Information and support

“My Stroke Guide made me realise there’s life beyond stroke.”

- Claire, stroke survivor 

In 2010, 19-year-old Claire collapsed on the underground. The doctors thought she was suffering from anxiety, but they later found out she’d had two devastating strokes. Claire’s vision, hearing and speech were affected, and she experienced difficulties with coordination and mobility, which meant she had to use a wheelchair. 

“I was scared that I was going to die,” remembers Claire. “And all the things I loved, like playing football and plans of becoming a teacher, had been snatched from me. I felt like I was never going to have a purpose again.”

When Claire was discharged, the rehab stopped and she was left to cope with the devastating emotional impact of stroke, as well as the physical disability.  Three years after her stroke, Claire discovered My Stroke Guide.

“I could access support and information about stroke, wherever and whenever I needed to. Reading comments from other people who were feeling the same as me helped me to realise that I wasn’t the only one.

I would recommend it to carers too. I couldn't express how I was feeling to my mum, so I told her to go on the My Social forum. She read the messages from stroke survivors and carers and that helped her to understand what I was going through.” Claire also used My Stroke Guide to access the information and advice to help her understand more about the effects of stroke. “I enjoyed the videos because they gave me an overview of the facts. For example, when I was extremely tired for no reason, I searched My Stroke Guide and found a video that explained that it was completely natural. This has helped me to move forwards.” 

Now working as a Community Stroke Support Assistant, Claire regularly demonstrates My Stroke Guide to both stroke survivors and carers. “Having access to the information and videos gives them confidence, and the forum allows them to talk to other people who’re going through similar struggles, helping them to feel less isolated.”

“I use My Stroke Guide to demonstrate there is life after stroke.”

- Camille, healthcare professional

Camille is a Clinical Psychologist in Neurorehabilitation at Croydon University Hospital. She has many years’ experience working in acute and community stroke rehabilitation. 

Since coming across My Stroke Guide, Camille has recognised how it can support staff within the stroke ward, and bring great benefit to stroke survivors throughout their recovery.

“Various therapists, including those on the ward and in the community, are now introducing My Stroke Guide to their patients,” says Camille. “It can be used to provide information about common issues after stroke and sources of support. I feel the interactive format really empowers stroke survivors and their families to take control of their recovery.”

Camille believes that My Stroke Guide could play an important role in the ward as it continues to evolve. “During a current research project the university are participating in, current and former patients have been involved in redesigning the ward. There has been great interest in drop-in sessions for both patients and families, where My Stroke Guide can be incorporated.”

As a new and innovative way to support both the stroke team and stroke survivors, Camille sees My Stroke Guide as an opportunity to demonstrate that there is life beyond stroke.