A CAMPAIGN HAS begun to fundraise thousands to try to keep the country’s only respite centre for people with Multiple Sclerosis (MS) for an extra 10 weeks a year.
The MS Care Centre, located in Bushy Park, Dublin, is currently open for 40 weeks of the year. It provides therapies and activities for those living with MS.
The centre had been open for 50 weeks of the year in previous years, but during the recession this was reduced to 40. Now, the Multiple Sclerosis Society of Ireland has begun a fundraising campaign called “We Need To Be Open” to ask for the 50 weeks to be reinstated.
Multiple Sclerosis, a central nervous system condition, results in symptoms that can vary massively from fatigue and numbness, to memory loss and sometimes temporary blindness.
Most people are diagnosed between 20 and 40 years of age, and 85% of diagnoses relate to relapsing-remitting MS, which involves ‘relapses’ where you experience symptoms, and periods of time when you don’t.
But over half of these cases can develop into a more serious form of MS if early intervention isn’t taken.
The condition can manifest itself in a number of different ways depending on the severity of the disease and the person who has it. There are around 9,000 people in Ireland with MS.
‘My saving grace’
Karen Hynes was diagnosed with relapsing-remitting MS on her 20th birthday. With relapsing and remitting MS, you might experience little to no symptoms for a while, but might experience a relapse, or a really significant worsening of symptoms for 24 hours or up to a week.
At the time, she “didn’t have a clue” what MS was – she remembers telling the doctor “that’s impossible, I’m not in a wheelchair” when she was diagnosed.
She has lived with MS for 21 years, and has developed secondary progressive MS.
‘Secondary progressive MS’ is more progressive from the outset, and means there are less periods of time when you’re well.
Although MS is different for every person, Karen says that for her, this development “makes things a little bit slower for me”.
“Walking is not the easiest now, I use a walking stick, I have a wheelchair, but I’m fully mobile,” she said, adding that the walking stick is “there if needs be”.
She says she’s been through a “litany of treatments”, including one that resulted in her going into anaphylactic shock.
“I had to be taken off that very quickly,” she says.
‘Home away from home’
The MS Care Centre is an integral part of living your life with MS – it’s my saving grace, my home from home.
At the time of this interview, Karen was staying at the Care Centre as part of a group of friends that book their stay at the centre together twice a year.
“We are treated like royalty, we’re treated to luxury” Karen says. “The staff must have been handpicked, [for] their patience, their tolerance – they’re fantastic. We tell them what we want and what we need – and it just means the world to us.
When asked what they’ve been doing during their stay, Karen says: “I had physio there the day before – the physio is incredible, she is fantastic.
“Then we had yoga and it’s pure chill out, I love that. You can have a massage, too.”
“We play bingo at night and it’s such a laugh, you’d be in stitches laughing. We just make light of everything – we had a quiz last night [Wednesday night], the other team won but I think the other team cheated,” she said, adding that the other team called themselves ‘The Winners’, and her team had chosen the name ‘The Know F- Alls’.
She said that it was important for the centre to open for 50 weeks a year, as people are “crying out to get in here from all over the country”.
She said that you’d need staff in to cover the extra weeks, as the staff here are “run ragged”, but that despite this, “they still come in here with a smile on their faces, and ask: ‘So Karen what do you want for breakfast?’.”
The fundraising campaign said that this would cost €600,000 a year to keep the centre open for an extra 10 weeks a year. There’s more on the detail of this plan here.
“It’s an incredible amazing place. As I’ve been talking to you here now, two members of staff have asked if I want my breakfast in bed, or if I’ll go to the coffee dock for breakfast.”
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