Leitrim man’s testimony shows urgent need for local MS support worker

Sligo and Leitrim are the only counties in Ireland without a community support worker for people living with Multiple Sclerosis (MS). According to CSO population data, over 300 people in the two counties live with MS. The north west has the highest incidence of the condition nationwide, yet those affected in Sligo and Leitrim are being left behind.

On September 19, a meeting was held at the Radisson Blu Hotel in Sligo, bringing together MS Ireland, people living with MS, local councillors, TDs and senators. Attendees heard powerful personal stories, alongside information from MS Ireland highlighting the urgent need for a dedicated community support worker in the region.

One of those who spoke was Leitrim man Mark Early, from Kilnagross. Mark shared his moving experience of being diagnosed with MS, and the difference that a support worker could have made during the early stages of his illness.

Mark explained that much of his life had been spent working in active warzones, in the Middle East, the Balkans and Ukraine - as a medic, security consultant and diplomatic observer. Yet, he admitted, “It didn’t prepare me for my MS diagnosis.”

His symptoms began in January 2023, starting with numbness he assumed would fade, but which eventually spread across his entire foot. After visiting a chiropractor, he was referred for an MRI and later a lumbar puncture. “I got tested for everything. I could see it was starting to point towards something more significant. MS was on my mind,” he recalled.

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Three months later, he travelled to Dublin for his test results, only to be told the lumbar puncture sample had gone missing. He underwent another lumbar puncture just two weeks before his wedding. In August 2023, he finally received a diagnosis of MS, and in the same month contracted COVID, triggering a severe flare-up. 

This led to occipital neuralgia, where the nerve at the back of his head was attacked, leaving him with an unrelenting headache that lasted from August 18 until Good Friday the following year.

“While I was in hospital I was given a day's release to attend the Mater Hospital where I received my official diagnosis. Even though I had my father and two best friends I still felt utterly alone,” Mark said.

Drawing on his training in critical incident stress management, he leaned on healthy coping mechanisms, as well as the support of his family, friends and faith. But he stressed, “Not everyone has the training, supports or faith that I have. No one in any county in Ireland should ever feel abandoned in those early days with an MS diagnosis. You’re not just processing a medical condition, you’re moving through the five stages of grief.”

He continued, “Without the proper supports, people can get stuck in those early darker stages when all they really need is guidance, reassurance, on a path towards acceptance and hope.”

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A year after his diagnosis, Mark connected with MS Ireland through their Donegal service. The Donegal community support worker, Maria, provided what he described as a lifeline. But because he lives in Leitrim, not Donegal, the help could only extend so far.

“This gap really matters. It took me two years to feel like myself again,” he said. “In the 24 counties across this country, people with MS have access to vital supports such as emotional counselling, physiotherapy, employment advice and more - but not here; not in Sligo and not in Leitrim.”

Describing the absence of services as detrimental for every person with MS in the region, he concluded, “People with MS in Sligo and Leitrim deserve the same support as every other county in Ireland, nothing more and nothing less.”

MS Ireland is seeking €72,997.56 to fund one full-time community support worker for Sligo and Leitrim. These workers provide essential assistance with healthcare access, emotional support, financial welfare, and home and personal care. With the north west recording the highest incidence of MS in Ireland, the message was clear that the lack of such a service in these two counties can no longer be accepted. 

For Mark, and for hundreds more in Sligo and Leitrim, access to a community support worker would mean the difference between isolation and hope.

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Mark Early with MS Ireland staff