Alan Donnellan has been robbed of everything, except his speech and head movement, yet he says things could be worse.
The 46-year-old has advanced multiple sclerosis yet he manages to somehow see the silver lining in the black clouds overhead.
“The big thing I have is acceptance,” he says. “That is priceless. From the start I accepted what happened to me. I had lived a full life and had been around long enough to know that this was how things were going to be.
“The way I look at it is things could have been worse. That was my thinking from the start. I’ve known people who died from cancer despite all the treatments they received.”
Alan, who was born in Loughrea but lived in Dublin for a number of years, moved to the United States during the 1980s. He worked for seven years in bars in New Jersey, New York and California as well as in Berlin before returning to Galway to settle in Renmore.
He was diagnosed with primary progressive MS 10 years ago after complaining of fatigue and lethargy for a time. “Everything happened slowly,” he recalls. “I began to suffer from fatigue and knew something was wrong.”
He attended his GP and eventually was diagnosed with the condition, the most common autoimmune disorder affecting the central nervous system.
When he heard the words MS he did not panic, he says. “I wasn’t frightened. One thing I was, I was never frightened. I had enough life experience to realise that acceptance was the key. It could have been worse, that was my thinking from the start.” He had counselling for a while, which helped a “bit”, he says.
As the condition began to take hold his symptoms worsened. “Slowly things deteriorated, especially the fatigue. Soon I was using a wheelchair.”
He moved to the Galway Cheshire Home centre at Curragrean, Merlin Park, which provides supported accommodation for people with physical and neurological conditions, eight years ago. He is confined to bed most of the time and is only able to shift his head. His hands are crossed on his chest and he is unable to move them. When he uses his wheelchair he operates it by using a headset as the only part of his body with any mobility is his head. He cannot swallow and is fed through a tube.
When this writer visits he is not long out of hospital. He had been admitted because of breathing difficulties. He is lying in bed watching television - he likes movies, especially ones featuring Martin Sheen. This is how he spends most days. He likes music too, especially the blues and reggae. His room is dotted with photographs of family and friends - his father lives in Oranmore and the rest of his family live in Boston. He is a huge West Ham fan and a jersey from the Birmingham club has pride of place on his bedroom wall.
Despite all the challenges Alan faces daily he says he is in good form “most of the time”. “I am not in pain and I never think about what might have been,” he says matter of factly. His voice is low but there is no mistaking the conviction behind the words. And there is wit, too. “At least I managed to stay out of prison!” It is hard to know if he is serious. He sees my quizzical expression and says he had a lot of problems. “I was gambling and drinking. I used to drink even before going to the Bish discos!” he says. He was not academic but liked the Bish. He speaks particularly highly of Ciaran Doyle, the school principal.
While Alan Donnellan is not religious he has been to Lourdes on five or six occasions and says he found healing there. “It’s good for me, I am always very much at peace after going there.”
What is multiple sclerosis?
MS is a condition in which the coating around nerve fibres (called myelin ) is damaged causing a range of symptoms.
“To understand what happens in MS, it’s useful to understand how the central nervous system works,” explains Aidan Larkin, the national development services manager with MS Ireland who is based in Galway.
“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, the immune system, which normally helps to 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 fibres – 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.”
It is estimated that about 8,000 people in Ireland have MS. More than 640 of this estimated group live in the HSE West area (Galway, Mayo and Roscommon ) - 358 live in Galway.
This lifelong condition is normally diagnosed between the ages of 20 and 40 years and affects almost three times as many women as men.
“Once diagnosed, MS stays with you for life but treatments and specialists can help in the management of symptoms,” according to Mr Larkin.
“Currently there is no known cause and consequently there is as yet, no cure, but research is progressing fast. For some people with a progressive form of MS they call it ‘the thief that keeps on taking’.
He describes the condition as complex and says it can cause many different symptoms which can make it difficult 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 and frustratingly it can take even longer. A range of other possible causes need to be explored and many different tests need to be carried out.”
For further information email [email protected] or telephone (091 ) 768630