Lauren

He struggles emotionally. His moods can be very erratic and he can become easily confused in situations.

Changes in behaviour and communication are often described as the hidden symptom. They are not the ones that the doctors notice or test for, but they are the ones that can really impact a person’s family and loved ones.

Ian was diagnosed with Huntington’s disease in 2022 after noticing symptoms. He knew his risk from a young age and has since lost his mum, grandad and uncle to the disease.

Ian and Lauren have been together for 13 years and married for seven. Lauren is a full-time carer for Ian and has had to reduce her working hours to help with his day to day living. He can no longer work due to poor balance and movements.

At first it was very overwhelming and a lot to take in and adjust to. Sometimes you can feel like your living with a completely different person as it can affect them in different ways on a daily basis. 

Adapting communication

Ian struggles to process information, especially letters and emails. He also struggles with his speech and getting his words out. This can make communication challenging.

The main thing that helps us, is learning to communicate in a different way. I have to try and be really clear when talking to Ian especially if it involves information that he needs to take in.

Another way to manage communication is for Lauren to read things to him and relay the information slowly and clearly so he understands. She will also speak on his behalf during phone calls, as it can cause him anxiety when he tries to follow a phone conversation.

My advice is to try and be as patient and cool headed as possible, which can be very difficult when living in that situation. It helps to talk slowly as well. And trying to remain really open with each other. 

How the Huntington’s Disease Association have supported Ian and Lauren

"We would be lost without Huntington’s Disease Association. They have helped us since the very beginning of our journey. They have supported both me and Ian emotionally and listened to us when it feels like there is no one to listen to us. I also attended a day just for me where I got to meet lots of other people in my position which was a brilliant experience.

Theresa Westhead is our local Specialist Huntington’s Disease Adviser. She went to Ian’s workplace to show them how they could support him at work, well before he finished. She is a superhero in our eyes. We also received help in terms of applying for benefits. With Ian finishing work it was a very scary time, but Huntington’s Disease Association was a lifeline for us."