Hello!

9 Comments

To say the last couple of years have been easy would be a lie. I posted an article quite some time back relating to moyamoya disease which is a condition which causes multiple strokes & is mainly associated with women & children however my man was diagnosed with this. This disease has impacted on our lives & relationship in ways I find hard to explain. He had his first brain operation last May which involved extensive brain surgery & has had his last & final operation 3 weeks ago. I was working full time but his condition meant he needed a carer so being in love with him as much as I am I wanted to be the one to do this which I have been now for a year. During this time there have been many appointments with rehab, therapy & counselling as Jason has needed this help between ops. This is a disease which is very rare & if not diagnosed would be fatal. Apart from how it has affected us I want people to be aware as it is more common in children who are sent home with the diagnosis being epilepsy & seizures. Fortunately for Jason he was diagnosed & these operations should prevent further strokes & if I diagnosed moyamoya sufferers are very likely to end up with Parkinson’s disease. Jason is 43 & has had 8 strokes in a n 18 month period. He is recovering well although suffers from serious headaches which is probably the blood flow pumping around there which he hasn’t felt before. This condition has affected Jason in many ways, he is unable to drive, suffers from agoraphobia & depression just to name a couple. We are now finally at the stage where hopefully in a few months he will be able to drive, work & live his life which is what I want more than anything for him. I am now in a position to look for part time work which is great but I must admit it’s a bit scary as we have pretty much been with each other 24/7. I guess I’m wanting to spread the word regarding this disease which can be fatal. There are websites which are very helpful & wonderful support groups. That’s my story in a nut shell & I’d be most grateful if you could spread the word regarding this disease. I’m looking forward to having the love of my life back to his happy self.


Posted by sanjipanj, 24th February 2015


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  • I hope all goes well for you. I did read your initial story.

    Reply

  • well you are one strong lady and you are keeping your family strong.

    Reply

  • Thank you for sharing your story. I have never actually heard of this disease.


    • It’s such a frightening disease, thank you Hun :)

    Reply

  • That is excellent – and I agree, spreading the word is much better than not talking about it at all.

    Reply

  • I remember your original articles. I’m glad the future is looking so much better for you.

    Reply

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