‘I sometimes think I am lucky I didn’t develop motor neuron disease in my 30s’

Noel Kavanagh describes the completion of his personal memoirs as a race against time. The 75-year-old retired vet, developer of animal vaccines and keen sportsman from Oldcastle, Co Meath, was diagnosed with motor neuron disease, or MND, in December 2018.

Over the last two and half years, Kavanagh dedicated what time he has left to compile a written account of his working, sporting and family life for close friends and extended family.

And while his book, From Living the Dream to Living with MND – a race against time (Onstream Publications) will mainly be of interest to those who know him, it does contain valuable insights and tips for anyone facing this progressive neurological disease.

In the forward to his book, Kavanagh clearly describes how within nine months of his diagnosis, his voice and ability to swallow progressively weakened.

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“Slowly but surely, I was denied my ability to enjoy delicious food that I had previously taken for granted . . . From September 2020, I was consuming about 85 per cent of my nutrients through a feeding tube and from December 2020, 100 per cent of them,” he writes.

He advises anyone newly diagnosed with MND to investigate the possibility of voice banking with their speech and language therapist.

“You must bank your voice while it is still strong,” advises Kavanagh, who started banking his voice in both English and French within months of his diagnosis. And, since then, he has used an iPhone and iPad to communicate.

He also learned how to use a Grid Pad, which allowed him to use head mouse or eye gaze technology as a means of communication. And, he recommends those with MND to set up WhatsApp and email groups to keep in contact with friends and family.

MND is a relatively rare progressive neurological condition which attacks the motor neurons (nerves) in the brain and spinal cord. This results in gradual weakening and wasting away of muscles which impacts on everything from walking and talking to eating, drinking and breathing.

Stephen Hawking, the renowned physicist who died of MND in 2018, extended his life by using a ventilator to do his breathing for him.

Shortened lifespan

The majority of people diagnosed with MND have a shortened lifespan which led to its description as the 1,000-day disease as most people die within 1,000 days of diagnosis. However, that said, the rate of progression varies greatly from one person to another and there are rare cases in which the disease doesn’t progress at all and other cases where the person dies within six months of diagnosis.

Prof Orla Hardiman, professor of neurology at Trinity College Dublin and consultant neurologist at Beaumont Hospital, says she is optimistic that new drugs will change the lives of those diagnosed with the disease in the near future.

“What we know now is that MND is more than one disease and the genetic and environmental risks are different for different groups of people. So, for example, we know that people who are elite athletes probably have a slightly higher rate of MND.

“We think that’s probably not so much to do with the sport they are playing but because they are really, really good at sport. The genetic factors that make them good at sport probably put them more at risk of MND.”

Noel got a death sentence and I got a life sentence

Prof Hardiman and her team of researchers at Trinity College Dublin are part of TRICALS, the largest European research initiative to find a cure for MND, also known as amyotrophic lateral sclerosis. The aim of the initiative is to co-ordinate research projects for new therapies so that every MND patient qualifies for participation in a clinical trial.

“We can already predict how rapidly or slowly the condition will progress in different groups of people and our recent work has allowed us to group people with MND by their brain activity patterns,” adds Prof Haridman.

As well as new gene-based treatments for some forms of MND, there are 40-50 drugs currently being tested and eight new trials are due to start in 2021. There are currently more than 400 people living with MND in Ireland.

Noel Kavanagh identified the first symptoms of his MND as hoarseness, accompanied by reflux and sinusitis in August 2018.

“I developed muscle twitching in both shoulders. And, aware of the symptoms of MND, I was immediately concerned that I was developing it,” he writes.

Early investigations failed to identify pathological changes but, within a few months, a diagnosis of MND was confirmed by Professor Hardiman.

Caroline Kavanagh, Noel's wife of 48 years, says Noel's diagnosis of MND has transformed their lives.

“Noel got a death sentence and I got a life sentence. It’s a soul destroying disease. You have to be extremely strong and resilient. I live predominantly in silence now. I sleep and I eat alone,” she tells The Irish Times.

Positive people

During the Covid-19 pandemic, Caroline did much of the caring for her husband.

“I cared for my father when he had three strokes. I survived cancer 11 years ago and lost my mother and sister to cancer so I’ve had a lot of experience of illness.

“Noel was always very conscious of diet and fitness but he had to give up using his home gym. At this stage his arms are very weak, he has no swallow, no speech and has a constant problem with saliva,” she explains.

Speaking of their life together, Caroline adds: “We worked together in Noel’s business. We had hobbies together. We are very positive people and very oriented to family and friends but the most painful thing was watching him finishing his book – typing with one finger.”

Having completed the challenge of writing his memoirs (with a particular focus on memorable sailing trips in the Mediterranean Sea), Kavanagh says his current target is to keep his life as normal as possible for as long as possible.

“I want to maintain an interest in my friends and family, to avoid focusing inwards on myself. I try not to moan . . . If I moan, my friends will grow tired of me,” he writes.

“I’ve tried with some success to train my mind to switch to happy and positive thoughts at times when my mind is temporarily consumed by despair. I sometimes think that I am lucky that I didn’t develop MND in my 30s, 40 years ago.”