Hi.  Just had some questions about moya moya.  I'm not a stroke victim.  Just wondering how many of you have struggled with possible post-traumatic stress disorder since your stroke.  Has having a stroke affected your ability to keep a job and keep your home organized and clutter free.  Would appreciate your responses greatly.

mch

Hi there,
I had a stroke and subsequent surgeries (STA-MCA's to both sides) in 2001, and although I had memory problems after the first surgery to my left side (couldn't remember phone numbers and addresses etc and couldn't organise things - appointments etc) that has now totally cleared up. After the second surgery on my right side I suffered really bad headaches which I occasionally still suffer from, but I can live with that.
Personally,  I work from home doing graphic design and calligraphy for people and am fine with managing myself and my family's busy every day goings ons. After the surgeries, I have since had another child (he is 3 next monday) and I also have an active 10 year old, my husband is self employed - running his own business, which I help him do some of the time (I organise his taxes and liase with the accountant) and I also hit the gym hard and heavy 5 times a week, sometimes doing 2 classes (eg. spinning and pump) after each other, I also person train with a trainer once a week.
I live a fuller and more active life now post MM than I did before I found out I had it ( I was always fit and active before but i now appreciate life more, if that makes sense). My husband will say that I am untidy still but I can tell you that that has nothing whatsoever with my MM - that's just me!!
So I hope this answers your questions that there is life after MM.
I know I am very lucky to have come out of this the way I did but I believe that a positive mindset helps as well, and knowing that you can come through and beat the odds. We are also all here to support you and whatever you are going through so don't be afraid to lean on any of us
Moira

Moira:  Thanks very much for your feedback.

mch

Hi mch:

I think it's very normal to feel stress and traumatized after discovering that you have a rare disease.  I myself went through a 'why me' period.  It's important to get support through all possible avenues, as you need and want it.  If you feel very out of control to the point that you can't help yourself, definitely speak to a doctor.  

But as Moira said, there is definitely life after this disease (as she is a true testament to).  Feel free to ask any questions you may need to feel more comfortable with your diagnosis.  I don't know your particular situation, but there are treatment options.  

You are in my thoughts.

Hugs,
Trina

PS - I just noticed you're from Palatine - I used to live in Schaumburg right near Roselle & Golf.

PSS - Moira, happy early birthday to your little one!

Hi Mch,

Welcome to our moyamoya family.

My brother had a significant stroke a couple of years before being diagnosed with MM. He also had multiple cerebral infarcts and a hemmorrage. At one point he could not speak nor did he have abstract thinking ability. Without abstract thinking one can not read or watch TV or go to a movie or drive a car because it makes no sense. For instance, my brother asked me what happy birthday means. I think you get the picture.

My brother is probably one of the extremes. Not everyone with MM experiences a stroke because they get diagnosed and treated early and some that do experience a stroke do not necessarily experience a dibiltating stroke with lasting effects. That being said, my brother went through speech and abstract thinking therapy and is doing VERY WELL. He can speak and he now can read and watch TV. His problem is the lack of concentration and he gets confused. Again, it is different for everyone. My brother owned a residential and commercial garage door company and was a pilot. It goes without saying he will never fly another aircraft and he no longer has his own company. As for clutter, he is very good about putting things away. However, he might not remember where he put it.  

The thing to remember is what Moira and Trina mentioned. There is life after MM. My brother walks and uses a treadmill. He is very adament about working hard at being as normal as possible and independent as possible and as I mentioned earlier, he is doing extremely well. It's amazing to me but I also believe it depends on the individual and the severity of the stroke and a persons mindset and great will and determination. We have a saying at our house.. "You can get busy living or you can get busy dying". My brother has not only been very fortunate but is very determined to do all the things he used to do and then some. I say kudos to him for his perseverance and strong will to stay positive througout his MM experience.  I tell him he is like a Timex watch....he "takes a licking and keeps on ticking. "

As Moira and Trina mentioned, we are here to support you.  Please ask any questions.

Lore