How volunteers make a difference to Shropshire people facing cruel Motor Neurone Disease

"She said 'I want you to know, I'm aware what is going to happen, and when I tell you, I want to go to Dignitas, I don't want to reach its ultimate conclusion'," says Malcolm.

They are the words that no husband ever wants to hear, but Malcolm felt obliged to agree to his wife's request. Outwardly, Margaret still appeared to be in reasonably good health, although what had started as a twinge in her knee the year before was now seriously affecting her mobility.

Margaret, who was aged just 65, had been diagnosed with motor neurone disease. There are thought to be between 30 and 40 people in Shropshire with this rare and progressive illness, that affects the nerves in the brain and spinal column that control the muscles. There is no known cure and the condition is inevitably fatal, although there are treatments which can slow the process down.

But just as Margaret and Malcolm were coming to terms with the devastating diagnosis, a surprise parcel was delivered to her door.

It was a stool for her to sit on in the shower. Malcolm was initially slightly curious, having not ordered any such product. But over the weeks that followed, there would be more and more deliveries. Jackie Dawnford-May of the Motor Neurone Disease Association had anticipated what Margaret would need to help her through the coming months, and arranged for the relevant equipment to be delivered to the door.

Margaret died from natural causes the following year, but Malcolm was so moved by the support she received from the association that he dedicated the next decade to supporting its work.

Malcolm, who is treasurer of Shropshire MND Association, says the branch is urgently seeking new volunteers to ensure that it is able to provide the same kind of support that Margaret received.

"Covid meant we weren't able to do much at all really, and now we really need some new blood to help us with our fundraising activities," says the 77-year-old, who lives in Alveley, between Bridgnorth and Kidderminster.

The branch is primarily about raising funds to provide the support that makes life easier for people with the disease, and volunteers are being sought to help people with fundraising events.

"We will have a stall in the middle of Shrewsbury on August 6 this year, and we need people to help us with that," says Malcolm. "We're also having a Christmas card sale, and we need people to help with that."

Malcolm recalls how, as Margaret began to lose her power of speech, she was given a device which could speak on her behalf, as she entered the words on a keyboard. The branch funds home adaptations, such as ramps, to make it easier for patients to get around, and has even funded holidays for some sufferers.

"We had a lady in our village, she was only in her early 30s, she desperately wanted to take her young children to Legoland, so we wrote them a cheque for that," he says.

"There was another lady from Oswestry, who went to the support group at the Hamar Centre in Shrewsbury. She didn't drive, so we paid for the taxi for her."

Malcolm adds that in addition to its fundraising activities, the charity also offers emotional and practical support, and provides links with other services. It holds regular meetings in both Shrewsbury and Telford, works with health and social care providers to improve services for people with the condition, and funds research into the treatment of the disease.

But he says the charity is primarily looking for people who can help raise funds.

The story of Margaret, who first suspected she may have had the condition after reading a newspaper article about the wife of actor Joss Ackland, is fairly typical of how the disease usually progresses.

Early symptoms can include weakness in your ankle or leg, making you more likely to trip or finding it harder to climb stairs. Slurred speech, which may develop into difficulty swallowing, and a weak grip making it hard to open jars or do up buttons, are also symptoms, along with muscle cramps, twitches and weight loss as muscles waste away. In some cases people might find it difficult to control tears or laughter.

Malcolm, a retired advertising sales rep, says after Margaret was diagnosed, he was told to take her on a cruise, a piece of advice he is glad to pass on to anyone who finds themselves in a similar situation if they can afford it.

“We went in June 2010, she was in a wheelchair by that time, as much as was possible she loved it, and the care and attention shown by all the cruise line staff was incredible,” he says.

*Anybody able to lend their time to helping Shropshire Motor Neurone Disease Association can contact Malcolm Love on 01746 780547 or 07890 068135.