Olly’s very personal quest to help others hear their parents’ voice

Olly Clabburn as a child with his dad who died of Motor Neurone Disease

Olly Clabburn as a child with his dad who died of Motor Neurone Disease

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Repeatedly pressing play on the telephone answering machine, a young Olly Clabburn listened avidly to the crackly message of his father’s voice.

Olly, now 26, explains: “In the mid-nineties, my family joined the technology revolution with an answering machine.

Olly Clayburn who is doing a PhD at Edge Hill University and researching Motor Neurone Disease which his dad and other family members had

Olly Clayburn who is doing a PhD at Edge Hill University and researching Motor Neurone Disease which his dad and other family members had

“Many years later, this crackly 10-second message is the only sound I have of my dad’s voice.”

Olly, who lives in Ormskirk, is a PhD student at Edge Hill University and has a specific research interest in young people who help care for family members with Motor Neurone Disease (MND), a rare condition that progressively damages parts of the nervous system.

This leads to muscle weakness, often with visible wasting.

MND affects how sufferers walk, talk, eat, drink and breathe. There is currently no cure.

Olly Clabburn as a child with his dad who died of Motor Neurone Disease

Olly Clabburn as a child with his dad who died of Motor Neurone Disease

Olly’s nan had MND and passed away when he was three, and her sister also had it, while Olly’s dad Michael was diagnosed with the condition at the age of 44.

Olly recalls: “Shortly after my dad recorded that answering machine message, he was diagnosed with MND – a terminal neurological disease which leads to muscle weakness and wasting.

“Within three years, he was unable to speak, walk, eat and needed full-time care.

“I was only seven when my dad was diagnosed with MND and he lost his voice very early on, when I was about eight or nine.

“As I was so young, I did not have any real recollections of his voice apart from that answering machine message.

“I remember coming home from school and listening to that message time and again.

“It helped me remember that my dad did have a voice.”

Having been through the MND journey with his family, Olly decided he wanted to do something to help and support children and young people affected when someone close to them has MND.

MND is often referred to as a “family disease”, meaning a whole household can be affected when an individual is diagnosed.

Olly, whose dad passed away in 2004, realised little research had been done investigating the experiences and needs of children and young people who provide care or are bereaved due to MND.

Olly is now researching creating digital legacies specifically for children of those with MND.

This involves people living with the disease recording a selection of videos for children in their family featuring memories, accomplishments and personal messages.

These videos can then be copied to DVD or a digital source, so the young person can use it for emotional support.

This can then be watched whenever the child wishes to reconnect with the family member if they have lost the ability to speak or have passed away.

Olly explains: “The idea is that people with MND record videos about their life, their memories and their achievements and record messages specifically for their children and young people in their family.

“In the same way as a child may look through a photo album, they can watch and listen to this disc whenever they feel they want to re-connect with the person. MND was a big thing in my family and I would love to see a cure found for it as it not only affects the person who has it but their family and loved ones too.

“I want to encourage those who have been diagnosed with MND to record and create a digital legacy.”

Olly is a graduate teaching assistant working in the Faculty of Health and Social Care at Edge Hill University.

His research investigates the use of creating a digital legacy for people with MND.

Olly is looking for research participants and wants to speak to those who have MND and are interested in recording a digital legacy for a child or young person such as a son, daughter, grandchild, niece or nephew.

He is also looking to speak to young people between the ages of 11 and 24 who are currently involved in caring for a family member with MND and use a pre-recorded digital legacy as a means of support or are interested in doing so.

As well as this, Olly wants to talk to young people, aged between 11 and 24, who have lost a family member to MND and use a pre-recorded digital legacy to support them as they grieve.

l For more information about Olly’s research, or if you would like to be involved, contact him at clabburo@edgehill.ac.uk

FACTS

* The French neurologist Jean-Martin Charcot first described motor neurone disease (MND) in 1874. The term motor neurone disease describes a group of related diseases affecting the motor nerves or neurones in the brain and spinal cord, which pass messages to the muscles telling them what to do.

* MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones, leading to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

* The muscles first affected tend to be those in the hands, feet and mouth.

* MND does not usually affect the senses (sight, sound, touch) or the bladder and bowel. Some people may experience changes in thinking and behaviour, often referred to as cognitive impairment, but only a few will experience severe cognitive change.

* The effects of MND can vary enormously from person to person, from the presenting symptoms and the rate and pattern of the disease progression to the length of survival time after diagnosis.

* MND can be extremely difficult to diagnose as the early symptoms can be quite slight.

* Six people per day are diagnosed with MND in the UK - it affects up to 5,000 adults in the UK at any one time

* MND kills six people per day in the UK, just under 2,200 per year.

* For more information, visit www.mndassociation.org