Stick it; or not?

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We have a situation about a video on the ABC News website. Sometime, back in the month of November 2010, there was a picture on the MSN.com homepage about a video on abcnews.go.com. After watching the video, which I don't remember what it was about, I typed the word "epilepsy" in the search box. One of the search results led to a video titled, "Diagnosing Epilepsy", with a date of November 17, 2009. At first, I thought this was pretty amazing. Not just a less than 7 minutes long video concerning epilepsy, but a video being shown on national TV in November, which is the National Epilepsy Awareness month in the United States. The news anchor, Tonya Rivero, is talking on Good Morning America, with MDVIP Primary Care Physician, Dr. Jorge Rodriguez. By doing some more searching online, it appears this one physician is frequently interviewed on Good Morning America. The MD in MDVIP stands for Medical Doctor or Doctor of Medicine, and the VIP stands for Value In Prevention; not "very important person."

Everything being discussed in the video seemed to be going pretty good, up until about 5 minutes and 26 seconds into the video. Here’s a portion of what Dr. Rodriguez had to say, "Our basic instinct when someone has a seizure, is to try to protect them. So when someone is having a full on grand mal seizure, which is when they're shaking, first thing to do, old wives tale by the way, people are not going to swallow their tongues. But what you want to do is get a hard object, a spoon or something, in their mouth so that they don't bite their tongue."

Also in this video are two out-of-focus clips of an adult with a child. With the variety of videos online showing neurologists, a person should be able to recognize that the adult in these two out-of-focus clips are of the neurologist, Dr. Orrin Devinsky. By locating a contact phone number online, I had the opportunity of speaking with someone who said was Dr. Devinsky's secretary. She mentioned Dr. Devinsky and Dr. Rodriguez are both colleagues, and said that she would let someone else know about all this. I don't know how far this will go, but I'm sure it won't be far enough.

In a book titled 'Epilepsy Patient and Family Guide: 3rd addition', written by Orrin Devinsky, M.D., at the bottom of page 111, continuing onto page 112, Dr. Devinsky stated, "Do not put anything in the person's mouth. The tongue cannot be swallowed during a seizure. The muscles for chewing are very strong, so a finger can be bitten or an object can be bitten off and the person can choke on the fragment remaining in the mouth." Now I'm not 100% sure, but I have a strong feeling that most neurologists are going to tell everyone, not to put anything in a person's mouth when they are having a Tonic-Clonic Seizure (old name Grand Mal seizure).

With one primary care physician and one neurologist supposedly being colleagues, does it look like there is a "lack of communication" between these two individuals? With Dr. Rodriguez not being up-to-date on how to administer proper first aid to an individual who's having a tonic clonic seizure, wouldn't you have a strong feeling that there are other physicians who are also not up-to-date with how to administer proper first aid to an individual who’s having a tonic clonic seizure? Followed with wondering what else physicians are not up-to-date with concerning seizures and epilepsy?

Folks, what I'm seeing is that for those of us who are trying to cope with epilepsy head-on, we apparently need to come up with other strategies by ourselves, for ourselves, because participating in Walks for Epilepsy or other fundraisers for epilepsy, and speaking to government officials, does not appear to be working, for us!

Want proof? Okay.

With information being publicly displayed or discussed for the proper steps in order to administer CPR or to perform the Heimlich maneuver, then why isn't there also any information being publicly displayed or discussed in order to administer the proper steps to someone who's having a seizure?
During your next trip to the neurologist, look around to see if there is any information, such as pamphlets, handouts, leaflets, posters, or anything else, that pertains to seizures or epilepsy. If you are unable to locate any information, then ask someone who works there if they have any information concerning seizures or epilepsy, which can be given to you. If they do have information, then ask the person why the information is not on display out in the waiting area?
Once you are with a neurologist, talk to them about this "Diagnosing Epilepsy" video that was shown on ABC Good Morning America. What do we need to do in order to inform the national public about this incorrect information, and then explain to the national public how to administer proper first aid to someone who's having a tonic clonic seizure?

I don't know exactly what or how yet, but I do know that something needs to be done, and I'm not talking about just staying quiet and deleting that video off of the abcnews.go.com website.

At the moment, the "Diagnosing Epilepsy" video I'm talking about is at http://abcnews.go.com/video/playerIndex?id=9108867. And just as a heads up, the video will probably start with a short commercial ad.

What do you have to say about this matter? Post your feedback.

Comments

Re: Stick it; or not?

Submitted by Spike. on Thu, 2011-02-10 - 13:42

No Tadizo, I have not read "The Praise of Folly", by Desiderius Erasmus. Have you? Have you read any books pertaining to seizures or epilepsy? Have you ever had a subscription to or looked at any issues of the "Epilepsy Action - Epilepsy Today" or "Epilepsy Action - Epilepsy Professional" magazines from the United Kingdom? Or how about any magazine issues of "Neurology Now"? I've had subscriptions for several years to all of these magazines, and just received the February/March 2011 issue for "Neurology Now" today. Have you ever toured any annual American Epilepsy Society expositions? I toured the one that took place back in December 2010, where I spent a good amount of time visiting the Executive Director, Debra Josephs of The Anita Kaufman Foundation. I also had the opportunity to speak with several individuals, with one of the individuals being this websites new webmaster, at the Epilepsy Therapy Project booth. As for videos uploaded onto YouTube where the person who uploaded their video make comments such as, "Do not watch if you have epilepsy or are prone to seizures", have you ever post a reply to inform the individual that just a few people have their seizures triggered by what they see (flashing lights or colors), and it's better to provide viewers a simple message alert by saying in their first sentence something like, "Caution, this video may cause seizures"? I've been doing this for several months, and a good number of people reply with comments for not knowing this, and made changes by editing their message alerts to say, "Caution, this video may cause seizures."

You see, when I post my replies for people who are asking questions, I don't "beat around the bush". I try to focus my attention on answering questions directly and correctly, and if necessary, including resources in order to back up whatever it is that I'm saying. I'm not a doctor. I'm just one individual who has epilepsy, who volunteers my time as an epilepsy advocate or epilepsy support group leader, in order to communicate with people by sharing what I have learned and experienced concerning the medical side and social side of epilepsy. So if what I do, in your opinion, is like trying to be an individual in the center of the universe, and like someone who's practicing much like a Medicaid doctor, then so be it. As the old saying goes, "To each is own opinion."

Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)

No Tadizo, I have not read "The Praise of Folly", by Desiderius Erasmus. Have you? Have you read any books pertaining to seizures or epilepsy? Have you ever had a subscription to or looked at any issues of the "Epilepsy Action - Epilepsy Today" or "Epilepsy Action - Epilepsy Professional" magazines from the United Kingdom? Or how about any magazine issues of "Neurology Now"? I've had subscriptions for several years to all of these magazines, and just received the February/March 2011 issue for "Neurology Now" today. Have you ever toured any annual American Epilepsy Society expositions? I toured the one that took place back in December 2010, where I spent a good amount of time visiting the Executive Director, Debra Josephs of The Anita Kaufman Foundation. I also had the opportunity to speak with several individuals, with one of the individuals being this websites new webmaster, at the Epilepsy Therapy Project booth. As for videos uploaded onto YouTube where the person who uploaded their video make comments such as, "Do not watch if you have epilepsy or are prone to seizures", have you ever post a reply to inform the individual that just a few people have their seizures triggered by what they see (flashing lights or colors), and it's better to provide viewers a simple message alert by saying in their first sentence something like, "Caution, this video may cause seizures"? I've been doing this for several months, and a good number of people reply with comments for not knowing this, and made changes by editing their message alerts to say, "Caution, this video may cause seizures." You see, when I post my replies for people who are asking questions, I don't "beat around the bush". I try to focus my attention on answering questions directly and correctly, and if necessary, including resources in order to back up whatever it is that I'm saying. I'm not a doctor. I'm just one individual who has epilepsy, who volunteers my time as an epilepsy advocate or epilepsy support group leader, in order to communicate with people by sharing what I have learned and experienced concerning the medical side and social side of epilepsy. So if what I do, in your opinion, is like trying to be an individual in the center of the universe, and like someone who's practicing much like a Medicaid doctor, then so be it. As the old saying goes, "To each is own opinion." Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)

No Tadizo, I have not read "The Praise of Folly", by Desiderius Erasmus. Have you? Have you read any books pertaining to seizures or epilepsy? Have you ever had a subscription to or looked at any issues of the "Epilepsy Action - Epilepsy Today" or "Epilepsy Action - Epilepsy Professional" magazines from the United Kingdom? Or how about any magazine issues of "Neurology Now"? I've had subscriptions for several years to all of these magazines, and just received the February/March 2011 issue for "Neurology Now" today. Have you ever toured any annual American Epilepsy Society expositions? I toured the one that took place back in December 2010, where I spent a good amount of time visiting the Executive Director, Debra Josephs of The Anita Kaufman Foundation. I also had the opportunity to speak with several individuals, with one of the individuals being this websites new webmaster, at the Epilepsy Therapy Project booth. As for videos uploaded onto YouTube where the person who uploaded their video make comments such as, "Do not watch if you have epilepsy or are prone to seizures", have you ever post a reply to inform the individual that just a few people have their seizures triggered by what they see (flashing lights or colors), and it's better to provide viewers a simple message alert by saying in their first sentence something like, "Caution, this video may cause seizures"? I've been doing this for several months, and a good number of people reply with comments for not knowing this, and made changes by editing their message alerts to say, "Caution, this video may cause seizures."

You see, when I post my replies for people who are asking questions, I don't "beat around the bush". I try to focus my attention on answering questions directly and correctly, and if necessary, including resources in order to back up whatever it is that I'm saying. I'm not a doctor. I'm just one individual who has epilepsy, who volunteers my time as an epilepsy advocate or epilepsy support group leader, in order to communicate with people by sharing what I have learned and experienced concerning the medical side and social side of epilepsy. So if what I do, in your opinion, is like trying to be an individual in the center of the universe, and like someone who's practicing much like a Medicaid doctor, then so be it. As the old saying goes, "To each is own opinion."

Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)

Re: Stick it; or not?

Submitted by 3Hours2Live on Fri, 2011-02-11 - 04:11

Hi Spike, My first two sentences were general observations. The first one a corrupt transliteration/translation from Voltaire. The second one, an exploitation of the nihilism of the philosopher's disease of temporal lobe epilepsy, with a dash of existentialism. Much as: http://books.google.com/books?id=x2XWZ5Pm8rQC&pg=PA714&lpg=PA714&dq=existentialism+epilepsy&source=bl&ots=DIcn-_-obI&sig=Wp34ostPQw1HYWhbIvP5s0aZ5Mk&hl=en&ei=JMdUTc-ECoG6sAOqqpnJBQ&sa=X&oi=book_result&ct=result&resnum=5&sqi=2&ved=0CDIQ6AEwBA#v=onepage&q&f=false but still different enough to violate all the rules for that being held objective and valid, hence, a strong tendency to solipsism, as noted often in TLE intellectual phenomena. Erasmus is almost always held to be part of the Western Canon (it's those "damn" Ivory Towers). The support and advocacy of near total uninterest of the subject matter purportedly being supported and advocated, sounds of that from his most popular work. It makes Puck appear more like Apollo. I've already met frustration with the Great Peanut warning, as a peanut may prove fatal, so now most everything that might be suspect enough for closer inspection of ingredients, just notes "May contain Peanuts & Products", instead of any information of any actual value to base a rational decision. The actuaries of any health concern has ADA pivot points of one right against another right, and those issues are anything but simple. For instance, from brain damage, I use a GPS & cell-phones to walk, yet attempts are being made to outlaw their use by pedestrians in many situations, yet the ADA "protects" me from the burden of proof and arguments for exceptions because of mandatory accommodations. An example more rare would be seizures by anything in print, so even the warning would be a violation. Who determines any limits, and how? I already had federal court experiences making the word "reasonable" mean next to nothing in actual practice. About not, not "beating around the bush", a good contrary example already in print, is the definition of an "exit", in "Less Than Words Can Say" by Richard Mitchell, Chapter Twelve: http://www.sourcetext.com/grammarian/less-than-words-can-say/12.htm Then, everything involving epilepsy is more complex than the "simple" concept of an "exit". The logistics of Simplicissimus also failed here. I've often been told that I read too much, including too much about epilepsy. Tadzio

Re: Stick it; or not?

Submitted by Spike. on Thu, 2011-02-10 - 13:46

Just a quick note. While working on creating my most recent reply in this one topic thread, I noticed that I had the option to edit my original posting. So I made changes by changing my words of "2nd Edition", to "3rd Edition."

Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)

Just a quick note. While working on creating my most recent reply in this one topic thread, I noticed that I had the option to edit my original posting. So I made changes by changing my words of "2nd Edition", to "3rd Edition."

Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)

Stick it; or not?

Comments

Re: Stick it; or not?

Submitted by Spike. on Thu, 2011-02-10 - 13:42

Re: Stick it; or not?

Submitted by 3Hours2Live on Fri, 2011-02-11 - 04:11

Re: Stick it; or not?

Submitted by Spike. on Thu, 2011-02-10 - 13:46

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