Living with Huntington's Disease

Huntington's disease or HD affects around 1 in every 30,000 people worldwide. It's a hereditary condition, so can be passed from mother or father, down generations.  To find out more about this disease, I firstly met Richard Price, whose Heather started to exhibit symptoms 8 years ago.

Richard -   She started off with not being able to handle stress, even the smallest of the issues can make her quite upset.  Also, in terms of depression, she suffered from that a little as well.  My wife Heather is now in residential care.  She has what has turned out to be a very aggressive form of Huntington's that has affected not only her cognitive side and mobility, but also her mental state.  So, from that perspective, it has changed quite a lot.  She went into residential care about 2 years ago.  But just in the last 6 months, she's been declining in terms of her mental state.  It was really just trying to get treatments.  So, we're trialling new treatments to try and make her just more comfortable and less upset, and less unsettled than she currently is.  Where she currently resides there as - between 4 and 6 people with Huntington's and they all are so different.  You've got one person that you just wouldn't realise.  In fact, the GP probably won't realise that they have HD.  You've got other people that have the movement issues and you've got people with the emotional and the cognitive issues.  Unfortunately, Heather has had all three.  Yeah, it's been real tough.  Of course, Heather, having watched her mother go through what she's going through, it's been really quite tough on her.  

She's 43 now.  She was tested when she was 18.  At that stage, they'd only just discovered how to actually discover the gene and test for it.  Heather is a very positive and proactive person, so she wanted to know whether she was going to have the symptoms later on in life.  So, it was quite tough and she got through it.  In fact, that helped her knowing rather than not knowing.

Hannah -   Did she ever mention that as a result of having this test and knowing that she was going to develop Huntington's down the line, do you think she led her life a little bit differently because of that?

Richard -   Differently.  In fact, that was her purpose, everything from deciding to get a diploma rather than a degree, rather than going to a university and really just getting into the workforce and really just building up a nest egg for when the symptoms really started to appear. She was able to manage that, understand that and then make some decisions around it.  So, she always had planned on travelling and for a Canadian from the East Coast, that's not as common as we have in New Zealand.  She sold the house and went travelling when I met up with her in London.

Hannah -   Do you have children with Heather?

Richard -   No, that was another sort of decision that she made quite early on because it seems her family may be more prone to passing it down the line.  Her brother has it as well.  He does have a son.  So, yeah, I mean, Heather had a lot of time to sort of process and accept that.  We're both at the same mind, so we had dogs instead of children.

Hannah -   Thanks to Richard Price who's wife Heather has Huntington's disease.