‘I love him to bits and will nurse him to his last breath’: how this couple are coping with Huntington’s disease

THESE heartwarming photos show a couple’s true love for each other despite the devastating disease that has robbed them of the ability to communicate.

Former nurse June Brown provides intimate care around the clock for her husband William who is now in the end stages of the genetic condition Huntington’s disease which he has battled for 22 years.

The incurable illness has robbed him of the ability to walk, talk and live independently.

But despite their difficulties, the family from Hurn are determined to raise awareness of Huntington’s disease in the community and have launched a not-for-profit organisation to help others – and are even developing a life-changing app for those who have lost the ability to talk.

June said: “Huntington’s is very brutal – a horrific disease to be inflicted with but it is often unspoken about and we want this to change.

“I love my husband to bits. I absolutely adore him. He means the world to me and I will nurse him until his last breath but we have been through terrible times and I don’t want anyone to suffer alone.”

The couple were first given an insight into the disease when June nursed her father-in-law for ten years before he lost his battle with the disease.

Devastatingly William was diagnosed with the genetic illness which attacks brain cells when he was 45. The disease causes symptoms including mood swings, personality changes, memory problems and loss of muscle control.

“We were devastated. I was in love with a man who I knew had an incurable disease. We had just bought a property together. We had everything to look forward to.

“He told me he understood if I wanted to walk away from the relationship but I was too heavily involved.”

June, 63, describes how within years her husband’s behaviour became at times unrecognisable.

She explained: “He’s had all the symptoms. It affects a person’s ability to control emotional feelings so they can’t distinguish when they are angry, when they are sad, when they are confused. All those emotions become jumbled up and they become frustrated in themselves. The frustration turns to anger and that can turn to violence and psychotic behaviour. I went through times having black eyes, he’d smash the house up, tell me he’d hate me, become very manic but then he would look at me and say something happens inside. It’s a horrendous disease to control. People were inclined, because with Huntington’s people have funny movements, to think that he was drunk so we’d get stares.”

The family moved to Scotland where William wanted to spend his final years but they returned back to Christchurch after June had an accident when she fell 45ft over a mountain on a sledge and suffered multiple broken bones.

June, whose 32-year career was in the NHS, said: “It has been a long journey.

“Today William can’t talk, he can’t swallow properly, he’s fed intravenously through his abdomen but he’s fully aware of what’s going on around him.

“I love him and I will do whatever it takes. I feel we are together for a reason and I am made to look after him.”

But June, who has given talks to health and social care workers about the realities of living with the disease, knows some families need extra help and she wants to provide an informal support network to anyone locally affected by the disease as well as fundraise to support families struggling with everyday needs.

The couple’s son has also come up with a unique app called ‘Tap to Talk’ so his dad could still communicate despite losing his voice six years ago.

The app works by the user tapping common phrases, feelings or words and is free to download for anyone affected by speech problems.

However the app is only currently available on Android devices and the family now want to fundraise or speak to anyone who can help them make it useable on Apple devices.

June said: “He wanted to create it to help his dad who he calls the bravest man he knows because though his dad couldn’t talk, he could tap.

“He says it will always be free to anyone who needs it.

“We have struggled and I don’t want to see others go through what I went through. I feel I have got a lot to offer my community in my retirement.”

Source: http://www.bournemouthecho.co.uk/News/15583902.__39_I_love_him_to_bits_and_will_nurse_him_to_his_last_breath__39___how_this_couple_are_coping_with_Huntington__39_s_disease/

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