Janine North

Peer Leader Stories

Janine - Hayling Island Support Group Peer Leader

 

Before Her Stroke 

Before her stroke, Janine led a busy, fulfilling life. Following a career in nursing and health visiting, she ran a scrapbooking business, organising creative weekend retreats. In addition, she was an active Mum and grandparent, so life was full. Shortly before her stroke, Janine’s father passed away, leaving her mother alone. It was a very emotional and difficult time. 

Stroke Onset 

Janine’s stroke happened in September 2019. She and her husband were getting ready to go for a walk when he asked if she wanted a cup of tea. Janine realised that she couldn’t get her words out to form a reply. That was the first sign something was wrong. 

Her husband called 111 and they went to the hospital where tests confirmed she had experienced a stroke. Janine was frightened and confused. She had been living healthily and couldn’t understand why it had happened. 

Looking back, she’d known something wasn’t right. A few months earlier, she had visited her doctor and was awaiting tests. In the November following her stroke, a 24-hour ECG revealed atrial fibrillation, and she later had a pacemaker fitted. Her blood pressure was very high – around 220/34. Janine felt angry that she hadn’t received the care she needed in time. 

Early Days 

In the early days after her stroke, Janine felt low in mood and lacked motivation. Initially, she received some speech and language therapy, but the Covid-19 pandemic brought this to a halt. Janine was unable to visit her Mum and lost contact with her family. It was a very difficult period.

 

It's like watching a film out of sync – it takes a while for the words to catch up.

 

Communication

Janine can speak, but she has to take things slowly. Short conversations are manageable, but longer or more personal discussions can be difficult. 

Janine finds it easier to understand people if they speak slowly. She describes it as “like watching a film that’s out of sync” – the words take a while to catch up in her head. When people speak too quickly, she can lose track of the conversation. 

Texting can be easier, though she still needs help from her husband to find the right words. Some friends are patient and give her more time to speak, while others struggle to adjust. Family gatherings can be especially tiring – Janine often just sits and watches. Her family give her time and space to speak, but the words disappear before she can finish. Her hearing difficulties, which existed before the stroke, have also worsened, making communication even more challenging. 

Janine remains very close to her husband, but she describes feeling “alone in my head”. Previously outgoing and confident, Janine now feels very different about herself. She misses singing songs with her grandchildren – something she used to love. 

Living with Aphasia 

Janine finds it particularly hard to communicate with people who don’t know her well. Only recently has she begun doing small tasks independently again, such as shopping. Her Say Aphasia support card has been helpful; it explains to others what aphasia is and how to communicate clearly and patiently.

Her scrapbooking business became too complicated to run, with forms, numbers and costs. Just before Christmas, Janine’s daughter died, which was very painful to deal with. Her daughter had provided support in running the business, and without that help, Janine made the decision to close it. 

At home, Janine and her husband often watch TV together. They have to pause frequently so that she can follow and respond to what’s happening. They also enjoy going to the theatre, where Janine uses the hearing loop, lip-reads and follows on-screen subtitles to help her concentrate and stay engaged. 

Finding Expression Through Art 

Art has long been one of Janine’s passions, but since her stroke it has helped her to cope with her emotions, especially feelings of anger. One sleepless night, she began scribbling and ended up creating a completely new piece of work. In June 2025, Janine curated her own art exhibition in Chichester. She also continues scrapbooking and is currently working on her youngest daughter’s book which is filled with photos, school reports, milestones and memories. 

 

Becoming a Say Aphasia Peer Leader 

Janine first heard about Say Aphasia online and began attending a group in Chichester. There, she found understanding and encouragement from others who shared similar experiences. Inspired by this, she decided to start a new Say Aphasia group closer to home on Hayling Island. 

Janine placed an advert in the paper and contacted nearby GP surgeries and the local volunteering service. Soon enough, the group began to grow. 

The group meets regularly to create art, listen to music, use conversation cards and play games like Scrabble, Rummikub and Cluedo. Janine describes it as relaxed and supportive. She explains that the real value isn’t just in the activities – it’s in the connection and conversation that happen naturally between people who understand each other’s challenges. Janine has made friendships through the group. She continues to receive encouragement from the Say Aphasia team – Lauren, Emma and Colin – who have supported her in growing the group.

 

Moving Forwards 

It took time for Janine to accept that her aphasia is permanent rather than temporary. Although her speech may never return to what it was, she has made significant progress since those early days. 

Janine believes that finding new ways to communicate, staying connected and being supported by others are key to living well with aphasia. Her message to those newly diagnosed with aphasia is to:

Hold on. Keep going. Find different ways of doing things with the help of other people. Don't ever give up.

 

– Written by Eleanor Daniels

 

 

 

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