A Real Life Story of Support, Sandy Patience

Sandy has Huntington’s Disease, an inherited degenerative brain disease. He has experienced multiple family tragedies, sadly losing his sister and mother to the disease and his brother to cancer.

The disease causes a gradual loss of control over physical movement, emotions, and thinking. Sufferers experience uncertainty, anxiety and low mood which can deeply affect relationships and daily life. Eventually they can lose speech and mobility, often deteriorating significantly over a short period of time.

Sandy has been supported by our Railway Mission Chaplain, Dereck Grant, over recent years. Over this time, they have also developed a deep friendship.

Sandy spoke to us about the support that Dereck has provided and what it has meant to him. The disease has an incredibly high suicide rate and Sandy says that without his own strength, the love of his wife Laura, his faith and the support of Dereck, he would not be here.

He says that the disease robbed him of a normal childhood, with his time instead being spent visiting relatives in hospital or care homes affected by the disease. It has been cruel and difficult to watch those he loves suffering with a disease for which there is no cure and with little support available for them. It was made even more challenging knowing the genetic risk and that he could be watching his own future.

Sandy and Dereck have both worked on the railways for a long time and Sandy was aware of Dereck’s chaplaincy role before he needed support himself. He explains how Dereck would visit everyone along the line, including the more remote signal boxes, always being there and making time for everyone, describing him as “A diamond within the organisation”.

Sandy received his own diagnosis of Huntington’s Disease in 2017 and over the subsequent years, Dereck has been there to support Sandy in many ways. This includes in person chats and always being there at the end of a message when needed. Dereck even used to visit Sandy’s sister in the care home, particularly important when he was working 12 hour shifts as a signaller. It meant a lot knowing that someone was taking time to be there for his sister at times when he couldn’t. Dereck also led the funeral services for the members of his family and Sandy praises the “incredible effort he puts into everything he does for others”.

Sandy became a Born Again Christian in 2013 and his faith gives him strength - although he says that Dereck has given him support that isn’t always there within the church community. There is generally a lack of understanding in both Christian and non-Christian communities about Huntington’s Disease and its impact on the body, daily life and relationships. He explains that Dereck listens and understands and that his openness with Sandy about his own experiences have really helped to build a bond of trust and friendship between them.

Sandy retired due to ill health in 2020 and Dereck moved further away in 2022. At that point it was uncertain whether Dereck could continue to support him due to both the physical distance and fact that Sandy was no longer working in the railways. However, they have remained in constant contact, with Dereck sending a weekly text offering positive encouragement and Sandy views Dereck now as like family. Sandy also appreciates the other side and what it is like being a chaplain. He knows that people sharing their struggles can also be challenging for those listening and he has also prayed for Dereck over the years to bring him strength and support.

Sandy says “We are all on the same journey in life, here to help people along the way.” He hopes that by sharing his story about his life with Huntington’s Disease and how he has found strength will help inspire others and help to reduce the high suicide rate amongst those suffering from the disease.

Dereck adds: “I’ve continued to support Sandy as best I can. I try and put myself in the shoes of someone else to help me to better understand that person. Sandy, just needs to know that he can contact me at any time, and I will get back to him. It is this kind of support knowing that he won’t be abandoned just because he has left the railway which makes a difference in his life.”