When Anne-Marie Hayden was diagnosed with multiple sclerosis, a progressive neurological condition, at age 20 she entered a “completely different world”.
She had been experiencing “strange” symptoms since her son Oisin was born. But it was not until he was three that she decided to go to the doctor.
“I had such pins and needles in my hands and feet,” she recalls. “I was having difficulty driving, and I was dropping things all the time. The doctor did a heel-to-toe test, where he asked me to walk in a line putting my toe in front of my heel. I couldn’t do it. I kept going off balance.”
She was diagnosed in March 2008. It was a very difficult time for her and her family.
“I was a hairdresser, a real go-getter and very career-focused. But then everything you know is no more. You’re into this completely different world where you’ve absolutely no control. There’s a great feeling of loss. You’ve lost the life you had previously.”
Her condition worsened very quickly. Bladder infections, difficulty swallowing and speaking, severe spasms, reduced vision and chronic fatigue became a feature of her life. She eventually needed to use a wheelchair when spastic quadraparesis caused partial paralysis.
“I would get such spasms. One time it actually overturned my wheelchair and all Oisin could do was pick up the phone and ring my mother. He went and got a blanket, covered me with it and lay there rubbing my hair and saying ‘Mammy, it’s going to be OK.’”
Anne-Marie’s turning point came when she joined MS Ireland’s Getting The Balance Right programme. She worked one-to-one with a physiotherapist who tailored a plan specifically for her. The results were amazing, she says.
“Within a very, very short length of time, I took my first steps. That feeling of standing on my own two legs, which previously could not carry me, was unreal. It actually moves me to tears now to think of it. I felt like I was beating it for the first time in years.”
Exercise and physiotherapy play an important part in the management of some MS symptoms, explains Aidan Larkin, the regional co-ordinator for MS Ireland’s local services. However while Anne-Marie Hayden experienced dramatic results from her involvement in the Getting the Balance Right exercise programme he stresses this is not the case for everyone.
“Most people will see improvements in balance, flexibility, strength, fatigue and general feelings of wellbeing,” he says. “For people severely affected by MS the programme may not make significant improvements but it can help to maintain ability and slow down disability progression.”
What is MS?
Multiple sclerosis is the most common disabling neurological condition in Ireland. More than 8,000 Irish adults - 600 of whom live in the west of Ireland - have this disease of the central nervous system. It mostly affects people aged 20 to 40 years. Almost twice as many women as men get it. While it is a lifelong condition it can be managed.
“To understand what happens in MS it is useful to understand how the central nervous system works,” explains Mr Larkin. “A substance called myelin protects the nerve fibres in the central nervous system, which helps messages travel quickly and smoothly between the brain and the rest of the body. In MS, your immune system, which normally helps fight off infections, mistakes myelin for a foreign body and attacks it.
“This damages the myelin and strips it off the nerve fibres, either partially or completely, leaving scars known as lesions or plaques. This damage disrupts messages travelling along nerve fibers – they can slow down, become distorted, or not get through at all. As well as myelin loss, there can also sometimes be damage to the actual nerve fibres. It is this nerve damage that causes the accumulation of disability that can occur over time.”
As the central nervous system links all bodily activities people may experience many different types of symptoms.|
“The specific symptoms that appear depend upon which part of your central nervous system is affected and the role of the damaged nerve.”
No one knows the exact cause of MS but it is likely that a mixture of genetic and environmental factors play a role, according to Aidan Larkin.
“Genes and family history MS is not directly inherited. Unlike some conditions, such as cystic fibrosis, for example, there is no single gene that causes it. It’s likely that a combination of genes make some people more susceptible to developing MS but not everyone with this gene combination will develop MS. Genes are only part of the story. There are environmental factors, too.
“MS is more common in areas further away from the equator. It is virtually unheard of in places like Malaysia or Ecuador, but relatively common in Britain, North America, Canada, Scandinavia, southern Australia and New Zealand.”
He says it is not clear why people further away from the equator are more likely to get the condition. It is possible that something in the environment, perhaps bacterial or viral, plays a role. No single virus has been identified as definitely contributing to MS but there is growing evidence that a common childhood virus, such as Epstein Barr virus (which can cause glandular fever ), may act as a trigger.
There is also a growing amount of research which suggests that a lack of vitamin D could be a factor in causing the disease.
“We get most of our vitamin D from exposure to sunlight,” explains Mr Larkin. “Low levels of this vitamin have been linked to higher numbers of people developing many different conditions, including MS.
“MS is complex and can cause many different symptoms so it’s not easy to diagnose. It’s hard to pinpoint exactly when MS begins and the early signs and symptoms are different for everyone.”
It is not uncommon for a diagnosis to take several months or even longer. A range of other possible causes need to be explored and many different tests need to be carried out.
While there is no cure for MS there are different ways of managing the condition. This may include drug treatments for individual symptoms or relapses, diet, exercise and complementary therapies.
MS symptoms may include vision and balance difficulties, dizziness, fatigue, bladder problems and stiffness/spasms. Problems with bowel, speech, swallowing, tremor, memory, thinking and emotions may also occur.