Elm Park mother speaks about disease that killed husband and now affects two sons

Maureen and late husband Victor (Image: Archant)

Maureen Smith, 80, cared for her late husband, Victor, for the last nine years of his life before he died of Huntington’s disease in 2010.

She is now faced with seeing two of her three sons deal with the same “awful” symptoms, and speaking after Huntington’s Disease Awareness Week (Jun 2-6), she said her third son has a “50/50” chance of developing the condition.

The inherited disease of the brain damages nerve cells and causes deterioration and gradual loss of functioning, affecting movement, thinking, judgement, awareness and behaviour.

David Smith, 60, was diagnosed aged 57, and is in the early stages of the disease. His younger brother, Gary, 57, is at a more advanced stage, and is cared for by his wife Carol.

“My husband suffered from it for 22 years,” said Maureen, of Wells Gardens, Elm Park. “At first it’s not too bad, but the last nine years were terrible, it was similar to Parkinson’s, and he lost control of his bowels. The caring was 24/7.”

Research carried out in 2012 found 12 in every 100,000 people suffer from the condition, while the number who have the Huntington’s gene and are not yet affected is twice that.

Early symptoms, such as personality changes and mood swings, are often overlooked or misdiagnosed.

David has moved to Spain with his wife, a country Maureen says is a lot more aware of the killer disease than the UK.

“It is little known, but there are an awful lot of people with it,” she said. “I used to call the ambulance and they would say ‘what is it, how do you get it?’ because they didn’t know.

She is now faced with seeing her children go through the same ordeal as her husband.

“It’s dreadful because I know what they are going to go through,” she said.

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