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Show 45 - Derek Colunduno Part II
Derek Colanduno is half of the highly successful podcast team, Derek and Swoopy. Their podcast, Skepticality, was one of the first podcasts created and one of the few early podcasts still thriving.
In the fall of 2005, Derek suffered a stroke. A young man, with no previous warning signs, Derek woke up three weeks later to find himself in a hospital, hooked up to machines and unable to walk or talk. This is part two of a two-part interview that explores his experiences relearning basic skills and his ongoing struggle to adapt. His story will give you insight into the experiences of someone with a brain injury that may help when you encounter an individual with a brain injury.
Disability 411 show No. 45.
Beth Case: Hello and welcome other the disability 411 podcast. I’m your host Beth Case. Now, let me keep the introduction to this show just a little bit short. I am trying to get everything packed and ready to go to the AHEAD conference. By the time this gets back from the transcriptionist and gets posted, it’ll probably be right after the AHEAD conference so I hope that I met some of you there and that you learned a lot and I hope that I came home with lots of great new information to share with you. This show is the second half of the interview with Derek Colanduno from the Skepticality podcast. If you didn’t listen to show 45, you might want to go back and listen to that one first. This interview will probably make a little more sense if you have the lead into it. And of course, you could find that in all of our past shows at disability411.jinkle.com. So, I’ll get back to packing while you are listening to my interview with Derek.
Beth: Now you mentioned that it was a really frustrating time. What were some of the things that were the most frustrating for you?
Derek Colanduno: Well, you know when I first woke up, of course I said, I said it earlier but it took me a while to even figure it out what will happen. Everything is like a dream when I woke up. Its like, it’s very foggy and I couldn’t make sense of the worlds around me. That’s bazaar to say that but it’s very true and I guess the normal side effects of coming out of a coma like that is a drug, it’s induced (inaudible) and it took me a while to wake up, I guess and usually it takes a little bit shorter and I woke up after quite a while. It’s like, they took me off the meds. It kept me in my coma and it took a more than a week before I kinda came to. And that was actually the really scary part I guess cause that’s the part when they say, okay we hope you wakes up and that’s the part when I woke, I was it’s like, (inaudible) we confused. So it took me a while to figure out what was going on. And when I did figure out what was going on, the same made really bugged me out of everything. My speech thing it’s a (inaudible) to even figure out (inaudible) understand me (inaudible) trying to make noise and they were like, look at me like you making knows that. To me it’s like you know, whatever I was mumbling whatever is that, my voice, my speech was really do that bad but in my head I was saying words and I really wasn’t and you know, the first thing I noticed, I couldn’t walk or move my legs very well. I could do it but not very well and I don’t want to be not able to walk. So every time that rehab nurse came to my room at a hospital, I just slapped myself on the side of the bed and I just thought, just I didn’t care. I just use my leg. I hopped myself up and I tried to walk and of course you really catch me and then she said “okay. I know what you want” and so she allowed me to kinda use her, you know, to like walk.
Beth: To lean on.
Derek: Yeah. She would take me outside of the room and send me down the hall and back. I would do that everyday. And she said “you stubborn”.
Derek: (laugh) Even my wife and Robins like, yeah she is and (inaudible) thing. I didn’t (inaudible) like everything else. The only thing to do is walk. It’s like you’re not gonna, have me in wheelchair my whole life from now on. They of course had me in one for a long time but I didn’t like there. I don’t wanna be in this. It’s like get up. I just get myself off and I would just, so I (inaudible) and of course when I first sort to come up wake up like that, I was able to leg move. I would actually get up during the night, I just try to walk and with knowing around. Of course the nurse will catch me in that
Beth: (laugh). I see. How many times do they came in and find you on the floor from trying to walk (laugh).
Derek: Like almost every night and oh I mean, after a while they have to strap me down every night so I don’t get out. You know, it’s like, it’s funny as that actually, that’s the part where I realized that I was awake to longer than I thought I was because I remembered that I was having nightmares about being tied down when I woke up for a business trip and that’s when I realized “Oh, shit”. That’s when I was actually in the hospital. I was actually tied.
Beth: You were actually tied down.
Derek: Yeah, I was. It’s like, that was a nightmare. That actually was real. So that’s I remember, you know, that actually happens. And at that time, for a long time, I just thought it was a dream, part of the dream. Cause, you know, the thing is, like, I had this (inaudible) when I first got home from a business trip was. I do those business trips, I was in the hospital and the hotel (inaudible) on. So, it took me a while to realize that it wasn’t a dream (overlap)
Derek: That was actually me in the hospital. You know cause, my brain thought it was part of a dream when I was in my, in the hotel. But it’s very bazaar. So, at first, I ever wanted was just to walk. I didn’t care about anything else. I didn’t care about speaking or talking or anything else. I wanted to walk. I just wanted to walk and I got that back first. Of course, it took me a while before I got my balance back to where it should be but actually I’m still cannot walk with you know walking as I tried to walk too quick or sometimes, I’m at the point now where (overlap)
Derek: So much better to the point where I don’t remember cause I’m not perfect sometimes and things like my legs get out some under me. No then (inaudible) I’m still not completely perfect with my balance somethings but you know, for the most part, I, you know, it’s not a big deal now but it wasn’t until I got my feet back under me before I really felt like I could get back to norma. And once that happened, I could then think about actually following my rehab routine and it took me a while because my full time rehab, my full time… geezz, that almost was a year. I had to go into the hospital like every morning at about 6 in the morning and I get home into about 6 at night. About 12 hours. It took 12 hours of the day on full time rehab.
Beth: Now, okay, so we are looking at about a year-and-a-half or so I go and like I said, previously you’ve made you know, lot of progressed but there are still some things that you’re struggling with. And what is it in a to be someone who obviously was very intelligent, you know, in the computers which is kinda abstract and then to be you know, dealing some of the concentration problems, focusing problems, I don’t know, memory problems or some of the things that you have as a result. What’s difficult for you now?
Derek: Oh wow! First few things well, like you said, it’s like you said, I sound like I talk pretty well. I… Of course, in my head, I know all the thing than doing wrong and just because you know my wife and Robin actually pointed out because the doctors told to them to keep doing that cause the only thing it’s only way I ever know till 6 are little things, they are still wrong and so that still an issue for me and still have that self (overlap)
Beth: Until (inaudible) tell them just stop nagging me (laugh)
Derek: Yeah. That was. But I cant get it. But no, the doctors told us to do that. (inaudible) so they do it (inaudible) what you say again? Repeat that again.
Derek: (inaudible) you know what I mean, now listen to voice, so a lot of times they are like it’s a knight. The doctors told us, you’re not allowed to say anything wrong. We have to make you actually say it’s a right words. Cause you know, use your bad words as a crutch you know, its like I, a lot of times when I have to do is during my speech therapy, they’re gonna train you to do it. I actually always have to search for a word than I can’t actually say correctly. So I’m always talking with words I can’t say. There are lots of words I can’t cause my vocabulary is really vague. In the past, it’s never a problem. I can say everything. So now, there are lots of things I can’t really say. So I avoid certain words and they catches me doing in that. Like, you’re say the words you wanted to say (inaudible) I cant say that. Well make you learn it. There are still times I have to learn a word but I can’t say. So it’s like a (inaudible) words like that. Of course, then lot of things I still can’t do which are bazaar to me but so then can see it, I just can’t do it. Like I said, use a program for a living (inaudible) great computer programs for some pre-cutting edge stuff. I worked for (inaudible) engineering firm and I do a lot of mathematical, (inaudible) programs to do artificial intelligence, (inaudible) like that. One of really big stuff and to me before, that was all easy cake. It was natural for me. I cannot do anything like that anymore. I can’t program at all. It does make sense to me cause I can understand it as look at it, I can understand what I’m looking at. I just can’t do it. A lot f weird funky things like that. You know, it’s all that little stuff that makes so various many things I still can’t do that I used to be able to do and I completely vividly remember doing it. And that’s very frustrating especially at work. That’s the biggest one. When I’m at work, you know, I remember how I used to be and especially my sense of time completely is different. I used to have a perfect sense of time. If you ask me without, I didn’t have to look at the top clock right now and you said what time is it? I will tell you exactly. Like to the minute. It was looking (inaudible) was a watch or a clock, anything. I was like, I was able to tell the time exactly and I also was had that really good memory for meetings or events so at work, it was great. I never, was a second major. Id ever thought about it but in real come it on it. I used to do, but now was not, (inaudible) meetings, (inaudible) how to use it a planner or outlook or you know, whatever. Just whatever where I had to go, when, what time, exactly where, what was her number was, all that was easy for me, but now, of course, I can’t do that at all anymore.
Derek: My sense of time now was so bad. It’s like, if you ask me what time it was now and look to my side here. I said, well, it’s little bit late. It’s almost summer. It might be 8 or 9 at night for all I know, but before, I can tell you exactly what time was, number what it was, things like that frustrating especially getting back to work. It’s been very frustrating cause you know, all that stuff becomes amplify. You know what, it’s like a dream my full time rehab when I still can’t talk or although big things were wrong. It was very, it was frustrating but it was different type of frustrating cause like it so obvious even to me. I needed to work on it a lot of things. So it’s me, okay I can (inaudible). I know exactly what I’m looking at but all there (overlap with right) but all these weird things are last like my, my memory and all that sense of time the doctors told me (inaudible) all come back. Just takes time. I said okay. But I still remember exactly what it is like to have that. I am so remember exactly what it’s like the program all that, I remember all of that. It’s frustrating I can’t do it. I could talk, I can walk. I can actually, I can run. It’s I can do. Of course I’m not good at it but I can cause I need to do so its frustrating, if you were in the position where it’s like, its if somebody just met me right now, they would never really know. You now, its like and at work sometimes its easy for people to forget. It’s like they knew when I first got back, you know, they were, certainly I’m back, I started to come back to the office like, its like two or three hours, about two or three times a week just to get back to the office, just to be around people. It’s part of my rehab. And they all realized what was wrong when I first came back. You know, of course, it’s very obvious. I cannot walk. You know, I can walk but it’s very slow. I have been to the walls because my balance is really so poor. It was very obvious that I couldn’t do amazing I use to be able to do though. But now are getting so much better that sometimes, it’s frustrating for them cause they forget that there are somethings I still can’t do but they still remember the fact that I used to be able to do all that stuff very easily. So I’m not weird grey area part of my rehab now. Its like, it just like okay. I have this, it’s like the roller coaster (inaudible) very last few clicks all the way up to the top before the ride starts (laugh) like (inaudible) I can feel that it’s right there but other people can see me like Wow! You’re so… You’re doing so well. I said, yeah, but there are still (inaudible) problems. I don’t see any of that. So did you understand?
Beth: Right Yeah. Are there any techniques or tools that you are using like, are you using a day planner now, or anything that is helping you (overlap)with some of the frustrations that you still having?
Derek: Yeah. Actually I have, now I have the (inaudible) planner all the time with me at work and it actually it’s in my backpack, my brief case all the time and I also make much more use of my black berry because it (inaudible) business outlook at the office. So I get my e-mails and you know, my calendar, all that is there. And before, I actually had that I used them for e-mail really. You know, it’s like so now I actually use it for the calendar and outlook. Cause I need all that now. I ever used to it, need any of that. It’s like (inaudible) my appointments and all that. No I can’t. So, again if you ask me what the date is, I have to look.
Beth: Yeah. Well (laugh) yeah (inaudible)
Derek: (inaudible) say its like, yes, this is the frustrating part. I told you (inaudible) now so like, wow. Cause you didn’t know me before. It almost sounds like you know a fairy tales like, but no it’s true. It’s like. I was so good with dates, times, appointments, all that. It’s like before the stroke, me and time management were just natural. It was like, to me that used to be. I used to watch people and go and why do you need to do that. You know, I would take notes for like, I mean it will take like five minutes. It’s like to me I was like I never had to do that now I have to. But now I understand it’s like, what if I actually just made trap all the times, its like welcome to the human race. (laugh)
Derek: (inaudible) thing. Like before you’re like a (inaudible). You can do a lot of stuff and that’s kind of amazing. The people you know, always thought you were so amazing that you were able to do that, but now, you’re normal. They say, huh okay. (inaudible) normal is good considering you had a stroke (inaudible).
Beth: All right you said that you know, you have, in your own office at work which helps some with being able to concentrate, being able to work (inaudible) distractions, is there anything else that they had do for you at work to help you be able to do your job?
Derek: Oh ell, yeah. Of course my boss when I first (inaudible) come (inaudible) back, the shepherd (inaudible) center actually has therapist that actually come back to work with me at first. So that first 3 or 4 months I was at the office, everyday that I came into the office cause at first I was doing like only like a 4 or 5 hours a day, once or twice a week which is just part of my rehab and then when I came back to work as part time, which is I’m on now, is Monday, Wednesday and Friday and the doctor, the therapist. I had two therapist where actually come to the office once a week on a Monday to work with me at the office to see my environment and the (inaudible) things I was working on and would give me tips and tricks or teach me different ways to doing the things that I used to be able to do and they worked with my boss to actually form a new job for me at the office. And the company I worked for (inaudible) has been so amazing
Derek: That they actually, they actually work with me and my boss to create a new position for me at the company. So I don’t have old job but I have my old jobs in the sense of I still work in the same company but my job now is completely different.
Beth: Then that’s pretty amazing that they did that. Really
Derek: Yes. I feel loyalty for the place where you work.
Beth: Well. We’re pretty much out of time but do they(inaudible) to give you an opportunity to, you know, if there is anyone in the audience who is dealing with the similar kind of situation, do you have any words of wisdom or any messages that you like to pass on to them?
Beth: (laugh) super putting you in the spot right? (laugh)
Derek: (laugh) Yeah well you know one thing that helps me a lot especially of you listen to this, you actually listen to podcast. So, you’re actually a computer person. One of the main things that helped me a lot when I first got back from the hospital and in our home is I played a lot of computer games (inaudible) and they kinda sharpen that up, the parts of my brain that were kinda being lazy when I came out of the coma. A lot of free computer games for doing that and word puzzles a day, all that stuff helps a lot. It sharpens you up a lot.
Beth: Wow. What a great idea.
Derek: and one other bazaar twist of this is one of the things that helped a lot was my speech therapy was the fact that we did a podcast. All my therapist got to hear what I sound like because a lot of people that came thorough speech therapy from massive brain injury like I did, they don’t really sound most like I used to. Their spouses or their friends always say, well things are a lot different now but they their thought like, people met them, they would know but that’s not their old voice. My therapist has to use my recording for my show (overlap).
Beth: from before the accident.
Derek: Yeah that’s what it sounds like so they actually re-use those recording of me so I get my voice back which is actually very, very cool and it’s like, you know, (inaudible) doctors like you know, talk to anybody you known to records themselves just battling so if ever happen, they should have that. It’s like, it should be like you know, donating blood (laugh) my speech therapist said that’s one of the best things ever. We had hours of you. Like, we don’t usually get that. It’s like (inaudible) was their radio star or the movie stars, somebody was do, you already get that at all. Nobody ever gets that opportunity as a speech therapist to actually listen to what the person supposed to sound like.
Beth: Okay. So everybody go out and start you own podcast now. (laugh)
Derek: (laugh) Yeah (inaudible) the recorder and just say you know, (inaudible) story or something. (laugh)
Beth: Now, there is one more story that I wanted you to tell before we sign off and when we first met over the computer and I introduced myself and I mentioned my podcast, you said that you had already heard about it. Can you tell us the story about how you heard about disability 411?
Derek: Ahmm, well okay. because of my doctors, most of them know about podcasting before I have a stroke and Robin, she actually decorated my ICU room with posters and cards and all that she made every know exactly about our show all we did and had, she burned CDs like of our shows and let them made a stock of them in my room so nurses and doctors do was we grabbed them, listen to our show and the doctors start to listen to podcasting and then one of the people or the, my full time therapy at Shepherd just sort of learn about podcasting and what happens search for shows and they found yours and they asked me one time, its like, do you ever heard about his show. I said no. You know and they started tell me about it and of course, I kinda forgot out that until they said the name of show. It’s like to some reason in the back of my head, it’s like I heard about that before. And then I looked and said you know what, my therapist actually, when they learned about podcasting through our show because of my stroke, they found it because they are rehab persons. So of course, you’re show actually (inaudible) about that so, it’s kinda funny
Beth: Yeah. I just think its kinda cool that in the rehab people found my show and told you that. I just think it’s very cool (laugh)
Derek: (laugh) well you know, it sound like, you know, it’s too surprising when I thought about it more though. It’s like it’s of course I didn’t, most of the people at the hospital at that time back in 2005 about ancient history in podcasting terms that was the beginning. You know, so a lot of people didn’t even know what podcasting was. They kinda learn about it from me being in ICU in their hospital. So when they learn about it, then they got hooked on it then they (inaudible) look for things they kinda match with they were (overlap)
Beth: yeah but they are just (inaudible) what they are doing. Well thank you for spreading news about podcasting so they could find my show.
Derek: Yeah sure.
Beth: If you are all out there still listening then thanks guys. (laugh)
Beth: I really do need to wrap up Derek. Thank you so much
Derek: (overlap) Yeah no problem.
Beth: for talking with me today and you all, remember to go check out skepticality at skepticality.com and we will have a link to that in or show notes. Remember our web site is disability411.jinkle.com and you’ll find all the information there. Derek thanks again.
Derek: Oh no problem at all.
All right. Well I hope that interview gave you a little bit of insight to the experiences of someone who you know, had their brain injury as an adult and what it’s like trying to adjust to that. You know what I found particularly striking was, you know, that when he couldn’t walk and he couldn’t talk that was real obvious to people that why he was struggling. But you know, now that he seems so much more, you know, normal, and so much recovered that you know maybe people aren’t is aware of the struggles that he is still having and that was just really something, you know, to keep in mind when I’m working with people with brain injuries is that you know, they’re maybe going more, they’re maybe more going on that is you know (inaudible) apparent. So any way, I hope you enjoyed it and don’t forget, you can checked out the transcript of this show as well as all of the recordings and transcripts for all of our past shows at disability411.jinkle.com and you can e-mail me at firstname.lastname@example.org. And I just want to send out a special hello to anyone who is listening for the first time to the podcast because maybe I met you at the conference and told you about it. So, you know, welcome to the show. That’s all for now, I’ll see you all in two weeks. This is Beth Case with the disability411 podcast.
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