I may be the only one in need of something like this but I'de love to see some kind of list of symptoms that you all may have after surgery.If you remember my earlier post I was fustrated by not being able to help the school understand Kathleen and this disease and how it may be affecting her even after 3 yrs and maybe forever. my fustration isn't as much with the school I guess as it is with this disease.I try my best to forget about it, but I think it effects Kathleen more than anyone realises, but she just can't tell us.There's no test to tell what she feels throughout her day.Some days she's 100% and others maybe 40% on track.You all know from experience what may change from day to day to cause distraction exhaustion and just "not feeling great".It may not be a "pain" that she can point to so this makes it hard to ask her what's wrong.Thsi may help us to be "fair" in our expectations.And to anticipate the need to rest or take a break.Any input is welcome no matter how small you think it may be.Even a little numbness(something I've heard happens to many people even well after the surgery).may be enough to make her not feel great especially since she can't tell anyone and doesn't know what it is.Am I making any sense???LOLI don't want to assume everything is MM realted and let her get out of doing her work just be fair to her.Thanks for all your help so far!!!!
mary Grace

Wow Becky Thank you soooooo much this is exactly what I'm looking for.Someone to list what she could be feeling on "bad" days.If you don't mind I will use your exact words.Thank you thank you....Thanks ahead for any other info anyone can contribute...
Mary Grace

Hi Mary Grace,

I mentioned in an earlier post that I make a list of the different symptoms Kevin (Cubbie) experiences so here goes.

As you are aware, Kevin had a significant stroke which affected his speech and abstract thinking. When one does not have abstract thinking, one cannot drive a car, watch TV, read a book or watch a movie because it makes no sense. Kevin has been in therapy and is doing much better with his abstract thinking.

The stroke caused Kevin to have "high" anxiety. This results in not being able to focus or concentrate and causes stress to the point he can't be around people because they make him nervous. I believe, since his stroke, he just can't process all that information at once. It reminds me of over stimulation of a young baby or child.

Kevin has good days and bad days. Not every day is the same. Some days he can't speak, can't think, can't function, can't remember and can't concentrate. That is aphasia. Sometimes he has twitches, tremors (his tremors are worse on some days than on others) he gets numbness in his hands and extremeties. Kevin can't multi-task and on some days he can't do one task. Sometimes he has pain in his leg/hip and maybe a headache.

It appears Kevin is on a roller coaster ride.  He can take two steps forward and take three steps backward. Kevin has not had TIA's that we are aware of since his double bypass surgery in May. He has had rapid eye movement (like seizure activity) but we determined that was from a drug he was taking to help him sleep.  That is another problem. Often moyamoya patients have sleep and visual disturbances. Symptoms are different for each individual but it appears, Kevin experiences alot of different symptoms randomly and there seems to be no particular rhyme or reason.

I know how frustrating this can be to someone like myself who is with Kevin everyday and is familiar with moyamoya. I can only imagine how strange or odd or even weird it is to someone who is not familar with moyamoya and the many symptoms one can have and how one day they seem normal and the very next day they are just the opposite.  Like I mentioned earlier, there seems to be no rhyme or reason.

Moyamoya is a progressive disease. We know there is no cure. So when I really think about it, all the different symptoms that may or may not occur seem to be "the nature of the beast". I have always thought, with moyamoya it is not a question of "if" something will occur, it is a question of "when" something will occur.

Mary Grace, I hope this helps you and little Kathleen. Like I said, I know just how frustrating this can be. I also know how frustrating it can be to try and explain it to someone else. I have had docotrs look at me like I was half crazy when I explain to them what Kevin is experiencing. Keep in mind, the doctore in this area are clueless about moyamoya so why would I think they would know what it is like. So, I keep a journal and write the date and time and symptoms and then hand it to them. They just shake their heads. Only a moyamoya specialist or a doctor familar with the disease can relate to this random symptom thing.

Keep in mind, Kevin can tell me (usually) what is going on. If he can't speak, then I know he is "locked up" for whatever reason. Kathleen may not necessarily be able to verbalize what is going on so it is most likely a constant guessing game for you.

Best wishes to you and Kathleen.

Hugs,

Lore

How can I for get the weather. A MN dweller myself.  My stroke side gets colder easyer during the winter, but a hot shower or bath after work and school keeps my sperits up. and watch out for blood pressure! lots of activity (ie working out and making love) can elivate and may cause "bad" day symptoms unless you take breaks, calm yorself down and relax then you can contiunue with the race.
Becky