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'It robs you of a normal life': Researchers seeking volunteers for programme seeking to help those with MS

People with Multiple Sclerosis in Cork and elsewhere have been urged to take part in a new programme aimed at helping those who may also have cognitive difficulties as a result of the illness.

One of the assistant researchers on the programme, which is being operated from NUI Galway, is Robert Joyce, who has had Multiple Sclerosis (MS) for the past 27 years.

Robert, who turned 51 last week and who blogs at www.a30minutelife.com, said: "MS is very hard."

When he was first diagnosed 27 years ago in London he said "there was no treatment at all - nothing".

He suffered fatigue and loss of sensation in his limbs, meaning he stopped working as a chartered accountant.

"This illness robs you of a normal life," he said. "It puts constraints on you that others don't have."

A father, he now has secondary progressive MS after his symptoms were re-awoken following a car crash five years ago.

For the decade prior to that medication had left him symptom-free.

"I have had my very dark days with this. That's why this job gives me the opportunity to use my lived experience, potentially for the benefit of others."

Robert will represent the patients with MS to help design and conduct the study in a PPI (Patient and Public Participation) role, making him the first person employed by NUIG in this role.

The programme, called COB-MS, was developed to address wide-ranging symptoms and functional difficulties associated with cognition that present in MS.

Researchers said approximately 50% to 60% of the 9,000 people in Ireland living with MS have difficulties with cognition, which can have a large impact on their quality of life.

Those cognitive difficulties, which can be caused by or accelerated by MS, can include forgetfulness, word difficulty and a loss of concentration which can impact on areas such as driving.

The program has already proved successful with a smaller group and the current feasibility phase needs 130 or more volunteers to take part.

Robert said the precise content of the program can't be disclosed ahead of recruitment, and that while 40 people are already on board, another 100 are required, particularly from counties Cork, Donegal, Clare and Galway to make it nationally representative.

Picture: Zbigniew Zborowski

Those behind the project are currently looking for participants to take part in the nine-week COB-MS program, in which they hope to assess its effectiveness and how it could be developed further.

The primary investigator on the program, Dr Sinéad Hynes, said: “Past research suggests that cognitive intervention and rehabilitation can enhance daily functioning in people with MS.

"A lot of work has gone into the development of the COB-MS program to ensure that it targets such cognitive activities applied in real-world settings.

"As a result, we're hopeful that the program will benefit people living with MS on wide-ranging outcomes.”

According to the researchers, the program will assess the acceptability and feasibility of the program and the outcome measures and procedures used within it, among other considerations.

Anyone interested in taking part should be 18 years of age or over, living in Ireland, and with a diagnosis of MS.

Potential participants can email [email protected] or call on 087 449 1154.