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'I was paralysed by a stroke when I was nine... but I'm proof there is always hope'

Published 29/12/2015

Fighting back: stroke survivor Kerry Edgar
Fighting back: stroke survivor Kerry Edgar
Standing proud: The Young Women’s Stroke Support Group
Stroke survivor Kerry Edgar with her kids, Madison and Jaden

Without the blurb, who would ever guess this group of feisty ladies has each suffered a stroke? And that includes a few of them struck down in their 20s and 30s, and two in their childhoods. Some of these survivors have been left with mobility and speech issues; some are relatively unimpaired, and every single one of them is an inspiration.

As members of the Craigavon-based Young Women's Stroke Support Group - the UK's only such under-55 female organisation - these brave survivors have gamely posed for a fundraising Strip For Stroke calendar, currently selling like hot cakes from selected shopping centres and through Facebook.

"We've been inundated so far," said Valerie Dale, a former nurse who set up the pro-active support group.

"The girls all thought I was crazy when I announced the idea and I had to coax some of them to strip off, but it was all about making them feel feminine again and it gave them such a boost."

From Moira, Valerie was only eight years old when her late mother, Sally, suffered her first stroke at 29, and a teenager when she had her second, which left Sally paralysed and speechless. For Strip For Stroke, Valerie was inspired by the story behind the Calendar Girls (2003) film and the countless charity projects that it has spawned ever since.

"The ladies from our Young Women's Stroke Support Group have not been as badly affected as my mother but stroke still leaves its calling card, physically and psychologically," she says. "I am so proud of them for all the great strides they've made this year. They got up on the catwalk for our fantastic fashion show in Lurgan Town Hall in the summer and then stripped off for our calendar. They are all great examples of the fact that there is life after stroke."

Kerry's Story

According to the latest health statistics, three times more women will die from stroke than from breast cancer - and those affected are getting younger, with the average age falling from 68 to 41. Calendar girl Kerry Edgar was just nine years old when she suffered a transient ischemic attack (TIA) stroke, which left her paralysed and unable to speak. Now 26, the holistic therapist and part-time student lives in Craigavon with her husband Steven, a chef, and their daughter Madison (8) and son Jaden (6). Kerry is expecting her third child in the early summer. She says:

I was outside playing one day, when I was nine, and I got this very, very sore headache. It was really extreme; nothing like a hangover or stress headache. I collapsed in the house and dad thought I was choking on the painkiller he'd given me. I was trying to speak but I couldn't get the words out. Then I fainted and was rushed to Craigavon Hospital.

They didn't know what was wrong but knew it was serious. They sent me to the Royal Hospital in Belfast for an MRI and that showed a stroke on the left side of my brain, which controls the right side of the body. I was completely paralysed and couldn't speak for eight weeks.

All my thoughts were the same and I felt like I was like a postman who could only notice one side of the street and who thought both sides of everything were the same. It was terrifying, not being able to communicate. That's where my anxiety, now, comes from. I don't know how my parents got through it. I'm sure they had their moments but they didn't show it to me. The doctors at the Royal were great and put a lot of effort into getting me better. They told me "This will not wreck your life" - and it didn't.

I had to learn to walk and talk again, though, and it was a year or so before I was properly recovered. Looking back, there wasn't enough emotional support in place but my parents were incredible. I had to skip the last year of primary and go straight into secondary. I pretended the stroke hadn't happened; I just wanted to be normal, like everyone else.

Then, after I had my daughter young, at 18, I suffered depression. I was so low; I couldn't control it. It was a difficult birth, with a 36-hour labour, but they couldn't give me a C-section because of my stroke history. It could have been partly post-natal depression but when I became extremely fatigued and had to have had another MRI, they discovered I had produced no dopamine (which controls mood) in my brain since I was nine.

They put me on anti-psychotics, which were awful - I was nauseous and spaced out, and couldn't sleep. I'd be up in the middle of the night cleaning, but at least I knew what was wrong with me. I eventually weaned myself off the medication and increased my dopamine levels through eating the right food, exercise and socialising. When I have nothing to do, I start to feel down and worthless, so I throw myself into work and just keep going. It's like when you're clearing out a room and the dopamine starts flowing, you can go and do another, then another. You get energy from it.

For my second pregnancy, I was put on blood thinning injections. I had no clots and the birth was fine, so I'm having a section with the next one.

I was lucky in a way that I responded quickly to the treatment for my stroke because I was a child and my brain cells were still forming. I still have the very odd bit of trouble with my speech, which is a good excuse if I'm in the pub.

But there are others in the group who have speech impairments and get annoyed about it, and that brings it back to me.

We had great fun doing the calendar. Valerie, who organised it, had to coax me into it and there were a few not overly keen. But I see my role in the group as one of giving hope, and to show that a stroke doesn't necessarily ruin your life.

We all have our own story and we look relatively normal in the pictures. It was daunting and it took a lot for some of us to put ourselves out there like that. I don't like being the centre of attention but it was worth it to shine a spotlight on stroke."

Finding help after a stroke

The Stroke Association is the only charity in Northern Ireland dedicated to stroke, with 28 support programmes it is spread across all five health trusts.

Its Beyond Words project, a partnership between Cruse and the association, provides a range of bereavement services for people over 60, stroke survivors and carers, as well as those living in sheltered accommodation.

The association also runs a Strokewise Project with the University of Ulster, a volunteer development initiative consisting of four strands:

  • S.T.A.R (Speech, Theatre, Art and Role-play), a volunteer skills development programme using drama to enhance the skills of stroke victims with the goal of raising awareness of stroke and aphasia (speech and language disorder)
  • Lessons for Life: a prevention programme for school pupils focusing on exercise, healthy diet, alcohol and smoking cessation in relation to stroke
  • Experts in Aphasia provide workshops where survivors educate student therapists on the impact of living with aphasia, before they take part in clinical placements
  • Graduate Programme for speech and language therapists: graduates gain experience, by leading communication support programmes

Stroke Association NI is part of the All Party Group on Heart Disease and Stroke, a forum for discussion on prevention, rehabilitation and treatment, for health professionals, MLAs and this people with these conditions.

Stroke Association Northern Ireland's offices are located at Rushmere House, 46 Cadogan Park, wBelfast BT9 6HH. Phone: 028 9050 8020

Email: northernireland@stroke.org.uk Twitter: @strokeassocni

Facebook: www.facebook.com/strokeassociationni

Belfast Telegraph

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