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Midwest Moyamoya (Read 17683 times)
Christie
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daughter with moyamoya

Posts: 75
Burnside IL
Re: Midwest Moyamoya
Reply #25 - May 21st, 2009 at 10:10am
 
Amy and I are in!!  Sounds like fun. IWe have never been to one of these meetings, can anyone explain what the agenda will be or do we know yet? Should we go ahead and reserve our rooms?
                          Christie
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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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Reagan
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Posts: 75
Lee's summit, USA, usa, 302, 159, MO, Missouri
Gender: female
Re: Midwest Moyamoya
Reply #26 - Jun 5th, 2009 at 11:20pm
 
Hey all. I don't know if you are still planning the Midwest Moyamoya meet up. I had to stay in California a little longer than expected and change my flight arrangements. Unfortunately I won't be able to make it because I am going to be playing catch up with the finances. I am so sorry. I hope you guys enjoy yourself. After the Stanford Picnic, I have to say that it is great to meet other MM'ers face to face.

Reagan
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disneygirl
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Blessed MM Survivor

Posts: 59
Danville, Illinois
Gender: female
Re: Midwest Moyamoya
Reply #27 - Jun 12th, 2009 at 6:26pm
 
If the midwest moyamoya get together is still on please let us know.  I thing there might be a few more people that are interested in getting together. 

Tracie
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First stroke in 1974
Diagnosis in March 2009
Surgeries in April 2009
 
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: Midwest Moyamoya
Reply #28 - Jun 12th, 2009 at 9:21pm
 
It appears this weekend turned out to NOT work for many people, and was a busy weekend for lodging in Omaha.  So, at this time the meeting is postponed.  Please watch for updates on when we will have the Midwest Meeting.
Michele
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Christie
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daughter with moyamoya

Posts: 75
Burnside IL
Re: Midwest Moyamoya
Reply #29 - Jun 13th, 2009 at 12:32pm
 
thank you for the update. Please let us know when it is rescheduled.
                                Christie
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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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Reagan
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Posts: 75
Lee's summit, USA, usa, 302, 159, MO, Missouri
Gender: female
Re: Midwest Moyamoya
Reply #30 - Jun 13th, 2009 at 3:03pm
 
I'm glad to hear that we still want to get together in the future. What about sometime when it starts to cool off? Could anybody possibly get away for a quick weekend somewhere?

Reagan
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Danielle
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3 year old daughter with
Moyamoya disease

Posts: 71
Michigan
Gender: female
Re: Midwest Moyamoya
Reply #31 - Jun 13th, 2009 at 11:59pm
 
Hello, Do any of you that meet up have children with MM and if so how old? I would love for my daughter to have other friends with the same disease. Also, this may sound silly but is it ok for people with MM to fly? I would love to meet some of you but cannot imagine traveling with my daughter.  Danielle
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Positive thinking is key!
 
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Reagan
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Posts: 75
Lee's summit, USA, usa, 302, 159, MO, Missouri
Gender: female
Re: Midwest Moyamoya
Reply #32 - Jun 14th, 2009 at 4:16pm
 
Danielle,

I am an adult with Moyamoya. However, I fly to and from California and other places. The only things I am not allowed to do because of Moyamoya is the following: wear anything that constricts blood flow, take birth control, sky dive and roller coasters. I hope that eases your apprehensions.

Reagan
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: Midwest Moyamoya
Reply #33 - Jun 14th, 2009 at 4:21pm
 
Most people do fly to and from their surgery, and there has been much discussion on this forum about flying.  As far as other restrictions, that seems to really depend on what your doctor has told you.  Many of us have been told not to take OTC cold medicines, diet pills, cough syrup, etc. Please discuss those recommended restrictions with your doctor.
Michele
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: Midwest Moyamoya
Reply #34 - Jun 14th, 2009 at 6:23pm
 
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1236182108

I think this will get you to the flying topic!

Michele
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disneygirl
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Blessed MM Survivor

Posts: 59
Danville, Illinois
Gender: female
Re: Midwest Moyamoya
Reply #35 - Jun 15th, 2009 at 6:31pm
 
How does Labor Day weekend sound for everyone?  I know that many of you have kids in school, but this would allow for an extra day for travel and the kids would not have school.  I would love to see everyone get together before we get into the colder more unpredictable weather of the midwest.  I see that you all have been discussing this since Dec. and thought that maybe we could make it happen at the end of the summer.  Let me know what everyone thinks.  Did anyone get to attend the picnic at Stanford the end of May? Roll Eyes Cool
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First stroke in 1974
Diagnosis in March 2009
Surgeries in April 2009
 
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Reagan
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Posts: 75
Lee's summit, USA, usa, 302, 159, MO, Missouri
Gender: female
Re: Midwest Moyamoya
Reply #36 - Jun 15th, 2009 at 7:42pm
 
I attended the picnic. It was truly amazing. I can't tell you how wonderful it is to meet other people with moyamoya. It really creates a bond that lasts a lifetime.

Reagan
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