batman
Been around the epilepsy block a few times
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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: 2nd 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.
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.
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: 2nd 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.
