‘I’m not ready’ – the life-changing impact of being diagnosed with MND

Nation Cymru staff

This Hospice Care Week, Ronville Lapping, who was diagnosed with Motor Neurone Disease in 2022, reflects on what it means to have the support of Hospice of the Valleys

Ron and Emma enjoy a gossip. Today, they’re chatting about the fact that Emma has shown up in a different car. Ron often looks out the window from his bed, waiting for his visitors. “He doesn’t miss a trick,” Emma jokes.

Emma is a Hospice of the Valleys nurse, and her support has been invaluable to Ron and his loved ones since his diagnosis.

In 2021, Ron was enjoying his retirement, taking weekend trips away with his dog to his caravan in Aberystwyth. At first, he didn’t pay much attention to a newfound clumsiness.

“I had a weakness in my hands; I was dropping a lot of stuff. The doctor said it was carpal tunnel syndrome,” described the 64-year-old former bus driver from Tredegar.

“And then I started falling about. My daughter said, ‘You’ve got to come home from the caravan, you can’t be up there on your own’. Over the next few months, it got a lot worse, my legs felt very heavy, like concrete, it was a job to walk.”

In the summer of 2022, Ron went back to his GP, who referred him to neurology. Three months later, he was given the life-changing diagnosis of Motor Neurone Disease.

“That is really quick for an MND diagnosis, it often takes much longer,” explained hospice nurse Emma Priest, who has supported Ron through Hospice of the Valleys over the last few years.

Ron recalled: “I remember that first phone call with Emma, I said, ‘I’m not ready for that yet.’ I thought that meant it was the end.”

Ron had a pre-conceived notion that hospice care just meant end of life; he wasn’t aware that Hospice of the Valleys was also there to support him to live well through his diagnosis.

After some convincing from his ex-wife, Ron called Emma back.

Reflecting, Ron said: “It would have been the sorriest day of my life,” if he had not changed his mind the week later.

“I knew about MND from people on the TV, all these sport people who have had it. When I heard the doctor say, ‘You’ve got MND’, my anxiety went through the roof. I was reading about it, looking it up online, what would happen to me. I just thought, ‘Why me?’”

The dad of two was diagnosed with progressive muscular atrophy, a rarer type of MND that affects the lower motor neurones.

For the first year following his diagnosis, Ron was able to continue relatively normally. However, around a year later, he lost his driving licence, his weight dropped to just 8st, and doctors advised he had just 10 days to live.

During this period, Hospice of the Valleys supported Ron with night sitters. That support continued over the next two years before a complex care plan was introduced by the NHS.

Ron said the night sitters played a massive role in improving his wellbeing and overall health.

“I truly believe if it wasn’t for the Hospice of the Valleys, I wouldn’t be here today. It made such a difference, knowing someone was there.”

Ron’s condition continues to progress, and Emma continues to support him as his needs have changed, providing emotional and practical support and helping to ensure he has the right medication and equipment to live well.

Hospice of the Valleys has also arranged for their complementary therapist to visit Ron, who provides Reiki. He described the sessions as incredibly relaxing, helping to ease the anxiety he experiences.

Emma added: “People think we are for end of life, but we are not just for that, we support people through so much more than that. I’ve helped Ron put an advanced care plan in place; we’ve helped ensure that adjustments have been made to his home so he can continue to live here.

“At one point Ron was really ill and struggling with a breathing mask he had been given. He felt claustrophobic with it and struggled to wear it. I was able to ensure that his respiratory team got the right mask for him, and he is doing so much better now.

“It’s been lovely to build a relationship with Ron, we love to have a gossip. It’s great to see him doing so well.”

Ron now enjoys days out with his daughter and son and remains determined to stay positive.

“I’m a very positive person,” Ron added. “I don’t dwell on it, I think if you dwell on things, it makes it worse. I try to put it to the back of my mind.”

Ron wants other people across Blaenau Gwent who, like he first did, might think hospice care isn’t for them, to consider whether they could benefit from the support that Hospice of the Valleys offers.

Find out more about Hospice of the Valleys and the services the hospice has to offer here.

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