A lifelong condition .. not life-limiting
Positive message from multiple sclerosis sufferer
In a new film for the MS Society, stars urge the charity’s supporters to resume their fundraising efforts.
The celebrities’ plea is asking people to sign up for #100kYourWay – a challenge to run, walk or cycle 100k.
In doing so, they will be supporting people like Peter Rooney, who was diagnosed with multiple sclerosis (MS) four years ago.
Here, Peter talks about a diagnosis that brought with it fears and anxiety, visual impairment, physical pain and isolation.
Crucially, though, a defiant Peter explains why he refuses to let MS define him.
Peter’s clumsiness was always a good-natured joke in the Rooney family. They’d give him a gentle ribbing for frequently taking a tumble, getting into scrapes and receiving the odd knock.
When he was hit by a car while walking to work at the age of 20 in 2016, he considered himself lucky to get up and walk away with no more than a few nasty bruises.
Although that accident in itself was just another mishap, it indirectly led to the diagnosis of a medical condition he’d only previously encountered as portrayed by wheelchair users in bleak TV soap storylines. For Peter, of Calderwood, East Kilbride, has multiple sclerosis.
He said: “A week after the accident, I lost the sight in my left eye.”
“When I went to hospital, they thought it was trauma. Ophthamologists and senior doctors could not pinpoint what it was.”
Peter was referred to consultant neurologist Dr Niall MacDougall at University Hospital Hairmyres. That was in March 2016, when he was abuzz with excitement about an impending summer packed with the kind of adventures that would be on many a young person’s bucket list : the Benicassim festival in Barcelona and backpacking across Thailand.
What he hadn’t factored in was being diagnosed with lifelong condition, very active relapsing remitting MS.
“Although the words ‘multiple sclerosis’ had been used, it had not been confirmed. But they knew then that was the only kind of possible explanation,” said Peter.
“Because I had so much planned, the neurologist told me: ‘Go off and have a great summer, and we’ll address it when you get back’.
“He didn’t want it hanging over my head. I did go off and have a fantastic summer, all thanks to the sensitivity of my neurologist – and I hugely appreciate that.”
The loss of vision had been caused by optic neuritis – inflammation of the optic nerve. It is the most prominent symptom of MS, which was diagnosed upon his return from his travels that September.
Keen runner and cyclist Peter didn’t fit the typical profile of a person diagnosed with MS. He wasn’t in his 30s, 40s or 50s and there had been no previous hint of any symptoms prior to the partial failure of his eyesight.
“Before, I did not really know what MS was and didn’t know anybody who had it.
“On TV, you’d see people with MS and they’d be in a wheelchair. That was the extent of my understanding, so it was shocking and scary to hear those words,” he said.
“I was confused and I wasn’t getting my head around it. Actually, I was embarrassed. I told a close friend, but I didn’t tell my other pals for quite a while. I didn’t want people feeling sorry for me. I didn’t know what was happening to me then, and I didn’t know what would happen to me in the future.
“My MS nurse sat me down and gave me the diagnosis, and we went through the options and how we would address it. To be honest, I think I handled it pretty well, mainly because it had been at the back of my mind most of the summer.
“At the start, my attitude was, ‘just get on with it’. But when I actually got diagnosed, it all started catching up with me. I became numb all down my left side, my arms, my legs. I was avoiding my pals, trying to isolate myself. I just wanted to be alone.
“I couldn’t imagine getting better and having a decent quality of life. I was just in a total rut.”
At that time a student of Mechanical Engineering at Glasgow Kelvin College, Peter was leaving his home at 6.30am, travelling by bus to Springburn and arriving with five minutes to spare before
At the end of the day I didn’t really change at all. I am still me Peter Rooney
classes. He experienced back spasms, restless legs that constantly kicked, weakness down his left side and extreme fatigue.
With his condition gradually deteriorating, he found the 12-hour day exhausting and was soon forced to drop out of college.
A MRI scan revealed lesions and considerable damage inflicted on his spine and on his brain – evidence that exposed just how active the condition had become, and the pressing need for a treatment plan that would stall its progression and limit further damage.
In February 2017, Peter was admitted to Queen Elizabeth II University Hospital to receive Lemtrada – a disease-modifying drug for very active relapsing remitting MS, which is administered intravenously in two treatment courses, 12 months apart, and typically reduces the number of relapses by around twothirds.
It took him three months to recover from what he described as “a really harsh experience”, but one from which he would derive considerable benefits.
A year later, when his balance, pace
and gait was poor, Peter spent five nights in hospital, receiving another round of Lemtrada treatment.
His participation in a research project involving blood samples, tests and puzzles indicated that he was finally entering a more stable phase.
And not only did a further MRI scan show no new lesions, it also revealed that some were beginning to repair.
The upbeat 24-year-old Peter of today bears little resemblance to the 20-year-old who feared that his diagnosis would rob him of any future quality of life.
He has learned to better manage his condition – and if he doesn’t get home from work until 6pm, that means he must rest up for the remainder of the day.
He has resumed his studies and is entering fourth year of a Quantity Surveying degree course at Glasgow Caledonian University.
He’s also working with McTaggart Construction – a progressive company that respects Peter’s need to work flexibly. After 10 months’ training, Peter last September completed the Great Scottish Run and raised £2500 for MS Society Scotland – his way of thanking the charity for the enormous practical and emotional support that has helped him make it through.
Mindful of the fact that the MS Society faces losing nearly a third of its income this year due to COVID-19, and a further 15 per cent next year, Peter – who had to shield during lockdown – has pledged to continue raising funds and awareness.
The talks he has delivered help promote better understanding of MS and give people who have recently been diagnosed with the condition a more positive outlook.
To them, he says: “At the time I was diagnosed, I didn’t want to tell my pals because I didn’t want to change in their eyes. But, at the end of the day, I didn’t really change at all. I am still me.
“You just have to take a step back, breathe, and realise that there’s a lot more research and there are treatments to help you. It’s not lifelimiting and it’s certainly not a death sentence. Be as positive as possible. You will still be you.”
To help MS Society Scotland ensure that no-one has to face MS alone, sign up for the fundraiser at www.mssociety.org.uk/100kyourway