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It was about four years ago, and they told me in the hospital that I had got the Huntingdon’s. Also, I split up from my husband - he didn’t want anything to do with me after finding out that I had the Huntingdon’s gene. I’m one of eight and my older sister died of it. I shake a lot; I have to have carers all the time. Christine looks after me, don’t you?
I do, I hope so?
When my sister first had it, her husband looked after her, he used to feed her all the time.
Well, I have got my niece, she has got it and I lost my eldest brother, he died of it, at home. That’s about it, isn’t it?
And another brother?
Oh yeah Roy, yeah that’s right I remember him. I have been a carer myself and I didn’t know about it until I lost my Nan. She had it back when I was a baby and my Mum never even told me why she died on me. But it’s just one of those things.
I am in my seventies now and the diagnosis came because my sister started having problems and nobody knew what it was. Eventually, I found out it was Huntingdon’s, because we didn’t have a history of it in our family, so we didn’t know it was going to be that. And so, after my sister was diagnosed, we thought that I would get tested. They said that because of my age I probably didn’t have the gene, as I hadn’t shown any symptoms, but I was positive. That was in 2011 and she said that you wouldn’t probably show any symptoms for five years, but it’s been like seven now.
So, I seem to be doing okay at the moment, still no symptoms. To begin with, it affected me quite a bit, I was a little upset about it and terribly worried for my two sons. But now it doesn’t worry me at all because of my age, the only problem I’ve got now is with my sons.
Yes, I come here to the Huntingdon’s Association Group, but when I was first diagnosed, I was put in touch with Alison and she is the nurse, the HD nurse for the area - and David who runs the Huntingdon’s Society here, he was absolutely fantastic. I don’t feel supported by my GP’s at all, whenever I go they never even mention it, the only time was when I had an ear infection and was losing balance and the doctor just said to me, very off-hand, “go back to the hospital because obviously, it’s your Huntingdon’s disease starting” and it made me very, very upset.
But when I see the way my sister is treated, yes, they should have a better understanding. I don’t if you know that Huntingdon’s people kick out and move their arms around a lot? And one nurse said I have had to put your sister on report as she kicked someone. And I had to go and tell them that she does do that - that’s what Huntingdon’s Disease does. If you read up about it, and so they should know, because that is not nice to go in to the care home and to say that about your sister. But she started sort of having symptoms, she was falling over a bit and she couldn’t speak very well in her middle fifties and nobody knew what it was, they thought it might have been dementia, but then she was tested and found that it was Huntingdon’s and she has gone very rapidly downhill. She can’t hold a conversation now, she can’t walk and she’s just really not there in a way. She just sits in her wheelchair and just smiles occasionally, and now she’s rapidly gone downhill and it’s heart-breaking to see her, yeah, it really is.
