Hey Tonnia,

Thanks so much for your post! 

I can't speak for anyone else, but I don't THINK that ANYONE is blaming Jennifer.  I agree with Jill that she and her husband were very brave to do the interviews.

I agree with you, it's the media.  I know how it goes -- I did a video during my surgery for the Stanford video and did about 15 minutes of taping and ended up on the video for what I like to call my 1.8 seconds of fame.   

I truly hope Jennifer does not feel any of us are pointing the finger at her.  It's clearly Primetime that we have issue with (and ABC for airing only part of the show).  Someone said that it was probably edited out of context, and I agree that it probably was.  I'm glad MM got some exposure, as something is better than nothing of course.  That's where I have mixed feelings -- it was just a little disappointing (the editing, not the story). 

I think though it always happens with the media.  Celebrities always complain that they are taken out of context but I wouldn't be surprised if they consistently are.  Also, I remember when my brother was interviewed as a medical student (way back when) and they edited him TOTALLY out of context. 

All that being said, most importantly, I hope Jennifer is doing better and please know that my thoughts are with her. 

Hugs,
Trina

Hi everyone.

When Dr. Steinberg first asked me about doing the piece on Nov. 6, 2006, I automatically said yes.  I did not even ask my husband...I just wanted people to be aware of moyamoya.  Now, after watching ABC Primetime's piece, I have mix feelings...Was it is a good piece?  Was it long enough?  Did it describe moyamoya?  There are so many questions and opinions about the piece...and I am not sure "ONE" piece would address all the questions.

Now, to my "cure" comment...I am very LUCKY.  I said that purely on a selfish level...disregarding others before me who were not so lucky.  The stroke of Sept. 24th was not much of one...I could not "speak" for an hour or so.  The hand numbness--the week before-- went away before my speech problem.  The symptoms were mild...and I have EXCELLENT doctors that cared for me and help diagnosed and treat moyamoya.  It has been a month now...I am on aspirin, 325 mg a day.  When I forget to take the aspirin...I do get intermittent headaches...when I say intermittent, I mean a second or two.  When I get nervous, my speech gets affected and I begin to cry...so now, I try not to talk. 

Thank you Tonnia and to everyone on this post.  I am sorry  for my cure comment and seek your understanding.

Jen

Hi Jen!
I think it was amazing that you and your husband put yourselves out there at an incredibly difficult time.  It was a very brave and selfless thing to do.  Thank you for allowing yourself to be filmed so that others could learn about this disease.
Please don't take offense to anyone's comments about you saying that you were cured.  No one is upset with you for saying what was in your heart.  You said what you felt and there is nothing wrong with that.
I think most of the people who commented about it (myself included) were just disappointed in how the ABC team handled the editing of the piece.  It's great that MMD was mentioned on TV at all and awareness was raised.  There is just such a lack of information available and a lot of misinformation out there.  I was hoping that the piece would have been longer and contained more helpful information, but let's face it, ABC is a for-profit station.  They are in it for the ratings and aren't in the business of running educational documentaries.  Maybe we can hope for the Discovery Channel down the road.
Jen, when you say your speech is affected, how is it affected?  Are you unable to speak? Do you stutter? Do you have problems finding the right word?  I hate to hear that you try not to talk.  That breaks my heart.  I have speech problems too and depending on what is going on, there are methods you can use to compensate.  Also depending on what it is and how frequently it is happening, it might be something that you would want to tell Theresa about so she can let Dr. Steinberg know.
My best to you.  Thanks again for being so brave.

-Tracey

Hi Jen!

I think that your comment on being cured is a feeling that a lot of MM'ers have.  Just for the fact that the prognosis for MM'ers without surgery is not very good at all versus the prognosis for MM'ers with surgery is pretty excellent.  I'm not sure of the exact #'s but they must be pretty impressive because after my brother who's a neuroscientist, did some researching, he said that surgery is the only way to go. 

I felt the same way after my daughters surgery.  It's only post-operative that you begin to realize that there are still issues and symptoms to deal with.  But they are easier to deal with knowing that surgery increases your odds many times over on living a healthy life.

Thank you so much for the courage to get the word out.  You're a hero.

Cheri

A BIG WARM WELCOME TO YA JEN!

So glad you popped in on the board. Please don't be overwhelmed by this thread. I really feel most here are so grateful to you for doing the piece and YOU ARE a CELEBRITY here!

This is not like other boards....it is VERY supportive and understanding....and with oodles of insights to help you through pre & post surgery issues.

Pull up a chair and stay a while   

Diane