Muscular Dystrophy UK

Playing sport has always been my thing – I was a good all-rounder, playing rugby and enjoying rowing at school, sailing with my family and water skiing with my best friend, Mark. Looking back, there were telltale signs that things weren’t quite right with my lower limbs; as a child I walked on tiptoes, which I have since discovered is due to muscle weakness, or atrophy, which can occur in the upper arms, too. I also suffered with arrhythmia in my late teens and early 20s – another symptom of muscular dystrophy.

Then, when I was 25, my brother, Roger, and I were away with our parents on a golfing break. It was a particularly hilly course and towards the end of the game my legs and calf muscles became very tired, aching and sore. I assumed I’d over-exerted myself but decided to get checked out as they were so painful. I was referred to an orthopaedic surgeon, who, after examining me, said he couldn’t help me as he thought I had muscular dystrophy. I was absolutely stunned to receive such a scary diagnosis and went back to work in total shock. Fortunately, a close friend of our family’s was a matron and she made a few phone calls to the Royal Victoria Hospital in Belfast, getting me referred to a doctor there. Within a few days, I was seen and then referred on to Victor Patterson, a consultant neurologist in Northern Ireland and an expert in muscular dystrophy. I was admitted for three days of testing, including a muscle biopsy, blood tests and various nerve tests that entailed electroshock treatment – which was particularly unpleasant, as you can imagine! When I told Dr Patterson about my heart problems and the test results came through for my muscle strength, he explained that I had a milder form of muscular dystrophy called Emery-Dreifuss. I was told that as long as I looked after myself and made sensible choices, I shouldn’t have any major issues besides a slow and gradual weakening of the muscles in my limbs and back.

After the diagnosis, I had a pacemaker fitted as a precaution in case my heart rate dropped, and I was also put in touch with Muscular Dystrophy UK at Belfast City Hospital.

The charity arranged for me to have regular physiotherapy to help to maintain the available function in my limbs for as long as possible. I also benefited greatly from hydrotherapy – the weightlessness in the warm water helped to ease my muscles, which made partial weight-bearing activities possible.

Aside from the therapies, life carried on pretty much as normal – I met my wife, Jennifer, and our twins, Ross and Emma, were born when I was 32. Unfortunately, that was also the time when I became aware of the weakness creeping into my body. I was losing strength in my arms, and the lack of control over the physicality of my condition was becoming more prevalent.

I was gutted when I realised I was unable to carry the babies up the stairs in my arms.

Determined to find a solution, we opted for a sling to enable me to carry the children upstairs without risk of dropping them. The realisation that I was deteriorating upset me, though, and I worried about whether I’d be able to play with my children as they got older – I couldn’t kick a ball round the garden with Ross or play at rough and tumble with Emma.

My consultant suggested that counselling might help. I saw a private counsellor, who helped me to accept that I wouldn’t have control of what was happening to my body and that the condition would evolve with time. I learnt to focus on what I could do, concentrate on the positives and the loving, close relationship I had with my children. I realised I had much more to offer than the physical side of the relationship with my children and could interact and bond with them in numerous ways.

I continued with the physiotherapy, too, requesting additional treatments whenever I noticed a change in my condition – when I’ve been in pain or struggling in any way, for example – which always seems to get me back on track.

Due to the ongoing deterioration in my lower limbs, last year my diagnosis changed to

tibial muscular dystrophy – in which the muscular weaknesses worsen very slowly and mainly affect the lower legs and the arms. My condition has never got in the way of my work as the managing director of our family packaging firm, though I use a walking pole full time and we’ve had a lift fitted at work for me to get to the office on the first floor. I’m fine with driving, though I’m more comfortable in an SUV as they’re higher and easier for me to get in and out of.

As for the twins, they are now 18 and Jennifer and I are so proud of the amazing young adults they’ve become. I needn’t have worried about the relationship I would form with them – we’re a loving, close-knit family who are always there for each other, which is exactly how I wanted it to be. Thankfully neither of them is affected by muscular dystrophy, though my daughter may be a carrier of the faulty gene, which we’ll investigate further when she’s older.

Thanks to Muscular Dystrophy UK, I still have regular physiotherapy, though unfortunately I’m unable to continue with hydrotherapy as I can no longer get in and out of the pool. Nevertheless, the charity’s support has meant a great deal to me and has enhanced my mobility. I’ve tried to give something back over the years by arranging fundraising initiatives and I donate annually to the charity via The Big Give. It’s important to me that others with the condition are given the same assistance that I have been given to have the best life that is possible for them.

UPDATE

Money raised will go towards employing two PhD students and a clinical research fellow for ongoing research projects to help to find cures for muscle-wasting conditions.

Total Raised: £114,789

THE FACTS

  • Muscular Dystrophy UK aims to bring individuals, families and professionals together to eliminate muscle-wasting conditions through research and the development of effective treatments.
  • The charity supports 70,000 people in the UK who are living with a muscle-wasting condition.
  • Money raised will support and fund a new generation of neuromuscular researchers, PhD studentships and young scientists wishing to specialise in this field.
  • The charity selects only the most promising research projects through a detailed peer review scheme to ensure continuing progress.

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