Inspiring+ People - Chloe Cohen
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0:00 - 0:02[Hangout Junkie] Welcome to "Inspiring People"
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0:02 - 0:07Today, we have Chloe Cohen, who is going to tell us an inspiring story
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0:07 - 0:13of her struggle and how she has been dealing with Multiple Sclerosis for many years, now.
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0:14 - 0:16Chloe, you are on.
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0:16 - 0:19[Chloe Cohen] Hi, everybody. My name is Chloe
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0:19 - 0:25and I've been living with Multiple Sclerosis for about 14 years, now.
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0:25 - 0:33I was 20 years old when I was diagnosed and for me it was very quick - it was not -
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0:33 - 0:39Most people generally have symptoms and then slowly, more shit starts happening,
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0:39 - 0:41and then they are diagnosed.
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0:41 - 0:50But for me, I hit my head real hard, and that head trauma caused symptoms pretty much instantly. Errh..
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0:51 - 0:52[HJ] Oh, it's not genetic?
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0:53 - 0:59[Cohen] They don't know. They still don't know if it's genetic, environmental or anything.
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0:59 - 1:01So they're still trying to figure out that out.
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1:01 - 1:14But - Yeah, nobody in my family has it, but like, one of the girls that I know with MS, her sister has it,
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1:14 - 1:17and then, this other girl, her father has it.
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1:17 - 1:27So I don't know. I don't know if it's genetic or not. I don't think they know, but I will say this:
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1:27 - 1:34when I was diagnosed 14 years ago, there were 3 drugs available to slow down the progression of the disease.
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1:34 - 1:38Now, I think I should start by explaining what MS is.
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1:38 - 1:44And that is a neurological disease that affects the central nervous system,
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1:46 - 1:53with a wide, wide, wide range of symptoms, from numbness and tingling
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1:53 - 2:01to blindness in an eye, to the loss o use of limbs, to chronic pain.
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2:02 - 2:07And every single person with the illness is different, and how it affects them.
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2:07 - 2:11And there is no two people who deal with it in exactly the same way.
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2:12 - 2:21But before these drugs came out, there was no way to slow the progression of the illness.
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2:21 - 2:27So that's why there is such an older generation of people with MS in wheelchairs,
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2:27 - 2:33because they didn't have the benefits of these drugs that slow the progression,
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2:33 - 2:42because it is constantly flowing, you never know what's going to happen today, you know,
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2:42 - 2:46I've been now in remission for four years, and it's like a new life,
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2:46 - 2:53because for 9 years of my life, it was this up and down thing of what's going to happen tomorrow,
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2:53 - 3:00what - is this symptom not going to be here tomorrow, or what's going to happen tomorrow?
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3:00 - 3:04So I very much learned how to [coughs] - excuse me - live win the moment.
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3:04 - 3:07not worry about the future as much.
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3:07 - 3:13But it's only because I went through all that, that brought me to this point.
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3:13 - 3:22But I'm definitely a lucky one. I was very disabled initially.
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3:22 - 3:29When I hit my head, it basically just jarred everything loose that was loose .
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3:29 - 3:36I probably had, you know, when I look back at my childhood before I even had MS,
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3:36 - 3:41I can recall things that happened during that, you know, that were like,
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3:41 - 3:45my feet would go numb in the shower in high school.
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3:45 - 3:49But I didn't even consider it, because they'd come back to life, you know.
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3:49 - 3:55Only until I was diagnosed with MS did I go "Huh, maybe that was connected", you know,
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3:55 - 4:00But, you know, I don't know - I don't know.
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4:00 - 4:09In my - in my theory, I've probably had this since I was born and it probably came up all through my life.
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4:09 - 4:15But I didn't get that diagnosis untill I initially hit my head
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4:15 - 4:22and had this like fast bang: I can't use my left side, it was all - I had that constant tremor,
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4:24 - 4:28I had vertigo, so it was like being wasted drunk all the time,
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4:28 - 4:33but you're not drunk, so you didn't get the benefit of the drunkenness [laughs],
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4:33 - 4:36you just got the bad stuff.
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4:37 - 4:40[HJ] Did you suffer from ithereally bad, symptoms?
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4:42 - 4:49[Cohen] Luckily, it was only about, maybe, 6 months to a year, where it was really bad.
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4:49 - 4:54I was lucky because, you know, as soon as they discovered that it was MS,
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4:54 - 5:01and I got put on medication and really the only thing that they have, it was steroids and steroids
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5:02 - 5:06will calm the inflammation or whatever that's happening.
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5:07 - 5:15So, getting on am oral dose of steroids relieved my tremor relatively
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5:15 - 5:22and I was on - about some other drugs, there is this drug called antivir,
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5:22 - 5:27And I don't even know what the heck it is, but it was something like working out, straightening you out.
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5:27 - 5:34So, I didn't have vertigo anymore. So, I give credits to the medical establishment
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5:34 - 5:40for having these drugs available, but it never was quite enough.
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5:40 - 5:46And I found marijuana to be one of the only things that relieved me from these constant annoyances.
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5:48 - 5:52It - at least, it brought me to a more accepting place, I guess you could say,
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5:52 - 6:00where it's like "OK, if I have to deal with this 24/7, then I can, you know,
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6:00 - 6:07as much physically as the marijuana was doing, the cannabis was doing,
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6:07 - 6:11of calming my tremors and taking away my disconfort.
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6:11 - 6:17It was also bringing psychological relief that "You know what? I can handle this and deal with this".
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6:17 - 6:22And this is my life, and I'll move - I'll not worry about the future so much.
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6:24 - 6:33But my story really is important because, you know, within 20 minutes, my life slipped .
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6:34 - 6:39I had hit my head and I couldn't use my left side, and I was a cellist.
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6:39 - 6:42This is what I was going to college for. I was going to study music,
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6:42 - 6:48I was going to be in, like a rock band, rock n' roll on the cello, you know?
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6:48 - 6:58That's what I thought. But then what's, you know. Yeah, I had to reramp my life.
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6:58 - 7:02My life and, you know, and I was very angry for a very long time,
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7:02 - 7:07because I think anyone who've got their passion worked from (?) that quickly (7:07)
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7:07 - 7:15Anybody who ha any kind of instant loss knows, appreciates every little thing a little bit more,
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7:15 - 7:19because you know what it's like to lose it.
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7:19 - 7:27And i think it took me a lot of, a lot of therapy and a lot of, like,
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7:27 - 7:33awesome conversations with people who get it, to be able to be at this point.
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7:33 - 7:38But I did start a support group here, eight years ago, for younger people with MS,
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7:38 - 7:44because all the support groups were full of old, bitter, angry people
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7:44 - 7:52because they never got the benefit of the medication until, maybe, you know,15 years into their MS game
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7:52 - 7:57and it has done - it has taken its toll already, so there is always so much -
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7:59 - 8:02there is no repair of what 's been taken away.
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8:02 - 8:07You know, they don't, they haven't - they're working on it, how to, you know,
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8:07 - 8:10- figuring out ways to repair that myeline that's torn.
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8:10 - 8:17Because when you have myeline - I left this major point out - you've lesions on your brain.
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8:17 - 8:24So those lesions then form symptoms in whatever region of the brain they^re covering.
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8:25 - 8:35Yet - but the disease is the demyelinization of your nerves,
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8:35 - 8:39and that's what causes them to be set on i(?) mproperly, and things.
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8:39 - 8:43So when you have a mass of nerves, no myeline now on your nerves (? - 8:43)
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8:43 - 8:47and the messages get screwed up.
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8:48 - 8:54But what I have learned after not walking, to be where I am at now,
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8:54 - 9:00there is no way I could have done that without the concepts of neuroplasticity.
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9:00 - 9:07And I think that's so important, like, our brains are so powerful and we are capable of anything,
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9:07 - 9:13anything if you put your mind to it, and what I have proved to myself as well as,
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9:14 - 9:19I guess, if the medical establishment would have studied me [laughs]
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9:19 - 9:22But there is no study of me, you know,
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9:22 - 9:25though what I have done is really carve new pathways in my brain.
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9:25 - 9:28So now I'm using my left hand and it's never going to be the same,
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9:28 - 9:37I'm never going to be able to play the cello like I did but at the same time, I can use it now.
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9:37 - 9:42I mean, in all these 9 years, I didn't use it, and it's only through this, like, persistence I have,
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9:42 - 9:50of exercising, pushing myself. And I think it helps bcause I was an athlete before I got MS.
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9:50 - 9:55So I had this like, competitive "I'm hard-ass" kind of thing in me (laughs).
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9:55 - 10:01Because I played soccer for many years, and we were really good, you know, our team was good,
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10:01 - 10:13and so I have that - that hard-ass attitude of just like keep pushing, keep pushing.
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10:13 - 10:18and the hard part with MS is, like, your energy is greatly depleted.
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10:18 - 10:24And I know for me, an a lot of people, when they are first diagnosed with the illness,
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10:24 - 10:28they can't do this stuff the same way they did it before,
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10:28 - 10:35they have to figure out how to adapt to this new world of not being able to do things yourself.
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10:35 - 10:41And when you are as stubborn and hard-ass that I was, there was no way,
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10:41 - 10:44and how I was going to have to ask someone to change my light bulb,
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10:44 - 10:49but it was at a point where I had that, so the light bulb would not get changed
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10:49 - 10:51if I didn't ask someone to do it for me.
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10:51 - 10:57And what I also had to realize is that generally, people like helping other people.
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10:57 - 11:01It gives them a sense of, self-sense of worth, you know?
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11:01 - 11:08And where I looked at it like, it's a downfall for me that I can't do myself, do it myself,
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11:08 - 11:14what they're getting from it is like, "We like helping people, I like it, it makes me feel better about myself".
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11:15 - 11:19And I know, you know, when I can help people with stuff that they don't know anything about,
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11:19 - 11:26whether being DJing music technology, or MS for that matter, you know,
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11:26 - 11:30it feels good to know that, like, I have something to give these people
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11:30 - 11:37and so, like, for many years, I beat myself up being like, "Well, I can't do it myself, grrrr"
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11:37 - 11:44But that attitude really got in the way of my growth, you know, I think you really have to learn that.
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11:47 - 11:55I don't even know, I think I am lucky that I was able to adapt successfully.
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11:55 - 12:00You know, I've reached a point now that the MS isn't ............. life
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12:00 - 12:04which it was, for many, many years, ten years.
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12:04 - 12:10And it was like that was every, everything I did, it was about MS.
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12:10 - 12:15It was about having - First of all, graduating college: I mean I had to -
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12:15 - 12:18I couldn't be the music major, because I couldn't even play anymore.
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12:18 - 12:22So I changed into - speech communications major
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12:22 - 12:29because I wanted to learn how to affect people effectively (laughs) with my words,
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12:29 - 12:33and let them hear me, and not sign off.
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12:33 - 12:38So, I thought it was important to learn the art of communication
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12:38 - 12:43and how to communicate effectively, to affect people.
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12:43 - 12:47And I think I did that really well, and I know I'm doing it really well,
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12:47 - 12:53because my story is special and unique in the sense that it happened so quickly.
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12:53 - 13:03But if you - if there's a will, there's a way. I mean, the fact that I couldn't walk and I went skiing
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13:03 - 13:07and now I'm riding an elliptical machine. what the hell!
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13:07 - 13:12Excuse me, but like, it's .............. it's just mind-blowing to me (13:12)
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13:12 - 13:17Everyday, it's a mind-blowing experience like, brushing my teeth in the morning.
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13:17 - 13:20I could never do that with two hands, and now I can.
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13:20 - 13:25And so every morning, when I brush my teeth, I'm like, "Hell yeah, I'm doing this",
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13:25 - 13:29and that' just a little thing, but it's like, I appreciate that stuff.
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13:29 - 13:32Tie my shoes? Couldn't tie them for a good nine years.
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13:32 - 13:40So now, I tie my shoes and I'm proud to tie my shoes, you know, it's appreciating those little things.
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13:40 - 13:44And I wouldn't have had that perspective, I wouldn't have known this,
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13:44 - 13:49I wouldn't be inline (?) this much (13:45) without the losses that I've had.
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13:49 - 13:52And I really say, I thing Ram Dass said it,
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13:52 - 13:58that, you know, through his strokes, this brought him closer to enlightenment.
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13:58 - 14:01Because now he had a new perspective, you know,
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14:01 - 14:05now he saw what it was like, you know, on the other side, or whatever.
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14:05 - 14:12And I think it's been my duty to kind of let people look through a different lens for a minute
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14:12 - 14:16and see, you know, look at themselves.
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14:18 - 14:25In that regard, I mean, most people don't ever think about things like that happening, you know.
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14:25 - 14:30But the fact is, they do and it could happen to any of us at any moment.
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14:30 - 14:37Yet we are so concerned about the future, or so stuck on the past, that we're not living in the moment.
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14:37 - 14:44And like, right now, I'm appreciating this moment, to be able to speak freely
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14:44 - 14:49and let people know they've just got to appreciate what they have a little more.
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14:49 - 14:54Because, people, you really don't know what you have until you lose it.
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14:54 - 14:58And I think it's so important for people to appreciate what they have.
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14:58 - 15:03And you're never going to - hopefully, you'll never have to go through that,
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15:03 - 15:07of learning what it's like to lose all that stuff,
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15:07 - 15:13because it's not easy, and it was only through some intense EMDR therapy
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15:13 - 15:19which is eye-movement therapy, that I got peace with the fact that I can't play the cello
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15:19 - 15:23like, you know, a symphony cellist anymore, you know?
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15:24 - 15:32But it - that is some intense stuff., for anybody ........... trauma (15:29), it's mainly for trauma.
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15:32 - 15:38But I always thought that I didn't go through war, I didn't have some horrorific incident happen to me.
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15:38 - 15:43But at the same time, I went there because I was in a car accident,
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15:43 - 15:48and the car accident was because of this darned tremor (laughs)
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15:48 - 15:54and I thought for a brief second I could use my other hand to grab something,
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15:54 - 15:59but in that brief second, my arm jerked and whoof, there went the car and we slipped in.
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15:59 - 16:03I lost my two dogs in the car accident. It was very traumatic.
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16:03 - 16:08But, so I was going to go, and I was like; "I'm never driving again."
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16:08 - 16:12After that happened, I was like: "No: screw the car."
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16:12 - 16:18So I went into this therapy, thinking I was going to work on my driving.
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16:18 - 16:22But what I realized was how connected it was to having MS,
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16:22 - 16:27and the trauma that I went through with my diagnosis.
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16:27 - 16:32Because, you know, I was only 20 years old, my brain was not yet developped.
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16:32 - 16:40So it is pretty impactful when all you know is no longer, you know?
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16:40 - 16:46But I'm also very thankful because I had an amazing family to help me through it all, you know,
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16:46 - 16:51that's a key piece. But this also why I started my group.
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16:51 - 16:56Because I don't think that anybody needs to deal with that stuff alone.
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16:56 - 17:02And fortunately now, there is, what, seven drugs available,
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17:02 - 17:09First there's these three that were available before, and those three were only injectables.
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17:09 - 17:15There is no - I think now, only in the last ouple of years, I don't even now,
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17:15 - 17:17I'm kind of happy to live (?) with the medication
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17:17 - 17:22because my medication has worked for me the whole time and I^m really lucky.
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17:22 - 17:27But I know that there's like one or two oral medications out now,
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17:27 - 17:34all the rest are injectables, and that's a big deal (laughs).
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17:34 - 17:40That's probably one of the harder things, it was having to know I'd have to get poked in my butt
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17:40 - 17:47every four days or whatever, and you know, for a lot of these, a lot of people,
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17:47 - 17:52it's so interesting how everybody is so different with these injections.
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17:52 - 17:57I have one friend that is like, adamant, like "I'm never letting people do this to me.
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17:57 - 18:00This is I have to live this for myself, it's my medication".
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18:00 - 18:04And then there is someone like me that's like, I can't even look at the needle,
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18:04 - 18:07so I need someone else to do this for me.
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18:07 - 18:15And, you know, 14 years later, I still have someone else do it for me because I -
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18:15 - 18:19any way to make it easier for yourself?
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18:20 - 18:28If I mean I have to do injections in my butt, into muscular leg, I'm talking big needles,
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18:28 - 18:31I don't want to see the needle, I don't even want to know.
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18:32 - 18:36But even to this day, I don't do it myself, I have a nurse do it.
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18:36 - 18:40I'm really good at it at this point, I mean, so much practice,
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18:40 - 18:47and I think I have enough needles now that we are about equal on the coverage.
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18:47 - 18:49[HJ] Wow!
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18:49 - 18:58[Cohen] But I think, you know, you know, I'm going to promote myself and I'm a DJ.
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18:58 - 19:06And I do - I did transform that classical skill of music into my turntablism.
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19:06 - 19:10It's vastly different. It's a different sound.
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19:10 - 19:17And it was a huge loss to me, to not be able to create my own sound, and even turn, you know,
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19:17 - 19:21being on turntables, it's someone else's music that I'm playing.
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19:21 - 19:28But what I've learned is that nobody else can make it sound the way I'm making it sound.
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19:28 - 19:36Because it's the art of the mixer, and it's really about hearing, and the harmony.
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19:36 - 19:44This tattoo right here represents harmony because - and I have one on the back of my neck,
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19:44 - 19:52that was initially made out of two base clefs in a - infinity symbol, right?
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19:52 - 19:58But the tatto artist was not a musician and he put the dots on the wrong side,
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19:58 - 20:03and I was like, Oh, can we just like... So he just made it in the infinity symbol.
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20:03 - 20:08But it still has the same meaning to me, and that is that the music is never lost in me,
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20:08 - 20:11no matter if I can play that or not.
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20:11 - 20:15I will forever hear it, I will forever feel it.
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20:15 - 20:20And that's what I put into my turntablism, you know?
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20:20 - 20:25I'm not a big scratcher. Oh, I must admit, the other day, I was fucking around
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20:25 - 20:31and I scratched some of this Saudi Arabian music, and made it House: it's pretty hot.
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20:31 - 20:35Well, you know, that was just like, I don't know if I can do that again,
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20:35 - 20:45it was kind of in the moment, but I am able to let out my creativity through the turntables now,
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20:45 - 20:48and it took me a long time to get to this point,
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20:48 - 20:54but now I know that the sounds I'm creating whether - and it's all other people's music,
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20:54 - 20:59but the way I'm manipulating their music, it's an art within itself.
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20:59 - 21:08And I think that there's plenty of DJs these days that just use a stupid program
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21:08 - 21:12that does it all for them, and they just click in stuff,
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21:13 - 21:20but they've lost the art form of what it really is, and i think if you go back to, like
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21:21 - 21:29the original people who were DJs, they were - they were musicians
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21:29 - 21:31and they were creating their own sound,
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21:31 - 21:36and unfortunately, technology has kind of moved faster,
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21:36 - 21:41and so all these kids are trying to be DJs, and it's kind of funny to me,
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21:41 - 21:43because they don't even know how to match a beat.
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21:43 - 21:51But you know, to each their own, and I do not judge (laughs) Bullshit, I totally judge.
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21:51 - 21:57I am - I would be the first to say that. It's like if you don't know how to match a beat,
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21:57 - 22:02why are you even trying? But, you know, that's a whole nutter (other?) show.
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22:02 - 22:04[They laugh]
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22:04 - 22:12[Cohen] But I think that the message I want to leave with, I guess you could say,
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22:12 - 22:18would be, you know, "Stay positive." That's the only way I got through all this stuff with -
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22:18 - 22:21by staying positive, then I kept pushing, you know, it was like:
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22:24 - 22:28"Bring it on!" - now I made a poin, might (?) bring it on, you know?
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22:28 - 22:32What else are you going to do with me? You know, I don't really -
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22:32 - 22:36you know, I can beat it, whatever it is, you know, and yes, I may have this illness
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22:36 - 22:41for the rest of my life, but I'm not going to let it run me, and I'm not going to let it control me,
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22:41 - 22:48but you know, at the same time, I say that, and there's definitely a lot of restrictions it puts on you.
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22:48 - 22:54I mean, when you've chronic fatigue and you're sleeping 18 hours a day, you can-
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22:54 - 23:00it's going to be hard not only to be able to hold on a job, more or less like "relationships",
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23:00 - 23:07that's whole other ball of game. So it's like, you really have to learn how to adapt.
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23:07 - 23:11And a lot of it is adapting to other people.
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23:11 - 23:17Because, especially like now, even now, like, I don't look like I've an illness
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23:17 - 23:20or anything wrong wrong with me at all.
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23:20 - 23:26And then, I have a drink, and I look like I'm wasted.
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23:26 - 23:33And I've been coralled (?) out of bars, even, a few months ago I got caught off at a bar,
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23:33 - 23:38because the bartender saw me stumbling, and I was like: "But I have MS!"
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23:38 - 23:43And it's like, I don't have it tattoed - I wear a bracelet now that says "I've MS",
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23:43 - 23:49because I carried a card that I have MS, but this is much more like, bang!
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23:49 - 23:52you don't have to, like, struggle, getting it out of your wallet or whatever.
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23:52 - 23:58But, you know, it's all the invisible symptoms that nobody sees,
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23:58 - 24:07and that's what I will make visible is that with this illness, you can't see the pain they're in,
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24:07 - 24:14the struggles they're in, feeling like they have a tight belt around their waist, you know, 24/7,
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24:14 - 24:20or whatever - you know, for me it was shaky arms, so you know, I - there was always tricks,
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24:20 - 24:23there were times that I just sat on my arm.
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24:23 - 24:27Because whenever I'd bring it out, it was like flopping in the wind.
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24:27 - 24:30So it's - you learn tricks (laughs).
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24:30 - 24:38But I think that a lot of people - it's - it's really hard for a lot of people,
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24:38 - 24:43because they don't want to accept it, you know, and what is it?
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24:43 - 24:46The 5 stages - were you a psych major?
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24:46 - 24:48[HJ] Yeah.
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24:48 - 24:56[Cohen] OK: spit them out: denial, anger, I don't know. What are those? All those stages you go through.
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24:56 - 25:06You go through that stuff with MS. It's like, OK, because like that first year, I drank so much boo-
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25:06 - 25:12so many beers because it was so much easier to say: "No, I'm just drunk", instead of
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25:12 - 25:16"I've got this illness that's making me all uncoordinated".
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25:16 - 25:25Alcohol was awesome for making me deny the fact that this stuff was going on - to a degree, to a degree.
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25:25 - 25:30And then I was really angry because I was on a college campus,
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25:30 - 25:33and everybody was so young and stupid and hadn't -
-
25:33 - 25:36.................... angry.
-
25:36 - 25:38I was like, "Everybody is stupid" [laughs].
-
25:38 - 25:42But then, after i got over the anger, I, you know, became accepting of it
-
25:42 - 25:48and I knew that the anger wasn't getting me anywhere, any of these -
-
25:48 - 25:57or the sadness for that matter, you know, or any of these emotions, wasn't taking me to a place of peace with it..
-
25:57 - 26:07And I really think that because of that EMDR therapy, I became at peace with it all,
-
26:07 - 26:11and it still sucks. I'm never going to say it doesn't suck,
-
26:11 - 26:16but you know, fortunately for me, the only thing that I have to deal with is injections.
-
26:16 - 26:23You know, I don't have - my tremor is calm enough now, all my symptoms are pretty regulated,
-
26:23 - 26:28I - So it's like a new lease on life, I feel. And so -
-
26:28 - 26:30[HJ] .... of MS?
-
26:30 - 26:31[Cohen] What?
-
26:31 - 26:33[HJ] Are there different types of MS?
-
26:33 - 26:38[Cohen] Yes. Thank you for asking. There are, and that's what a lot of people don't know.
-
26:38 - 26:44And the majority of people with MS have relapsing or remitting MS,
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26:44 - 26:48which is one that comes and goes as it pleases.
-
26:48 - 26:57But these drugs prevent the quicker going downs and kind of trick the brain into the -
-
26:57 - 27:00thinking the stuff's there that isn't.
-
27:00 - 27:09But then there is the progressive and secondary progressive, which are the really debilitating kind -
-
27:09 - 27:14ah no (?), the kinds with the people in the wheelchairs, and the people that (then ?) get bedridden.
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27:15 - 27:18And unfortunately, there is no medication for them.
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27:18 - 27:21So for - this is my biggest concern now,
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27:21 - 27:27because they've got all of us relapsing or remitting people pretty much under control,
-
27:27 - 27:32but it's these people that just keep getting worse and worse and worse
-
27:32 - 27:39and, you know, that's the hardest part of MS to watch or even talk about.
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27:39 - 27:47Because, like, when I started this support group 8 years ago,
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27:47 - 27:51there was a few people in there with progressive MS,
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27:51 - 27:55and you know, they started coming to the meetings and they were OK,
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27:55 - 28:00they might have had a little tremor, but we all had tremors at that point.
-
28:00 - 28:04So it was like, "Yeah, I -". But we could relate to each other,
-
28:04 - 28:12and one of these guys I got very close with, and he had progressive. Oh, he still has progressive.
-
28:12 - 28:15I should not speak of him in that way.
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28:15 - 28:28But just the quick downfall of his system, and how it just fell apart, you know, like,
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28:30 - 28:32so he comes to this meeting, and maybe he's got the old tremor,
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28:32 - 28:38the next month he comes and he's got optic neuritis in one eye, one eye is just looking out that way,
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28:38 - 28:44you know, and then it's like, bad talk (?) is another symptom.
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28:44 - 28:50Then the next month later, he's not even walking, you know, he's using canes.
-
28:50 - 28:53And then the month after that, he's in a wheelchair.
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28:53 - 28:59And now this guy is totally bedridden, to where his mom has to feed him and bathe him,
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28:59 - 29:04and his independence has been taken, and it's really hard.
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29:04 - 29:11Because then unlike - well how did I get so lucky? Why am I so lucky that I could get better?
-
29:11 - 29:19If I could just have given him half of my recovery or whatever, we'd both be in better places.
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29:19 - 29:27But it's not how it works. But for me, that's my biggest motivation, you know,
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29:27 - 29:34for all of these people with MS who really can't do it anymore, like I'm going to keep pushing harder,
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29:34 - 29:39and I'm going to ride that elliptical machine, because I can, damn it.
-
29:39 - 29:47And you know, for me, that was such a huge thing, because that elliptical machine and I were enemies.
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29:47 - 29:55We - my left and right body did not work together, that whole piece of my brain was kind of messed up,
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29:55 - 30:06so an elliptical machine was the utter, the best example of the left and right brain working together
-
30:06 - 30:10at the same - you know, that total coordination right there. And -
-
30:10 - 30:14[HJ] Do you want to talk about what induced you to use the elliptical?
-
30:14 - 30:15[Cohen] What?
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30:15 - 30:17[HJ] Do you want to talk about who pushed you to do the elliptical?
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30:17 - 30:21[Cohen] Oh, my trainer! God bless my trainer!
-
30:21 - 30:25Because I met him 5 years ago,
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30:25 - 30:26[HJ] Ah!
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30:26 - 30:35[Cohen] and I wasn't using my left arm. I could walk but I had very little coordination and balance.
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30:35 - 30:41So I always thought I was kind of drunk, which is fun, in public.
-
30:41 - 30:49But he understood right away that this was a neurological disease and that it wasn't about my muscles,
-
30:49 - 30:54because the trainer I had before him was like a total jerk, and he was:
-
30:54 - 30:59"I'm going to whip you into shape" and like - he definitely put some muscle on me
-
30:59 - 31:03but there was no - no pathways being carved [laughs].
-
31:03 - 31:10So when I got this .... - this trainer, he got it and he was just challenging me
-
31:10 - 31:20with motions I hadn't been doing for 9 years, with, like, using my arm and bringing it out ,
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31:20 - 31:26and acting as if I'm lifting my dog and putting him on a shelf over here,
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31:26 - 31:34which was a motion I didn't do, but - but from doing this, repetitively, for years,
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31:34 - 31:40it's like now, I'm throwing medicine balls with my left hand, you know?
-
31:40 - 31:46And it's only because he's kind of a - he's an awesome trainer, because he's like -
-
31:46 - 31:53he's fun: we have fun, that's the best piece of it, you know, he makes games out of everything,
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31:53 - 31:59and I being the athlete that I was, I wanted to be like, "No, I can do it ."
-
31:59 - 32:02he's like, "You're done, you're done!" I'm like "No! I got to do it one more time,
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32:02 - 32:05just to prove to myself I can do it".
-
32:05 - 32:13But - so we got this elliptical machine and I just looked at it for months,
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32:13 - 32:18like it's over there, and that's there for other people.
-
32:18 - 32:23And then finally, one day, he's like "YOu won't even try and ride this?"
-
32:23 - 32:27I was like: "Errh, I don't know, you think I can?" I mean, he has been -
-
32:28 - 32:36he got me to this point (?) and I got on, and I was riding it, and it was the weirdest feeling in the world,
-
32:36 - 32:41because both my left and right were working simultaneously together,
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32:41 - 32:48which never happened for not in - you know - 14 years [laughs].
-
32:48 - 32:57So yeah, it was pretty darned amazing. I was just like: "Holy -" I was freaking out.
-
32:57 - 33:02I'm surprised that I didn't start bawling in front of him. But I can - it was also awesome for him
-
33:02 - 33:08because he was like, "I'm doing my job and I'm good at it!" you know,
-
33:08 - 33:14And I have to give him credit because, you know, if I had been working out by myself all this time,
-
33:14 - 33:17I wouldn't have seen any of these improvements.
-
33:17 - 33:22But because I have this guy on my side that's like pushing me and challenging me,
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33:22 - 33:25and keeping me motivated,
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33:25 - 33:30that's the biggest thing, like, I've got no motivation to go to the gym, I hate the gym,
-
33:30 - 33:37you know, I don't mind going to look at the sexy men, but there's a lot more unattractive men then sexy
-
33:37 - 33:40men [they giggle], so screw that!
-
33:40 - 33:47But you know, it's really about me and my personal gain (? game?).
-
33:47 - 33:52I just feel very lucky and blessed, and I think everybody needs to kind of take -
-
33:52 - 33:58take a moment and appreciate all the things they have, until you lose it.
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33:58 - 34:05I wish I would have known, you know. If I would have known that was going to happen to me,
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34:05 - 34:11I probably would have been playing my cello every day, multiple times a day, and doing all this stuff.
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34:11 - 34:17But I was just a stupid kid and I didn't realize that anything like that could ever happen.
-
34:18 - 34:19[HJ] Nobody knows, nobody.
-
34:19 - 34:28[Cohen] No, they don't, but they'd - but I - I think that I'm trying to -
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34:28 - 34:34I'm trying to kind of change the face of MS a bit. I'm trying to show the positive side.
-
34:34 - 34:43Not all these people in wheelchairs and all negative, because that really is the older generation of MS,
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34:43 - 34:49and it's not like that anymore. I mean, the support group that's still running,
-
34:49 - 34:54I mean there's new people coming in every months, and they are all at different levels
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34:54 - 34:57in dealing with their illness.
-
34:57 - 35:04Some of them - there was one girl a few months ago, who hadn't even been diagnosed yet,
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35:04 - 35:09but she knew it, because her father had MS and she - she knew.
-
35:10 - 35:16And, you know, watching her go through that whole process of getting the diagnosis, having to adapt,
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35:16 - 35:21taking the injections, and being there, knowing that,
-
35:21 - 35:27just being able to connect with other people about it, helps so greatly,
-
35:27 - 35:34like even that - the guy with progressive MS, I think one of our most binding moments
-
35:34 - 35:38was just standing in his kitchen and he fell, and he's like:
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35:38 - 35:42"Damn! Don't you hate it when the earth moves out from underneath you!"
-
35:42 - 35:47And I go "Oh my God! I love this guy!", like I'd experienced that too.
-
35:47 - 35:53But it's very rare that you're going to meet someone who has experienced that without being drunk,
-
35:53 - 35:55you know what I'm saying?
-
35:55 - 36:02And it's very - I know that guy and I are forever in each other's hearts,
-
36:02 - 36:07because I think we were both like the first people who had the same illness you could relate,
-
36:07 - 36:12and he was like a track star and all this before the MS affected him,
-
36:12 - 36:21So he also lost his passions but we also learned to adapt and you know,
-
36:21 - 36:25whether I was going to be this "rock star cellist)" or not,
-
36:25 - 36:29it's like, life has lead me in this direction and I can only do -
-
36:29 - 36:36go forward and spread the positive stuff, and that's what I'm trying to do,
-
36:36 - 36:41and I'm trying to affect people and let them know, "No, you're not alone.
-
36:41 - 36:46and there isn't a cure for this illness. So it would be nice if there was, you know.
-
36:46 - 36:49So help us get there and help - help"
-
36:51 - 36:58It's interesting because I think more and more, now, if I say I've MS, somebody will say;
-
36:58 - 37:04"Oh, my sister has MS - my aunt has MS". Somebody knows somebody with MS.
-
37:04 - 37:12And I'm glad that's the case, because people, you know, 14 years ago, they didn't even know what it was.
-
37:12 - 37:19And it's nice to know that people actually are getting diagnosed faster,
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37:19 - 37:31which is helpful because they can get on drugs faster and avoid giant relapses, I guess.
-
37:31 - 37:33... I dont'know (?)
-
37:33 - 37:38[HJ] Did you have to change your diet at all?
-
37:38 - 37:43[Cohen] No [laughs] That was the one thing I was adamant about not doing.
-
37:43 - 37:47I'm like, "You can take away my cello, my bike, my snowboard,
-
37:47 - 37:51you can take away all those things, but I'm still eating cheese".
-
37:51 - 37:59Like, as long as I was healthy, and I eat well, but I never eliminated anything in my diet
-
37:59 - 38:05because, you know, when I was first diagnosed, there were many theories, like she'd just - you know -
-
38:05 - 38:12would go to a vegan diet, she would never have any issues, it would help.
-
38:12 - 38:20Or if she took all the mercury out of her fillings, because they thought that could be related,
-
38:20 - 38:22and so it was like, all these theorisms.
-
38:22 - 38:31After I think being bombarded so young with all these theories of ways to prevent stuff from happening,
-
38:31 - 38:38I was like: "No", you know, like "Whatever I'm doing," like, "it's fine." like,
-
38:38 - 38:45"I can't control this illness so I'm not going to change my diet if it's not really in the way."
-
38:45 - 38:49Like, I never adapted my eating any different things -
-
38:49 - 38:54and although at the same time, you know, a lot of people who - in the MS community -
-
38:54 - 38:58who have, and they said it's made a huge difference.
-
38:58 - 39:02But so, alright, I think everybody is different in that regard.
-
39:02 - 39:09I'm not a person to change their eating habits, just because I like to eat
-
39:09 - 39:17and I know I don't eat really poorly, so that's good. I'm pretty healthy.
-
39:17 - 39:31But I really think that exercise has been the biggest help in my treatment, in my "healing" if you will,
-
39:31 - 39:38you know? I think that's the only way I could get to this point. So...
-
39:38 - 39:43[HJ] How did your family understand the difficulties that you are looking at in the future?
-
39:43 - 39:51[Cohen] Wow! The worst was being - my mom was a therapist for many years
-
39:51 - 39:56and she had had a client who had MS, who was a ballerina,
-
39:56 - 40:07and then all of a sudden couldn't do ballet anymore, and so - so my mother really knew more than anybody
-
40:07 - 40:10(laughs) about the illness and ..... (?)
-
40:10 - 40:22and at this point I think that - I'm trying to think - I think that her client probably had progressive MS
-
40:22 - 40:32and I did not, so that was good, but so my mother knew the horrors of what this could mean
-
40:32 - 40:41and so, for her, it was way worse than for anyone else, because she knew all the bad stuff
-
40:41 - 40:46and she was like "Right, my daughter now has to deal with all this."
-
40:46 - 40:57But I think in that - in those initial couple of years I got so close with them,
-
40:57 - 41:04because they were the only support system I really had, you know, I was sleeping 18 hours a day,
-
41:04 - 41:10I was only up sporadically, and like, my friends were all turning 21 and hitting the bars,
-
41:10 - 41:15and it's like "I can't do that anymore." So I became very close to my parents.
-
41:15 - 41:19And I'm very lucky that I got this opportunity to do it.
-
41:19 - 41:24And that they were cool enough to listen to me bitch as much as I did,
-
41:24 - 41:30because I needed that. I think everybody who gets dealt a hand of cards like that,
-
41:30 - 41:34you know, you got to be able to bitch, and that's mainly why I started the support group.
-
41:34 - 41:38My people need a place to feel safe to bitch.
-
41:38 - 41:47Because, you know, my poor parents got to hear every little crappy thing that I felt about everything,
-
41:47 - 41:52you know, and everything turned negative, and it's all a big spiral of that.
-
41:52 - 41:54When one thing goes wrong, everything [makes sounds suggesting things disintegrating].
-
41:54 - 42:00And this goes on and on. But luckily, they were kindly enough to just let me bitch.
-
42:00 - 42:05And my mom would smack some sense into me occasionally, like:
-
42:05 - 42:08"Chloe!", you know", like), but at the same time she's a brilliant mom (?).
-
42:08 - 42:15Because, like, this Christmas when I went skiing, with my paralyzed friend,
-
42:15 - 42:22he was like "Hem, I'm getting you on skis." I was like: "What?" He's like: "I can do it, you can do it."
-
42:22 - 42:27I'm like: "Shit! He can't even use his right side, I can do this."
-
42:27 - 42:31So he got me on skis and it was very powerful.
-
42:31 - 42:44But my mother was like, you know: "Well, Chloe?" I was freaking out because I'd just heard bad news
-
42:44 - 42:49about my one friend from the group who had progressive MS, and now he is bedridden and all this
-
42:49 - 42:56and it was really overwhelming for me. And my mother was so awesome, because she was like:
-
42:56 - 43:03"Chloe, you know, you're going to go skiing today. You can go skiing today.
-
43:03 - 43:08So I want you to go skiing and do this for people like him. Because he can't. "
-
43:08 - 43:13And it just pushed me even further and I got out there, and I skied.
-
43:13 - 43:19And I must admit, there was a moment when I was looking up, like "Holy shit, look what the hell I'm doing."
-
43:19 - 43:25Well, I'm like: "God bless you, Mike", you know, "and all of you progressive people", you know,
-
43:25 - 43:33"I'm doing this for you, as much as myself. But, you know, because I can do it, I mean, that's so cool."
-
43:33 - 43:41[laughs] And I just - you don't know what you got until you lose it,
-
43:41 - 43:46and be appreciative of what you got and live in the moments.
-
43:46 - 43:54Those are my two parting [laughs] phrases. Appreciate what you got. And live in the moment.
-
43:54 - 43:58And I think if you go into life with that kind of attitude, you'll be OK.
-
43:58 - 44:06But you also have to know shit is always going to happen, you can't control shit from happening.
-
44:06 - 44:12But you deal with it in the moment. You don't worry about it, you deal with it in the moment.
-
44:12 - 44:16So yeah. [laughs]
-
44:16 - 44:20[HJ] That's awesome that you've made such amazing accomplishments.
-
44:20 - 44:22Thank you.
-
44:22 - 44:31[Cohen] I feel fortunate to be able to have the - the skill, I guess you could say,
-
44:31 - 44:40of communicating about this in an effective way, without judgment.
-
44:40 - 44:48And I know that I've my part in the MS - no: I'll forever do my part in the MS community,
-
44:48 - 45:00of bringing awareness and bringing hope, because I think a lot of people forget that anything's possible,
-
45:00 - 45:13and I am proof of that, and I think, the more you can realize what you have, the better it will be?
-
45:13 - 45:16I don't know. I'm just babbling now [laughs]
-
45:16 - 45:22[HJ] No! I want to share your DJ page.
-
45:22 - 45:24[Cohen] Yeah.
-
45:24 - 45:31[HJ] you can check URL on - .... you can check DJ CC and it'll come up.
-
45:31 - 45:32[Cohen] Ding!
-
45:32 - 45:44[HJ] Ah, that's here. This is Chloe's DJ page. If you go ....... (?) it's like DJ CC and it will come up.
-
45:44 - 45:50And I also - here, your "Face of MS" page.
-
45:50 - 45:54[Cohen] Yes. Thank you.
-
45:57 - 46:02[HJ] Are you starting a support group on Google+ as well?
-
46:02 - 46:08[Cohen] Yes, I have a disability support, which - its range is not just MS.
-
46:08 - 46:16it's deafness, mental issues, ....... (?) and disabilities in general.
-
46:16 - 46:22for all the ones who want to feel, you know, like they have support
-
46:22 - 46:25dealing with some kind of difference,
-
46:27 - 46:37Yeah. but it's really general, for any kind of support, but it is for, mostly, disability
-
46:37 - 46:44and that would be any kind of disability. So...
-
46:44 - 46:54(HJ) Awesome. You can Google Face of MS or DJ CC Boom. And now, she...
-
46:54 - 47:00[Cohen] That's my sign, my deaf sign. Because I've got really deaf friend, he's like:
-
47:00 - 47:08"I got - I got a sign for you, because everybody has got the CC Boom". That's my name sign.
-
47:08 - 47:16[HJ] You're such an amazing DJ, you caught her (?) music. And even though it's not your own music,
-
47:16 - 47:20the way you manipulate those sounds is just awesome.
-
47:20 - 47:22[Cohen] THat's awesome. That's what I like to hear.
-
47:22 - 47:23[HJ laughs]
-
47:23 - 47:29[Cohen] Thank you, Candice. I really want to thank you for doing that's what you're doing.
-
47:29 - 47:34Not just for me, but I like hearing other people's stories too, you know,
-
47:34 - 47:39And I think that's important, because this - this social networking thing, this Google+ thing,
-
47:39 - 47:45is going to be ginormous, and I think that you're starting off with a bang by doing this.
-
47:45 - 47:49You're - yeah - keep it up, keep up the good work.
-
47:49 - 47:53[HJ] Yes, it makes me even appreciate what I have, because you know,
-
47:53 - 47:57people get so caught up in what they don't have, you know -
-
47:57 - 47:57[Cohen] Right.
-
47:57 - 48:01[HJ] They listen (?) to the media and they just want to keep buying
-
48:01 - 48:07and they want you to, you know, just wish you had these things that you don't,
-
48:07 - 48:13and you know, talking with you ad other people, just make me know that I do have a lot
-
48:13 - 48:20and I have to be grateful for what I have - what I don't - and it's really inspiring listening to you
-
48:20 - 48:21and your story
-
48:21 - 48:21[Cohen] Awesome]
-
48:21 - 48:27[HJ] ...overcame that, how you just appreciate everything now.
-
48:27 - 48:30And I think it happens for a reaon.
-
48:30 - 48:36There's a reason for what you have, there's a reason for, what everyone's .....(?) in life.
-
48:36 - 48:38And it just makes you that much stronger.
-
48:38 - 48:45[Cohen] Definitely. No, I wouldn't be who I was if I hadn't gone through all that, you know,
-
48:45 - 48:51I wouldn't be nearly this cool if I hadn't faced that much loss.
-
48:51 - 48:57But it's true, because I got a perspective that most people don't get in their early 20's, you know.
-
48:57 - 49:04Because I felt like I was 80 at 20, and I sort of kept - keep getting younger as I get older:
-
49:04 - 49:11it's kind of cool ]laughs]. But, you know, I could bond with my grandmother
-
49:11 - 49:17and try and get her to use a cane, and have actual evidence of why she should do it
-
49:17 - 49:26and be like - and you know, that's one of the perks to an MS is that you really educate people
-
49:26 - 49:29and make them appreciate what they have.
-
49:29 - 49:38And I think that's what I hope to do and I try to do it as often as I can.
-
49:38 - 49:43So (signs) power to the people! [laughs]
-
49:43 - 49:47[HJ] I hope it gives everything in your story (?) 49:46) everyone's turn and -
-
49:47 - 49:49[Cohen] Awesome. That's what I hope to do.
-
49:49 - 49:56[HJ] Yes, you're truly inspiring and, you know, you have a good support system.
-
49:56 - 49:58I think that's so important for everyone.
-
49:58 - 49:58[Cohen] Yes.
-
49:58 - 50:04[HJ]........................ (?) that's really something major,
-
50:04 - 50:07you must have a, you know, a support system.
-
50:07 - 50:14It's so importan, I meant. It doesn't have to be family: friends, you have your personal trainer
-
50:14 - 50:21who is - I think he's awesome, how he got you on that elliptical: that alone is just amazing.
-
50:21 - 50:31[Cohen] Yeah. He's awesome. He's like my brother but he's not. He is my, you know, trainer
-
50:31 - 50:37but he know- you know, he's a child of the 90's too, so he's always playing, like,
-
50:37 - 50:42old school 90's music, like ............ hahh
-
50:42 - 50:46[laughs] It's pretty cool, so we can bond over that kind of stuff.
-
50:49 - 50:53[HJ] I want to thank you again for sharing your story and -
-
50:53 -[Cohen] My pleasure, Candice, thank you for getting my story out there.
-
Not Synced[HJ] I hope to be broadcasting this tomorrow. If anyone wants to listen, they can check it out
-
Not Syncedand I hope people check your Face of MS page and your DJ page, and see you, you know,
-
Not Syncedthe way you play those sounds, it's amazing. You have to listen to it to appreciate it. [laughs]
-
Not Synced[Cohen] That's awesome. Thank you, Candice.
-
Not Synced[HJ] Thank you, thank you again, we all appreciate-
-
Not Synced[Cohen] My pleasure.
- Title:
- Inspiring+ People - Chloe Cohen
- Description:
-
Each week, we will be interviewing people who are truly inspiring. They come from all over the world, and have overcome obstacles that make life that much harder. Their stories are inspirational, and allow us to be grateful for what we have in life.
"Many people have come to see disease as a gift in their lives. Often, they learn that they are more than their disease, and once freed by that certainty they go on to live the rest of the story."
This week, we interviewed Chloe Cohen. A truly inspiring woman who has been dealing with Multiple Sclerosis for many years. Chloe's inner strength and determination to help her deal with MS allows us to realize that their is hope for everyone. I feel honored to be able to share Chloe's story with everyone, and I hope it gives you as much enjoyment as it has given to me. Women like Chloe are hard to come by. Too many of us give up before we even try, especially, when suffering from a disease such as MS. Chloe's openness and willingness to share her story with all of us is amazing.
- Video Language:
- English
- Team:
- Music Captioning
- Project:
- On and Around Music
- Duration:
- 51:29
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen | ||
Claude Almansi edited English subtitles for Inspiring+ People - Chloe Cohen |