Inspirational Ivan tells of fight back against MS:
Ivan Prue is a familiar face to many runners; his tall, burly frame makes him stand out, but it’s his positive outlook on life and smiling face that makes him memorable and a pleasure to be around. However, the ‘gentle giant’ and 3:12:00 marathoner has been fighting a personal battle over the past five years, one that will undoubtedly make you take a step back and appreciate your own health.
In 2009, at the age of 37 years old, Ivan was diagnosed with an aggressive form of relapsing remitting Multiple Sclerosis (MS). The Bangor based runner is one of 4,500 people living with MS in Northern Ireland. Recently he has stepped forward in support of the MS Society’s ‘Treat Me Right’ campaign, which was launched during MS Week 2014 (28th April – 4th May 2014).
There is no cure for MS and Northern Ireland has one of the highest rates of MS in the world, and the highest incidence of male MS in the UK. No one knows the exact cause of MS but it is likely to be a mixture of genetic and environmental factors. Ivan is backing the ‘Treat Me Right’ Campaign as he personally knows the life changing impact that receiving an effective MS medicine can have. This is his story.
Ivan experienced his first MS symptoms in 2005 with some tingling sensation in his legs, feet and hands and dizziness. Ivan, who worked as an Estates Manager at a local college, said doctors dismissed his symptoms as a viral infection and the symptoms subsided.
Ivan explained, “Looking back it was probably the start of my MS. At the time I was overweight and it really made me take a step back and look at my life. In some ways those early symptoms completely transformed my life. I decided I needed to get fit so I started running. I got the running bug and developed a love for marathons and cycling. I’m glad I was misdiagnosed at this stage because it gave me time to change my lifestyle and prepare my body for the onslaught of multiple sclerosis later”.
Ivan was regularly running marathons and holds a 26.2 mile personal best of 3:12:00; he also boasts 5k and Half Marathon personal bests of 18:31 and 1:26:00 respectively. Aside from running, Ivan was enjoying 60 mile cycles at weekends; but one day he just couldn’t stay on his bike and he knew there was something wrong.
Running away from MS:
“I went out for a cycle and I just kept falling all over the place. My balance was awful and I had a bad fall off the bike and ended up in A&E. It was really scary. I got all the tests – a CT scan, an MRI and a lumber puncture. That’s when the doctors told me I had MS. It was devastating. All I could think about was “Am I going to be in a wheelchair?”
Ivan was given steroids and says he was so frightened of the prospect of losing control of his body that he started walking laps around the hospital ward, determined to fight back against MS; “When I got out of hospital, I think I was in denial about MS. I raced a ’10-miler’ at the Rathlin Run and actually came 14th. I kept training and completed the Dublin Marathon in 2009. I actually fell and fractured my rib during the race at mile 25 but kept running and finished in a respectable 3:16:00. I think I thought I could run away from MS”.
Later that year (2009) Ivan had a devastating relapse which left him in hospital for a month. “I can only describe this period of my life as hell. I had a massive relapse and was completely wiped out. I went from being a marathon runner to feeling like a baby. I couldn’t move, it was like having a stroke. My facial muscles dropped, I couldn’t speak, walk or get out of bed. I felt like I was just wasting away in that hospital bed but I couldn’t deny my MS anymore. I call MS “my monster” – I’d be running away for years but it finally caught up with me. I had to tell my close family and friends about my MS. My mum was absolutely heartbroken and it was such a difficult time for everyone. One of my running mates broke down in tears when he saw me in my hospital bed”.
Treat Me Right:
Having had two significant relapses in less than a year, Ivan was prescribed Tysabri – a disease modifying therapy which is designed to reduce relapses and slow the progression of MS.
“It was a massive decision for me to start Tysabri. It is like receiving chemotherapy but for MS. I have blood tests pre-infusion and go to the hospital every month for infusions. It is scary because Tysabri has serious side effects including the risk of PML – a potentially fatal viral infection of the brain. The longer I stay on Tysabri, the greater the risk, which for me is 1 in 100. I can’t deny that this is frightening but I’ve been relapse free for three years now and the medicine has helped me to get my life back”.
“I tried to keep working throughout all of this because I loved my job but in the end my MS monster forced me to retire. I simply couldn’t manage anyone let alone myself and I retired in January 2014. Having gone through all of this I firmly believe my health is my wealth and I have to make sacrifices to keep my monster at bay. I’ve decided not to run away anymore. I walk with my MS, knowing that it’s a part of me”.
No time to waste:
Ivan is backing the Treat Me Right campaign which is calling for revolutionary new oral MS medicines to be made available in Northern Ireland. At present there is one oral tablet available with two more expected within the next two years. However, people with MS in Northern Ireland can wait up to 6-9 months longer to access new MS medicines than people in England and Wales.
“I know I’m lucky because my monthly infusions have helped me to manage my MS but it is tough. Sometimes I feel like I’m on a merry go round constantly going to hospital for treatment. That’s why I’m excited about the new oral medicines – the first non injectable disease modifying drugs. To be able to take a tablet, rather than sit in hospital every month would be amazing. When your MS is aggressive like mine, there’s no time to waste and that’s why it’s important that MS medicines are available here in NI as quickly as possible”.
Ivan credits the support he received from his MS consultant and nurses, as well as exercise and a healthy diet, for helping him to fight back against his MS. “I’ve gone from being fit and healthy to being partially paralysed and depressed, and now back again to almost the old Ivan. I still struggle every day with the hidden symptoms of MS like numbness, blurred vision, ‘brain fog’ and buzzing in my ears but I’m able to run and cycle and I’m getting married to my fiancée Fiona in September this year. Sadly there is no cure for MS but I’ve accepted my MS and hope for a cure in the future.
“MS affects everyone differently but I want to show other people who are diagnosed with MS that you can take baby steps to fight back. Whether it’s gentle exercise or taking a positive approach, with the right medicines and support it is possible to live life to full”.
In the near future, Ivan aims to retrain as a councillor, meanly focussing on helping people/families recently diagnosed with MS. After being re-lapse free for almost four years, he also intends to ‘get back out there’ and enter a few local running events. In fact, just last Friday (16th May 2014) he completed the Les Jones 10k! Ivan completed this in 46:58, an excellent effort. However, the determined athlete, as ever, will look to improve, he said, “It showed me the I’m not race fit but I loved every minute. Starting and finishing, no drug could ever match those happy feelings.”
As always, Ivan wore his orange MS Society vest, a piece of kit that always attracts interest from fellow runners. “People always ask why I’m not in a club. I point at the back of my MS Society vest; “I’m an MS Super Star” that’s my club! I’m a running groupie. All club’s are my friends.”
NiRunning says: Ivan’s story is one of inspiration and determination and one that we should all take something from; as Ivan very rightly states, “our health is our wealth”, we should enjoy everyday… every run, because you do not know what is around the corner. We wish Ivan and Fiona all the very best with their wedding in September.
Further information, advice and support on MS can be obtained by contacting the MS Society in Northern Ireland. Their website can be found HERE