Local Faces: Seán Balfe

“Most people when they think of Parkinson’s picture an old man stooped, shuffling along. But that’s not always the case, younger people can get it too,” says Seán Balfe, who was diagnosed with the disease when he was 49.

Living in Tallaght Village, Seán has become involved with the Parkinson’s Association of Ireland (PAI) and is now incoming treasurer with the Dublin branch.

The 63-year-old became involved with PAI through their free exercise classes before the Covid-19 pandemic, and he found that talking to others with experience of living with Parkinson’s Disease changed everything.

“Don’t do what I did, which was keep it to yourself,” Seán says.

“I was afraid to talk about it because I was determined not to be seen as a person with Parkinson’s.

“I shied away from talking, I shied away from the PAI.

“I would have worked with people for years and people would have known me for years after my diagnoses and never really would have known I had Parkinson’s.

“People like me, somebody who has it, try get in touch with somebody who has it, they’ll be able to give you information.

“It took me some time to realise that you don’t die of Parkinson’s, but you will die with it.

“It will change your life when you talk to somebody, it makes a huge difference because that’s what it took for me, for somebody to say that it can be managed.”

Talking can help ease the weight of diagnoses, and Dublin branch of the PAI are eager to enable people around Tallaght to pop by for their information meeting on September 27.

Parkinson’s is a progressive neurological disease which affects walking, mood, speech, swallowing, digestion and energy levels.

Incurable, Parkinson’s is the second most common neurological illness after Alzheimer’s disease.

Seán Balfe

For the most part, Seán lived a rather “sedentary” life, helping his father Watt on the family farm near Blessington as a young lad in the afternoons after attending school in Lacken.

Having gone to St Patrick’s College in Drumcondra, Seán started teaching in Clondalkin and ended up becoming the principal of Assumption Junior National School in Walkinstown.

“Looking back, I’d say I had it at least in 2002 but I didn’t know at the time,” he explains.

“They say 75 percent of the damage is done by the time you find out its Parkinson’s.

“There’s a part of the brain called the substantia nigra which produces dopamine. What happens is the cells producing dopamine fall off to die and are not replaced.”

Dopamine plays a key role in regulating the movement of the body, so when this is no longer transmitting people can have trouble with coordination and moving freely.

Seán noticed when writing that it would start large on the left side of the page, and “be miniscule by the time it got to the right-hand side”.

This was micrographia, a secondary motor symptom of Parkinson’s that can sometimes be an early symptom of the disease.

In 2008, on a trip to visit his GP, Dr John McManus, to get fluid removed from his knees, he mentioned that he had been dealing with what he thought was a repetitive strain injury to his elbow.

However, after a brief manipulation, Dr McManus said to Seán that he believed he could have Parkinson’s Disease and immediately, it all made sense.

“I just went quiet, it made so much sense to me, I never had good work/life balance and I thought life was catching up on me, he says.

Seán Balfe (63), who was diagnosed with Parkinson’s disease when he was 49, found that talking to others with experience of living with Parkinson’s Disease changed everything

“I went to a neurologist in St Vincent’s Hospital then.

“Unusually, I really should have known because my father was diagnosed with Parkinson’s – although he was an older man at the time, he wasn’t diagnosed until he was into his 70s.

“It’s not a hereditary disease, although they do say there could be a familial disposition.”

Having started medication to curb some of the symptoms, Seán was dealing with symptoms of a full body movement and was slow to initiate movement in general.

Navigating from one surface to another would also pose a particular challenge, such as when trying to step on to an escalator, and he did not have the “typical tremor” associated with the disease.

Although Parkinson’s is “easy to deal with if your patient”, fine movements such as sorting through paperwork became difficult, and his coordination was out of sync.

“Living with Parkinson’s got to a stage where it became so frustrating,” Seán admits.

“My energy levels had decreased, so I had awful fatigue doing or sustaining any sort of work.”

Depression and anxiety are also clinical symptoms of Parkinson’s, and it can have an impact on one’s voice – as it did with Seán.

Seán is a very articulate man and can illustrate his points to great effect.

“I can sometimes be a little hard to hear, because it has an impact on your voice,” Seán explains.

“This was one of the difficulties I had in work. My voice is one of the most important tools of my trade as a teacher.

“If I couldn’t communicate, then I couldn’t really do it.

“For a long time, I didn’t allow my Parkinson’s to control me and to be honest, when I retired, I don’t think I was ready to in my head.”

The Tallaght resident’s condition deteriorated in the nine-years after his diagnoses, up until the point where he was forced to retire at the age of 57 in 2017.

However, a year after calling it a day, Seán’s quality of life improved significantly and his Parkinson’s “is much more under control” since he underwent a life-changing procedure in London.

Seán had a Deep Brain Stimulation (DBS) treatment, which involved the implanting of four electrodes into certain areas of his brain.

“There are essentially four strands in the brain with electrodes on it, and there is 16 points which can be manipulated,” he explains.

“I came away from the procedure with a little controller to raise each one and manipulate the surge.

“With the medication, there will be parts of the day where you’re on and off. The DBS helps even out the differences throughout.

“It’s a wonderful thing, it changed my life, you wouldn’t know I had Parkinson’s today.”

Thankfully, Seán was able to avail of the HSE’s long term illness scheme which ultimately covered the costs associated with living with the disease and the treatment abroad scheme covered his procedure in London.

On September 27 at 7pm, in the Trustus Day Centre, there will be an information meeting held by the Dublin branch of the PAI, with the view of potentially establishing a local support group.