Families of those who have died from Motor Neuron Disease (MND) are holding a street stall this Friday on Wynyard Street in front of House 2 Home. Annemarie Young, who lost her late husband, Russell Breward, to MND, said more research is badly needed to end the suffering of those diagnosed and their families.
“There’s no treatment and no cure,” she said.
“When my husband was diagnosed that’s exactly what the doctor said to him. That was in year 2000, and although they’ve done a fair bit of research they’re really not any closer to finding out the cause.
“It is the cruellest of cruel diseases. First symptoms can include stumbling, difficulty holding objects and slurring of speech. The progression is rapid and it creates a high level of disability and consequent need for support: sufferers will need assistance with feeding, communication, mobility, toileting and breathing.
“Intellect and memory are usually not affected; nor are the senses of sight, hearing, taste, smell or sensation. Sufferers are trapped inside their bodies without being able to communicate. They are conscious of the seriousness of their condition, and that they are dependent on carers for every single aspect of their lives.”
Motor Neuron Disease causes the sufferer’s muscles to degenerate.
In a short amount of time the victim will be completely dependent on care, and the average lifespan between diagnosis and death is two to three years.
For Russell Breward, it took only seven weeks.
“I’d really never heard of it when my husband was diagnosed with it,” said Annemarie.
“I remember going back to my room at St Vincent’s Hospital and it just hit me…he won’t be here for my girls when they get married. He won’t be here for so many things. It was just horrific – but he was brave, he was very, very brave.
“He did die at home, he got his wish. The children were all there when he died. He must have known because he would normally sleep in a chair, all day and night he was in this chair, and on this night he said he wanted to go to bed.
“We took all his oxygen and all of that into the bedroom. We had a board that he could write on, and during the night he wrote down ‘Rest.’ I realised he meant the rest of the family, and they were all home because it was Father’s Day the day before. They came in, and he looked at each person – and that was the end of a strong, beautiful man.”
The street stall will feature a wood raffle and a Mother’s Day raffle, as well as having merchandise for sale with the blue cornflower – a symbol of hope – printed on it, and will include brooches, pens, cards, socks, and toy puppies.
Money raised will go towards the MND Association of NSW, which loans expensive equipment like wheelchairs, electric beds and hoists, and electronic communication aids, to sufferers free of charge. There were over 4000 loans last year alone.
Every day two Australians die from MND and two more are diagnosed.