Huntington’s sufferer determined to live life
- Credit: Archant
LIVING with Huntington’s disease, Adam Gates is celebrating his 25th birthday today (Thursday, September 12) and is determined to make the most of life.
Adam lives at Sue Ryder’s Stagenhoe in St Paul’s Walden - a residential care home for people living with complex neurological conditions such as Huntington’s disease, which is a genetic disorder that affects muscle coordination and leads to cognitive degeneration and psychiatric problems.
Adam’s mum and aunt lived with the disease until they passed away in 2009, and Adam was diagnosed with the condition at the age of 20.
He said: “There’s no point in worrying, you’ve just got to get on with life.”
Since Adam was just four years old he has been visiting Stagenhoe to see his mum and aunt, who were cared for at the centre. Four years ago, he chose to move into Stagenhoe himself.
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He has settled in well, making friends with other residents and the carers, and his grandmother and cousin visit him regularly.
Adam said: “Stagenhoe feels like home. I’ve got friends here. Also, my other friends come and visit and we watch TV.
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“On a day-to-day basis, I like doing the activities and caring for the animals here. I like going on day trips, though it can be difficult getting about in a wheelchair. I hope to go to the Tower of London soon. I used to like visiting castles.”
Adam’s condition affects him physically. He is unstable on his feet and wears head protection in case he falls, but he can walk short distances unaided.
His speech is slurred and he prefers to communicate through texting on his mobile phone.
His muscles involuntarily spasm, causing his legs and hands to shake. Mentally though, Adam is strong, and he has a positive outlook despite living with a progressive and debilitating condition.
Asked about what it’s like living with Huntington’s disease, Adam said: “I’m coping alright.”
He is like any other young person. He likes listening to music, socialising with friends, watching TV, and going on holiday and day trips.
A favourite hobby of Adam’s is horse riding - a passion his mum also had. “It makes me feel good in myself that I can do this activity with the condition that I have,” he said. Adam goes horse riding once a week and has been awarded a number of rosettes.
As for the future, Adam said: “I am keen to continue horse riding for as long as I can, and go on holidays and see all my friends.”
Sue Watson, a carer at Stagenhoe, described Adam as happy and contented, with a sunny nature. She said he has a great sense of humour, and is cheeky and caring.
“Adam has a great outlook on life, considering his condition, and he is a great inspiration to me,” she said.