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.

Thursday, 13 March 2014

Gardening Rules

Do not eat the compost

Do not eat the seeds, it is ok to eat them when they are corn, but not now

It is ok to move the pots of newly planted seeds, but not upend them

Do put the seed potatoes into the planting box nicely

Do not ram the seed potatoes into the planting box as hard as you can

Do not eat the compost

Do not eat the peat planters

Do not eat the seed potatoes

It is good to put the seeds in the earth in the peat planters and then poke earth over them gently

Do not eat the filled peat planters; they are not burritos

Do not eat the compost FOR THE LAST TIME

Playing on the slide during planting is actively encouraged

The cat does not want seed potatoes, ungrateful beast

Do not suddenly learn how to open the garden gate and run into the road while my back is briefly turned

Watering the plants is good, but NAPPIES MUST STAY ON

He still managed a mouthful of compost. Eugh.

Thursday, 6 March 2014

The calm after the storm

I picked up my parents from the airport last week. Mum was clearly still in the huff about her book and made a couple of snitty comments, despite the fact I'd given up a fair amount of time to do the pickup run.

I am glad I did though as my father looked awful - he'd been sick on both planes and I had to gently take charge of the luggage trolley as he couldn't manage to steer.

They dropped me off, I gave them a ready cooked dinner, then everything was virtually silent for a few days.

Then me and my sisters all got a somewhat cryptic text saying my dad was getting a home visit from a doctor (bear in mind that this is extremely unusual here).

This time it wasn't me that snapped, it was my oldest sister, who went a bit overboard, but called up to give them a bollocking about announcing there was a genetic disease in the family then flying off on holiday and not giving any further explanation.

What appears to have happened is that my parents told the consultant they knew what Huntingdon's was but actually didn't. They assumed it only affected old people and, although they realised fifty percent of people inherit the gene, thought it was its rare to develop symptoms.

My understanding is that the fifty percent who carry the gene on from a parent will develop the disease at some point, but the big uncertainty is when it appears - if you get it late in life its likely something else will kill you first, but if you are unfortunate to get an early onset case then it is deeply unpleasant.

Mum and dad were told they'd be referred for counselling and i think were meant to go to a session before deciding to tell us, but were so preoccupied with going on holiday they called everyone before they'd left the hospital.

I think they understand now - my mother was initially grasp why it wasn't simply a case of everyone supporting her and I think was horrified when she realised she'd made a mistake.

But the last time i spoke to her she was still moaning about not being able to go on long haul holidays with my father again, and my patience is wearing very thin. She hadn't managed to look at the NHS information on Huntingdon's and still seemed woefully ignorant about the condition.

Anyway, the actual appointment turned out to be with a genetic counsellor rather than a doctor, who we are all seeing separately. Hopefully I'll get some answers soon.