
• 57:55
  way, in the hospital say my parents parents say with me. My mom
• 57:59
  was because she's basically been there from the beginning. She knows the history of
• 58:02
  what i' mean going through, right, But did you find you had to
• 58:07
  do a lot of that as well in addition to your parents support. How
• 58:10
  much adversity did you have to do on your own that you didn't realize you
• 58:14
  had to do? If you if you will, Oh, oh, I
• 58:17
  had to do I had to do a lot, especially both and both in
• 58:28
  the hospital and both and also in the nursing home. I had to I
• 58:37
  had to do it a little bit in the hospital because I don't know if
• 58:43
  this happened to you, but when I was in the hospital, when a
• 58:51
  few days before I got released that I remember a nurse came in and said,
• 59:02
  oh, you're being released today, and I'm like, what I don't
• 59:07
  have I don't Yeah, I have an apartment, but I need rehab and
• 59:15
  stuff. And then I asked who the guy who ordered this. I had
• 59:22
  to keep saying no until I was set up to go to the nursing home
• 59:28
  that I went to in the hot. When I was in the hospital,
• 59:30
  I had to advocate for that, and then when I was in the nursing
• 59:36
  home. Well, both in the hospital and the nursing home too. There
• 59:40
  were times with the woundback I would like press the button because there were in
• 59:49
  the hot in the hospital and at the nursing home there was a little clicker
• 59:53
  thing with the button, and I would the day the days there were days
• 1:00:00
  where I knew I needed the womback dressing change and they would say, okay,
• 1:00:08
  yeah, I'm got yeah, I'll get to it. But then some
• 1:00:19
  days I had to wait the next day. And then also too, when
• 1:00:25
  I was in the nursing home, I would sometimes have a problem with the
• 1:00:31
  woundback, and then I would have to speak up and say numerous times,
• 1:00:40
  hey, I have a problem with the wombback, so you just help me
• 1:00:44
  with this. So yeah, definitely had to speak up for myself. It's
• 1:00:51
  funny. It's not funny, but it's amazing because I feel like I went
• 1:00:53
  through the same thing where not so much living arrangement. But they were supposed
• 1:00:59
  to do this one test. The MRI I c P right be vocal about
• 1:01:02
  it, and they amount a clear diet for two days in a row,
• 1:01:07
  and then they kept pushing off this thing until they realized it was outpatient.
• 1:01:12
  Now, granted, they did help me through my medical crisis, but we
• 1:01:16
  didn't get a full follow up and we kept asking for it and they just
• 1:01:21
  they didn't do it. So I get your frustration. It's like, you
• 1:01:23
  know, I can't go get I have to see the right people before I
• 1:01:27
  go. I think that's what you're talking about also, Derek, Yeah,
• 1:01:30
  yeah, exactly, because in the hopel there was only to change the wound,
• 1:01:37
  to change the womb back. With the womb back, there was the
• 1:01:42
  one doctor who did the operation. He would have to do that or insistant
• 1:01:47
  of his would have to do that. And then with the with the nurse
• 1:01:52
  saying, oh you're being released today, and it's like whoa whoa, whoa,
• 1:01:58
  Wait a minute, who this? And then I never the doctor that
• 1:02:04
  ordered me ordered that I be released. I don't know if you experience experienced
• 1:02:12
  this too. I never even met the doctor. He never even stepped foot
• 1:02:16
  in the room I was in, and I was in the hospital for two
• 1:02:22
  weeks. It was ridiculous. No, I definitely met my doctors and and
• 1:02:29
  whatnot that were treating me. But I felt like it was sort of a
• 1:02:32
  and believe me, the medicine doctor. I don't know what they call her,
• 1:02:37
  but she was like the on floor doctor who was coming around and telling
• 1:02:42
  us. I did feel like it was what the top was telling her to
• 1:02:45
  tell us, you know what I mean. It wasn't like yeah, connection,
• 1:02:49
  it was like she's getting work from the top and delivering it to us.
• 1:02:52
  I can't fault the mintal man there. I just wonder why the top
• 1:02:55
  couldn't just come down and talk to us. That's all I'm saying. That's
• 1:02:58
  all I'm saying, exactly, you know exactly. That's that's how it.
• 1:03:01
  That's how it was with that one nurse, with the one nurse who's who
• 1:03:07
  said the doctor was who? The doctors that didn't treat me for anything,
• 1:03:14
  who was just like the floor doctor. She was just like a mettleman saying
• 1:03:21
  stuff. It was really it was really messed up. It was. And
• 1:03:27
  then in the nursing home. One thing, uh, one of the biggest
• 1:03:37
  reason was there were days that I had to wait the next day to get
• 1:03:45
  the wound back dressing change. Was there wasn't enough staff. And then you
• 1:03:51
  had I forget how many people were on the floor that I was on,
• 1:03:55
  but you had all these people and maybe one or two nurses for the floor
• 1:04:04
  going around that knew what to do with that, knew what to do with
• 1:04:10
  certain things. So it was ridiculous. Yeah, I'm going to read your
• 1:04:15
  bio because just or inspire me to ask a new question. But Derek's Bags
• 1:04:18
  fell with Derek Cook. Derek's Bags as an online small business started by a
• 1:04:23
  thirty three year old Derek who was born with spina bifida and when he goes
• 1:04:28
  out he needs to carry catheters and other medical supplies in a bag. And
• 1:04:31
  of course that experience led him to make medical bags for people who really need
• 1:04:36
  it. And when you write catheters in that bio, I have to ask
• 1:04:42
  getting supplies from both the hospital and the nursing home during your stay. Was
• 1:04:46
  that a lot of work to ask for what you need? I tell you,
• 1:04:49
  I was wandering around the floor myself when I was able to walk around
• 1:04:54
  and say, hey, I need this? Can someone only with this?
• 1:04:56
  Like I was very advocated, but sometimes I didn't have the supp whies I
• 1:05:00
  needed. Did you find that a problem? Yes? Just in the hospital
• 1:05:08
  they put a cather in me for I forget what day it was, but
• 1:05:15
  they put a cather in me, and I think it was right after must
• 1:05:21
  have been right after the first operation. I think they put cather in me.
• 1:05:28
  And then I think it was a week later they came to take it
• 1:05:33
  out. So then I'm like, wait a minute, you're putting this.
• 1:05:41
  You put it in, but now you're taking taking it out. And then
• 1:05:45
  the nurse said, oh, we can't. We're only allowed to leave it
• 1:05:50
  in for so many days because of infection. So I was like, all
• 1:05:55
  right, fine, if that's the hospital hospital regulation, I'll go buy that.
• 1:06:01
  So then I called up I called up my parents' house and said I
• 1:06:10
  remember talking to my dad. I said, hey, Dad, can you
• 1:06:13
  go to my apartment get some cathers for me please? They took the cathere
• 1:06:16
  out of me and so then so he's like sure, and he was mad,
• 1:06:24
  uh too, but understanding. So yeah, and for everybody that's listening,
• 1:06:33
  to be clear, you're not in what do they call it, embedded
• 1:06:36
  catheter or or whatever they call that, you're not intubated with the cath No.
• 1:06:43
  I I intermittently cathorized. So so yeah, so that's why that's why
• 1:06:54
  I called my dad. I guess, how's the business and while you're dealing
• 1:07:00
  with this health crisis, Derek, because obviously Derek's bag is a a big
• 1:07:06
  deal, and maybe'll got how you get your medical supplies covered. I'm curious
• 1:07:11
  about that. Maybe that's an informative part of the conversation, which having a
• 1:07:14
  minute but to your to your business, being a small business owner and having
• 1:07:18
  medical issues, tell us how you balance it both. So yeah, for
• 1:07:30
  so, when I was in the hospital, I was not dealing. I
• 1:07:35
  was not working on anything. For I want to say the first three four
• 1:07:47
  days I was in the hospital because I didn't have a laptop. I only
• 1:07:53
  have my cell phone, and I couldn't really do much with my cell phone
• 1:07:58
  besides go on Twitter. But once once my dad, uh brought uh the
• 1:08:09
  laptop down. I was working on stuff uh in the hospital. When I
• 1:08:16
  was in the nursing home. If I got a or same thing, if
• 1:08:21
  I got an order, I would put in orders and then I would work
• 1:08:30
  on stuff when the Wi Fi was good, because I wasn't that great in
• 1:08:34
  the nursing home. But anyway, when I didn't have physical therapy uh or
• 1:08:44
  occupational therapy, I think it's called I didn't have those things in the nursing
• 1:08:49
  home, or if I didn't have to go to employment, I was working
• 1:08:57
  at I was working on stuff, uh, my business. And then once
• 1:09:02
  I got home, I would I when I when I first got home for
• 1:09:13
  uptil, what was it like the middle of May? Since I was going
• 1:09:20
  to U won't care appointments five days a week. I would work on stuff
• 1:09:29
  some stuff in the morning, and then I would work cut work on stuff
• 1:09:35
  at night. After I had physical therapy stuff like that, I had dinner,
• 1:09:44
  and then sometimes if I couldn't sleep, get up work on work on
• 1:09:49
  stuff or No, that wouldn't that great. But yeah, now you're at
• 1:09:57
  You mean you were literally sitting there designing new bags? Is that right?
• 1:10:01
  Oh? Yeah, I would, I was literally yeah, in the nursing
• 1:10:05
  in nursing home and not not so much in the hospital because I wasn't coming
• 1:10:11
  up on I wasn't coming up with any new ideas. But in the nursing
• 1:10:15
  home, I was literally sitting on the bed I was for the room I
• 1:10:23
  was in. In the room I was in in the nursing home, I
• 1:10:26
  was literally on my laptop working on having photoshops, had photoshop open, literally
• 1:10:35
  working on designs and the nurse the nurses, Uh, not so much.
• 1:10:41
  At the hospital. I did bring up my business to some nurses at the
• 1:10:48
  hospital, uh, But at the nursing home, I uh, I would
• 1:10:59
  I did bring up my business, uh because uh. One way I was
• 1:11:04
  my dad. He brought some clothes over and I he said like, oh,
• 1:11:11
  do you want anything specific? And I said, yeah, I would
• 1:11:15
  like I want a hoodie his sweatshirts that says be nice or go away that
• 1:11:24
  I designed to sell in my Etsy shop. So then people were like,
• 1:11:33
  oh cool, well nice sweats nice sweatshirt, and I said, yeah,
• 1:11:39
  I sell it in my Etsy shop. So then I'd have my I'd have
• 1:11:43
  my wallet with me. I'd take my wallet around with me when I was
• 1:11:48
  in the nursing home, and I had had business cards in it, so
• 1:11:55
  i'd and you have business cards and same thing. At the wound care center.
• 1:12:03
  They would say, oh, cool, cool, nicety, and then
• 1:12:11
  some of the nurses said that, and then I said, yeah, I
• 1:12:17
  I owned my own online business. And then uh, and then they asked
• 1:12:25
  me, oh, where is it, I said I and uh, I
• 1:12:28
  said, I also sell bags, fanny packs, buttons, t shirts.
• 1:12:35
  Hey, you believe in the Constitution. I'm looking at the store now.
• 1:12:38
  There are so many different designs, but you are very American and I like
• 1:12:42
  that about you, Derek too. Thank you. Yes, yes, I
• 1:12:48
  it's it's awesome. And of course the new wheelchair accessible wheelchair Guy design is
• 1:12:56
  on is on these bags as well. It's a lot of great selection,
• 1:12:59
  Derek. So I plugged you for doing that. And I love the baseball
• 1:13:00
  one. I'm looking at that now too, the baseball one and uh the
• 1:13:04
  ones with the disability is not a bad world. You're you're very eclectic in
• 1:13:09
  your design. I think that's what what you're going for, right, Yes,
• 1:13:14
  I am. You bring up the baseball his greatest sport in the world,
• 1:13:19
  and those those two ones. Actually I actually thought of that while I
• 1:13:29
  was in the Thursay home and at the time baseball season was coming up,
• 1:13:33
  so decided to decided to work on that. So and uh put it on
• 1:13:42
  the bag, and uh, you've got Jeff Nelson following you. I mean,
• 1:13:46
  some really good guys following you there. Derek also, not not to
• 1:13:55
  brag, but since you bring that up. H the first game, my
• 1:14:03
  dad and I went to my first Yankee game, my dad, I went
• 1:14:08
  to a couple of months ago. I took a couple of pictures of myself
• 1:14:13
  at at the stadium and I said, uh, I didn't know if I
• 1:14:19
  was gonna make it here, some long lines. I didn't know if I
• 1:14:25
  was going to make it here. I'm glad, I'm glad. I am
• 1:14:31
  I'm glad. I'm here with my dad. And and then my phone buzzed
• 1:14:39
  and then I saw that they can Sikou liked it and then followed me.
• 1:14:45
  I was like, man, My dad was sent to the right of me,
• 1:14:51
  and he was reading the newspaper before the game, and then I got
• 1:14:58
  them on his shoulder. I said, Dad, look, it's like,
• 1:15:03
  what's following you? Yeah? And then the hyperbaric chamber technician at the Womb
• 1:15:15
  Career Center Steph. She she's into baseball, so I told I told her
• 1:15:26
  and I told her and she was like, oh my gosh, he's following
• 1:15:30
  you. So no, I know, Derek. And I'm feeling that way
• 1:15:38
  too. It's like, when you're going through a medical crisis, that baseball
• 1:15:42
  diamond feels like twenty thousand miles away, even though you're like literally near the
• 1:15:46
  stadium right so you're geographically a little north of it. It does fly ways
• 1:15:50
  away when you're going through a lot of crap. Let's just put it that
• 1:15:54
  way. Oh oh yeah, I like, like I said, I I
• 1:16:00
  was in the hospital. I didn't know if I was going to make it.
• 1:16:02
  And then I'll uh uh it was a couple of days after a couple
• 1:16:10
  of days into me being into the hospital. Uh it was. I think
• 1:16:15
  it was a day after I had the second surgery, and then uh my
• 1:16:19
  dad said, oh, you got a couple more Yankee games then you and
• 1:16:25
  then and then he gave me a hug and then tearing up about it a
• 1:16:30
  little bit right now, But I could tell you're choking up about this.
• 1:16:35
  You're a very humble guy, Derek. So I got to ask you,
• 1:16:39
  you've been grateful it sounds like your entire life for whatever God gives you to
• 1:16:43
  overcome. You're grateful for every experience, every crisis that you've overcome. But
• 1:16:48
  does this kind of experience make you a little more grateful? Would you say
• 1:16:53
  for being here and being able to go to those games? I would think
• 1:16:56
  so right. Oh, yes, I I don't know what higher power there
• 1:17:04
  is, but I am where. I am blunted. I'm grateful to be
• 1:17:13
  alive, and I am grateful to be able to go to more Yankee games.
• 1:17:23
  I'm grateful to be able to spend time with my family, especially my
• 1:17:29
  nephew. Yeah, I'm grateful to be alive. And I promised. I
• 1:17:38
  will admit I am a little bit of a homebody, but I did promise
• 1:17:45
  myself when I was in hospital. I promised myself the next game you're at,
• 1:17:50
  by the way, I would love that if you let me know when
• 1:17:53
  you're there and I'll come meet you, that would be awesome. I'll definitely
• 1:17:57
  let you know. By My dad said something the other day about maybe going
• 1:18:03
  June twentieth. I think you said, but we also got tickets for July
• 1:18:10
  twenty second. But I'll definitely like, I'll definitely send you a message and
• 1:18:14
  let you know the next time my dad and I are going to a game.
• 1:18:18
  You know, I gotta say we check in on each other right time
• 1:18:23
  and time. I tend to ask you more about Mike stop. I'm gonna
• 1:18:26
  I'm gonna focus on you a lot more when we talk because I feel like
• 1:18:29
  it's like, how's my content looking? Anyway, That's a different story for
• 1:18:31
  another day. But the check ins, though, do you feel like many
• 1:18:34
  people reach out or do you think there's still that kind of no one checks
• 1:18:41
  in on each other kind of feel What is your take on that everybody should
• 1:18:45
  be checking up on one another, seeing how they're doing, whether they're going
• 1:18:56
  through a crisis or or not. People people should be checking up on one
• 1:19:02
  another and also being kind to one another a little bit more. I think
• 1:19:10
  the I don't know if it's a mix of maybe it's more because of social
• 1:19:16
  media, but I think a lot of people just think of themselves in a
• 1:19:26
  way and aren't as kind to one another as they used to be years ago.
• 1:19:34
  So I say this on Twitter as well. People should be a little
• 1:19:43
  bit more kind to one another as well. And how is Oh no,
• 1:19:49
  absolutely, And I just think there there's just so much stuff going on,
• 1:19:55
  and it really divides us sometimes, I guess you'd say, and that's where
• 1:19:58
  we got to eliminate the division. Uh, Derek, I gotta go back
• 1:20:00
  to baseball though, because obviously it's your sport, it's what got you through,
• 1:20:04
  and it's there's such a baseball community out there. How does that help
• 1:20:11
  you get through something like this? Oh, it's oh, I'll even take
• 1:20:15
  your step further. Baseball it has always gotten me through difficult things through my
• 1:20:27
  life, even since I was okay, okay, whether you go to a
• 1:20:36
  game or you're watching it on TV or listening to it on the radio,
• 1:20:42
  for that now two and a half to two hours forty five minutes, you
• 1:20:50
  don't You could just watch, listen, watch, or listen to a game
• 1:20:57
  and you don't have to you don't have to worry. You could just forget
• 1:21:01
  everything that is bothering you. For that for those two and a half hours.
• 1:21:08
  It is great. It's definitely great that we're able to bring a unique
• 1:21:14
  perspective to the REPBX community, if you will, and whatnot, because as
• 1:21:18
  adaptive athletes or people with disabilities, I feel like that brings a different perspective
• 1:21:23
  to these communities. So I think it's pretty cool to be able to blend
• 1:21:27
  your adaptability and your love of baseball and sports into one, wouldn't you say?
• 1:21:32
  I agree? I I know I sometimes think twice about posting on Twitter
• 1:21:47
  about like let's go Yankee, say let's go Yankees on his tweet or just
• 1:21:57
  sharing that like if I'm a Yankee game or something like that, but it's
• 1:22:03
  yeah, it's it's great to blend, to blend both things well because when
• 1:22:08
  you post about what you're going through right then that educates people who don't have
• 1:22:14
  a disability. Oh wow, okay, we can learn from Derek and that
• 1:22:16
  is such a powerful that's the best part of the platform is to be able
• 1:22:20
  to educate through our pages. Oh oh, I agree with you, And
• 1:22:28
  I know I haven't I know I haven't spoken about spy spining and having and
• 1:22:41
  having it and what it's like to what's like day to day to have it?
• 1:22:49
  Spin and BEA Awareness month is in October, so I use I used
• 1:23:01
  to be like more a private person, but I do plan on sharing more
• 1:23:14
  of what it's like personally to go what's like day to day personally two have
• 1:23:24
  spine, what's like to have spine befa, uh, stuff like that,
• 1:23:29
  and going back to what I was dealing starting to deal with back in December.
• 1:23:36
  I I have shared that a little bit as well, because I think
• 1:23:47
  not to sound full of my full of myself, but uh there had I
• 1:23:53
  have posted on Twitter saying like, oh, please be pro health because I
• 1:23:59
  don't why anybody going through what I went through, because I think like for
• 1:24:11
  a while I was beating myself up in the hospital and then in nursing home,
• 1:24:18
  and then when I got back home here, I was beating myself up
• 1:24:23
  because the wound that I had on my heel on that last year that the
• 1:24:33
  flushing bacteria got in somehow. If I got that treated soon, I feel
• 1:24:42
  like if I got that treated sooner, I wouldn't be going through what I'm
• 1:24:46
  going through by I went through and what I'm still going through by At the
• 1:24:51
  same time, I feel like I should in a way, if I have
• 1:24:57
  the platform that I have on Twitter and through the business, I have to
• 1:25:02
  like war like to warn people and to kind of plead with people, take
• 1:25:09
  care of your take care of yourselves, because I don't want people to go
• 1:25:15
  through what I've gone through. And if I could just add it's I saw
• 1:25:23
  yesterday. I forget the golfer's name. I think the guy's name Sean Ram.
• 1:25:27
  I saw that he had to pull out of the US Open, I
• 1:25:30
  think because he had an infected foot. And then like right away I saw
• 1:25:38
  that. Once I saw that, I felt like I needed to say something
• 1:25:44
  like, oh, please be pro help and just share a little bit of
• 1:25:48
  what I went through because I did not want. But I've just seen Pete.
• 1:25:57
  Were there any warning signs prior to all this is happening? Because here's
• 1:26:01
  before my gallstone. We think I passed the gallstone. Before that passed through,
• 1:26:06
  I had gotten really sick three weeks ago, but I soldiered on,
• 1:26:11
  and of course we know what happened after that. So there are warnings.
• 1:26:15
  Our body tells us, but we all listen. That's the That's the thing
• 1:26:17
  I've learned during this whole project. I'm not listening exactly. I I did
• 1:26:24
  not all admit I did not listen to my body either. Uh, there
• 1:26:30
  was I did have some warning science. So it's about I want to say,
• 1:26:38
  like four five days before, no, about six days before I went
• 1:26:46
  in to the hospital, I had I had a blood bluster. I saw
• 1:26:55
  a blood blister on my foot, and I thought to myself, okay,
• 1:27:01
  fine, I was like, oh crap, here we go. Not something
• 1:27:05
  else. I thought nothing of it. I'll just stay off my feet the
• 1:27:10
  best I can. And then a few days after that, there was my
• 1:27:19
  foot started smelling and then and Laura Bell should have been going off in my
• 1:27:25
  head, like oh, go to the doctor. But I thought what I
• 1:27:30
  was doing. What I thought, I'd be okay and just keep doing what
• 1:27:36
  I was doing, treating the wound I had on my heel. But the
• 1:27:44
  morning that I went into the hospital, I assuming I was taking a shower,
• 1:27:53
  and then I looked on the I looked down at my foot and it
• 1:27:59
  was really my up to like I want to say, a little bit above
• 1:28:04
  my sin it was red and then it was like a purpleish color. So
• 1:28:11
  then I thought to myself, all right, say this is not good.
• 1:28:16
  Uh all Frank's taking a shower. And now then I'm gonna call my parents'
• 1:28:24
  house and either my mom or dad take me to hospital. And call my
• 1:28:30
  parents' house and spoke to my dad and I said, Dad nat to go
• 1:28:34
  a hospital. So now, when someone undergoes a medical impatient, then you're
• 1:28:41
  dealing with the nursing home. Can we talk about insurance before we wrap this
• 1:28:45
  up today, because when it comes to medical supplies, you're making the bags
• 1:28:49
  in hopes of probably covering some of the expenses and living life as well.
• 1:28:54
  But talk about the insurance. Is there a place recommend to get catheters from
• 1:28:59
  that maybe we don't know about because I know there's so many out there that
• 1:29:01
  probably have it. They want admit it, but they probably used it gathered
• 1:29:03
  right, So anybody else some information? What can you tell us today?
• 1:29:09
  So the the company that I get the cath the cathers I use uh from
• 1:29:18
  is called Virum Healthcare b y R A M. And they're based out of
• 1:29:30
  I want to say, uh, yeah, they're based out of Rye,
• 1:29:33
  New York. And that there has been uh a uh with the insurance that
• 1:29:43
  I do have, there have been some times where insurance one eurologist to write
• 1:29:53
  out a prescription to uh get the cathers. So there there has been that.
• 1:30:01
  Thankfully with the insurance I have, I don't have to pay out of
• 1:30:06
  pocket unless there had. There has been a few times, uh, not
• 1:30:12
  with the cathers, but lately with the hospitals. The hospitals say there was
• 1:30:18
  a few times I had to pay out of pocket. All right, well
• 1:30:23
  there, this has been great, and I'm gonna get you connected with the
• 1:30:27
  ny SBA because you got a message out there that needs to be spread more.
• 1:30:31
  And of course you've got a business to run, and I think a
• 1:30:34
  cool collaboration or partnership would be awesome. Well, yes, I would love
• 1:30:41
  that. I have been trying to reach out to UH, a local hospital
• 1:30:49
  and then Helen Hayes to see if if I could sell UH some bags in
• 1:31:00
  their gift shops. I have not I have not heard back from them,
• 1:31:08
  but they can cry and so but I would I would love to have a
• 1:31:13
  partnership with them as well. So Derek's Bags that's d E R R E
• 1:31:19
  K S B A G S. And then any email or number that they
• 1:31:24
  can reach you out that we can stay in touch with you for listeners that
• 1:31:28
  are interested. Yes, I mean you could email me at Derek's Bags at
• 1:31:33
  gmail dot com. And also you could if if you have Twitter or x
• 1:31:43
  whatever you want to call it, you can find me on there. It's
• 1:31:47
  Derek's Bags, d E R R E. K Apostrey S Bags. Well,
• 1:31:54
  there you going I'll drop your etty link in the description below, so
• 1:31:58
  great copy and keep its post on things as we were all along. And
• 1:32:02
  of course the million dollar question is what's the sale for Fathers That we didn't
• 1:32:05
  get into that yet? Oh yes, so actually actually I did, actually
• 1:32:14
  because I wasn't getting any sales with that. But starting next next month,
• 1:32:26
  I think I'm gonna run a sale for this disability Pride months, So anybody
• 1:32:33
  that is listening you can stay tuned for that as well. And by the
• 1:32:41
  way, I'm just gonna say this, it is amazing that in one month
• 1:32:45
  of the year disability is highlighted and then the rest of it goes away.
• 1:32:48
  That's why you and I continue the conversation beyond July and even for July at
• 1:32:53
  this point. Right, So you got right? Yeah, yep. Disabilities
• 1:33:00
  should be talked about, no matter what, disability should be talked about all
• 1:33:05
  year, three hundred and sixty five days of the year. Amen. All
• 1:33:12
  right, Derek on that, No, let you go, But thanks for
• 1:33:14
  joining on the Alex Garrett Podcast Network today. Well, thank you for having me