Tony Edwards

“I noticed a problem with my left hand, it started to develop a slight shake and I was losing control of my grip. I knew what it was straight away, I had Motor Neurone Disease.”

Alt text Tony started working at LOROS Hospice in 2008, where he worked as Facilities Officer. For eight years, he worked in an organisation that supports and cares for people with terminal illnesses, including MND.

While he was working there, five years in, Tony was diagnosed with MND himself.

“It didn’t really sink in but it didn’t really come as a shock either,” said 60-year-old Tony, of Narborough.

“I didn’t have any questions to ask, I knew what was to come.”

In a weird way, Tony said it made things easier for him, working at LOROS. He admits he likes to know what’s coming and working at LOROS meant he already knew such a great deal about having MND.

“It was comforting to know first-hand what support I could get from LOROS,” said Tony, who has three children, Katie, 30, Sophie, 29 and Andrew, 27. His wife, Viv helps care for him at home.

It was his left hand that went first. To begin with it affected his upper body only but after around 18 months, his legs started to struggle. Within four weeks, Tony said he went from walking to not walking at all and by September 2014, he had become a full-time wheelchair user. Now, Tony has lost almost all movement in his arms and legs, which means he needs full-time assistance.

“The first question I asked myself and I’m sure all MND patients ask themselves, is why me?” he said.

Shortly after being diagnosed, Tony got talking to a fellow MND patient in the LOROS social area.

“He stopped me and asked me if I wanted to talk about things, so we did. After talking, he told me that in the five years since he had been diagnosed he had never talked to another MND patient and that is where the idea behind the support group came from.”

Tony launched a monthly MND support group, which was held in the day therapy unit every month at the same time as the Hospice’s MND Clinic. Although there are MND support groups out there already, the pair found that they were more for carers.

“For the first three months, there was only us two and we had around 20 cakes to eat between us,” added Tony.

“Gradually, people started coming. Some came and came again; others came once but didn’t come back. Now we have around eight regulars.”

Tony had to give up working at the Hospice early this year but until then, he continued to take on as many tasks as he could, as well as supporting fellow patients around the Hospice. “The thing is, MND affects people in different ways but we should all talk about it,” he said. “Why shouldn’t we talk about it?

“So many people are guilty of saying ‘I’m OK’ when asked how they feel, but really they’re not OK. I want people to talk about what’s going on, I think it’s important for people to share their feelings.

“I believe talking about it really does help; it’s therapeutic. There are only around 90 MND sufferers in Leicestershire and Rutland and we need to support each other.

“We give each other tips and advice. We talk about restaurants and holidays. We talk about how to deal with having MND. And of course, we eat cakes and drink tea.”

Although he no longer works at LOROS, Tony still uses the day therapy unit as a patient at the Hospice.

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“I have to admit, it was strange going from being a member of staff to a patient,” he said. “But I still feel like a member of the LOROS team and I find comfort in knowing that my family is part of the LOROS team, I know they will be here for Viv and the kids when they need to be.

In his usual optimistic style, Tony tries to see the positives to having MND.

“People often say to me, how are you still smiling? Well, I’m a great believer in positivity.

“I’m not in real pain. And I don’t have to have chemotherapy or radiotherapy, like people who have cancer or some of the other terminal illnesses.

“And of course, I’ve been able to grow my own fingernails now because I can’t bite them and I don’t need to buy shoes anymore because all I wear is slippers.

“The thing is, there is always someone worse off than you.”

As for the future, Tony says he takes every day as it comes.

“The problem with this disease is you don’t know what course it is going to take. There is no point in planning tomorrow because you don’t know what tomorrow will bring.

“It’s a frightening disease and I’m scared about how I’m going to die, but between now and then, I’m just living every day like it’s my last.”

Tony died in April this year, however, his wife Viv wanted us to share his story to continue raising awareness of both MND and the work LOROS does.