Friday 30 September 2016

Irish MS sufferer- 'People should have the choice whether to live or die'

Having MS can be very difficult, but Naomi Donaldson tells Joy Orpen that she lives a mostly normal existence, thanks to excellent medical intervention, the support she gets from her sister and her newfound love of boxing

Published 14/03/2016 | 02:30

Naomi Donaldson, who has MS, says people in pain should have the choice to live or die. Photo: Dave Conachy.
Naomi Donaldson, who has MS, says people in pain should have the choice to live or die. Photo: Dave Conachy.

Naomi Donaldson (34) has taken up boxing, and she is also planning to walk 500km along the Camino de Santiago. Yet she is having to contend with a potentially challenging medical condition.

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Naomi lives in Rathfarnham, Dublin, with her husband Ronan, and Daisy, their much-loved boxer. For the past 14 years, Naomi has worked in a bank. "I am a customer-experience manager and love my job," she says enthusiastically.

Naomi's first indication that she might be heading into choppy waters, medically speaking, occurred in 2007, when she experienced eye problems. "The sight in my left eye went completely for two days," she explains. "My doctor thought it was due to the strain of long hours on the computer, but it slowly returned over three weeks."

In 2010, her younger sister, Rachel Hunter, also encountered problems with her vision. When doctors at the Royal Victoria Eye and Ear Hospital heard that their grandmother had died of multiple sclerosis (MS) at a relatively young age, they sent Rachel to St Vincent's University Hospital. Following a lumbar puncture and MRI scan, Rachel was diagnosed with MS.

Naomi says while Rachel's diagnosis was "horrific", it also brought their already caring and supportive family even closer together. At the time, Naomi was in the throes of planning her wedding to Ronan Donaldson, an engineer who installs satellite dishes. "Rachel was going to be my bridesmaid, so we threw ourselves into planning the wedding, and didn't dwell too much on the diagnosis," Naomi says. Some months later, Naomi experienced another temporary eye problem and soon after, she got scalded in the shower because her arm had gone numb. So she, too, was sent to St Vincent's, where she was also diagnosed with MS.

According to MS Ireland, this is a progressive neurological condition that can affect a person's health, lifestyle and relationships. It explains that MS causes myelin, the protective layer surrounding nerve fibres, to becomes damaged. This interferes with signals and messages from the brain to the rest of the body.

Following the devastating diagnosis, a neurologist outlined what options would be most suitable for Naomi. "I began treatment on July 7, the day we had the hair and make-up trial for my wedding," she recalls. "A nurse showed me how to administer the medication [by injection] myself, and two days later I tried for the first time. I kept picking up the needle and putting it down again. It took me about an hour and a half to give myself that first injection; now it's second nature." Naomi says it can also be hard on the spouses and other family members of the person with MS.

"Everyone worries about MS affecting my life and Rachel's life; but it takes its toll on others, such as my brother, David, and my dad, who are strong, silent types," she says.

About a month after that first injection, Naomi and Ronan married, and went on honeymoon to Spain. Soon after, she got involved with MS Ireland. "They do wonderful work, giving advice about social welfare, grants, medication and so on," she explains. "They also run a fantastic respite centre in Dublin."

So Ronan, Naomi and her family, decided to walk the Camino de Santiago. They had to raise €15,000 to cover expenses - a portion of which went to MS Ireland, who organised the eight-day, 186 km walk. "I absolutely loved it," says Naomi. "My mum, Rachel and I wept when we got to the end of the journey. It was so very special." Naomi plans to do the Camino again, when it comes time for her to celebrate her 40th birthday, and her mother, her 60th. They will walk for 500km on the French side, before finally crossing over into Spain.

In the meantime, Rachel and Naomi have taken up boxing. They go to Dublin Fitness Plus in Drimnagh and clearly love it. "Ronan thinks it's very funny!" says Naomi. "I haven't hit anyone yet, just the [boxing punch] bag, but soon I will start to make proper contact for my first fight in April." This time around, they'll be punching for Our Lady's Children's Hospital, Crumlin, and for Pieta House. Staying fit and healthy is definitely crucial in ensuring the best quality of life, especially for someone living with MS, a condition which, in most cases, is characterised by relapses and remissions. "Every person is different," explains Naomi. "I've only had three relapses in five years; each one lasting three to four weeks, and each one with different symptoms. During one episode, I couldn't walk for three weeks, as my legs had gone numb. It was terrifying. I couldn't take a shower and I couldn't wash my hair. I am normally very careful about how I look, so I got quite down.

"Eventually, I was taken to my mum's, and she spoiled me," she says. "For example, she made me the most amazing bath with candles and loads of bubbles. I sat in that bath and cried - because of my condition, but also because everyone was looking after me so generously."

Naomi was put on steroids and, following bed rest, got back on her feet. She has also begun a healthy-eating plan, which has been devised by a UK-based group called Overcoming Multiple Sclerosis (see overcomingms.org). It recommends lowering the intake of saturated fats, increasing unsaturated fats, taking certain supplements, meditating and exercising. "I have a lot more energy since I started the diet," she says. "I used to sleep nine or 10 hours a night, now it's closer to seven."

Naomi has no qualms talking about the controversy surrounding the right-to-die debate, which was recently highlighted in Ireland by a brave woman living with MS.

"I believe people should have the choice whether to live or die. When you are in unbearable pain, and have absolutely no quality of life, then you should be able to make that call. It shouldn't be the law that decides, it should be the individual," says Naomi.

Right now, she is in a good space. "Generally, I don't let MS interfere with my life," she says. "Anyway, I heard recently about a man in the UK who was in a wheelchair because of MS, who can now walk and ride his bike, thanks to a new stem-cell treatment. I have great faith that a cure, for many of us, is on the way."

MS Ireland's Kiss Goodbye to MS campaign continues until March 18. Wear red - lipstick or clothing - and share a kiss on social media (#kissgoodbyetoms) then donate €4 by texting SMOOCH to 50300. Or hold a fundraising event with a red theme; or challenge yourself and others to do something daring. For more information about MS Ireland, see ms-society.ie

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