One of the Family Matters films made for this campaign is about our daughter Anna, who is 23 in a couple of months and has Juvenile Huntington’s disease. We have been delighted to take part in this campaign, and although we had to give it a lot of thought, we were led in the end by Anna, who felt she wanted to take part to help raise awareness.
It is important that we talk about Huntington’s, the lack of awareness and general understanding of the condition makes it much harder for families who are affected, and it can feel very isolating at times. For us, we care for Anna full time, and it does take a lot of work and a lot of teamwork too. We have another daughter, so it is important to get the balance right as much as we can in caring for them. Obviously, Anna’s needs mean we can be quite absorbed in daily life looking after her, but we consciously try and keep things as normal as we can, to maintain a normal family life as much as possible, for all our sakes.
It is a privilege to care for her of course, can be very rewarding but at times also incredibly hard and I think it is difficult for people outside the Huntington’s community to understand the mix of symptoms and the implications for daily life.
Anna’s movements are affected, and we are on constant alert to make sure she doesn’t fall or hurt herself. We are also getting to the point where walking any distance can be challenging. One day it will make sense to have a wheelchair as she loves getting out and about. It would make life easier and open up more opportunities, however we can’t rush into that, she clearly isn’t ready to accept a chair yet and we are not going to push her too hard. We feel it’s important to let her have a degree of control over her situation.
Not surprisingly, she also sometimes struggles with black moods, where she can be really quite angry and uncommunicative. These episodes can be extremely hard and upsetting to deal with, as she will stay in her room, refuse to talk, eat or drink properly. We worry terribly about maintaining her food intake and hydration when she is in these episodes as well as keeping her safe. These phases can last for up to three days. However, when she is going through a patch like that, we know it isn’t really her, but the Huntington’s, as she is a wonderful, funny, and kind young lady when she is herself.
Food presents its own problems at other times too. Because of her excessive movements making sure she is getting enough calories is something which is constantly on our mind, but at the same time we are also on high alert for choking, round the clock.
One of the things that is hardest for Anna to cope with is the neurological fatigue that she experiences. I also find this difficult to explain to other people as it is hard to differentiate from normal everyday tiredness in people’s minds. But when Anna experiences fatigue, it isn’t just a case of being ‘worn out’, it actually worsens all her other symptoms, and affects the fundamentals; standing, walking, eating. We know that when she is fatigued she is more in danger of hurting herself by falling over or choking. So, we constantly manage a daily timetable to lessen this symptom.
Caring for Anna is constant and a 24/7 activity. We love her and consider caring for her a privilege of course, but it is relentless. We are lucky that there are two of us, but do feel the pressure if one of us is out of action for any reason. We both left our jobs some time ago, ironically I was a neurological nurse. I do sometimes get a bit fed up when people ask how we are enjoying our retirement! It’s anything but! We are trying to look into respite options at the moment, but it is not straightforward, as Anna’s caring needs are unique. For someone to step into a caring position, there would need to be a high level of understanding of Huntington’s and of course complete trust.
Huntington’s was something we never expected to encounter and of course our life took a direction we didn’t see coming with Anna’s diagnosis in 2019. Anna’s situation has been, and continues to be, utterly devastating. But, we have met some incredible people, and feel that we have been welcomed into this tiny but strong community. I would strongly encourage anyone in our shoes to reach out, you have to ask for help, it’s not possible to do this on your own. Our specialist HD nurse is absolutely wonderful, and the Scottish Huntington’s Association have been marvellous, as have the various other support groups and young people’s groups that Anna is in touch with. We love that this campaign is for all of the UK and Ireland too, how wonderful that the wider community is coming together in this way, to help raise our voices without artificial barriers.
We are so proud of Anna, and hope that people will be able to see her wonderful and unique personality shining through the Huntington’s when they watch her film. And we really hope that everybody who comes across this campaign will help to spread the word, and help to increase awareness just a little bit, so that slowly but surely more and more people will hear about Huntington’s and make life that little bit easier for families coming to terms with it.
In solidarity with everyone else in this lovely supportive Huntington’s family.
Catriona, Anna’s Mum, Aberdeenshire