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Mar Ex Member	C'mon moyamoya family Oct 28^th, 2003 at 10:04pm Hey everybody Let's practice with Dj's new forum and get things movin' on this new message board. Let's show him how much we appreciate all his hard work and chit chat up a storm. We're all family
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Kelli New Poster Offline Posts: 5 Wichita, usa, 283, 180, KS, Kansas Gender:	Re: C'mon moyamoya family Reply #1 - Oct 28^th, 2003 at 11:02pm Just wanted to say HI! I am one of DeeJ's best friends and have been reading the board since the first day it was up. So, I finally decided maybe I should register and interact with people from the boards!
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Mar Ex Member	Re: C'mon moyamoya family Reply #2 - Oct 28^th, 2003 at 11:13pm Hi Kelli, Welcome! Any friend of DJ's is a friend of ours. He's an angel in our eyes. I'm sure you know that already. Thanks for your support. That's what this is all about. So...what can you tell us about Deej that we don't already know?
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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: C'mon moyamoya family Reply #3 - Nov 2^nd, 2003 at 5:00pm yeah give us all the info Let's show DJ how much we can learn from this site
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Kelli New Poster Offline Posts: 5 Wichita, usa, 283, 180, KS, Kansas Gender:	Re: C'mon moyamoya family Reply #4 - Nov 2^nd, 2003 at 5:55pm Well....he has a room in his house that I call the dungeon And he has a fat cat named Sadie. Not much else to tell about him. He's pretty boring! LOL
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Mar Ex Member	Re: C'mon moyamoya family Reply #5 - Nov 2^nd, 2003 at 7:10pm Thanks Kelli, you're a good friend in not telling us any juicy stuff where we can bust on em. Although, we could have had a good time with him. Think about it...
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elaine

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I love YaBB 1G - SP1!

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Sanford, USA, usa, 465, 285, FL, Florida
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Re: C'mon moyamoya family
Reply #6 - Dec 8^th, 2003 at 12:11am

I know DJ has worked very hard on this web site Smiley

Now I wish we could all find some way to have a moyamoya reuion and all meet somewhere in the middle Roll Eyes

I know I would attened anwhere in the United States if someone was able to set something up-----like emailing everyone or setting a page for anyone interested in a MM meeting where they could sign up, thensee when and where !!!!! ; Grin

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Elaine

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Mar

Ex Member

Re: C'mon moyamoya family
Reply #7 - Dec 8^th, 2003 at 8:06am

I agree. I'd love to meet everyone someday... especially DJ and give him a big hug. I know I'd do whatever I could to be there. If I'm not mistaken, I believe DJ mentioned having a gathering of everyone from his other website, "cluster headaches.com" and it worked just as you said. I bet it was great meeting everyone and having faces to go with all the stories.

Who knows, maybe one day WE will?? Smiley

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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: C'mon moyamoya family Reply #8 - Dec 8^th, 2003 at 9:18am Well I'll start the ball rolling! I would be more than happy to help organize some kind of meeting...I'm in the Philadelphia area. Perhaps in the spring or summer time - to give us plenty of planning. Any takers?? - Shari
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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: C'mon moyamoya family Reply #9 - Dec 8^th, 2003 at 9:39am I'd love to help, but I have no clue how . Let me know what I can do and I will be more than happy to do it.
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: C'mon moyamoya family Reply #10 - Dec 8^th, 2003 at 12:34pm I guess If I'm going to do this I would need to know what kind of interest is out there. Who would be interested in something like this?? Would you want to organize a one day thing or a weekend thing? Please feel free to send me an e-mail or private message through this web site as to interest or ideas. Thanks! - Shari
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kalise

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my son lives with moyamoya.

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westernaustralia, Australia, australia, 21, 203, WA, Western_Australia
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Re: C'mon moyamoya family
Reply #11 - Dec 8^th, 2003 at 6:48pm

hi everyone, i cant find the words to explain how much i'd love to meet all of you, but living in Australia, i have to be realistic and realise, that for me, it just wont happen......however when this reunion does take place, i'd love to see the photos, so i can put faces to the names........A reunion is a fantastic idea, im sure it'll be a huge success wherever and whenever it is....take care
Kalise

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Michelle New Poster Offline My daughter Cally has Moya-moya. Posts: 17 Campti, USA, usa, 328, 259, LA, Louisiana Gender:	Re: C'mon moyamoya family Reply #12 - Dec 8^th, 2003 at 8:10pm I am so excited to have someone to talk to about Moya-Moya. I hope one of you will e-mail me soon. I am pretty new to all of this internet business. Sincerely, Michelle
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Mar

Ex Member

Re: C'mon moyamoya family
Reply #13 - Dec 9^th, 2003 at 12:37am

Michelle wrote on Dec 8^th, 2003 at 8:10pm:

I am so excited to have someone to talk to about Moya-Moya. I hope one of you will e-mail me soon. I am pretty new to all of this internet business.

Hi Michelle, Welcome!
I read your post on the guest page and I was so glad to hear your daughter, Cally is doing well. We love success stories in our mm family. This is the forum to be in to get to know everyone. Many will come here with questions and experiences with moyamoya. You'll get to know some wonderful people. You just may be able to answer questions for them when they're experiencing what you've already been through. This family has been a God send to me and my family this past year. I think you'll love it here. Oh, and by the way... a few of us are new at this internet business as well.

We'll learn together as we go along. DJ will help you in any way he can.

Mar

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Michelle New Poster Offline My daughter Cally has Moya-moya. Posts: 17 Campti, USA, usa, 328, 259, LA, Louisiana Gender:	Re: C'mon moyamoya family Reply #14 - Dec 9^th, 2003 at 10:04am Thank you Mar! Did you or someone in your family have Moya-moya? If so, How are they doing. After reading some of the stories on this site I feel very blessed that we caught Cally's disorder in time.
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: C'mon moyamoya family Reply #15 - Dec 9^th, 2003 at 11:50am I second Mar's post! You've come to the right place to find support and answers. I'm glad to hear your daughter is doing well. We love success stories!! -Shari
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Mar

Ex Member

Re: C'mon moyamoya family
Reply #16 - Dec 10^th, 2003 at 10:02am

Yes, my niece "Mandy" was diagnosed with mm right after Christmas last year. Her mom, Nancy N., also posts here on the boards. They all have been through a rough year and have taught me so much in adversity. (As have many on this website) Mandy had several severe strokes and we believe DJ and this website saved her life. They knew little about mm here in Philadelphia, so Nancy took Mandy to Stanford and had her surgeries with Dr. Steinberg (An expert on moyamoya) and she is doing wonderful now. Getting stronger every day. Thanks be to God.

Mar

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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: C'mon moyamoya family Reply #17 - Dec 10^th, 2003 at 4:52pm Michelle, Welcome!! I will sit down later tonight and e-mail you.But your right it is so wonderful to have others to talk to about what you are going through.My daughter was diagnosed almost 2 years ago (January)She is now 6 yrs old.She is doing great now.This is such a great place for info. Mary Grace
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puterguy

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Houston, USA, usa, 303, 277, TX, Texas
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Re: C'mon moyamoya family
Reply #18 - Dec 13^th, 2003 at 12:47am

Hello all. I'm glad I found this place. My sister-in-law was just diagnosed with Moyamoya. She is curently seeing a specialist here in Houston and they are discussing her treatment options. I have done EXTENSIVE research on the internet on this disease. I'll be getting my sis on here as soon as possible. In the mean time if there is any way I can help out around here I would love to offer my services. (I work for a large computer manufacturer) Feel free to contact me.

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Michelle New Poster Offline My daughter Cally has Moya-moya. Posts: 17 Campti, USA, usa, 328, 259, LA, Louisiana Gender:	Re: C'mon moyamoya family Reply #19 - Dec 13^th, 2003 at 2:00am Hi!and welcome. This is a great place for everyone that has had their lives changed by moya-moya. My daughter had surgery in Houston in 2001. She was at Texas Children's Hospital. Her Dr. was Dr. Robert Dauser. How old is your sister-in-law and do you know who her Dr. is? Sincerely, Michelle.
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puterguy New Poster Offline Posts: 2 Houston, USA, usa, 303, 277, TX, Texas Gender:	Re: C'mon moyamoya family Reply #20 - Dec 14^th, 2003 at 2:19pm She is 32 and has 2 kids. I don't remember who she said her doctor is.
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pattil647

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Mom of Moyamoya Survivor

Posts: 70
Langhorne, USA, usa, 484, 119, PA, Pennsylvania
Gender: female

Re: C'mon moyamoya family
Reply #21 - Dec 23^rd, 2003 at 2:05pm

Hi! My name is Patti and I live in the Philadelphia area. My 9-year-old son Michael has Moyamoya. Dr. Scott performed surgery on Michael about two months ago -- Oct 13. Michael seems to be doing fine physically but emotionally he's a reck. He's having a hard time dealing with the surgery and the fact that he has an incurable disease. Did anyone else experience these problems? In any event -- I'd be interested in attending a MoyaMoya get-together. Sometimes it's nice for children to know that they are not the only ones going through difficult times. Thanks.

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STrantas

MM.com Benefactor

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: C'mon moyamoya family
Reply #22 - Dec 23^rd, 2003 at 3:06pm

Hi Patti - I'm glad you found our moyamoya family. I'm actually going to see Dr. Scott for my first surgery on Monday and I just found out today that they are going to do my other side a week later. I had made the assumption that I would have more time between the two surgeries but I guess it's mixed blessings to get both sides done "at once". While I haven't experienced the same emotions as your son (I'm 29 years old) my parents have, in their own way. I have the attitude that I have a rare disease - let's fix it. It's a bit more difficult for my mother to reconcile with. However, as we've said to many people, you have absolutely come to the right place. This is a wonderful support site, thanks to DJ, and all of the people who are willing to share their stories and support. Good luck to your son!

-Shari

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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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DJ

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Been there, done that...

Posts: 721
Wichita, KS
Gender: male

Re: C'mon moyamoya family
Reply #23 - Dec 24^th, 2003 at 12:01pm

STrantas wrote on Dec 23^rd, 2003 at 3:06pm:

I have the attitude that I have a rare disease - let's fix it.

Shari, bless your heart! You have the exact same outlook I did... Hang in there! I have the feeling you're going to be posting messages to the board from your bed in the ICU within a few hours of your surgery, just like I did! Just tell your ICU nurse you NEED a computer and they'll wheel one over to you bed like they did for me!! Wink

We will all be thinking about you on Monday and I promise you all... we'll have a moyamoya.com get-together someday soon! It'll be awesome!

Smiley

PS. Make sure Dr. Scott knows we're here!

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« Last Edit: Dec 24^th, 2003 at 12:03pm by DJ »

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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pattil647

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Mom of Moyamoya Survivor

Posts: 70
Langhorne, USA, usa, 484, 119, PA, Pennsylvania
Gender: female

Re: C'mon moyamoya family
Reply #24 - Jan 5^th, 2004 at 11:06am

Hi Shari. Thank you for replying to my message. I appreciate your support. You also sent me an instant message but I don't know how to reply to it so I'll just reply here. My son's neurologist is Dr Ichord at Children's Hospital in Philadelphia. However, I think you said that you're 29 and I don't know if you can see a CHOP doctor. I hope you're doing well...

Thanks again. Patti

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