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Post by darthoso on Jun 19, 2018 20:09:33 GMT -5
This dude is pretty controversial within MD SMA circles.
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Post by Deleted on Jun 19, 2018 23:03:47 GMT -5
I thought it was pretty good and they seem sincere and funny
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Post by Mets on Jun 19, 2018 23:07:35 GMT -5
Why is he controversial? And Mets, what parts did you think that were portrayed questionably? Most of the controversy from the SMA community is because when his blog and internet presence first gained popularity, he was really talking about SMA as a fatal/terminal disease. He mentioned how he wasn’t supposed to live into adulthood based on his initial diagnosis and then often referred to himself as if he thought he’d be dying soon. While lifespan is obviously affected with SMA, and there’s a large chance of major accidents/sicknesses, with proper care most type 2’s are living well into adulthood and treatment is always improving, so many feel he intentionally misrepresented the disease to gain attention. I don’t think that was the case at all though. The questionable part of the video I thought was that it made him seem less active/driven/smart than he is. For us who are knowledgeable about SMA, we realize it’s just a silly video for fun (which is great), but I think a lot of viewers could misinterpret his role in making the videos (he does way more of it than his gf) and his role in their relationship. People who know nothing about SMA might think he’s not really contributing anything because in the video she’s literally doing everything for him. It’s a very small detail, but I think showing him doing a bit more himself would clear that up for people. Also I’m kinda biased as I’ve met him and we texted for awhile before his book came out. I was actually supposed to work with him too but the gig fell through because of one of my college friends who was involved with it.
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Post by Corey on Jun 20, 2018 0:09:44 GMT -5
The videos are cool and I think that they have a lot of promise, but I've read some of his work and his sense of humor just wasn't my thing
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Post by karotix5 on Jun 20, 2018 6:44:30 GMT -5
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Post by Julia on Jun 20, 2018 8:30:07 GMT -5
Why is he controversial? And Mets, what parts did you think that were portrayed questionably? Most of the controversy from the SMA community is because when his blog and internet presence first gained popularity, he was really talking about SMA as a fatal/terminal disease. He mentioned how he wasn’t supposed to live into adulthood based on his initial diagnosis and then often referred to himself as if he thought he’d be dying soon. While lifespan is obviously affected with SMA, and there’s a large chance of major accidents/sicknesses, with proper care most type 2’s are living well into adulthood and treatment is always improving, so many feel he intentionally misrepresented the disease to gain attention. I don’t think that was the case at all though. The questionable part of the video I thought was that it made him seem less active/driven/smart than he is. For us who are knowledgeable about SMA, we realize it’s just a silly video for fun (which is great), but I think a lot of viewers could misinterpret his role in making the videos (he does way more of it than his gf) and his role in their relationship. People who know nothing about SMA might think he’s not really contributing anything because in the video she’s literally doing everything for him. It’s a very small detail, but I think showing him doing a bit more himself would clear that up for people. Also I’m kinda biased as I’ve met him and we texted for awhile before his book came out. I was actually supposed to work with him too but the gig fell through because of one of my college friends who was involved with it. The first time I found him on YouTube he was in a video titled something like “I’m dying” or something. Really confused the hell out of me since there wasn’t any specific reason besides the fact he has SMA and I knew Mets wasn’t. So if I didn’t know anyone with SMA after watching the video I’d assume the disease was super fatal like the video portrayed Edit: Found the clip and it’s actually from a series titled “My Last Days”
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Post by laur on Jun 20, 2018 8:35:24 GMT -5
From what I'm reading, it sounds like the dude's definitely questionable in some of the things he does/has done.
That being said, based on the video alone, I actually really liked it and will probably watch future episodes. I feel like it's so rare that you just see a PWD/AB couple portrayed as normal and funny people in the media without all the inspirational BS. I like both of their senses of humor a lot and thought they seemed to have good chemistry.
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Post by Hopper on Jun 20, 2018 9:36:32 GMT -5
They seem a sweet couple and I like the fact that there was no real 'agenda' to the video as such (inspiration porn for instance) because they were just themselves.
I haven't seen all of it yet, but I am finding myself a little amused by Shane's girlfriends quizzical/confused looks at times, as if Shane's said something he shouldn't have done.
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Post by Mets on Jun 20, 2018 10:43:18 GMT -5
Edit: Found the clip and it’s actually from a series titled “My Last Days” Oh, yeah that is a little odd. I can see that being controversial within the sma community. I have a irl SMA 2 friend from college and he would say that he wasn’t expected to live past 2 yo, so I had always assumed that this is just what sma families were told by medical professionals. My friend is about 42, so maybe it wasn’t well known back when he was being diagnosed what the life expectancy was. This is totally accurate, my parents were told the same thing. It wasn't until the mid 2000s that the perception really changed
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Post by darthoso on Jun 20, 2018 13:17:20 GMT -5
Edit: Found the clip and it’s actually from a series titled “My Last Days” Oh, yeah that is a little odd. I can see that being controversial within the sma community. I have a irl SMA 2 friend from college and he would say that he wasn’t expected to live past 2 yo, so I had always assumed that this is just what sma families were told by medical professionals. My friend is about 42, so maybe it wasn’t well known back when he was being diagnosed what the life expectancy was. Dead before 2 was the meme told to the parents of every SMA baby. I met a girl in college who stopped me to tell me about her disabled brother. As soon as she said "he was supposed to be dead at 2" I asked if he had SMA, sure enough.
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Post by Green on Jun 20, 2018 14:14:13 GMT -5
I'm just glad he didn't call SMA a type of muscular dystrophy.
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Post by Corey on Jun 20, 2018 16:09:24 GMT -5
i/my parents never got the “dead by age 2” talk though I had one doctor insist I wasn’t disabled, just lazy.
It’s not unexpected to get an uninformed doctor. Most pediatricians will only ever see one SMA patient. Its rare and outside their area of expertise so if their diagnosis/prognosis isn’t on the mark I understand. There’s no excuse for a neurologist to make such a mistake though
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Post by darthoso on Jun 20, 2018 16:21:24 GMT -5
I'm just glad he didn't call SMA a type of muscular dystrophy. Mean MS?
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Post by malibu on Jun 20, 2018 16:46:47 GMT -5
I'm just glad he didn't call SMA a type of muscular dystrophy. why does it matter lol
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Post by Sir Paul on Jun 20, 2018 18:01:54 GMT -5
Honestly, based on the themes of his previous work - book, v-logs, etc. and his focus on the terminal nature of his diagnosis - I assumed that he was dead by now. It's awesome to see him thriving and doing good things for his fellow man. If I don't completely forget about him and his v-log after I submit this comment (which is likely) I'll probably watch episode 2!
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