"Many people won't recover from a neurological condition but the big thing is the better quality of life."

Leitrim man Eamon McPartlin spoke to the Leitrim Observer this week about how his life changed after he developed a neurological disorder and his passionate hope that more services will open up to those with what is a very challenging illness.
Eamon also spoke of how his marriage broke down and he was forced to give up his job as an engineer and move from his home of 25 years in Galway back to Leitrim after he was left struggling for several years to get a diagnosis and subsequently, treatment.
A member of the Neurological Alliance of Ireland (NAI) he addressed political representatives at an online meeting this month to highlight the impact that inadequate supports is having on people living with neurological conditions in the North West region.
The NAI have been running a campaign for several years to get Community Neuro-Rehabilitation Teams in place in every healthcare area in the country, he explained.
“The challenges of living with a neurological condition can often be more difficult to cope with than the condition itself. The absence of easily accessible, local multidisciplinary care significantly affects the lives of patients like me living with neurological conditions. Access to a community neurorehabilitation team is essential in helping people manage their condition and maintain a better quality of life," he told us.
He stressed, "They are so important because the reality is many people won't recover from a neurological condition but the big thing is the better quality of life they provide for people living with life changing conditions. Also the quicker you can get access to these teams, the better the change of a positive outcome, the longer you wait, the harder it is to reverse the affects of it.

READ MORE: PICTURES: Celebrating Lifelong Learning in Leitrim at Drumshanbo graduation ceremony

Eamon's story

He said, “I was diagnosed with Functional Neurological Disorder (FND) in 2021, although symptoms actually began to appear a lot earlier in my thirties. Even before I received my diagnosis, the condition led to me having to give up my work as an engineer and ultimately to my marriage ending."
He added, “Accessing multidisciplinary treatment including physiotherapy, psychology and occupational therapy through community neurorehabilitation teams, without having to travel huge distances is vital. It allows people living with a neurological condition to receive treatment locally without they or their family having to take significant time off work or spend lots of money on travelling and accommodation. I travel to London for treatment and rehab which is not feasible for other patients with neurological conditions.”
Eamon had issues with movements in his mid-thirties and in his early forties they "really ramped up and I went to my GP."
The initial signs were that he had a "hesitation to sit down as though the movement wouldn't complete" and also if he was turning "I would have to think about making that turn."
Another symptom was when he came to a step he had the same issue of "hesitation" he put down to old sports injuries at the time.
One morning he woke up with a severe pain in his neck and thought it was a muscle issue. "When I looked in the mirror, my head seemed to be moving to the side by itself."
Eamon then underwent physiotherapy but his issues got progressively worse and sadly, his marriage broke down at this point. "Unfortunately, it wasn't until my marriage broke down that I went back to the GP and said 'We need to find out what's going on here'. He referred me to a physiotherapist who was a neurophysiotherapist. He actually sent me to him because he was looking for signs of Parkinson's."

READ MORE: Potato blight yellow alert issued in Leitrim: Vigilance advised

Eamon lived in Galway for 25 years where he worked as an engineer but moved home to Leitrim when his condition began to worsen.
It was decided that Eamon may have an atypical Parkinsonian disorder and he was sent to a neurologist in 2016 and underwent a number of scans. "The brain scan and neck scan came back clear so I was no further on."
Later that year, he spoke of how his head "started twisting to one side really noticeably when watching TV and that night the twisting was so bad, it was pushing me into the pillow."
The next morning he Googled the phrase 'head turning on its own' and began to suspect he had a condition called Dystonia. He was referred to a neurologist in St. Vincent's in Dublin who diagnosed him with the condition.
Eamon underwent more scans and tests at St. Vincent's but "they couldn't find anything conclusive so they decided to try Parkinson's medication."
However, two years later Eamon's condition wasn't improving.
Finally in 2021, he travelled to see Professor Mark Edwards, who has a specialist clinical and research interest in Movement Disorders and Functional Neurological Disorder (FND) at St. George's Hospital, London and it was there that Eamon finally received his diagnosis.

He noted that it can't be detected through scans as there is no structural damage to the brain. "There was no treatment in Ireland for the condition and I'm currently still on the waiting list for the treatment in London since the end of 2021 through the public system, the Treatment Abroad Scheme. I did do a private one week course which did help me."
Eamon is the founder of FND Ireland which is a support organisation for those living with the condition. "I had to give up working as an Engineer back in 2017 and returned to Leitrim in 2018 where all my immediate family are. Now I'm the founder of FND Ireland, on a voluntary basis. We are a new charity that supports those with FND and we're located at the W8 Centre, Manorhamilton."
Community Neuro-Rehabilitation Teams
Attendees at the online meeting this week, which included TDs, patient groups and medical professionals were briefed on the lack of progress in the region with establishing neurorehabilitation services and it was highlighted that the North West community neurorehabilitation team promised by the Government in 2019 is yet to be fully funded.
The existing community neurorehabilitation team based in Donegal has only been funded for a quarter of the posts required, resulting in waiting lists of over two months for people in Donegal. Eamon said: "It only serves people in Donegal so patients based in Sligo and Leitrim have no access to a community neurorehabilitation team. As a result, patients in the region are often forced to travel long distances to access care, endure extended waiting times, or are left without any access to neurorehabilitation services."
He continued, "When I went back to Leitrim and went to my local physio community server here in Manorhamilton, the physio said he couldn't do anything for me. He referred me to a physio in Sligo Hospital and I had a number of weeks of physio there but that was it. There is no community neurophsyio therapy or neuropsychology, occupational therapy, others need speech and language therapy. You would need a team of up to 13 people working together to assess a person."
The NAI is calling on the government to fulfil its commitment to the 2019 Neurorehabilitation Strategy, which includes the full establishment of the nine promised community neurorehabilitation teams across the country.
It was stressed that six years after the implementation plan for the strategy was published, most areas across the country are still without any access to a community neurorehabilitation team.

READ MORE: PICTURES: Farming fame for Leitrim girls as they’re named future farmers of Ireland

Funding for this team was in the HSE estimates in 2024 but it never proceeded to recruitment, Eamon said and then "it was gone out of the budget altogether."
As part of an ongoing series of online events, patient advocates and individuals living with neurological conditions will share their personal experiences, highlighting the significant impact of the shortage of neurorehabilitation teams in their region.
For more information, visit www.fnd.ie.