Could someone refresh me on the need for lots of water.
I'd appreciate that. I know it's true and am a heavy drinker (H2O) but would like hear what you all say about water and mm.

Re: flying, mm and water availability.

Seems weird that we're having to worry about getting water on a plane. yeikkks! Sorry the world has gotten so crazy.

Possibilities:
'Keep Hydrated'  could be added to medic alert tags.

I carry a card that states that I'm a moyamoya and two stroke survivor and sometimes can't fine words. Now I'll add the need to find water.

Jills letter will be helpful too. Thanks Jill.

Thanks,

Linda (LA)

So do any of you guys wear medic alert bracelets for your mm?

I wear a medical alert bracelet.  I used to wear it only when travelling but now, since the Orlando gathering I wear it every day.  I've actually ordered a nicer one because I don't love the one I have.

The one I currently have I ordered from
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The new one I ordered was from:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

As for the water - I was told by Dr. Scott to keep hydrated - I believe it keeps things flowing!  Also I've noticed that when I get really dehydrated I start slurring my speech.

-Shari

LA wrote on Aug 28^th, 2006 at 12:35pm:

Could someone refresh me on the need for lots of water.

The way I understand the need for water is, water makes up over 60% of our body and every single cell relies on water to function. It aids in our digestion, and carries the essential nutrients throughout our body. You can get dehydrated so easily and sometimes not even know it, because you not only use up the water your body has stored up by sweating or exercising, but also from traveling by plane or just drinking caffeine or alcohol, to name a few. They say, if you get thirsty you have already lost a significant amount of fluid, and even mild dehydration can cause dizziness, headache, fatigue, and more seriously, it can effect your blood pressure and circulation, which is dangerous for someone with moyamoya.

That's how I see it.

Mar

What kind of MM people where the tags?  I've hundreds of TIAs big and small and still do when I'm dehydrated, tired, or dealing with a headace... Is it really necessary to have the tags if you haven't had a stroke?  Sometimes my symptoms do get pretty bad.  I"m just not sure if I want to pay for it or make it known to the world that I have this outrageous disease b/c they don't know what it is anyway.  

Hi Ladybugz!

I’m not at all sure exactly what you just asked, but I do want to emphasize the importance of a medical ID bracelet. Someone that has MMD is at risk of a possible stroke, and if that occurs, you may not always be able to speak for yourself, so that ID will speak for you. Every minute counts when someone is having a stroke. The longer the blood flow is cut off to the brain, the greater the damage. When a stroke occurs, brain cells begin to die because they stop getting the oxygen and nutrients they need to function, so a stroke victims has the best chance if treated quickly! Even if there are people that are not familiar with MM, that's what the ID bracelet is for, to make them aware, and who to contact. It saves lives!!

There are many other important reasons to wear a medical ID bracelet or necklace and I thought it important to post that to new members as well.

Mar

I never thought about a medical id bracelet for MM but it is a good idea.My daughter has MM and will be starting school next year.Of course,the school staff will be informed of her condition and all necessary precautions but does anyone think it would be a good idea for her to wear a bracelet anyway?

Jennifer

It is important for everyone with MoyaMoya to wear a Medical Alert bracelet.  The information on the bracelet may someday save your life!  

For any runners, bikers, etc. there is a great tag that will velcro on your shoe.  I just ordered one for myself and one for my father who has RA.  It has my name, home phone, husband's cell, allergies and MM on it.  The website is www.roadid.com  I was very pleased with mine.
My experience with water is that I get severe headaches if I don't stay hydrated.  This is new since my diagnosis and surgery.  If I feel a headache coming on, 9 times out of 10 if I drink several glasses of water, it goes away immediately.  I also get severe dizziness when dehydrated.

Thanks to everyone who responded to the WATER question I posted.

The discussion about being hydrated was wonderfully informative and the medic alert thoughts were too.
Thanks so much

Hope others can benefit from this discussion.

Linda (LA)

Ok, I have to revisit this bracelet thing.  This October will be my 10 year anniversity of brain surgery (left side only).  And in all that time I haven't had any major complications.  However, I am thinking about getting a bracelet because ya never know.  So...now I have to decide what to put on my bracelet.  I'm thinking of things like keep hydrated, avoid epinesphrine (sp), moyamoya, maybe a phone number.  Any suggestions?  Thanks.

I have...
Front:
My full name
Hist of Stroke
Taking Aspirin
(over)

Back:
I have Moyamoya
2 EDAS Surgeries
in 2003/2004
See Wallet Card

You can fill out a free wallet card at med-ids.com.  There you can put more information such as medicines you are on, emergeny contacts, doctor's phone numbers, etc.  

-Shari

there's zillions of reasons/facts as to why everyone, not just MM patients should keep up their hydration. Mar named some very good points.... other [necessary] benefits include regulating body temperature and breathing.

i agree with Chelsea in that i find a lot of the times i feel a headache coming on- if i drink water before jumping straight for the paracetamol pack, the headache often goes away.

as for the medic bracelet, i agree it's quite necessary. i wear one however i'm about to update it to a new one. in australia you can register on www.medicalert.com.au and receive a tag with basic details [of your choice - I will keep mine with "Stoke Sufferer" "Moyamoya" and probably add my name] + a unique identification number, which when entered into a nationwide medical database will bring up your [registered] medical details in case of an emergency...
even if you're not [or no longer] at great risk of a stroke or similar; it could also be very useful in case of any unrelated accidents... if nothing else, to at least let medical help know what medications you are on etc... i guess you have to assess the risk yourself as to what could happen if you were found unconscious and no one was aware of pre-existing conditions.
also information like whether or not you have ambulance covere would be useful if 'tied to' the tag somehow (wallet card, registered info.. etc..)

ladybugz... i also didn't really understand your post.. however perhaps you should watch your wording a bit.. for starters... MM symptoms aren't always classed as TIA's.. while some of us may throw that term around lightly, Transient Ischaemic Attacks are a very serious occurance [and not usually triggered simply by dehydration and/or tiredness...]
and although Moyamoya doesn't seem to make a lot of sense a lot of the time, i exactly wouldn't label it an "outrageous disease"... and you'd be suprised at how many medical professionals have actually heard of MM.. it is just a common case that a lot of them haven't yet seen it. so, writing "Moyamoya" on a medic alert tag would actually be quite useful. Even if the medical professionals hadn't encountered the condition before, they would possess enough knowledge to not treat any situation lightly.

Another good reason for the medic alert tag is in case of an accident where emergency surgery is needed they will look up Moya Moya and see that you have to be careful with the anesthesia.  Always better to be safe than sorry.  Thanks for the website of id bracelets.  Julie would like to have a new one that might be a little more attractive.

Thanks guys
Cheri aka JuliesMom

Thanks for all the info u guys.  I think my Xmas present to myself will be a nice medic alert bracelet.  When I get hot, necklaces bother me.

paracetamol pack?? What is that?

Sorry Emily if my wording is off and if I use the term TIA improperly.  I have the symptoms equivalent to TIAs everyday....  Most likely not always TIAs.  My headaches are so bad that it sends me into the symptoms of TIAs.  Loss of sensation, cloudiness, incoherency, inability to stand or think and sometimes droopy face. and I was just venting frustrations bc for 20 years no one could answer my questions.  At least there are people that know what MM is.