Three words that changed my life

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Philanthropist and Alzheimer’s Advocate Robyn Hilton.

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Dealing with a new diagnosis isn’t easy whatever the condition, but when it’s incurable, it’s even harder to face.

“Peter has dementia.” Three words –relatively innocuous by themselves, but which combined would change our lives completely.

My husband Peter was diagnosed with Alzheimer’s disease in February 2000, at the age of 66. He was mentally and physically active, a man for whom the life of the mind was highly valued. He loved classical music, travelling and reading, and had just retired from a long and distinguished career in the law.

He was mentally and physically active, a man for whom the life of the mind was highly valued. He loved classical music, travelling and reading, and had just retired from a long and distinguished career in the law.

My and Peter’s experience of dementia was very much like feeling our way in a fog. I have no doubt that our story is similar, but also distinct from, hundreds of thousands of others – dementia is now Australia’s second-biggest killer. It directly affects more than 400,000 Australians nationally, and countless more friends, relatives and carers.

Each person’s case is unique, depending on the type – dementia includes Alzheimer’s disease, vascular dementia and frontotemporal dementia – the personality of the sufferer, and which part of the brain is primarily affected.

Sometime after the initial shock of Peter’s diagnosis, I started to feel helpless. Unlike other diseases, where advancements in treatment drugs and improved surgical techniques have led to better rates of survival, there’s no beating dementia. There’s no known cure, no timetable for the inevitable cognitive decline, and still no medical treatment that can slow or reverse the progression of the disease.

But I’ve come to recognise that it doesn’t mean there’s no hope. I take solace in the fact that there are teams of dedicated scientists out there who are committed to finding treatments for dementia, including researchers at UQ’s Queensland Brain Institute, which in 2013 launched Australia’s first dedicated dementia research centre.

In 2015, researchers there discovered that using ultrasound reversed symptoms of Alzheimer’s in animal models. This year they have built upon that breakthrough, finding that ultrasound can improve the delivery to the brain of an Alzheimer’s antibody, and they hope to have a device ready for clinical trials within years.

It’s developments like these that give hope to me and many other people affected by dementia.

Lately, I’ve been thinking about the future. By 2050, some 1.1 million people will be living with dementia. As updated statistics come in each year, the numbers have steadily risen, and I can only imagine the future costs both to the government as well as the individual burden on families.Peter died in June 2011 from complications of his Alzheimer’s.

While research wasn’t able to help him, I have no doubt that a treatment is within reach, and I will do all that I can to see that goal achieved.

Each year on September 21 to coincide with World Alzheimer’s Day, QBI hosts the Hand Heart Pocket Gala, in partnership with Alzheimer’s Australia, to raise more funds for their vital research.

Inspired by Peter’s love of classical music, the event includes opera and piano performances. It’s a wonderful evening of music and discussion, a cause I’m committed to, and one I know Peter would have loved to support.

Robyn Hilton is a Philanthropist and Alzheimer’s Advocate

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