I get you.

If you haven't read my post on One Twisted Story... go there, and then come back here. It will make more sense...

Early morning, never enough coffee. We choose the front row. Bad idea, when speakers are rambling on, and on and on, trying so hard not to use big medical terms, but they still are, and it's almost lunch time, and you just want to get the medical speech over with. Yes some was good, but I think we were all antsy to just talk to each other.

I must tell you as to date, we knew of no one with the same kind of Dystonia Frances has.

Right before lunch there was some Q and A time. A mom sitting over and behind us, was there with her husband, two sons (about 16 and 14) and her daughter, small, with short curly brown hair, didn't look a day over 7 years old.

When the mom raised her hand and asked a question, all I herd was "our daughter just had DBS and she is 11 years old. Because of the Dystonia she can not eat, drink, swallow, and she can no longer talk"... tears built up faster then I could control, I turned to look at my mom, and she too just had this teary eyed look of "someone is just like us..." I mean when you go 15 years thinking that Frances is the only one on the planet with this and then all of a sudden there is this girl... Stephanie... she was shy, but at lunch she showed us she has figured out how to kinda eat and drink.

She puts a teeny tiny piece of food in her mouth, then rolls her head back and to the side. It works. She found a sensory trick, or a way to try and live with Dystonia. We talked at lunch about her surgery, the family life, and day to day issues.

I met another lady, Cory, she was in her 40's and was considering the DBS surgery, she was probably where Frances was when she was 15. She can still talk some, but her neck is turning. She asked questions, we shared info, but she left before breakout sessions started. Maybe she was overwhelmed with all the surgery info... not sure...

After lunch we went back in the room, it took forever for them to get us all out, we just kept talking! There was another talk, and then the breakout sessions. There were 3 to choose from, Being a sponsor, Secondary Dystonia (not us) and then Family's with Dystonia.

There were about 30 people in the room. We sat in a circle. We shared.

The lady from Australia (she met Nicole Kidman back when she was still just and Aussie) her and her husband both have Dystonia, and they just had a baby. (not sure if there's is genetic) She was very informative, dealing with this and her husbands for 30 years now.

The mother, father and daughter. The daughter is one of those amazing people who were in a wheelchair, and after the DBS surgery she runs track in H.S. there's is genetic. The grandma, and father both have it. Oh and the girls brother does too.

The family I mentioned above was in there. And this husband and wife were there, to ask questions. There daughter fell while bowling, and she now has Dystonia.

This guy, Marc, and his wife were there. He has it, and it's like Frances' but he can talk. (I told you this disorder is random)

A lady named Sue, she just was diagnosed in February. She made me sad. Her family is a "heart disease family" she lost 2 brothers (she is in the middle of 11 kids) and her father to heart attacks. But now that she has this, they make fun of her. Saying it's for attention, and she is a freak. She said her husband hates her family for this. She was so proud of me, for being a sister that cared.

So far we have had an accident brought on Dystonia, Genetic Dystonia, Familys with Dystonia, and small children with Dystonia. And people with Dystonia setting in later in there life.

Then there was Mandy, again Dystonia must keep you from aging, she looked about 18 or so (the H.S. track girl above looked about 14) said she was 30. My age. She was there with her mom, who talked alot, but from what we know, the mom lost her husband 20 years ago. Mandy is the youngest of 3. Older brother and sister. Mandy and mom live in Florida, Brother and sister live in Wisconsin. Mom is on her own with Mandy.

Mandy has Dystonia from her chin down to her toes. She can walk across a room, then within a few seconds be flat on the floor. Her Dystonia makes her muscles SO tight that you can't move her. So she is usually in a wheel chair. Sometimes her mouth is effected, but for the whole time I saw her, she could talk fine.

Mandy is on lots of meds, all that Frances tried and they do not work. And one made her hallucinate for 3 days. Mandy has not had the DBS surgery, personally I think it would be great for her. It's funny how you always see who has it better then you. I mean some of these people were lucky enough to go to collage, get married and have kids before Dystonia even set in. But with Mandy. It started in 1978, when she was only 5 months old. Talk about lucky. Frances may not have had a voice after 14, but we were lucky to have her talk for 14 years.

We all talked and shared, and after asking us twice, we all finally got up and headed towards the main room. We gathered outside of the main room, exchanging information, and just talking.

As I stood in a crowd of about 20 people, I stood in front of Mandy, I gave her my business card, and said, "I know that you can't type well sometimes, but if you need to just say Hi" I told her I was really looking for a sibling who gets me.

I get a tap on the shoulder.

"Hi, I'm Alyssa, Mandy's sister. I'm 35. I get you." We cried. We hugged. We get each other. That is what I got out of the seminar. A friend who gets me. I know my friends and family care deeply about us. But to have someone totally get you? I mean that feels the guilt and the hurt you do? That is what I wanted from this.

I will do a post on more of the medical info, it is late, and I must go to bed. Stay tuned for more.