Positive Outlook

Simon Jameson is 23 years old. He has just finished college and his biggest sporting passion is paintballing. But although this Dublin man enjoys the physically demanding target game, he is confined to a wheelchair.

Born with muscular dystrophy (MD) and diagnosed at birth, Simon didn’t experience any symptoms until he was around six years old and from there on his condition began to worsen — but he refused to be curtailed by his disability and remains determined to live every day to the max.

“I remember wondering why I couldn’t run as fast as my friends, or jump as high as they could and my balance wasn’t good either,” he said.

“My older brother, Edward (who died in 2009, aged 30) had MD as well so I guess it was something I knew a little bit about, but although I was aware I would get the same thing, I wasn’t really expecting it when the symptoms became apparent.”

Since the onset of his condition, Simon (who also has a sister, Lorraine, 30) has made a conscious effort to try and overcome all the hurdles which the everyday world places in his way.

“I began to go downhill gradually and ended up in a wheelchair when I was 12, but although I can’t walk I have always been determined to find my own way of doing things and not miss out on life because I can’t move as well as everyone else can,” he says.

“I am on heart medication and oxygen masks, but although the doctors recommend I use the oxygen compressor every day to exercise my lungs, I only use it every few months. I have stopped doing a lot of the treatment that is recommended because I would rather live a shorter life to the full than live longer and spend every day taking medicine and be strapped up to an oxygen chamber.

“When I decided I wanted to go paintballing, everyone thought it was a crazy idea — how could someone in a wheelchair take part in a game like that? But I was determined and I had my chair customised with a special motor and got stuck in.

“In the beginning people were really careful around me, but when they realised I was going to paintball them the same as anyone else would, they started to be properly competitive with me. I became an equal to them and it was great.”

Simon, who lived with his parents Joseph and Ita until last year when he moved into an apartment of his own, is coping well, but often wishes other people would treat him with respect.

“The biggest gripe I have is the attitude other people have towards me,” he says. “You would be amazed how many times I am ignored, stared at or even been the butt of negative comments.”

“Even though I am physically disabled, I am entitled to live my life to the full — life is for all of us and we are all on this world together, so no matter how much time we have, there is a whole world out there and I want to experience as much of it as I can.”

Dr Bryan Lynch, consultant paediatric neurologist at the Central Remedial Clinic, Clontarf , says although relatively rare, MD is a wasting disease which often gets worse over time.

“Muscular dystrophy comprises a group of muscle disorders in which there is muscle weakness, often progressive over time and in which there is evidence of ongoing breakdown and regeneration of muscle cells,” he says. “These disorders vary considerably in severity. Some are present at birth, others present in early childhood or later in life.

“Although I do not have precise figures, I estimate there are at least 120 boys and young men with Duchenne muscular dystrophy, one of the worst forms — and at least another 200 adults and children with various other forms of the condition in Ireland.”

MD is the collective name for a range of neuromuscular conditions, characterized by the progressive weakening and wasting of the muscles.

It is a genetic disorder, so people with a family history of the condition may be at risk. In genetic disorders where the gene is “recessive”, there may be no known family history.

Symptoms include: Muscle weakness, often initially of the proximal muscles, which move the shoulders and hips. This may manifest with difficulty walking, running, climbing stairs, frequent falls and difficulty getting up off the floor. Contractures (tightness of tendons, may also be a problem, leading to restriction of movement).

There is currently no treatment which cures MD or prevents its progression, but steroids may slow the progress of Duchenne muscular dystrophy. And many helpful medical interventions are available.

Long-term prognosis varies depending on the type of MD. In some types, the muscle weakness continues to progress, with weakness of chest and heart muscles leading to limitation of life expectancy. In other types, the disorder may remain stable over long periods of time and through adulthood.

If a muscle disorder is suspected, seek advice from a GP, who will decide whether a referral to a paediatrician or paediatric neurologist is necessary for further assessment.

* For more information visit www.mdi.ie or call 01 623 6414.