Epilepsy Awareness Week

[CQ:)]

Over here its epilepsy awareness week 10 - 16 May.

On Tuesday afternoon my epilepsy educator rang me to let me know that someone from the local radio station wants to interview someone with epilepsy. My epilepsy educator asked if I'd be interested in doing the interview because I haven't let epilepsy control my life & I am very open about the epilepsy.

At 1st I didnt want to do it because I was worried I would go blank or swear on the radio lmao. In the end I decided I would do the interview even though I am pretty nervous. My epilepsy educator arranged for the media person at Epilepsy Foundation to ring me on Wednesday to go through with me about what would be involved in the interview.

When I was talking to the media person she also suggested maybe conacting the local newspaper but not sure if she did.

On Friday i got a phone call from the lady from the radio station but I wasn't home when she rang & when I rang her back I had to leave a message lol.

So now I just have to wait until I hear from the lady from the radio station & hope I don't stuff teh interview up

[Nakamova]

I'm sure you'll be great! Just keep the off-color jokes to a minimum...

[Birdbomb]

[Crystal11]

That is great you can have this opportunity. My twin sis and I were on the radio once for our music and composing. Because we are visually and hearing impaired (blind and deaf with out aids) we explained to interested people about how we do things in our studio.
We played live on air and were quit nervous. Our Mom was with us and the rest of our group stood outside the booth listening to the radio on the counter- in the radio station LOL.
I was very small and had an elevator which Mom used to haul our keyboards and other instruments. She got stuck halfway between floors but she wasn't scared.
We had a violin, cello, two keyboards and audio amps and speakers. We had lots of cables and connectors that we had to set up litterally in five minutes. It was hard just to find a place to sit, the talk with the host.
interviewed! Crazy, hecktic, and nerv-racking LOL But we made it and have a copy on tape.

We were also on Fox 7 news early early in the morning, aroun 5AM. We hauled our equipment and had to set up real fast. After setting up, we watched the weather guy present the weather live! It was awesome. We did an interview before we played and we had to play maybe 5sec as a lead into the story. Then we played for real and the whole duration of our two songs.
It was a real neat experience, intimidating but fun.
When we were finished, we went out to eat breakfast just to find out that most of Austin had watched the new that morning, including our teachers! LOL
Many people were saying hello and asking us questions. Kinda strange to us but neat also.
We were in the news papers 5 times and even had a crue follow us around for one year, in school, traveling around town, interviews, live performaces etc.
Now that right there was hecktic and nerv-racking even more! Lots of photos and even pictures being taken in class doing school work!


Anyway- good luck on your radio interview. Usually it goes better than you might imagine. Its a great experience and you might get phone calls asking you to present more.
My twin and I gave many presenations on deaf-blindness and music, even about using a mobility cane for the blind, and using a guide dog.

Anyway, good luck again and let us know how it went!

Take care, Crystal and her guide Umbro

[CQ:)]

Thanks everyone,
I'll let you know how it gos if I do get interviewed.

Crystal - you have such an interesting story & it's so good that you have let your epilepsy/vision & hearing impairments affect your life. Does your twin sister also have epilepsy?

[RobinN]

Great News CQ! I want to hear all about it afterwards.

[Crystal11]

CQ-
My twin sister and I were born three months premature and we both infact do have the same impairments and conditions. They vary in degrees but they are the same.
They are neurological conditions: Epilepsy, Cortical Vision Impairment as well as sensory-nueral deafness.
Danielle and I do not let things get in the way, although it can get us down and upset sometimes- we surely don't let it win each time.
There are others out there with it much worse than myself. The least I can do is to learn to live with it, how to cope, how to improve myself and also share information an stories with others who might be dealing with something similar.

Giving presentations to others and answering questions definitly helps more than just the audience members present. Most people take what they learn or hear and share with those close to them as well as friends.

Let us know how it goes-
Take care,
Crystal and her guide Umbro

[CQ:)]

Just did the interview on the radio, I was so nervous but had feedback from friends & my Mum saying i was good & didnt sound nervous .

Only thing that bugged me was the lady interviewing me kept saying fit so I kept going seizure. She also thought that people know that ive had seizure because they find me laying on the ground. I told her with my seizures im more likely to stare into space or not make sense when i talk instead of convulsing.

Lets hope the interview has made people more aware that people with epilepsy don't just take tonic clonics & alot of teh time we can still lead normal lives.

[Nakamova]

Good for you! That takes guts.

[epileric]

I don't like getting up to speak in public.

Great that you got to say your piece. I think the stereotype of all epileptics convulsing is the most common bit of misinformation that needs to be rectified.

[CQ:)]

Thankyou Nakamova & Eric,

I have always been shy & was very low in confidence when I was a teen. Over the years by I have become more confident & more talkative lol.

I never thought I would talk on the radio because I usually get really nervous when talking in large groups or doing interviews. It was my epilepsy educators idea for me to do the interview, at 1st I didn't wantt o do it but after talking to my Mum & close friends I decided I may as well give it a try .

[BuckeyeFan]

[CQ:)]

The other day I got a phone call from the media person at the Epilepsy Foundation I get assistance from. Their media person was telling me that next year they are bringing epilepsy awareness forward to March to concide with Purple Ribbon Day (March 26).

She remembered how I helped out for epilepsy awareness week in May this year by being interviewed on our local radio & asked if I would speak to the media again next year. Unfortunaly I can't do it as it will be not long after my surgery & I will still be recovering. The radio lady I spoke to in May was interested in doing a follow up interview with me.

The epilepsy foundations media person suggested that I could be interviewed later in the year even though it's not epilepsy awareness week. I am happy to wait until next year to do a follow up interview when it is epilepsy awareness week instead of just any day this year lol.

[ColmanMac]

"Break a leg", CQ - You'll be great, no hassles- we just need more folk like you on more radio stations in more locations - Am I the only 1 who has to harrass station Myra (thru work) to give airtime?
If it were me tho- I'd probably get the station bounced off air!

[CQ:)]

"Break a leg", CQ - You'll be great, no hassles- we just need more folk like you on more radio stations in more locations - Am I the only 1 who has to harrass station Myra (thru work) to give airtime?
If it were me tho- I'd probably get the station bounced off air!

Thanks Col

But I won't be able to do the interview for epilepsy awareness week next year. I am sure my epilepsy educator will try to encourage me to do the follow up interview on radio later on next year lol.

[ColmanMac]

Whenever you get round to it, give em hell my friend - That way I guarantee they'll remember you & invite you back!

Whenever our local TV or radio stations want formal interviews/comments, they get them from me. Whenever they want something more "Bolshi" they get them from 'A Company Spokesman' - Which is also me!!!

Merry Christmas
Col