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.


  1. O dear, that phone!!! I suddenly feel like I don't understand English any more.
    "bwefe"?? = they?
    I'll come back later and try again...
    Good for older sister to say something, and I hope you said you will have a personal appointment with a genetic counselor.
    BTW is your mortgage all finalised now? In my country it is common that people have life insurance parallel with the morthgage, so if you needed that I hope that was done as well.
    Keep calm and good luck.

  2. I'm really sorry you're dealing with all this - the Huntington's on top of the general old age deteriorations and book issues. I do sympathise. My mother was assessed (not definitively tested and diagnosed) as having Alzheimer's and so I face the prospect of considering whether I want genetic testing as well. Not the same I know, but wishing you well.