Dealing with a life-altering stroke is not a challenge most of us would expect to strike us in our thirties or forties. Many of us believe that stroke is an illness that only impacts the elderly. Sadly, suffering a stroke under fifty is a reality for more people across Northern Ireland than we might expect.
As a result of this stigma around age, being struck by stroke while younger could very well be an extremely isolating experience. However, three young women who all went through this same life-altering condition last year have found support, rehabilitation and comradery at their local Northern Ireland Chest Heart and Stroke (NICHS) PREP programme.
PREP stands for Post Rehab Exercise Programme and is a service designed to provide additional support for stroke survivors after their statutory rehab has ended. Aimed at helping stroke survivors to rebuild their life and gain confidence following a stroke, PREP does this through a combination of education and physio-developed exercises. After redeveloping the programme to be delivered online via Zoom for 18 months during the pandemic, the charity has been delighted in the last few months to be able to return to delivering this life-changing programme face-to-face once more in communities across Northern Ireland.
It was at the Lurgan PREP programme that three amazing young mothers, Eilish, 47, and Jolene and Charlene, 34, met and shared their journey towards recovery, and here, share their stories of stroke.
“I was working away, a mum, perfectly healthy, and then boom - a stroke out of the blue.”
Jolene McAdam from Armagh was an ordinary, busy mum to three kids under seven when life as she knew it was turned upside down by a sudden stroke, aged just 34.
“I’ll never forget that day,” Jolene recalls, “It was 26th of May 2021. I was in the car travelling home from Portrush when I began to feel very sick and started vomiting. I thought nothing of it at first, but then all of a sudden, I saw a big white flash, like a camera going off, and I couldn’t see.”
“I thought it would pass in a minute because I would have been prone to visual migraines, but after a few minutes it didn’t go away and I started to really panic. We pulled up to the nearest doctors and when the doctor came out to the car, I could only see half of her.”
“The doctor said I could be having a type of migraine that mimics a stroke, or it could be a full blown stroke. She advised me to go to hospital, so we called an ambulance.”
Once the ambulance arrived, it became even more apparent something was very wrong with Jolene. “When the paramedics came they had to put me on a stretcher because I couldn’t walk. By this stage, I couldn’t move my whole right side. I started finding it difficult to communicate. In the ambulance, the paramedic was asking me questions and it came to a stage where I just shook my head at him. I couldn’t even think or understand. I remember him asking me my name and I told him my maiden name - I knew that wasn’t right, but I couldn’t remember what my name was.”
Jolene was brought to Antrim Hospital and began tests to find out what was wrong. “The doctors were assessing me, showing me pictures and seeing how much I could see. At this point my whole right side was completely gone. I remember looking down the bed and my arm was just hanging off the bed and I couldn’t move it. I couldn’t communicate - they were talking to me and all I could do was either nod or shake my head.”
“I was thinking, if this is a visual migraine this is horrendous and felt a bit embarrassed that I was in such a bad way. But then I was taken into another ward and I remember this woman coming up to me and saying ‘Jolene, you’ve had a stroke’. I just felt like her face, everything, just zoned out. It was a total shock.”
Jolene says, “It was difficult being looked after in hospital and losing my independence. I’m a nurse and look after people with disabilities so I would look after people in my job and having the roles reversed is really difficult to deal with.”
“I was terrified thinking I was going to be left not being able to do things for myself. I am so glad that I have progressed, and I am starting to do more for myself.”
“It took me a long time to accept what had happened. For me it was the wee things you lost independence in. I remember being asked if I wanted a bib to eat because I was spilling my food, and I thought, ‘No, I don’t want one, I don’t need one!’ I was determined and I wouldn’t accept that I had lost my independence - I was always pushing saying ‘I can do this myself’. I really wanted my independence back.”
When she was discharged from hospital, Jolene returned to a very different life than the one she had left behind that day. “It affected everything,” she says, “There’s not an area of my life that it didn’t affect. Being able to do things for myself, getting out and about, socialising. At the start, I couldn’t even have a conversation with anyone. When I came home, I could only see half the TV screen and I would have to turn my whole head to watch it. I couldn’t even tolerate the noise of the TV.”
“Everything was exhausting. I needed help with everything - cooking, cleaning, looking after the kids. My youngest, Kaiden, was only one and a half and I couldn’t change his nappy, I couldn’t even lift him to carry him or bath him.”
“Back then, after getting up and getting dressed, I was ready for bed again. Looking back now, I’ve come a long way from that.”
“Now it’s been about nine months since my stroke and I still have vision loss - I lost my peripheral vision in the right side of my eye. I also have numbness in my mouth and my tongue, and a slight right sided weakness. I was also diagnosed with Holmes Tremor after my stroke, which makes things really difficult.”
“It’s also very frustrating because people don’t understand, they think as nine months has passed I must be better, and to look at me I look fine. You can’t see the difficulties beneath the surface.”
Jolene was first contacted by Northern Ireland Chest Heart and Stroke’s Stroke Team during the pandemic, and took part in their online PREP Education Programme and outdoor Stroke Walking Group. Now, as COVID-19 restrictions have eased, Jolene was invited to come along to one of the first PREP programmes in Lurgan as it returned to face-to-face delivery.
Jolene says, “Getting out to the group is brilliant - otherwise my life would just consist of being in the house, looking after the kids. It’s really hard to get out and about and socialise since my stroke. I can’t drive and I live in a rural area, plus with my fatigue, I’m not able to do a lot of things. For example, if my friends are meeting up to go to the gym, I’m not fit to do that like I used to. With the group, it’s the emotional support of having people who have been through it and totally understand which is so important. It was brilliant to meet the other girls and see that you’re not alone – we’re all young mums, going through the same thing.”
As a young woman as well as a mum, the concerns of every life have completely changed for Jolene. She says, “When someone suggested going somewhere before my stroke, your worries would have been, have I got something to wear? I wonder am I off work? Now I think, can I go there, would I be fit to do that? Would I have enough energy, would I have to walk far? I was invited to a wedding recently and I was thinking, what kind of shoes will I wear, because I can’t wear high heels anymore. How will I get my hair done, my makeup done? I can’t do those things the way I used to. For someone like me who is young, you want to be able to go out and feel nice. Even shopping for an outfit is a total chore – I need a seat in a dressing room because my balance isn’t great, and even the energy to walk around the shops- I’m just not fit for it. Before, I would have been the type of girl to jump in the car and go up to Belfast shopping, I would have been queuing in Primark! But all that has changed.”
However, with the support of the PREP group, Jolene is determined to keep recovering. “I’m still not driving and that’s the next big thing for me, and I would love to get back to work. I hate saying life is hard, because that’s so negative. Life has changed, but it’s about looking at the things I can do.”
Charlene Edwards from Lurgan was only 34 years old, a mum to two boys, when she had a stroke on the 23rd of October 2020.
Charlene says, “I was in my brother’s house and I was having a drink for his birthday. I started feeling really dizzy, so decided to head home. When I got into my house, I went to the bathroom and was sick. Then, my symptoms got much worse and I realised I was having a stroke. I lost power in my leg and hand on my right-hand side, and my ability to talk. I managed to crawl to my bedroom, but I couldn’t get up on the bed. I lay there waiting for someone to find me all night. My dad didn’t come down until the next day, when he called an ambulance.”
Charlene was brought to Craigavon hospital where she was told she had suffered a massive stroke. She was then transferred to Belfast, where she underwent surgery to have a stent fitted in an artery in her neck.
Following her operation, Charlene faced a long road to recovery ahead. “I was in hospital for six weeks and I couldn’t speak a word when I got out. I stayed at my mum’s house for the first week, but I have two boys, Odhran who is twelve, and eight year old Daitihi, and I care for my oldest as he uses a wheelchair. I wanted to get back home for them.”
Gradually, with the help of a Speech and Language Therapist and Occupational Therapist, Charlene’s speech and right-sided weakness began to improve. “They gave me exercises to do which helped, but my speech is still coming back now. It’s called Aphasia. I still jumble my words and find it hard to communicate. I would be helping my son get ready for school and I would say, ‘Put on your jumper’ when he already had his jumper on, and I’d do the same with his shirt, his coat…it would take me much longer to be able to say what I mean.”
Charlene then heard about the local Northern Ireland Chest Heart and Stroke PREP programme. “It was actually Jolene who told me to go to the group. I knew her through a mutual friend, and then one day my mum bumped into Jolene’s mum, who said ‘Our Jolene had a stroke’. My mum said, ‘So did Charlene!’ We got together and I started going to PREP.”
“The PREP group is brilliant – we were made really welcome. The physio gives us lots of exercises to do with my right hand, and it’s not back to normal but it’s getting there slowly. Although the others at the group don’t have aphasia like me, it’s still helpful to speak to them and we can all share what we’re going through.”
What advice would Charlene give to someone who’s going through what she went through? “Keep going – it’s not the end!”
After suffering a devastating stroke last year, 47 year old mum of four Eilish Briggs from Banbridge says the NICHS PREP programme ‘saved her’.
A carer to her teenage son, Michael, it was a normal, hectic day for Eilish when she was struck by her stroke. Eilish says, “I was getting Michael ready when my face started to feel funny. I looked in the mirror and I could see my mouth was drooping on the left hand side. My twin sister has Bells Palsy and sometimes her face would droop because of that. I thought, oh no, is this going to be me now with the same thing?”
“I carried on getting Michael ready and the droop was getting worse. Then when I’d finished, I took a picture of my face and sent it to my sister. She replied and said you might be having a stroke, you need to get seen to. I sent the photo to another friend too and she phoned me straight away and said the same, and told me to call an ambulance.”
“My boyfriend at the time drove me down to Daisy Hill Hospital, and while we were on the way, my arm and leg began to go numb as well. When we got into the hospital it was all systems go. I have no concept of time while we were in there, but they took me for a CT scan and told me I’d had a stroke while I was still lying in the scanner.”
“They gave me Thrombolysis treatment and I was transferred to the stroke unit, where I stayed for nine days. I was seen by a physio and some of the movement came back in my arm and my leg, although they felt extremely heavy and I didn’t have much grip. My speech had also been affected but it came back too. I thought to myself, ‘Thank goodness I’m okay’ – but I didn’t know yet just how much it would affect me mentally.”
Eilish is now passionate about raising awareness of the invisible impact a stroke can have on a survivor. “Everybody knows the signs of a stroke and F.A.S.T. but nobody is aware of how it affects people, even as they get their mobility back. It can be the other stuff that can be just as hard to deal with. It affects your thinking, your understanding. When you’re really tired, that side of my face can droop again and my leg would get heavy and its nearly like it’s happening all over again – it’s very scary. And the fatigue just hits you – it’s an absolutely shocking part of it.”
“People look at you and they think you look fine, so you must be fine - and you’re not. You’re struggling on.”
Eilish has also felt all too well the impact her stroke has had on her role as a mother. “My son Michael needs a lot of help with care and treatments, and my other son, Adam, had just started high school in first year when I had my stroke. It was a big transition for him and I felt awful I wasn’t able to be there. My kids are so good and understanding, they will take a look at me and say, ‘Mummy, you need to go lie down’. But it is still tough.”
“I was a big home cook before, but I couldn’t even think now what I’m going to make or what I need to do to cook a recipe. Noise also affects me now and it’s terrible because I used to love it when my kids would all come in and they’d be in the kitchen, all laughing and carrying on, shouting and squealing, but now I can’t deal with it.”
“I’m missing out and they’re missing out on their mummy being her normal self.”
Eilish was referred to the NICHS PREP Programme, and has found it to be a lifeline for her. “The PREP programme I feel has saved me. I felt completely and utterly lost. As much as my family are great, nobody truly understands how it affects you emotionally. You don’t react to things the same way - sometimes you just feel completely and utterly numb, or sometimes you overreact and might break down crying over something small. But with the group, being able to talk to each other about what’s been going, how we’re feeling, what we’re struggling with and them understanding is so helpful. I no longer feel I’m alone.”
“With the other girls, and everyone at the group, even though we all might have been affected in slightly different ways or to different extents, we all understand, we all listen and we can all bounce things off each other.”
“The physio and the exercises we do at the group are also brilliant – I do them at home after the groups and I’ve been noticing a big difference in my weak side. We also have information sessions about stroke and our health with a cup of tea or coffee at the end, and it is so beneficial as well. There were things I never knew about fatigue that I’ve now learned and it helps make what you’re going through make sense. It’s relatable.”
To someone going through a stroke like her, Eilish says, “Go along to the group as soon as you can and get that support - because you need it.”
In 2020/21, Northern Ireland Chest Heart and Stroke supported 1,071 stroke survivors across Northern Ireland.
Noelene Hughes, Head of Stroke Services, says, “Suffering a stroke is a life changing reality for thousands of people in our local community every year. As well as the negative impact on physical wellbeing, stroke can reduce independence, confidence and happiness. Every day our stroke support co-ordinators, who work all across Northern Ireland, witness how stroke can also affect relationships, take away jobs and careers and render some families isolated within their own homes.”
The charity offers a range of services for people affected by stroke and their families, including their Stroke Family Support Service, PREP, Taking Control Self-Management Programme, which aims to help people learn to manage their long term condition day to day, and long term Surviving Stroke monthly wellness sessions, as well their Carers Education Programme for those caring for someone who has had a stroke.
Noelene continues, “Our care pathway supports the stroke survivor on their journey from hospital to home and right through to long term support programmes. As a charity, it is thanks to the public and local people in Northern Ireland that we can be there for people like Eilish, Charlene and Jolene as almost 90% of our work is funded by donations.”
To find out more about Northern Ireland Chest Heart and Stroke’s work and the support they offer, or to make a referral to get support, visit www.nichs.org.uk.