Malcolm's mission to help MND sufferers
It was reading an interview with the actor Joss Ackland in a Sunday magazine that made Margaret Love realise she had motor neurone disease.
Still in her early 60s, she was a well-known figure in the village of Alveley, near Bridgnorth.
“She never walked anywhere, she would always run,” says her husband Malcolm. But during the summer of 2008, she became aware of a twinge in the knee. At first she was not too concerned, but over the months that followed the condition became progressively worse, to the point where she was barely able to walk.
Just over two years later she died, a fortnight after her 66th birthday. Malcolm, who is now a fundraiser for the Shropshire branch of the MND Association, recalls how after months of inconclusive tests, Margaret believed she knew what her condition was in September 2009.
“Margaret was a big fan of Joss Ackland, and was reading an interview with him in a magazine,” says Malcolm. “It said that when his wife developed motor neurone disease, he accused her of being a secret drinker because that was how she appeared, often stumbling and with slurred speech. Margaret recognised her similar symptoms straight away.”
She shared her suspicions with her doctor, who was unconvinced, saying that in the whole of his medical career he had only seen one patient with MND.
Margaret was finally diagnosed with motor neurone disease by a private consultant and confirmed by electronic tests at Wolverhampton’s New Cross Hospital.
MND is progressive disease affecting the nerves in the brain and spinal column which control the muscles. As the condition worsens, the brain has less and less control over muscle movements, causing them to weaken, stiffen and waste. There is no known cure and the condition is inevitably fatal, although there are treatments which can slow the process down.
The story of Margaret, who worked as a switchboard operator until her 50s, 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.
Muscle cramps, twitches and weight loss as muscles waste away are also common, and in some cases people might find it difficult to control tears or laughter.
The NHS advises people displaying any of these symptoms to see their GP, and if you have a close relative who suffers from the condition it may be advisable to see your doctor as a precaution.
Professor Stephen Hawking raised the profile of the illness, famously living with MND for 55 years, after being given 24 months to live in 1963. But Jenny Everington, secretary of the MND Association Shropshire branch, says he was very much the exception to the rule.
“People rarely live more than two years,” she says. Jenny, who co-founded the Shropshire branch 32 years ago, says the condition is far more commonplace than people realise, with two new cases per 100,000 people diagnosed every year. And while Stephen Hawking’s experience was far from typical, she says he did a lot of good work in increasing people’s knowledge about the illness. “I think he did a lot to promote it, and the film The Theory of Everything made people a lot more aware,” she added.
Malcolm, who is 73 and a former advertising sales rep, says he was not even aware that the MND Association had a Shropshire branch until after Margaret’s death, and he says the work that it does is hugely beneficial.
The charity supports 36 people across Shropshire, distributing up to £30-40,000 every year providing vital equipment and support. “When Margaret was ill, I put in a stairlift,” says Malcolm. “I didn’t know about it at the time, but the Shropshire branch would have given me financial support towards the cost of installing the stairlift.”
Jenny, who became involved after her son’s godfather was diagnosed with MND, says the branch will help with financial support to enable people living with motor neurone disease to spend what could be one last holiday with their families. “We’ve given six holiday grants this year, worth £1,000 each, so that they can enjoy their last holiday,” she says.
“We also send all MND patients Marks & Spencer gift vouchers for £100 at Christmas.”
There are just over 5,000 people living with MND in the UK. While Stephen Hawking was diagnosed in his 20s, that is highly unusual. The disease most commonly manifests itself among people in their 60s and 70s, with men at slightly greater risk than women.
Malcolm, a retired advertising sales rep, says after Margaret’s 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.
