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debs

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book on moyamoya
Jan 26^th, 2005 at 3:23pm

I was wondering about something.....Back when I had surgery (in 1998) I talked with a wonderful person from Fargo, ND who helped me get all the info about Stanford, Dr. Steinberg, etc., who was writing a Moyamoya book (her name is Mary M.) Have any of you heard of a (maybe) recently published book about mm? Just curious...I've lost her e-mail address but I may be able to find an old snail mail address. Thanks for any info... debs

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mark

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Re: book on moyamoya
Reply #1 - Jan 27^th, 2005 at 11:07pm

Hi Debs,
I didn't see a reference to a book, but we are fairly new to the MM family. I have kept a journal and taken around 300 pictures digitally since Mark was diagnosed with moyamoya. I hope to put it in a word document so we can share with future patients what we have gone through. Hopefully it will help patients and family cope with it a bit. No matter how well you are prepared...
ron

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debs

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Re: book on moyamoya
Reply #2 - Jan 28^th, 2005 at 3:02pm

Dear Mark,

Thank you for responding & ESPECIALLY for what you are putting together for those who will need it in the future re:mm!! I know that in 1997 there was very little or no knowledge of mm, I was one of the lucky ones whose neurosurgeon had seen it before (once in 28 years) when I had my major stroke but had to convince/educate every other doctor or therapist (Quote: "it couldn't be a disease; it's not in any of my books", etc.) I'm going to write to Mary M. and find out what happened to her book; maybe there wasn't enough interest in publishing about such a rare disease. I'll post if I hear anything. Again, thanks to you & how you're helping all of us!! How will you go about sharing all your pics & info.? (I'm very technology stupid; can't even take a digital photograph "yet"~~I guess there's still time! Sincerely, deb

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mark

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Re: book on moyamoya
Reply #3 - Jan 28^th, 2005 at 3:15pm

Hi Deb,
I'm not real swift with tech stuff either. My older son is a computer guru and DJ, the resident expert will certainly help. It will be crude, but hopefully people can get an idea of what the process is like. For us I think things went fairly smooth for the amount of time and travel. As for Mark tahts another topic and we still have quite a ways to go. So from a parents perspective I hope it will answer some questions. There are many people that we have been fortunate to speak with or meet that have helped us tremendously. Especially DJ and Jill.

Ron

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debs Junior Poster Offline I love YaBB 1G - SP1! Posts: 63 Delafield, USA, usa, 358, 107, WI, Wisconsin Gender:	Re: book on moyamoya Reply #4 - Jan 28^th, 2005 at 4:05pm Dear Ron, I didn't realize that you were at Stanford right this minute with Mark!!! Good luck in his recovery!! I still think that my guardian angels helped me find Dr. Steinberg way back when we were all scheduled for surgery at Mayo Clinic; you are under the best possible care in the world! My prayers are with you, debs
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triciab

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Re: book on moyamoya
Reply #5 - Jan 30^th, 2005 at 7:26pm

I purchased two books on moyamoya in 2003 but these are the only ones I have come across.
Moyamoya Disease by: Kiyonobu Ikezaki, and Christopher M. Loftus
The Official Parents Sourcebook on Moyamoya Disease by: James N. Parker and Philip M. Parker
I purchased both of these at Amazon.ca but they were also available at Amazon.com. My 15 year old daughter was diagnosed in 2000 but has had the disease since birth. We live in Ontario, Canada.

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debs

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Re: book on moyamoya
Reply #6 - Jan 30^th, 2005 at 8:46pm

Dear Tricia, Thanks for your info. about available books; there wasn't anything available in 1997 & I appreciate your help. Did you find these resources helpful? (I am in my 50's now, after being diagnosed with mm at age 46.) The book Moyamoya Disease seems the most logical book for me to have, but maybe I need the other one in case my 3 children develop symptoms. Any opinions?? Thanks, deb

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DJ

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Re: book on moyamoya
Reply #7 - Jan 31^st, 2005 at 1:12am

Deb,

Some of us here on the site had access to "The Official Parents Sourcebook on Moyamoya Disease" that Tricia mentioned. Unanimously, I think everyone agreed it wasn't worth spending a dime on. There's basically no original information in that book, just a bunch of gobbly gook and links to old internet sites.

If you'd like to hear more about it, send me a PM and I'll fill you in on the details.

DJ

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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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triciab

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My daughter, Amanda, has
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Hanmer, Canada, canada, 381, 398, ON, Ontario
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Re: book on moyamoya
Reply #8 - Jan 31^st, 2005 at 6:29pm

The book on Moyamoya Disease that I wrote about is written in medical terms but I have enjoyed reading it. It is very expensive though so not all of you may find it to be a worthwhile purchase.
The Parents Handbook I also found to have older sites in it but it might be useful to someone who is newly diagnosed. I would have found it hepful in the beginning.

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Laura

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Re: book on moyamoya
Reply #9 - Jan 31^st, 2005 at 11:43pm

I have to agree with DJ. The parents sourcebook is a waste of money in my opinion. I purchased the other book, Moyamoya Disease and I have found it to be very informative and resourceful. It was expensive, but I felt worth the money. I can't remember the amount that I paid for it. I believe it was about $125.00 or more, but after I found this one, I located one on Ebay for much, much less. So, you might want to get on ebay and see if they have a used one still for very little. Just a thought. Laura from Louisiana Roll Eyes

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debs Junior Poster Offline I love YaBB 1G - SP1! Posts: 63 Delafield, USA, usa, 358, 107, WI, Wisconsin Gender:	Re: book on moyamoya Reply #10 - Feb 1^st, 2005 at 7:50pm Dear All, Thanks for all your help in finding mm books as resources. I looked on half.com for the moyamoya disease book but they were (cheaper &) out of stock. I'll look on the regular amazon website next~~thanks again!
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