Living with Huntington's disease

Huntington's disease is hereditary. A single gene change that can be passed down generations from mother or father to their children to cause a myriad of symptoms varying widely from person to person. But with typical age of onset in middle age. Because a single gene is to blame, a genetic test for diagnosis is available which lets people know if they will get Huntington's in later life. To find out more, Hannah Critchlow spoke with Richard Price, whose wife, Heather, started to exhibit symptoms of Huntington's 8 years ago...

Richard - My wife Heather is now in residential care. She started off with not being able to handle stress, even the smallest of issues can make her quite upset. Also, in terms of depression, she suffered from that a little as well. She has what has turned out to be a very aggressive form of Huntington's that has affected not only her cognitive side and her 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 a treatment to try and make her just more comfortable and less upset, and unsettled, which she currently is.

Where she currently resides there are 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, but 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 - Definitely. In fact, that was her purpose. Everything from deciding to get a diploma rather than a degree, so rather than going to a university and really, just getting into the work force and really, just building up a nest egg. When the symptoms really started to appear, she was able to manage that, understand it, and then make some decisions around it. So, she always had planned on travelling. And for a Canadian from the east coast, it's not as common as we have in New Zealand. She sold her house and went travelling and 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 that her family may be more prone to passing it down the line. Her brother has it as well. He does have a son. Heather had a lot of time to sort of process and accept that and we're both at the same mind. So, we had dogs instead of children!