Hello, my name is Scott, and i am really tired of being angry!!

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Hi Scott...nice to meet you.

I am quite taken by your passion with the cause. If an idea comes to mind I will certainly share my thoughts with you.

Welcome
 
santaclaus said:
Brain knows she can say anything she wants to me. Besides, I did minor in Women Studies, and have no problem expressing that one of my major icons I look up to is Rosie the Riveter.
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:roflmao: @ Scott!
 
Sharaon!!

I am still trying to make a difference, and failing every step of the way!! LOL. I gotta tell you, I thought the easy part would have been to find a sponsor to play beach tennis, and the tough part would have been to educate the public. Boy, do I feel foolish. I hope all is well with you.
 
santaclaus said:
Sharaon!!

I am still trying to make a difference, and failing every step of the way!! LOL. I gotta tell you, I thought the easy part would have been to find a sponsor to play beach tennis, and the tough part would have been to educate the public. Boy, do I feel foolish. I hope all is well with you.
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You can - it just takes time and patience; just finding some
people who have Epilepsy and Caretakers who have Epilepsy
and getting them involved and build up from there ... it'll
all come, it will. It just takes time to build it. Nothing comes
overnight (although we all wish things would be like instant
coffee and microwaved popcorn - like a *snap* of finger,
but unfortunately, it just doesn't work that way).

You have the endurance, and it's your passion - and people
WILL catch on to it ... but as I said, it will take time, and it
will pay off, trust me, it will pay off. Nothing will be done in
vain if one keeps at it, keeps pressing on; as the old adage
goes: "Winners never quit, Quitters never win" - how much
further truth than that? Think about all the impact you've done
already? They've already given you a name, you've become a
Star, while you don't feel like it, but it will begin to build, but
I think it's an old Chinese Proverb that says "A man moves a
mountain by first moving small stones."

You're moving the small stones, don't try to move the mountain,
the mountain will soon be moved and the Epilepsy Awareness
will soon be explosive and you've then left your impact and mark,
so no, you're not a "failed advocate", you've actually found a new
way of going out to reach others in a new direction that no one's
ever taken before.

Think about that Scott - you've done a lot; Beach Tennis, and
if I played that, I would end up with a ball in my mouth. I hadn't
played tennis or racquetball in decades although I still have my
equipment, but I can't picture myself playing on sand. On cement
court or clay courts maybe, but sand? I think you would be laughing
too much and I would have won by default because of your laughter!
I'd be a pathetic shame! (And I doubt the hotel/motel/resort would
even PERMIT me to use the outdoor showers either, I might clog their
drains!)

:D :paperbag: :agree:
 
Isn't Aruba a little hot for Santa?

Santa,

You sure you're not going to have a heat stroke down there in Aruba in your custome?

I was the best in my high school gym class in tennis. I'm sure I'd mop up the court, or should I say sand, with everyone down there!
 
Hi Skunkchaser :) Welcome to the group.

I think you and I might have something other than an interest in epilepsy in common.
Here's a photo (I hope) of me and some "friends".
 

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An interesting update for those that know me

Well, this will be my fourth year dressing like Santa Claus, and I am trying to do something different again. The first two years, I was seen in New York, taking pictures with everybody and having lots of fun. Last year, I went to ARuba, and saw firsthand how much good this character can do. This year, I am proud to say that I will be involved with my first benefit!!

Actually, it is pretty cool how it happened. Two years ago, I was in Greenbay watching a football game, and I met a waitress. We exchanged email addresses, and this October I decided to get in touch with her. Sure enough, we became fast friends, and she set up this benefit where we plan on raising tens of thousands of dollars in a single night. It is December 7th, and I am really looking forward to it.

I have spoken with other real bearded Santas, and it is my hope to be doing things like these all year long. The amount of money this image alone could raise is amazing, and I am looking forward to it. I want everyone with epilepsy to know that I am in fact one of the best Santas around, and will do my best to improve the lives of many. LOL!! That seems so silly when I read it, but it is what I have been fighting hard for these last three years, and feel like I will be a great big help to everyone.

Happy HO HO HOLIdays,

Sand-A-Cause
 
Scott,
We need the determination of guys like you. I am glad Santa gave you an amazing gift.. ;)
Glad your here and I am sure you will find many new friends.
~ Ryn
 
Which part of Minnesota are you from?

Mom2many said:
Scott,
We need the determination of guys like you. I am glad Santa gave you an amazing gift.. ;)
Glad your here and I am sure you will find many new friends.
~ Ryn
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Thanks for the words. Actually, I am trying hard to go to the Sandstone Ice festival in Minnesota the weekend of December 14th. I know they are going to have ice climbing, and I heard possible even a dogsled. Have you ever heard of the festival?
 
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Sandstone Festival

Yes this is up north a bit from us. Pine City, MN along the Kettle River.
Beautiful area and full of lots of fun. This festival is the celebration of the coming of Winter. I hope your able to make it..... its lots of fun for those willing to bundle up and enjoy some fresh air... ;)
 
Sorry I am from the Twin Cities area, The festival is about an hour north of me.
 
Wow. What a great story...your thoughts and ideas and articles written. I just wanted to say good luck with your future endeavors and getting epilepsy on reality tv. I think that would be a great idea. I was recently introduced to the thought of epilepsy, when a good friend of mine had 3 seizures in one day...no history or anything of seizures (turns out, he wasn't diagnosed with epilepsy) so I really admire your strength and courage
 
brain said:

How's our Sandy Paws doing?
:roflmao:
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That's baaaaaaaaaaaaaad!!!

Welcome, Scott!!

I am a FIRM BELIEVER IN EPILEPSY AWARENESS ANY way we gotta do it.

Forgive me for not reading every word. My head can't read large passages anymore, I don't know why.

However, I give you KUDOS for what you are doing to spread the word about EPILEPSY.

I think the MEDICAL PERSONNEL are a BIGGY who need AWARENESS. (I'll shut up now or else I'll blow up regarding ignorant EMT's and Post-ictal stages of TLE)

Bless you for doing this!!
 
Thanks to the both of you for your words, but I have not done anything yet. My desire to help comes mostly from the idea that if I can get this started, I can begin proper treatment for my illness ( eating right, excercising, and living a stress free life) I mean, the idea of having a massive toy drive and putting a Santa on many islands that have never seen Santa before should not come from me, but from someone else who can get this done. I just want to be apart of it, and maybe spread a little awareness while I am at it.

And as far as the medical profession goes. Can someone please tell me if this seems right?

I am on foodstamps, and since I have epilepsy, had to see a doctor ( I am not a fan of neuros) So, I went to this guy last week, and talked for about about five minutes, and told him about the VNS implant, and how it worked. I also said I was still getting small seizures, but I was hoping being in a healthy environment would help improve my condition.

Without batting an eye, he told me I needed to be put on meds ( I stopped the meds three years ago after the VNS, and never looked back) I explained to him that I don't feel like meds are the answer, and would love to discuss other treatments. He said the ketogenic diet ( he just said it, but didn't discuss it. I don't think he knows much about it) Anyway, he was really insistant that I take meds. Then he told me this ( I will be paraphrasing)

" Since I am refusing medical treatment, he will be forced to tell the judge this, and I could get turned down for assistance."

Is this okay? I mean, considering that 30% of us do not respond well to meds, and I have been on over ten of them, is it ethical to put a patient in this type of situation. Choose either harmul drugs, or run the risk of not being able to eat. On what planet does this make sense?

Now, I think this is absurd. This guy obviously does not know any other treatment besides drug therapy, and he can determine if I eat or not. Sure, I could go to another dr, but that is such a hassle, and besides, many other people don't have that option. I am supposed to get an MRI tomorrow morning, and will be saying somethign to somebody. Should I be angry at all, or is something that we just need to accept, and move on?
 
In the USA we have the RIGHT to refuse treatment. I am not familiar with VNS.

You have to follow your heart.

However, if all you try fails, you may give medical science a try.

I am not familiar with the diets and such and I am pro as little meds as absolutely needed.

So, I wish you well. May you know in your OWN heart and mind exactly what YOU must do for your OWN self.

As for courts? I don't know. I used to FORGET appointments and medications and it was put on my Florida record (all hospitals/doctors read it) that I am NON-COMPLIANT. That has since changed, I think.

Some comments from doctors STICK like a LABEL.

God bless.
 
Epilepsy Bite sticks...How many people know about these?

Last year, I spoke about these products a lot on another website, and wanted to know how people felt about them in here. These products are marketed "For epileptic and seizure victims * Channels admit oxygen and is autoclavable * Restricts tongue movement.

Well, considering that all first aid says we are not supposed to stick anything in a person's mouth when they are having a seizure, these products are wrong ( if anything, they should only be sold to medical professionals, and not the public)

Last year, I called many companies and actually got one to stop selling them. I was told by the EFA they don't really care about seizure sticks, because they have more important things to worry about. And while I appreciate their work ethic, these seizure sticks still need to be pulled from the shelves, and I was wondering if anybody had any ideas.

Oh, I have started calling up random companies again, and I get aggressive with them ( that never seems to work). I also thought about filing a class action lawsuit against any company that sells these products to the public.

Again, I know this is such a small matter, but to me, it is the point. For some of us, we have had to deal with ignorant people sticking things in our mouth, and it is this myth that I want to end. Also, I believe a class action lawsuit, if done correctly, could bring in some publicity, and it might allow some other people to discuss other problems we may have.

If anyone has any ideas on this issue, please let me know. I won't talk about it anymore publicly ( I don't want to start any fights) so please send any thougts via private message.

Thanks,

Sand-A-Cause

Have a Happy HO HO HOLidays
 
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