Thursday, 27 March 2014

An update

Not a terribly exciting one, but I've been neglecting my blog...

Our family Huntingdon's (other families have land and titles, and possibly a line of pedigree Labradors, we have a disease...) turns out to get stronger through the male line. So my sisters and I are unlikely to get it until late on in life. If I have HD, and the Boy also has it, then his children may get earlier onset HD.

All this is second hand, as I've been frenetically busy with work - or possibly doing displacement activity, however you view it - that I haven't had time to speak to a counsellor myself. Our mortgage is sorted, but I'm actually at the point that I'd rather not know too much.

My relationship with my parents is almost non existent. We met up with them briefly so they could look after the Boy for a while, which was mostly because I thought it might be good all around if I didn't cut things off between him and them.

That went ok, but then a few days later Mum texted us to invite us down for dinner, then phoned up both me and my sister because, independently from each other and for very good reasons, we hadn't replied within about 8 hours. I tried to speak to her but she just wanted to whinge about everything - how ill my father is, how the NHS aren't doing enough - which I thought was a bit rich given their recent adventures abroad. 

("The holiday was the only thing keeping your father going"; I get that not being able to do long haul trips is a bit confining, and my parents have spent a lot of time in this destination, but really, I am heartily fed up of my Mum making our the world has ended, particularly after the book/HD diagnosis).

The conversation ended badly, and then she sent an e-mail to all her children trying to justify telling us we might have HD and then immediately pissing off on holiday, not giving us any more information, and blaming it all on her consultant.

On happier note, we are at a crucial point in gardening. Having sprouted things inside, we have moved them outside - potatoes and peas. The sweetcorn I'm trying to sprout isn't doing too well, and I think I may have killed some sunflowers by forgetting to water them, but hopefully we'll have things working soon.


  1. I'm kinda hoping for a photo of the garden one day. Or at least, of some of the produce. Is that too much?

    I'm really sorry your Mum is complicating things so much. I think you're doing the right thing, keeping the lines of communication open, and allowing them and the Boy to have a relationship.

    I think choosing not to know too much - especially at this age and time in your life - is probably sensible, and if it's right for you, then it's the right decision (displacement activities or not). There is so much to deal with if you do know, there's that whole question of whether it is in fact advantageous or not. I'm the same way with Alzheimer's. I don't see that at my age I need to know yet (it didn't show in my mother till her late 70s). Maybe in five or ten year's time. But I've got enough to deal with at the moment. I don't need any complications. Good luck.

  2. Really hoping you and your son don't have HD