You go girl!!!!!

Good for you!  It is disappointing that they don't seem to comprehend the problem.

Those who find brain scans "art" are obviously not aware of what it is like living with such a rare disease that can affect your everyday life.

Seeing as you heard the word Moyamoya in a hospital (1st clue) during a conference (Obvious 2nd clue), it is apparent that it is a medical term that is affecting many lives, which should have alerted you to the fact that there are other names for bands than this.  You should have done your homework on exactly how this disease is affecting people and what it has caused and then maybe you would have thought of a more proper name for your band.

Just like you used it because one of the definitions being "puff of smoke," our neurologists wasn't so selective ignoring serious issues regarding the name and they used every part of the definition including "puff of smoke" while explaining to us that my daughter had just had 4 strokes.  It wasn't cute, funny nor did any of her scans look like art to me and they NEVER will.  Instead, they still make me cry wishing I could take her place.

 

I assure you, we are very sorry for your troubles. And again, we are not trying to offend. Your argument does not however, invalidate my assertion that it is not the word, but the feelings of sadness for your daughter, that is causing you to have an issue with the name. You bring a certain semantic memory to a word, perhaps because the first time you heard it was in reference to the terrible thing that was happening to your daughter. Let's frame the situation differently. My father died of a heart attack after playing a few folk songs with some of his friends. He was a musician as well. This was 10 years ago but i still feel a certain sting, a slight clenching in my stomach, when I hear certain songs. I was watching a movie recently and one of the songs was played, "Morning Dew." My first reaction was discomfort but i didn't feel the need to write the parties involved in making the movie and inform them that they had really upset me. How were they to know it would upset me? How were we to know that you were out there to take offense? Do you think that we named the band that to hurt you? Or others? I can understand grief. I, as most, have had my share.  But it does no good to blame. That would be stage 2 in the grieving process. Bad things happen, to my father, you daughter, and everyone else. You won't find any peace in demonizing or vilifying us, or a word. Again, we're sorry for your troubles....

Ok, Mr. Band member. First of all, I would like to take you to task on your post in this forum. You chose to come here and post the "left out portion of the conversation". I assure you that I did not post the last exchange of our conversation on purpose to withhold information, but simply because it was clear from our previous exchanges that I was getting nowhere with you and chose not to continue discussing that conversation here as it was pointless. As you said, "it's not going to resolve anything. We just have different opinions."  So I left it alone. So now, almost ONE YEAR after the original conversation took place, you come here to a forum that is dedicated to moyamoya patients and their families to bring it all up again. You said you did not go out of your way to start a conflict, but yet here you are after all this time, bringing it all up again. So many of your arguments do not make sense nor do they hold up. You say that you "liked the idea of relating our music to smoke , something without defined edges, that moves sporadically, haze and space and void." Great. That may be true, but then don't list the definition of this disease on your Facebook page and don't use images of our brain scans to advertise your gigs. You said the fliers weren't created by you and that you like to focus on the "puff of smoke" definition. Then you went on to say that you are not offended by "brain scan art". Well, we could go on to debate whether brain scan images are art, but you weren't using them as art, you were using them to advertise your band. You fail to see the correlation between what you did and calling a band lymphoma and advertising it with scans of people's tumors or better yet what if someone had a band called heart attack and advertised it with images of a heart patient's angiogram. I am truly sorry for the loss of your father, but correlating hearing a song in a movie that made you sad because of your personal attachments to it, to us being upset at the use of a "word" that by DEFINITION means our disease (not a memory of an experience or feelings about a bad time in our life, but the actually disease) is not at all the same thing. You are comparing apples to oranges. You also claim "how were you to know that you were out there to take offense." I'm sorry, but that's complete crap. You work in a hospital and heard the word there. Then you looked up the word to know it's meaning. You have the meaning posted on your Facebook page. You used images of the disease on a flyer. To say you didn't know we "were out there" is bull. I am not saying you purposely set out to hurt people, but some off your actions have been truly offensive (intended or not), including coming to this website to post about a long since finished discussion. Please leave the people of this site alone.

Look, we really meant no disrespect. Sorry we hit a nerve. It is just a word. We liked it for our reasons. You don't like it for yours. After this, I'll leave you to discuss our name without further intrusion. Perhaps, you can call us the "band that must not be named" or "you know who."

I truly believe you never meant to disrespect anyone by naming your band Moyamoya.  However, now that you have learned the entire definition, read how it is effecting people's lives as well as the hurt and suffering we are all going through, you are now disrespecting all of us by continuing to come on a site meant to be used as a support group to defend your band and belittle us at the same time with your comments at the fact that this is just a word that we associate this with.  I suppose if your band were to ever make it big and receive a Grammy, that you would see that as more than a word wouldn't you?  Although, if a miracle does happen and you make it that big, please at least include the entire meaning of your name and help us raise awareness in your thank you speech!!!!  As for now, please stop responding and trying to defend your band so we can move on and be there for each other as this is what the website was meant for.

My daughter is doing ok.  She is still occasionally having TIA's, but we are just monitoring her and trying to live as normal as possible, although as you know it will never be truly normal again.

I am so very sorry to hear about your son.  I cried when I read your post and I have tears now as I type.  It's so hard to listen to others talk about their experience after you have already made the toughest decision you will ever have to make in life.  Every situation is different and although they mean no harm, it does no good telling you of situations where somebody they know has come out of this.  You know your son best and you did what you felt was the right thing and I truly believe he is holding on for you to show you how strong he is and how much of a fighter he is.  My heart goes out to you and if you ever need to chat or vent, please message me.

Scott lost his battle on Easter Sunday at 3:17 pm. I will miss him terribly, mixed feelings, I wanted him to come home.  But, I'm relieved it didn't drag out any longer, it's not what he wanted.  He had talked to me before all this happened, about the possibility of him dying, he'd wanted his brain to be donated for research, if there was any way things could be learned about Moya Moya and help prevent this happening to someone else.  Unfortunately, it wasn't to be and he was cremated.

Hi, Karen:  I understand what you are going through, I really do.  My husband had a stroke almost exactly four weeks after his EDAS.  He presented for the first time at age 58, though I think he was having TIAs for a long time that he either didn't recognize or didn't tell me about.  We went through the same thing you did only for a shorter period of time -- stroke, then seizures, then botched care at the local hospital, until not even the wonderful people at Weill-Cornell could save him.  He was unresponsive for two weeks and since his advance directive specifically said no trach and no PEG, I had to set him free.  He died 20 minutes after the ventilator was removed.

Today I am doing a garage sale with the proceeds going to research for both stroke and moyamoya.  A lot of his things -- things that he'd long forgotten about or never wore -- are  being sold.  Neighborhood kids are helping out and it is a final celebration of his life.  I too dread the holidays.  I'd be happy to converse via PM if you feel the need.