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ann New Poster Offline I love YaBB 1G - SP1! Posts: 18 cambridge, USA, usa, 302, 84, MN, Minnesota Gender:	life after moya-moya Aug 15^th, 2004 at 10:33am I was dianosed with moya-moya in november 1999. I had sugeries done to help with the blood flow. My question is once in a while I have days where I feel tired and don't feel well. It only lasts a day and the next day I will feel fine. I was wondering if anyone else experiences this?
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Annica

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My daughter lives with
mm

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Stockholm, Sweden, europe, 317, 154
Gender: female

Re: life after moya-moya
Reply #1 - Aug 15^th, 2004 at 11:14am

Hi Ann!

I feel your question points out something very important here; Many times I wonder if my daughters "condition" is due to her moyamoya or due to the fact that she´s a human being feeling low and tired every once in a while, like we all do, mm:ers or not, right??
But yes Louise who had surgery on both sides 20 months ago does have her bad and tired days; I notice it but she can´t really express it. But the next day she´s usually OK again so I haven´t paid too much attention to it but maybe I should? Does anyone else recognize this??
Bye the way Ann did these tired days start right after your surgery or have they not been going on for so long?
Another by the way: Welcome to this site and glad to meet you!

Take care

Annica

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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: life after moya-moya Reply #2 - Aug 15^th, 2004 at 11:31am Yes, Mandy definately has tired days and not she can sleep half the day away sometimes. I guess it goes with the territory.
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Roz

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Re: life after moya-moya
Reply #3 - Aug 15^th, 2004 at 11:48am

Hi Ann and Annica,

I had my surgeries done in 1996. I have tired days every now and then - sometimes I put it down to just being 'normal tired' and other times I do think it may be down to MM. When I think it's MM related, sometimes I feel as if I'm 'going slow.' I'm not particularly worried about it but if you both are then maybe you can get some advice and reassurance from your neurologists and surgeons. Sometimes a little reassurance from my doctors when I'm a bit unsure of something is all I need

Best Wishes,

Roselyn

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ann

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I love YaBB 1G - SP1!

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cambridge, USA, usa, 302, 84, MN, Minnesota
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Re: life after moya-moya
Reply #4 - Aug 15^th, 2004 at 1:36pm

thanks for so many opinions. To answer your question Annica I started feeling tierd right after the surgeries. I was just wondering if any one else has this happen or is it just me. I think it is hard to adjust to this disease. After my aneurism it affected some of my short term memory so I had to get used to dealing with that so maybe this is another thing. I'm just thankful to be alive and to still be here. thanks to God. He know my work here was not done.

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mg12061

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Re: life after moya-moya
Reply #5 - Aug 15^th, 2004 at 1:37pm

Gosh this is why I love this place so much and read all I can. Kathleen isn't verbal enough to tell me all her "feelings".BUT I do notice that she is sometimes exhausted! Heat is a big factor in this.If she gets even a little too warm she is just limp.We kinda of say she's either "On today or not". Sometimes in school she will have a hard time with things we know she knows,luckily her teachers know this, and try again if she has a bad day.Sleep is also extremely important to how her day will go.She really needs 12 hrs a night.It's great to actually be able to substantiate all that we are "guessing" about with Kahtleen.
Mary Grace

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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: life after moya-moya Reply #6 - Aug 15^th, 2004 at 2:22pm For sure Mary Grace Mandy is a 12 hour a night girl too if not, she's napping, it must really take its toll. The heat also just drains her. Nancy
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Annica Experienced Poster Offline My daughter lives with mm Posts: 173 Stockholm, Sweden, europe, 317, 154 Gender:	Re: life after moya-moya Reply #7 - Aug 15^th, 2004 at 3:39pm Hi again! Just came to think about the name of this topic; "Life after moyamoya". I think that´s the whole problem there is no life after moyamoya, just DURING moyamoya. I mean you never get cured you just get treatment to get rid of symthoms but the disease is always there, am I wrong.....? Annica
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Nancy_N.

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My daughter Mandy Has
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Jasper, USA, usa, 436, 230, GA, Georgia
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Re: life after moya-moya
Reply #8 - Aug 15^th, 2004 at 6:54pm

I think there's life after MM people that catch it early enough seem to move right along with they're lives. You also don't have to worry about being a ticking time bomb while your waiting for surgery. This is only my opinion but I think life is to short to not move on you have to be grateful to be alive at that point, as many things as Mandy still has to fight against and fight for to recover therapy wise I'm just so happy she's still here no matter what shape she's in and I feel she still has a life after MM.
Nancy

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Mar

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Re: life after moya-moya
Reply #9 - Aug 15^th, 2004 at 11:28pm

It depends on how you mean it Annica. If you mean that you never really get rid of mm, you always live with it, so therefore there isn't ever an after mm, as the title suggests, Life after moyamoya. Then I see what you're saying, but if you mean there is no life after mm, well...I have to agree with Nance. There IS life after mm, IMO. Just look at the Matthew Wong story in the video and how well he's doing, and Corrie Wong, who after her terrible stroke at 18, she got her masters degree and of course our Mandy who we never thought would even survive, and you should see her smile, it lights up a room. I could go on & on. I guess it's all perspective, and I'm not really sure which way you meant it.

Mar

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Annica

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My daughter lives with
mm

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Stockholm, Sweden, europe, 317, 154
Gender: female

Re: life after moya-moya
Reply #10 - Aug 16^th, 2004 at 5:09am

Hi again Mar and Nancy and others!

What I mean is you never get rid of the disease but you do learn to live with it and live good lives too. Didn´t mean to sound negative and get anybody down by my remark but there really never is a cure for it right?. Meaning you always have to live WITH the disease, you can never forget about it totally, always have to follow-up and perhaps medicate...
My Louise is having a good life and I hope she will for many, many years still but as a mother I grieve that her life is always going to contain this hateful MM and worries about it.
I think you know me enough by now to know I sometimes have my bad days and talking to others in the same situation gives me strength. Didn´t mean to be a "Scrooge" (sp?). Sorry!

Take care

Annica

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Mar

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Re: life after moya-moya
Reply #11 - Aug 16^th, 2004 at 10:11am

Oh no way Annica, you didn't sound like Scrooge at all sweetpea!!! The topic just could have been taken many ways, is all. You DID mean it the way I thought you did and you're absoluetly right, you'll live with mm and all that goes with it probably always, and no AFTER. Unfortunately we don't know enough about mm to know what's down the path with it and as a mother I can certainly see how and why you thought it, I'm sure it's run through everyones mind, I see what you mean.

I would like to add though, that you are one of the ones that cheer me up the most with your positive outlook and precious enthusiasm. You're never negative to me, even with all you've been through. You just be you and say what ever you want and we'll discuss it, after all...we're family, right?

Nice talking to you Annica...

Mar

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Nancy_N.

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My daughter Mandy Has
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Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
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Re: life after moya-moya
Reply #12 - Aug 16^th, 2004 at 1:56pm

Annica,
I didn't think you were being a scrooge at all. I just looked at it totally different than probably most will but after all I am a pessimist.
I figured if you meant it that way you may be having a bad day and I would try to help you feel a little better. I agree your posts are usually always upbeat. I thought it was actually out of character for you but like you said we all have our bad days, and your right there is no after....done for sure which stinks and I know what you mean somedays I look at Mandy and it just breaks my heart to see all she has been through and had to give up for this dam disease. Some days I can just roll with it.
Nancy Roll Eyes

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Annica

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My daughter lives with
mm

Posts: 173
Stockholm, Sweden, europe, 317, 154
Gender: female

Re: life after moya-moya
Reply #13 - Aug 16^th, 2004 at 3:21pm

Hi Mar and Nancy!

Thank you for your kind words and for trying to understand me the right way even though I´m not all that used to discussing sensitive questions in English.
So happy there´s this site and you people to lean on when things feel rough! Wink

And to you Ann: I hope I didn´t pull you down by making this remark on your topic but I think this is the way we can support each other in learning to live with this hateful disease or being forced to see our loved ones deal with it all their lives.

Soooo happy to have you people to talk to. Kiss

Annica

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srkm5482

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I love YaBB 1G - SP1!

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Sugar Land, TX
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Re: life after moya-moya
Reply #14 - Aug 16^th, 2004 at 8:46pm

This board is SO great! We've been "living" w/ MM for 7 yrs now & I just realized about a 1 1/2 ago that becasue of MM, Kyle gets tired quicker than the avg kid! (Dr.s never mentioned this little "side effect"! And yes, some days are worse. We've worked with his school to arrange his schedule with his most difficult subjects early in the day & easy subjects last. So, mom/dads, keep this in mind when your children start school - it really helps!

Hey, Annica - I have a neighbor (from Sweden) with the same name!

sue

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Sue (Kyle's mom)

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: life after moya-moya
Reply #15 - Aug 18^th, 2004 at 5:45pm

Sue you ae so right!! It is definatly something to keep in mind for school.I never really knew wether the side affects where more from Kahtleen's strokes or the disease.I have alwasy asked that her special ed. time be in the morning,if it's scheduled late in the day it would be useless.I also have my Dr. write up all of the small and large precautions that must be taken, and give a copy to everyone who works with Kathleen.This includes a note that if Kathleen should have any fall at all the nurse must call me and discuss it, that way I can decide myself it's it's anything to worry about.Also if she is "favoring" anything at all I would likely think she may have had a stroke.(she isn't verbal enough to tell me all of this). Or if it's happening frequently there may be a problem.I also include that she needs drink breaks and may tire before the end of the day this was I can take her home if she is exhausted, Our Dr. is wonderful he will write anything I ask into this letter.These are some of the little things we've learned along the way.Oh another thing I include is that I am notified if there is any stomach bug or intestinal virus going around in the classroom(these are 2 things I worry about her catching)
Mary Grace

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CarasMOM

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
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Re: life after moya-moya
Reply #16 - Aug 19^th, 2004 at 4:34am

This is an interesting thread to read.....I think it helps alot to "move on" once you know whatever "disorder or handicap" you have. I guess we get used to the precautions, and know routines that are better suited for the needs. While my Cara is not old enough to have those thoughts...but my Type 1 diabetes, B12 defiency...aren't curable either but are things that need monitoring the rest of my life. I know when we "first" find out we have "something wrong" with us...it impacts us GREATLY...so much that you feel it would be "difficult" to go on....but we do "go on"...make the best of it...once we "make the best" of it...you get "used to it". It is websites like this where people have the same thing wrong with them (their family member, child or spouse...even friend or relative)...helps so MUCH. From my heart I thank you all for giving me the opportunity to talk....I don't have MM but my other disorders do make me more tired (never know if it is being MOM to four kids, or my diabetes off track, or my B12 defiency nerve damage thats still healing)....I know my Cara is much better when she gets TONS of sleep...Im sure she's had MM her entire life. and as with any illness that need recovering...lots of resting is needed. Wouldn't it be nice if we had "36 hours in a day"...we all get 12 hours of sleep and 24 hours to play and work...we'll all be happy

tight hugs, carasMOM

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Warm Hugs and Prayers, CarasMOM (Carol)

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Annica Experienced Poster Offline My daughter lives with mm Posts: 173 Stockholm, Sweden, europe, 317, 154 Gender:	Re: life after moya-moya Reply #17 - Aug 22^nd, 2004 at 1:59pm Hi Sue! So you have a Swedish neighbor named Annica?! Cool! 8)Does she spell it the same way I do? Where in Sweden is she from? How old is she? Tell her I said Hi! Take care! Annica
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