Radio Scope Mind MattersRTÉ Radio 1, Tuesday March 6th, 8.30pm
A new series of Mind Matters, presented once again by Ella McSweeney, returned last Tuesday with a programme on Huntington's disease (HD). The fatal genetic condition, that affects about 400 people in Ireland, causes cells in the brain to die, resulting in a brain degeneration that makes normal day-to-day movements impossible, muscles to waste away, memory loss and often dementia.
The programme focused on Liam, a 49-year-old father of three, who 15 years ago started to take an inordinate amount of time to do simple things like changing his clothes and who developed an inability to do more than one thing at a time and a helplessness when it came to taking responsibility.
Looking back to those events in the 1990s, and recalling the frustration and rows that occurred at that time over these irregularities, his wife Catherine spoke of the guilt of not understanding or noticing the early symptoms of Liam's encounter with HD, a diagnosis that took a further seven years.
Causing progressive deterioration with varying symptoms that may include involuntary movements, speech impairment, and intellectual and emotional changes, HD, or Huntington's chorea, is an inherited disorder of the central nervous system passed from parent to child through a mutation in the normal gene.
A familial disease, each child of an HD parent has a 50-50 chance of inheriting the HD gene and symptoms appear loosely between the ages of 30 and 45.
Liam's daughter, Aoife, recalled the symptoms through a child's eyes when getting those all-important lifts to school, noticing her father's erratic driving that veered from one side of the road to the other.
Putting a non-medical definition to her father's plight, Aoife said "it's like Parkinson's, Alzheimer's and MS all rolled into one with the added bonus" that it's 50-50 hereditary.
And, hereditary it is.
Liam's mother was diagnosed with HD in 1996. She died soon after. And Aoife herself was diagnosed recently with the disease, on what her mother referred to as "the worst day of my life".
The programme also featured Liam who spoke of his love and ownership of motorbikes and the dawning of a disease that took his co-ordination.
He described the unsteadiness on his feet and his slurred speech that, if you didn't know him, you'd think he was drunk.
Featuring contributions from professors Patrick Morrison and Mike Conneally, Sarah Duke, Dr Anthony Hannon and Mary from Dublin, whose aunts and uncles were diagnosed as having Huntington's, the programme also investigated the history, ongoing experiments into the disease, possible cures, medical advances and Woody Guthrie's celebrity prognosis.
While upbeat and encouraging for most of this informative programme, Catherine concluded that "Huntington's can go after each and every one of my family and there is nothing I can do, expect sit back, watch, wait, hope and pray, that maybe some of them will escape. It's difficult, very difficult".