Motor neurone disease research comes to Lancashire
His job as a consultant neurologist demands the highest medical and scientific rigour from Professor Suresh Chhetri.
But the Royal Preston-based medic does allow himself the smallest of subjective assessments when it comes to one particular group of patients – those suffering from the nerve disorder motor neurone disease (MND).
“I would describe them as the embodiments of grace.”
Prof Chhetri’s experience of his MND patients stands in stark contrast with the cruelty of the condition which he helps to treat.
“I don’t think you’ll find a worse illness – it destroys an individual and destroys families.
“It takes away things that you take for granted – the ability to talk, walk and eat.
“You might feel hungry and desperately want food, but can’t swallow it. You might be breathless and want to take in a lung full of air, but can’t. You might even just want to give a hug – and are denied.
“One of my patient’s once told me that a fly had landed on his nose – and he was left helpless. There were people with him, but he couldn’t call out to them, because his voice had gone – he was at the mercy of the fly.”
Such stories may go some way towards explaining why Professor Chhetri and the team he leads as co-director of the Lancashire and South Cumbria MND care and research centre are so keen to play their part in slowing the speed at which the condition progresses – and, ultimately, finding a cure for what is currently a fatal diagnosis.
The centre has just signed up to join a Europe-wide research network which involves medics collaborating on drug trials and other projects designed not only to make MND a disease of the past – but to improve the quality of life for those living with it in the present.
While a recent MND drug trial did not offer encouraging results, Prof Chhetri hopes the answer will one day come through the collective power of teams like his.
“The fight against MND is not local or national – it’s global. And the condition is proving a very difficult nut to crack, because research has been going on for years.”
“But unless we build collaborations, I don’t think we’ll be able to beat this.”
Patients in Lancashire and South Cumbria could be eligible for a forthcoming drug trial as part of the European Network to Cure ALS [an alternative name for MND] to which the region now belongs, as well as observational studies about improving nutrition and swallowing.
Lead MND nurse Pauline Callager does not think medics will have any difficulty in marshalling volunteers.
“We find that patients are very altruistic and generous with their time,” she says
Prof Chhetri believes the research in which his patients could soon be partaking is, for them, as much about offering hope for future generations as it is finding a cure in their own lifetimes.
“A common question we are asked by patients is whether they can help in any way. But most don’t participate thinking that it will benefit them – it’s that hope that others might not suffer which I think drives them.”
“ADAPT AND OVERCOME”
Alan Towart is the first to admit that he has always been competitive with himself, motivated by a desire to keep pushing on. The native North Easterner has completed 17 Great North Runs – but it was not until he was 37 that he achieved his best time.
A decade later and two years after he was diagnosed with motor neurone disease (MND), the challenges he sets himself have become slightly more mundane – but much more significant.
“Everything is a target now – so when I go for my three-monthly breathing checks, I’m trying to make sure that I’m at least at a certain [level],” Alan explains.
Like most MND patients, Alan’s symptoms crept up on him slowly, but eventually became too difficult to ignore. After experiencing difficulties with his right hand and noticing muscle loss from his chest and shoulder, he was given the diagnosis he had dreaded.
“It was a really tough day for us as a family,” says Alan, who has a nine-year-old daughter, Sophia, with his wife, Dawn.
“But we have moved on a bit from there and are making the most of everything that we’ve got. I just try to adapt and overcome as much as I can.”
That can leave Dawn trying to anticipate when her husband might need her help.
“I can second guess that Alan is going to struggle with something, so I jump in to try and help – but it’s also about trying not to take Alan’s independence away,” she explains.
Alan instantly recognises the situation Dawn describes: “She will offer to help with things, but I’ll try to struggle on as much as I can,” he smiles.
For Dawn, it is those little changes in everyday life which sometimes mean she cannot escape the bigger picture which is being painted for her family.
“We’re trying to stay on the same page as much as we can – but MND has taken us onto separate pages, because Alan is the person with [the disease] and it must feel quite isolating for him.
“But then, likewise, Alan and I don’t always understand what’s going through Sophia’s head. And neither of them can really understand my concerns as a wife and a mum.
“So we are trying to stick on the same page, but it has definitely put us on slightly different paths – so we keep bringing ourselves back to the here and now.”
However, Alan is keen to stress that his family unit is “a good team”.
“We’re doing really well together,” he says with obvious pride in their collective achievement.
Alan undoubtedly has more reason than most to be moved to tears and yet one of the few things which does is not describing his own situation, but reflecting on the way he has been cared for at the Royal Preston Hospital. He says his move from North East to North West proved a timely one and meant he found a second family in the team of medics, led by Prof Chhetri, which is looking after him.
“I know there’s [got to be] that medical separation, but it’s such a close bond. I’d class them as people I look up to and respect – not just for their medical background, but because of the support they give us,” Alan says.
“It does overwhelm me the level of effort people put in here at Preston and I can’t thank the MND team enough.”
One way in which the couple do show their gratitude is by raising funds for the kind of MND research which Lancashire will soon be a part of through the European network which it has now joined.
But Dawn is as keen to raise awareness as cash.
“Unless you have a connection with MND, people [don’t understand it].
“I remember the ice bucket challenge [for MND] a few years back – I just thought it was someone asking for money and doing something a bit silly – and that does haunt me now.”
Previously, Alan’s own fundraising would no doubt have involved tough physical challenges, but he recognises that he now needs to soften the pace a little.
“We’ve been trying to cram in all the things we would have done over the next 10 years, like some nice holidays. But now as my legs are starting to slow down, we’re starting to take it easy a bit – staying positive, but adapting,” he says.
Of course, there are different definitions of taking it easy. Alan’s involves taking to a wheelchair for the Coniston to Barrow walk earlier this year.
So keen was he to exceed a self-imposed target time that he told his walking partners who were helping to steer his wheelchair to loosen their grip on the downhill slopes and let it take its own, faster, course.
“But there were still a couple of people not quite good enough for the team,” he jokes, revealing that he just missed out on his target.
“So now I’m looking forward to next year – bring it on, I want to smash that time.”
Still competing – still pushing on.