I'm just curious as to how many people have actually watched the video linked on the main page of the site about the Fong family from San Jose?

Has anyone actually watched it, or does everyone skip over it in their quest for information?

If you haven't watched the video's linked on the site, YOU NEED TO!  I've linked both of them on the "links page" as of today to try and make sure they get more exposure because they are both definitely a MUST SEE.

Here are the links:

http://www.moyamoya.com/moyamoya.wmv

http://www.stanfordhospital.com/media/winMedia/wmmKrontvNeuroMoyamoya.html

Let me know if you've seen the videos...

-DJ

I watched it when I first visited the site.  Very interesting and it helps to know that others has the same difficulty I had when first diagnosed.   :)Kristina

Yes Deej, I watched it and now that you mention it, that video answered alot of my questions when I first came to your website and learned about moyamoya. Ya know, ...I forgot all about the quality of information it contains. Excellent point to bring it to our attention again, rather than try to explain it in a post, it says alot right there!! Everyone should see it!!!

DJ:

I thought it was a great video, too. I watched it when I first came. I had my close friends and family watch it, too. It is so much like my story.

I hope everyone watches it... It is a great idea to put it on the link page! Will you also keep it on the home page???

:) Sara

I watched them!  

-Shari

Sara wrote on Jun 10^th, 2004 at 11:33am:

Will you also keep it on the home page???

Yes Sara, it will stay on the main page.  I think that video is the cornerstone the site is built around!  Everyone who has to find this site needs to see that video from the get go.

By the way, I've been in contact with Matthew's mom and dad recently (from the video).  They wanted me to pass on that Matthew is now 16 years old and doing absolutely wonderful.  He has been TIA free for over 10 years now and is living life as a normal 16 year old.

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Hi DJ!

I watched the video the very first time I found this site and it gave me more comfort and support that any doctor or prayers were able to so I definetely believe it´s a cornerstone on this site as you put it DJ. Louise also watched it several times and made me translate every single word so it has meant a great deal to her as well.
Sooo happy to hear about Matthew and the way he carries his MM, gives me great hopes for the future as I´m sure goes for many of us on this site! Thank you DJ for giving us hope and good news and important information all the time. You know, I love you for that!!!!

Take care

Annica

WOW!! Go David!!!

That is so great to hear! I was very touched when I watched the video. I had no idea he was already 16!!!

-Sara

We watched it in the very beginning, it helped alot.

I have watched it and it was great.  I plan on getting my friends and family to watch it.  Thanks Brent

I watched it when I first found the site. It was the first thing that wasn't medical jargon about MM I found. Gave me alot of hope also.

Rena

I just watched it lastnight and it made me cry :'(. Ror two different resons, one they were tears of hope for my mom, and second they were tears of regret that if we would have only known that mm is what she had we might have prevented her from having to go through all of this. Thank you so much DJ for starting this site. It has helped so much.                    Nikki

Nikki,

I have talked to you through emails and we will get our mm'ers together.  My sister/your mom.  Yes, they have gome through strokes but they have us there fighting for them.  Keep the faith and I will talk to you later

Janice  

DJ-

Thanks for setting up this fabulous website that is an incredible resource of information and a fantastic support system for people with MM and their families.

I'm very happy that Matthew's story was able to provide some help to other people.  That was our goal when the people of Stanford asked us to be a part of the video.

As DJ mentioned, Matthew is now a healthy 16 year old and attends the local public high school and is enrolled in the mainstream classes.  He just finished his freshman year with a 3.5 GPA and we are very proud of him.

The video was filmed in 1994 about a year after his 2 bypass surgeries.  He has semi-regular visits with Dr. Steinberg every year or so and has not had an ischemic attack since about 4 months after his second surgery.

Any affects of moyamoya seem to be fairly minor as Matthew was treated before he had a major stroke.  He has been tested and shows difficulty translating visual images into written forms.  He has regular weekly sessions with a tutor to help him with his school work and it seems to be working.  He also exhibits muscular (and nerve ?) weakness in one of his hands but that doesn't seem to hinder his skills playing video games.

We feel very lucky to have "dodged a bullet" and are thankful that Matthew's deficiencies are limited to the ones we have observed so far and we know that Dr. Steinberg is directly responsible for Matthew NOT having a major stroke.

Congratulations to DJ for his skills and effort in setting up this website and I would be more than happy to provide any additional information that might help someone cope with moyamoya.

Greg

Hi Greg,

Thank you so much for the update on your son Matthew and also for your part in the video. It was such a great source of hope for my family and myself, and it gave us a better understanding of this disease when we were so terrified. I know the video will help many others as well. As DJ has said, "You are Moyamoya Pioneers" and I am so grateful for you all.

It's wonderful to hear that Matthew is doing so well. He's getting so big. God bless him! He's is an inspiration to us all. I pray for his continued good health and a future filled with all of life's best!

Thank you again Sir!

Mar

Well, I have to say I haven't watched the video, yet.  I just can't bring myself to do it yet.  I think you understand.

Greg,

THANK YOU for joining us!  You and your family were one of the few inspirations I found when I was originally diagnosed with Moyamoya!  If it weren't for you, this site probably wouldn't be here!

It's so good to hear an update on Matthew!

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Greg---so glad to hear that Matthew is doing so well.....i have tried to watch the video 3 times, but I am going to have to ask my husband to install whatever needs to be installed so I can do it....it just does not come through.......God was, and is, certainly watching over your boy....I'm sure that the experience with MMD really make you appreciate the joys of today....it comes through in your post.....Love and Peace..pat

Greg, Thanks so much for sharing.  Matthew's video was one of the 1st things I found that made me feel hopeful about this crazy disease when Iwas first  diagnosed. I have wondered about Matthew, and I am so happy he is doing so well!! :)  Thanks,  Tricia

Wow . . . . . not sure where to start with this one!  I found the "baseball" in my throat growing larger and larger as I read the notes on this subject.

DJ - we watched the krontv video when Tara was diagnosed with MM in mid-May.  I watched the video of Matthew's family today.  Great idea to link them!  Thank you so much for everything that you do, all the way from your testimony to this website.  It provides an untold degree of hope for people, giving us a "connected" world to fellow MMers and their families!

To the Fong family - your story really hit home with us.  We, too, feel like we dodged a bullet, as our daughter was diagnosed prior to a major occurrence.  Tara is 17, and  Dr. Steinberg performed her surgeries on 6/2 and 6/9.  She is on the road to recovery, but still experiences some transient speech difficulties.  Tara hopes to resume all her usual activities within the next couple of months.  We live in San Jose, and would love to meet you sometime!  So glad to hear that all is well with Matthew, and hope for nothing but the best for all of you!  Take good care of yourselves!

Jill (Tara's mom)

Now that we FINALLY got our high speed internet hooked up, I am downloading WM9 (as I type this) to be able to watch the movie.  The download and the movie would be even more difficult at 56K here.

Diane

DJ, I just now watched the video.

I wished I had seen it way before now.

I wish there was some way to get the knowledge about this disease out there for everyone to know it exists.  Maybe this could be a cause of why their mom or their sister or their uncle becomes suddenly numb on one side of their body, and the ER doc says it will pass or there's nothing they can do.

This Web site is just a start for getting the moyamoya information out there for the world to know about.

DJ, I personally thank you for Kristina finally having her "brain surgery" three years after her diagnosis.  Yes, back then it was a scary thing to even talk about; "brain surgery."

Dr. Steinberg and Theresa are angels from God.  DJ, you are too!!!!!!!  

Rhonda

Mar is also someone who God sent to me at this time.

Thank you, Mar!!!!!

Jill (Tara's Mom)-

Thanks for your kind words.  I'm sure Tara will have a speedy recovery and be resuming her normal activities soon.

Matthew also experienced speech difficulties immediately after his second surgery. His speech slowly returned  after 5 to 7 days.  We still aren't sure what happened.  

Please pass along our best to Tara...she's in great hands and will get the best post surgical care available.

Greg (Matthew's Dad)

To : Pat M., Mar, gilberttl (and all of the others who responded)

Thank you all for your kind words and we all owe DJ a debt of gratitude for having the foresight, vision and talent to put this website together and keep it maintained.  He has put his heart and soul into this project to help all of us who have been affected by MM.

I know DJ has put a lot of work into this and I cannot thank him enough for all of the good he has done for more  people than he is probably aware of.

Greg (Matthew's Dad)

AMEN to that Greg, he is an unbelievable human being. Sorry D.J. I know you hate the praise but we love you and what you've done so much!
                       Nancy

I've been on this site a few times since my son was diagnosed with MoyaMoya about a year ago and today was the first time that I saw the link to the video -- I wish I would have seen it earlier -- it was wonderful -- thank you!

I'm very happy to hear that Matthew is now a 16 year old living a normal life -- I hope my son will be as lucky.  He just celebrated his 10th birthday last week.  Can you tell me if Matthew had the few problems noted in the update before his surgeries or if the problems are new? My son never had a stroke and his surgery was in October.  (He had one side repaired.)  I'm just trying to figure out if my son's current condition will worsen with time or if he'll remain as he is right now.  His condition right now is actually very good.  He was an A student but is now a B student in school but he sometimes writes his letters backwards (e.g. writes b as d).  This is something he hasn't done since he was 5 years old.  He is also more clumsy than he should be at his age and he doesn't memorize things as quickly as he once did.  What can I expect?  THANKS!

Dj-

Not only have i seen the video but during my surgeries many family members and friends also came to the site and watched the video too. It is a great item thats helps understand things a little more.

Christy

To Pattil647-

Matthew was 5 years old when he was diagnosed.  Images of his brain prior to surgery showed multiple infarcts that were the result of his TIA's and these are the probable reasons for his deficiencies. Trying to link a specific infarct to a specific deficiency is not an exact science as I have been informed.  He was never tested for the deficiences prior to his surgery so I can't say for sure that they were pre-existing conditions.  He was tested about 4-5 months after his surgery and that's when they were discovered.  

I am not the right person to predict your son's future but I can tell you that Matthew's cognitive abilities have not  seemed to worsen.

Matthew is also a bit clumsy and he is not a skilled athlete but I credit that more to his father's genes.

Since you mentioned that  your son had surgery on one side only, I would make sure he has regular visits with his physician to make sure that his other side of his brain continues to receive an adequate blood supply. (He should  really be examined to make sure that BOTH sides of his brain are healthy)  If he starts to show symptoms of TIAs, these could cause infarcts and affect various functions not to mention the possibility of a major stroke.  Your doctor is the best source of information for your son as I am only passing along information that is specific to Matthew.

Best wishes for you and your son,

Matthew's Dad

To Matthews_Dad

Thank you very much for responding to me.  I appreciate your help and your suggestions!