shark6495 Posted August 20, 2014 Share Posted August 20, 2014 I know you don't hate it but a lot of people are writing about it. I would say as a medical professional it is working. I have had to talk to people, clients, and coworkers about ALS. Not everyone will read about it and will instead ask people in medical fields Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
DonHelbig Posted August 20, 2014 Share Posted August 20, 2014 ^^It is but it isn't..It's good, but it could be better.. Plus..alot of people are just dumping and wasting water and ice over their heads and doing nothing else (Including KI "don't forget to donate, or do the challenge"). That shocked me the most, KI is all "kick cancer" etc. etc..then I see no donation to ALSA, or any true form of awareness. Just stating ALS is the tip of the iceberg.. How do you know there was no donation? Do you have access to the master list? 20 Quote Link to comment Share on other sites More sharing options...
shark6495 Posted August 20, 2014 Share Posted August 20, 2014 It shouldnt be about knowing who donated..... Did CP, Canada's Wonderland, and Mr Red respond yet? Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 20, 2014 Share Posted August 20, 2014 ^^You can check your inbox, I responded. But if you want it both here & there, just because your employees donated their own money, that's not from the park. Again.."Don't foget to donate or do the challenge" Not "do the challenge and donate" Again..just stating ALS..not alot of awareness, I'll give you credit for the spiel of info at the end of the video, that's way more than most, I give you kudos there and it's great to see more than just ice dump, done. But did you really raise that much awareness? 1 Quote Link to comment Share on other sites More sharing options...
Guest dtk1376 Posted August 20, 2014 Share Posted August 20, 2014 So would you like a full in-depth description of the disease instead of doing the ice bucket challenge? Because I can tell you both exist, but guess which one is getting more attention. (Even if for a short time) 10 Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 20, 2014 Share Posted August 20, 2014 I would like actual awareness..as shown in my video..just saying three letters isn't awareness. Unfortunately dumping ice gets views, but combine the two if possible. Take the KI one for instance..provides the links and everything which is way more than 90% of the videos. However the perception I get from it was "donate or do the challenge." Then seeing them do the challenge..it leaves a bit to wonder..perception trumps intent Quote Link to comment Share on other sites More sharing options...
shark6495 Posted August 20, 2014 Share Posted August 20, 2014 The original challenge was dump the bucket in 24 hours or donate. SO its sort of always been that way. 2 Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 20, 2014 Share Posted August 20, 2014 Exactly..so bunch dump ice.that's it. Quote Link to comment Share on other sites More sharing options...
KIBeast Posted August 20, 2014 Share Posted August 20, 2014 I had to do a Google search of ALS because I wasn't sure what it was. I've always known it as Lou Gherig's disease. As far as I know, LG's disease is something I have heard about for years. Maybe why this is why it seems new to a lot of people. Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 20, 2014 Share Posted August 20, 2014 Yeah it's somewhat a slang medical term. Also not saying KI did anything wrong. They at least did the challenge and put something out there and a ticker at the end of the video. That was pretty sweet. But coming from someone in medicine. Our biggest job is education. Above everything else our main goal is to teach. These challenges don't teach. Education is true awareness, and that empowers more than just hearing an acronym. But that doesn't get views or as large a response unfortunately Quote Link to comment Share on other sites More sharing options...
Guest dtk1376 Posted August 20, 2014 Share Posted August 20, 2014 No awareness campaign really teaches, such as the pink ribbons don't teach, they encourage you to seek out information on the disease. Unfortunately most people aren't going to sit through an in-depth spiel about ALS even with the ice buckets. It's expected of a large company like Kings Island to put out good information, but just some random kid in his backyard with a bucket of ice water, good luck getting him to go through the whole spiel. 5 Quote Link to comment Share on other sites More sharing options...
shark6495 Posted August 20, 2014 Share Posted August 20, 2014 Our biggest job is education. You are right Dev. But if raising awareness leads to people asking us in the field about it, isnt that a good thing? Its much easier to give information to people asking what a disease is versus trying to teach people who dont want to know. 6 Quote Link to comment Share on other sites More sharing options...
malem Posted August 20, 2014 Share Posted August 20, 2014 Cedar Point accepted Kings Island's challenge in a rather unique location: 12 Quote Link to comment Share on other sites More sharing options...
Buckeye Brad Posted August 20, 2014 Share Posted August 20, 2014 I believe many folks are doing it this way: If you get nominated, you must do either: 1. Donate $10 AND dump the ice bucket Or 2. Donate $100 Of course many are doing both, and likely donating even more. My kids got a kick out of watching Robert Downey Jr. do it, then challenge Chris Hemsworth. I'm quite confident that they, along with the Holiday World and Kings Island teams, gave very generous donations. 5 Quote Link to comment Share on other sites More sharing options...
BoddaH1994 Posted August 20, 2014 Share Posted August 20, 2014 ^^You can check your inbox, I responded. But if you want it both here & there, just because your employees donated their own money, that's not from the park. Again.."Don't foget to donate or do the challenge" Not "do the challenge and donate" Again..just stating ALS..not alot of awareness, I'll give you credit for the spiel of info at the end of the video, that's way more than most, I give you kudos there and it's great to see more than just ice dump, done. But did you really raise that much awareness? What's wrong with employees donating their money, anyway? As someone who knows a person who lost their life to ALS, I can tell you that the disease is not completely understood and research is terribly under funded. He spent the last 5 years of his life not knowing exactly what the next stage of the "progress" of the condition was going to be. It was very scary and sad time.I challenge you to come up with a viral campaign that's half as effective or raises half of the money that this has. Then you can criticize. 14 Quote Link to comment Share on other sites More sharing options...
MantisMan Posted August 20, 2014 Share Posted August 20, 2014 How anybody could find wrong with this, is beyond me. Donations.....+X amount that has ever been raised. Awareness....heard more about ALS in the last few weeks then I have the last 40 years. Education......I don't need to know, that's why I donate to those that do. 10 Quote Link to comment Share on other sites More sharing options...
The Interpreter Posted August 21, 2014 Share Posted August 21, 2014 Former Tennessee Titan Tim Shaw Announces He Has ALS During Ice Bucket Challenge: http://mobile.reuters.com/article/idUSKBN0GK2DY20140820?irpc=932 6 Quote Link to comment Share on other sites More sharing options...
shark6495 Posted August 21, 2014 Share Posted August 21, 2014 Thats powerful stuff. Ill be honest, my family who never really donates to things was all nominated (my wife by her aunt, I by my brother in law, my sister by my wife) and we all made donations and completed the challenge. 4 Quote Link to comment Share on other sites More sharing options...
KI FANATIC 37 Posted August 21, 2014 Share Posted August 21, 2014 thedevariouseffect, I don't understand what the problem is with this. It's better than two months ago when ALSA was not getting nothing near this amount of money or awareness. It seems like you are complaining about it, but providing no other solution. I find it crazy that anyone could say anything but good things about the Ice Bucket Challenge. 4 Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 21, 2014 Share Posted August 21, 2014 Sigh..go watch the video..tired of explaining myself over..or read the Huffington Post article that I basically agree with Quote Link to comment Share on other sites More sharing options...
KI FANATIC 37 Posted August 21, 2014 Share Posted August 21, 2014 All I'm saying is that you sound quite pessimistic about something that does nothing but good. 8 Quote Link to comment Share on other sites More sharing options...
Guest dtk1376 Posted August 21, 2014 Share Posted August 21, 2014 I appreciate every bit of awareness given to ALS, my grandfather died from it and it wasn't a quick thing, just slowly fading away from reality. Even if the awareness is temporary (possibly?) it serves a good purpose. 7 Quote Link to comment Share on other sites More sharing options...
shark6495 Posted August 21, 2014 Share Posted August 21, 2014 Watch the whole video, NSFW language but it shows why we are raising money and awareness for this. 5 Quote Link to comment Share on other sites More sharing options...
The Interpreter Posted August 21, 2014 Share Posted August 21, 2014 If he had a point that was worth making on this issue, he'd not need to explain himself over and over. Sorry, Devan; on this you are coming across as a whiny pest. 15 Quote Link to comment Share on other sites More sharing options...
fanofFirehawk Posted August 21, 2014 Share Posted August 21, 2014 9 Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 21, 2014 Share Posted August 21, 2014 As someone who knows a person who lost their life to ALS, I can tell you that the disease is not completely understood and research is terribly under funded. He spent the last 5 years of his life not knowing exactly what the next stage of the "progress" of the condition was going to be. It was very scary and sad time.I challenge you to come up with a viral campaign that's half as effective or raises half of the money that this has. Then you can criticize. I understand fully, I had a kid with DMD which is quite similar to ALS other than which gene mutates & it's epidemiology. But anyways, kid crashed & coded..that sucked, so trust me, been there, done that, it's not fun. Kids shouldn't die, ever. But trust me..after pushing Sodium Bi and then getting on compressions to rotate a tech out, and then hearing the doc call it. It sucks to lift your hands up off a little guys chest, seen no breathing, no pulse, nothing. I wanted to keep going but he'd been gone for about 20 minutes at that point. So yeah, I hear ya, that probably hit me about as bad as my first trauma patient. This makes it close to me to an extent. thedevariouseffect, I don't understand what the problem is with this. It's better than two months ago when ALSA was not getting nothing near this amount of money or awareness. It seems like you are complaining about it, but providing no other solution. I find it crazy that anyone could say anything but good things about the Ice Bucket Challenge. I never said I didn't like it. It is all good, I just would like it to be better. I'm all for seeing MORE. Give more, spread more, learn more, realize more. In the video & whatnot, I even said, we're their voice, many ALS stricken individuals eventually lose the ability to speak, it sucks big time. The more we know and work together the better we are at recognizing signs/symptoms and learning from it and eventually I'd hope it's eradication. If he had a point that was worth making on this issue, he'd not need to explain himself over and over. Sorry, Devan; on this you are coming across as a whiny pest. I can see why, but this is a strong and personal subject. After having the kid above that I explained, one family member on my father's side, and being medical and seeing this every now & then. You want more for these people. I mean alot of us here in the hospital look at this and say, why are we doing this when we could go donate and really teach people what it is. I wish I could share it here but my doc made a great FB video about all of this, and Barney style education. I look at it as this. People know the signs & symptoms of strokes, heart attacks, etc. very well because of great awareness & education. The AHA pushed it so well in the past & currently that basically anyone can somewhat do possibly effective CPR, or recognize someone having a stroke. We could be at that level with neurodegenerative diseases. As someone medical, thats something we would love to see, educated patients. 1 Quote Link to comment Share on other sites More sharing options...
shark6495 Posted August 21, 2014 Share Posted August 21, 2014 On the flip side, there is not much that can be done to slow or stop (at this point) Degenerative diseases, such as ALS. (The following will contain medical mumbo jumbo. If you do not understand its cool, continue to be awesome. If you do understand, you too shall continue to be awesome.) When you talk about educating people. I am totally on board, but its such a tough disease to even diagnose early on (without past medical histories). You can talk about muscle weakness, twitching, slurred or heavy speech. But its similar to Stroke. The reason the AHA and Stroke Awareness groups talk so heavily about awareness is because awareness can save lives. If you catch a stroke quick enough, you can give them a clot buster and free the blockage unless its an aneurism, then that would make things worse. If you are having a heart attack, you can take a baby aspirin, and thin the blood to help save you before advanced medical treatment. Same with CPR or Heimlich maneuvers. Quick fast acting treatment can save people. MND are similar to AIDS, Alzheimers, etc where the effects take years to happen, and currently there is no quick fix or any fix. Knowing the symptoms means you know whats going to happen. Awareness can bring donations. Donations are whats going to lead rehab and science. This is not profitable for medical companies. So why would they research it? I worked with a patient in an in-rehab clinic. Him and I worked on strengthening or attempting to strengthen the muscles required for breathing and worked on improving his phonation. He worked for years in an automotive plant. His wife brought in pictures to show how big and strong he was. Its frightening, scarey, sad, upsetting, angering, maddening, etc. Any word you want to describe. But there is no quick or easy fix. Right now there isnt one. Giving a person an ALS diagnosis is giving them a life sentence. One day you have trouble buttoning one button. Then you may trip. Then you may not be able to get the key into the ignition. Then the next thing you know you cant get out of bed, feed yourself, or even speak. At this point, who cares if this is a fad where some people only do it for the "online" stardom. There are plenty others who are donating. I worked with ALS patients, and never once thought to donate to the ALSA. Not because Im a bad person but it never crossed my mind. I have seen CP patients, stoke patients, TBI, MND and each one is heart breaking. In each case, the person is in there but is locked. Locked physically from saying what they want, from doing what they want. This is directly to Devan (I like ya, never met ya, but you seem cool enough. Plus you have to teach me the proper line to run): What more can people do. The ones that are going to donate, mention the organization. But many dont know about ALS. They dont understand medical terminology. Maybe they know who Lou Gehrig is but they cant speak on behalf of ALS. The idea of the video was to raise money and get people talking about ALS. Getting people to talk, means they go to their doctors, their nurses, EMTs, SLPs, OTs, PTs, etc. They ask questions. I would venture to guess that there are a lot of doctors and other medical professionals answering the "What is ALS" questions. Isnt that the point? Yes dumping water is a meaningless gesture. But its also fun. It gets people to watch. You have WWE wrestlers talking about it. You have NFL players talking about it. People click to find out who did the next "funny" water dump. But at the same time, they keep hearing about ALS. Some people may mention how much it sucks, or a symptom. Each little bit gets just one more nugget of information to the viewer. That viewer then can ask for a doctors description the next time they are there. Here is a picture of a cat to lighten up the mood For those of you who skipped the above, here is some info that I was taught about diseases like ALS. Its like a waterfall. You cant stop a waterfall once it has fallen. You can stop it before it gets there. Usually by the time symptoms have shown up, the patient is in the free fall of the water fall. Research is being done to identify what leads to the waterfall but again at this point, nothing has been shown to be the "direct" link. So please give. Make funny videos. But give. 13 Quote Link to comment Share on other sites More sharing options...
Ride On_17 Posted August 21, 2014 Share Posted August 21, 2014 Today after rehearsal, our marching band did the ALS ice bucket challenge. It was a lot of fun, plus I felt good knowing we were supporting and spreading awareness about a good cause. Plus we nominated what we consider our "sister" band, in hopes of starting a chain of ice bucket challenges (and in result, a chain of awareness over ALS) throughout schools and marching bands. 7 Quote Link to comment Share on other sites More sharing options...
jcgoble3 Posted August 25, 2014 Share Posted August 25, 2014 http://www.vice.com/read/the-worst-part-of-the-ice-bucket-challenge-is-the-people-criticizing-it-822 Previously, I agreed with Devan on this. Now, I think I've changed my mind. Whether you support or criticize the Ice Bucket Challenge, give this article a read. It discusses the disease itself a little, including how it progresses, what it takes to diagnose it, and why there's so little research into it, as well as talking about the critics of the challenge and why they're wrong (and why those that dump ice water on themselves without donating aren't completely wrong). Make sure to read all the way to the last sentence, then re-read the article with that last sentence in mind. Then think about it for a bit. 4 Quote Link to comment Share on other sites More sharing options...
thedevariouseffect Posted August 25, 2014 Share Posted August 25, 2014 See I never disowned or hated the challenge, I just didn't like seeing folks do it and not donate, or just do it to do it without educating themselves. Articles like that are AWESOME. Now I agree with the guy, the whole African Meme kid and this & that to make it seem like, oh why do that, it is dumb. I simply said, hey it's great, but we can be better. I'm not one to say this isn't doing a good job, it's done alot of good in two weeks, which is sweet. However, me wanting more for these people, I expect more out of those being involved. See 50 Cent for instance. He goes off saying this is an "ASL/ELS" challenge. Obviously he doesn't even care what it was, and had another agenda to begin with, and doesn't plan on donating unless his agenda was met. That stuff irks me. It's there, it's known, but common, not even one read of a Wikipedia article? Do the challenge safely, but educate yourself, and make sure you donate. Don't do the bare minimum, be like this guy who has ALS, and go out, donate, do the challenge, and keep up with it like the ALS walk coming up all across the nation. That is awesome activism. Most do just the minimum, but dedicate yourself to it, and go above & beyond. That's literally my only concern. I don't get how I can be faulted or whatever for just wanting more for this group of people stricken with a terrible disease process. 2 Quote Link to comment Share on other sites More sharing options...
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