Sunday, December 4, 2011

My first real public speaking gig is finally over!

As a lot of you know, I have been selected to become a Gilenya Guide. What this means is that I have been given the most awesome opportunity imaginable -- to share my MS story with other MSers who come out to presentations about the drug. I get to be the living, breathing example of what it means to be on this therapy and how it's worked for me.

I won't get into the details of the presentation; if you want to find out what it's all about, check to see if there's an event in your area by going here:
There are new events being added all the time. If you don't see one close to you, perhaps you can contact your local MS group and have them look into setting one up. You can learn all you could possibly want to know about Gilenya from one of these events and get some one on one face time with a knowledgeable neuro.

Anyhow, I had gone through speaker training to learn how to talk to groups of people without melting into a puddle of nerves. Well, that's what the training was for theoretically, but I was still a ball of electrical energy. So much so that I had to wait until after speaking to even eat the nice meal they provided.

My sister went along for the trip and here are pics of us either near or at the little French restaurant where the event took place -- prior to the talk. This is in Athens, GA, home of the Bulldogs. We were oh so careful not to mention the Florida Gators whose home is  an hour or so from our own.

Just up the street from the restaurant. It was a beautiful day in Athens, GA! Here's my sister Lorraine looking as beautiful and radiant as ever. She was the cheerful cheerleader the whole time. Could NOT have done this without you, sis! ILYWAMH, ES.

Outside the restaurant. We got there early so we hung around outside to let the staff get the tables all set up.

The waiting, accompanied by nervous pacing and trips to the ladies room, was the hardest part.

No turning back. We're here. Let's do this!

So, people start showing up and I recognize Dr. Snyder from his photo that I saw when I googled him the night before. I walked up and introduced myself. We spoke about Anne, who is the other guide he had been scheduled to present with the night before. Their event got canceled due to lack of audience.

Anne is one of my long-time faithful blog readers who got into the Freedoms II trial after seeing that a hypochondriac like me could do the TRANSFORMS trial and live to tell. (according to her) Well, she's the one who brought the Guide Network to my attention and would not relent until I screamed "UNCLE" and got on board. She was in a previous training group and now has done something like 14 events.

Anyhow, after talking with the doctor about the meeting the night before, he mentioned something about her coming to my event. I was confused. Only reason I would be doing this one (which is a couple hours from her home) was because she was scheduled to be in Louisiana on another talking trip. The doctor was mistaken. I told him so.

He just smiled and said "I believe that got canceled." He knew he'd spilled the beans, but so what? It was a matter of just a few minutes in advance... long enough for me to whip out my cell phone, hit Anne's cell number and demand "WHERE ARE YOU?" when she answered. "Trying to find the damn restaurant!" was her reply.

Moments later she walked through the door and I tried my best to bowl her over with a big hug. It was awesome. Her nephew goes to college in Athens and he met us there, too. A good time was had by all. And I think it's safe to say I have met someone my own age and I am bigger than they are. PHHHHHT! Take that!

Anne's the littler one on the left. I have the head twice her size, I see. Poor mom.

Here I am introducing myself and telling everyone that it's my first time so go easy on me. LOL I set my notes down shortly thereafter and never referred to them again, I don't think.

Don't I look so genuine?

Two more pics of Anne and I. The last one is my favorite and captures her essence so well. :P

The trip was fantastic, the presentation was informative, the audience was warm and receptive.

I hope those who came out to attend left having learned something. If nothing else, they learned I cannot for the life of me tell the part about what Gilenya means to me without crying.

From the time I first saw my new neuro at an MS meeting talking about all the exciting clinical trials coming up, through being part of the most awesome clinical trial ever for MS, and now to the part about traveling around and sharing my story, I can't get over what it all has meant to me.

Everyone's experience is different, I know, but mine has been an amazing journey.

If your therapy you are on now is not working for you, be sure to talk to your doctor, be your own advocate, and don't be afraid to try something new. I did and I am so thankful...

PS: Anne, you didn't think I wouldn't blog you, did you?? Honestly? LOL

BTW, folks, Anne is another MS blogger and you can find her gems of wisdom over at

1 comment:

  1. I'm so thrilled to hear your first speaking experience was this amazing! I know it is just the first of many times you will touch and inspire lives. Hugs!


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