Questions for EVERYONE

[batman]

The two questions that I'd like to ask everyone on this entire epilepsy support group (CWE), and this does include the host and all of the moderators.

Please tell me whether or not, if you have ever attended a S.E.E. Program? The initials for S.E.E. stands for Seizures & Epilepsy Education.

and...

...for those of you who have attended at least one S.E.E. Program, what did you think about the program(s) that you attended?

[Bernard]

We tried to go once (see The S.E.E. program - seizure and epilepsy education), but it didn't work out. We did talk with Mr. Mittan on the phone a few times and he seems like a good guy.

[Birdbomb]

Not me. Las Vegas isn't a hub for epilepsy awareness. We have one tiny support group. And it difficult to even find a doctor. Our hospitals suck.

[Meetz1064]

been to one of the S.E.E. programs........Though I'd like to eventually go to one sometime soon......

[batman]

Hi Bernard, Donna, and Meetz. Thanks for replying and thanks Bernard for that link to the previous topic thread about the SEE Program. I noticed that previous topic thread was dated 3 years back in 2005. Bernard, you not only missed the one Dr. Mittan did in Houston, back in Nov. 2004, but also the one, which just so happened to be his new and improved 3 day presentation, that took place up in Dallas, in July last year (2007). And, the program coordinator, Shannon Robbins, at the Epilepsy Foundations affiliate located there in Houston, worked at getting both of those presentations to take place. Those prices are for his travel and lodging, the amount necessary for the facilities of where he does the presentations, printouts and handouts, and the costs for catering (lunch, snacks and drinks) per person, per day.

At all of the other epilepsy conferences and presentation I've attended, it appears to me that those who are doing the presentation (medical staff and or Cyberonics representative) spend most of their time blabbering about statistics. Statistics is one thing that I am getting rather fed up with, because for one, the statistical results would really pertain to only those who participated in the clinical trials. So unless you were a candidate who participated in the clinical trial, you have no idea where exactly you or someone else with epilepsy would fit in those statistical results. And two, do you think those statistical results are 100% accurate? Probably not. Statistical results could be about as accurate and useful as a weekly weather forecast. Out of all of the now estimated 50 million people with epilepsy worldwide, with the estimated more than 3 million people with epilepsy in the United States itself, along with the more than 3000 years that epilepsy has been known of, what do you suppose the chance is of at least two people having the same symptoms, diagnosis, and success in their treatments? And if there ever were two people who have multiple similarities pertaining to epilepsy, what are you supposed the chances would be for those two people having the same doctor?

Yes, I will agree that statistical results can be helpful, but only to a certain degree. For those of us who do have epilepsy, and I am one of them, I would like to inform you that… We are not rats; We are not duplicated copies of someone else; and, we are not statistics. I feel that each and every individual who has epilepsy should be treated and taken care of as if they were the only participant in a one person clinical trial. Sorry for getting off track here, but this is something I've wanted to share with people for quite some time. So please consider this as me doing a little bit of venting.

Doctors at other conferences talk more on problems, than on solutions. Dr. Mittan spends most of his time on solutions.

Currently, and as far as I know, there are no other confirmed SEE Programs scheduled to take place in the United States or in Canada, other than the one that has been confirmed to take place in Lubbock, Texas, on Saturday, August 23, this year 2008. And unfortunately, this one that is scheduled is only going to be a 1-day special presentation. If there ever comes a day of me winning millions of dollars in a state lottery, and if I were to still have at least $1 million left, I would purchase a full-size custom RV bus (like the one shown on the ABC show Extreme Makeover: Home Edition), with the SEE Program logo painted on all four sides, including the top of the RV, then donate the RV to Dr. Mittan so he can continue with presenting the program that he created himself throughout the United States and Canada.

[Birdbomb]

Statistics is one thing that I am getting rather fed up with, because for one, the statistical results would really pertain to only those who participated in the clinical trials. So unless you were a candidate who participated in the clinical trial, you have no idea where exactly you or someone else with epilepsy would fit in those statistical results. And two, do you think those statistical results are 100% accurate? Probably not. Statistical results could be about as accurate and useful as a weekly weather forecast. Out of all of the now estimated 50 million people with epilepsy worldwide, with the estimated more than 3 million people with epilepsy in the United States itself, along with the more than 3000 years that epilepsy has been known of, what do you suppose the chance is of at least two people having the same symptoms, diagnosis, and success in their treatments? And if there ever were two people who have multiple similarities pertaining to epilepsy, what are you supposed the chances would be for those two people having the same doctor?

Yes, I will agree that statistical results can be helpful, but only to a certain degree. For those of us who do have epilepsy, and I am one of them, I would like to inform you that… We are not rats; We are not duplicated copies of someone else; and, we are not statistics. I feel that each and every individual who has epilepsy should be treated and taken care of as if they were the only participant in a one person clinical trial. Sorry for getting off track here, but this is something I've wanted to share with people for quite some time. So please consider this as me doing a little bit of venting.

Not to get too far off topic but this nails it right on the head. Stats don't mean squat! MOST of us cannot compete with those who are chosen for testing trials. We have too many other medical or health issues that keep us out. So few tests are done with multiple issues because they cloud the results.

[Nancy]

And there are people like me who live far out in the woods - far from a city where there anything like this would be held.

[haird18]

All CWE,
I am involved in many local,state,and national advocacy organizations.
I am involved with national change on laws of ADA Laws. Each year I stay up to date with the newst updates sent to me from congres and mental health initiatives,epilepsy outreach programs and, The National Council for Independent Living and many other organizations. There so many programs that focus on research th at are very important.
David Hair

P.S. Be involved, and active and know we can make changes in numbers. So continue writing letters and stayinvolved with your state and local representatives.

[epileric]

She said that the S.E.E. program is more for people who have to deal with someone else in their life who has E. or for people who have been newly diagnosed.

I was e-mailed an itinerary. Hope this helps you.






32868 Ventura Avenue Abbotsford, BC V2S 6J3
Phone 604-853-7399 Fax 604-853-7336 Email epilepsy.support@telus.net

You are invited to attend:
The Seizures and Epilepsy Education (S.E.E.) Conference

Featuring Dr. Robert Mittan, Clinical Neuropsychologist, international epilepsy expert.

 The S.E.E. program has won five US national awards and an international award for excellence.
 The S.E.E. program is so comprehensive that it has been called encyclopedic.

Individuals with Epilepsy or Family Members $25.00 Family Rate $40.00
Professionals $40.00 Early Bird on or before February 15, 2007 after Feb. 15 $60.00

Dates in your community:

 Kelowna
Hollywood Rd Education Centre, Tuesday September 23, 2008
1040 Hollywood Rd

 Fort St. John
North Peach Cultural Center, Friday September 19, 2008
10015 100th Ave

Subsidies are available for those who require financial assistance to attend.

Understanding epilepsy is essential.

 Understand the effects of epilepsy on learning and behaviour.
 Learn about common mistakes in treating epilepsy and how to avoid them
 Recognize toxicity
 Manage medications the RIGHT way
 Get effective control without side effects
 Review eight new medications for seizures
 Explore what to do when medications don't work
 Learn to watch for side effects of anti-seizure medications
 Learn how to avoid "breakthrough seizures"
 Review what happens in the brain during seizures
 Understand different types of seizures
 View “No Longer the Last to Know,” a videotape about different seizures
 Learn about seizures and memory

Other treatments for epilepsy, first-aid for epilepsy, and prognosis
 Hear about surgery, vagus nerve stimulation, and Diastat
 Learn about the Ketogenic Diet, biofeedback, and other "cures"
 Hear about new research and amazing 21st century treatments, like brain stimulation
 Discover emerging genetic approaches to epilepsy treatment
 Learn about the prevention of seizure triggers