Posted on Jun 10 2022 by Bobbie Kelly
54 year old Darran has been interviewed by leading Neurorehabilitation magazine NR Times. Read on for his story of diagnosis, finding support and looking to the future.
My name is Darran and I am 54 years old. I am a qualified builder and electrical engineer by background. I was diagnosed with Huntington’s disease in 2016.
Receiving a diagnosis came as a shock and raised a number of questions for me, including what this meant for my life, my aspirations and relationships. These answers were not forthcoming, which raised my anxieties.
I was in search of answers, and without signposting, did not know what to do or where to go.
I became quite hot headed and did not recognise where my behaviour was coming from, but there was an illness I could feel in me.
It was difficult to me to own these changes that myself and others were noticing. I started to isolate myself and push others away to shield them, and I was losing friendships because of it.
It was important for me to work out my past, plan for my future, and to find the right solution for me. I wanted to be living my life to its fullest and to do the best I could do each and every day.
Over the years, I have found it difficult to trust and put my faith in professionals. I felt misunderstood, and did not think I was getting the right support. I expected more from the system.
I could not fix myself, and felt I was crawling through the mud.
It was only when I came to St Andrew’s that things started to change for me. I began to open up a bit more. I was in good hands and that gave me a bit more hope.
It was a new start to something better. I realised that, in an unexpected turn of events, I had needed to be here all along.
Getting the foundations right is so important as a platform for growth.
The staff provide predictability and flexible structure. They have got to know me for who I am, which has improved my quality of life. I don’t have to think twice here. They understand Huntington’s disease and my needs, and help adapt to changes with me.
I can now think more clearly and have belief in myself and my future.