Young Women After Stroke group helping break the silence of aphasia
The debilitating effects of stroke leave thousands of women speechless across the north but Gail Bell finds out how many are finding their voices again
IT is always the little things you miss most and for Co Armagh mum Sharone Young and husband Darren, having a bit of craic was one of the first small enjoyments lost to their suddenly shrunken new life post-stroke.
For the busy nurse and mum to two young children, communication – and lots of it – had been an integral part of daily life. Then, with brutal swiftness, a stroke intervened and unfamiliar silence descended upon the chatty, happy family unit.
Speaking about her experiences six years later to highlight the work of the Stroke Association and its recent Lost For Words campaign, is something Sharone – now aged 46 – thought she might never be able to do.
"At one point I thought I would never be able to talk again," she says down the phone from her home in the small village of Milford outside Armagh. "I couldn't utter a word when I had my first stroke and that was the most frightening feeling. I didn't leave the house for a whole year."
She chats easily, albeit with some hesitancy, and despite what has undoubtedly been a remarkable recovery, it is clear that Sharone has to think hard to recall words that once tripped effortlessly off the tongue.
But it is only due to her own painstaking efforts with rehabilitation, as well as support from family and friends, that she is now living life again – and attempting challenges she never would have dared to before.
After two strokes in quick succession, a bleed on the brain, epileptic fit and seven-month stay in hospital, she has continued to push boundaries by taking part in an awareness-raising abseil in Belfast, posing for a Calendar Girl-style calendar and modelling in a fashion show organised by the groundbreaking Young Women After Stroke group.
In addition, she puts her nursing skills to good use by volunteering with St John's Ambulance once a week.
"I was so scared after my first stroke that abseiling down a high building didn't seem so frightening any more," she says. "Nothing was as scary as waking up in hospital and not being able to talk and being paralysed down one side.
"Also, I didn't know I had been unconscious for 10 weeks, so if now I need a little help walking up the stairs, I remember to be thankful that I can walk and talk at all."
For Sharone's husband, Darren, it has also been a slow, arduous journey back to what he calls a new kind of normal.
The "wild craic" the couple used to enjoy is no longer quite as wild, but every day there are new goals to pursue with a renewed sense of hope for the future.
"It is important to set goals, to keep going, while adapting to a new perimeter roped around your life," he says. "Confidence is a big issue, as well as determination. The ability to do mundane things like vacuuming is never taken for granted now and there are good days and bad days, but you work through them.
"Young Women After Stroke played a vital role in Sharone's recovery and we would both have struggled without it. I would say it has given Sharone her confidence back and shown her that there are many other women out there who have also gone through stroke at an early age. No matter how isolated she feels, she's knows she's not the only one."
The group – believed to be the first of its kind in Europe – meets every fortnight in Brownlow Community Hub in Craigavon and was set up by Valerie Dale, Stroke Association stroke recovery co-ordinator.
"My mum was only 29 when she had her first stroke, so I had a personal interest in seeing a group like this help other young mothers," Valerie says. "I was eight years old when it happened and it changed our lives. She was 37 when she had a second stroke and I cared for her until she died, aged 47."
It was the early introduction to the devastating consequences of stroke that prompted Valerie to train as a nurse and later led to her self-funding a degree in Community Development at Ulster University.
"In my final year I carried out research on what was available for stroke survivors and what was needed in terms of support, so this was really the catalyst for starting up the Young Women After Stroke Group," she adds.
"I had identified an unmet need and it really struck a chord when later I spoke to younger stroke victims who all conveyed intense feelings of isolation and a feeling of having lost their role as women and as mothers."
Today, it is a full-on agenda, with the group now having 20 core remembers and three more set to join ahead of its second anniversary in February which will be celebrated with the launch of a new project – a children's book.
"It's a picture book setting out the facts why mummy might sometimes cry or have a sore head, but telling young children that she still loves them," Valerie explains. "Children can be frightened by the changes that come with stroke, so we hope this will send a positive message.
"Our youngest member of Young Women After Stroke was nine years old so restoring communication at any age is vital.
"My own mum was cared for in the general ward of a hospital with no rehabilitation or anything, but thankfully that is no longer the experience of stroke victims today. I will always wish, though, that she had a group like this and that stroke had not robbed me of hearing my mum's last words."
The Lost for Words campaign which ran over the Christmas period had a "huge" impact, according to Brenda Maguire, campaigns manager with the Stroke Association which works to help the 10,000 people living with aphasia in Northern Ireland.
Led by stroke survivors from around the UK – including businessman Andrew McCracken (52) from Dundonald – the campaign aimed to increase awareness of stroke-induced aphasia and was supported by broadcaster Noel Thompson.
"My mother-in-law literally suffered in silence and spent eight years without ever speaking a sentence," Noel, a a long-time supporter of the charity, says.
"We tried, with limited success, to teach her to talk again with the help of flashcards. She understood every word but, sadly, couldn't say one back– that is the tragedy of stroke.
"There is a real sense of loss of self and that is traumatic for the sufferer and loved ones who often feel helpless, but the really positive message today is in the stories of recovery and the incredible things that people can now achieve with help from groups like the Stroke Association."
:: Anyone affected by stroke can contact the Stroke Association on 028 9050 8020 or visit www.stroke.org.uk
:: A stroke is a brain attack which happens when the blood supply to the brain is cut off, caused by a clot or bleed.
:: Around 10,000 people in Northern Ireland have aphasia, that is, difficulty speaking or understanding because of damage caused to the brain, after having had a stroke.
:: More than 35,000 people live with long-term effects
:: In Northern Ireland, there are around 4,500 strokes and Transient Ischaemic Attacks (TIAs – mini-strokes) every year and 1,000 stroke-related deaths.
:: Stroke kills twice as many women as breast cancer and more men than prostate and testicular cancer combined annually.
:: The average age for someone to have a stroke is 77, but a quarter of strokes occur in people of working age.
:: Eight per cent of deaths per year among women in the UK are caused by stroke.