So, why do a blog? I can honestly say I have no idea other than it seems like a good idea and I can't afford therapy. In December 2004 my husband was diagnosed with a progressive Neurological condition called Huntington's Disease. Prior to the day we met with the Neurologist, and they took blood for the relevant blood test, I had never heard of this disease. The diagnosis can only be likened to waking up from a lovely dream and your life becoming a living nightmare. My daughter was 3 months old when we received Mr W's diagnosis. Our children are now 3 and 7.
So, I guess I have stuff I want to talk about.
Whilst life has been a bit of a roller coaster since diagnosis it has not all been bad. In fact there has been a lot of good. One of the main reasons that I wanted to blog was that Mr W is going to start a Phase II clinical trial this month. I though it might be useful to share our experiences so that others can decide if this is something they may like to get involved in. I also want to share, that life, living with HD (or I guess in its shadows) ain't all bad... for someone just diagnosed that can be difficult to believe I know. It has taken me three years and a lOT of those lovely happy pills to get to this point!
I am happy to see that you are blogging! I am HD positive (just found out in December), and have 3 children at risk. My Dad was diagnosed last summer with HD... and he also had no family history whatsoever that we can find. If you don't mind, I am going to add a link to your blog from my blog? You can see it here at http://www.HDtrainwreck.com/
ReplyDeleteMy sister is getting tested soon, and she also has 3 children at risk.
Love your blog so far! Please keep writing!
Steph
(Stella)
Hello fellow blogger...I discovered your blog recently and love it...please do add the link. I will do the same on this one - if I can work out how!!
ReplyDeleteKind of weird that 'no family history' stuff...weird in a kind of RUBBISH way! I am sorry you are HD positive...you must still be in that awful shock phase.
Loads of love to you and keep in touch xxx