Information and support | My Stroke Guide

 What is stroke?

Click on the video to the right to find out how a stroke affects the body.

  • My Stroke Guide gives you free access to trusted information about different types of stroke, risk factors and secondary conditions.
  • Our online community also connects you to thousands of others so you can share stories and tips, and find out how they manage recovery.

Register now to view over 200 videos just like this.

What is My Stroke Guide?

If you have been affected by stroke, My Stroke Guide can help. 

We have worked alongside stroke survivors and their family to create a website for online stroke support.  

My Stroke Guide provides you with:

  • an online forum to share experiences and ask questions 
  • easy-to-read information about stroke and its effects
  • a library of over 200 videos, offering advice about stroke and recovery

Practical advice and tips to help understand stroke and its effects is available 24 hours a day, 7 days a week.

My Stroke Guide works on all devices that have access to the internet: computers, tablets, laptops and smartphones. 

 Register here 

For more information and support on how to use My Stroke Guide and help you navigate the site, please visit our Help page.

Stroke and Coronavirus (COVID-19)

I'm a stroke survivor, what does Coronavirus (COVID-19) mean for me? 

Stroke survivors have been telling us that they are worried about coronavirus (COVID-19). Most people who get the infection will recover quickly, but some people can have more severe symptoms, including pneumonia. 

We have put together information on stroke and coronavirus (COVID-19) onto our Stroke Association websiteEasy read documents are also available. This was created in partnership with NHS England and will be updated regularly. It is for all stroke survivors in the UK.

The web page is designed to help you understand what you can do to stay healthy. We provide links to the main official sources of guidance. We’re unable to provide medical advice about coronavirus.

The Stroke Association can support you with information and advice on stroke. If you need medical advice, please visit the NHS Coronavirus webpage.

Our Helpline is here on 0303 3033 100 if you need someone to talk to.

To find out what we’re doing as an organisation, including pausing all our events and groups in the community, you can read this note from our Chief Executive Juliet Bouverie. 

Stroke Apps

We know that it might not be as easy for you to get the help you need at this time.

The NHS have recommended a list of apps that are suitable for those who have had a stroke and have been found to aid rehabilitation. The list of apps covers many different topics, from eating to exercise.

The list of apps can be viewed here.

Stroke News

Stroke News offers loads of helpful information and advice on how to enjoy life after a stroke.

Each edition includes details on the latest stroke research as well as compelling case studies from a number of stroke survivors. Have a read about former IT teacher, Rick Heins' experience of My Stroke Guide here.

Make sure you don't miss a magazine. Subscribe to our future editions available in print, on audio CD, or via email.

To change your subscription preferences or to unsubscribe, please contact  strokenews@stroke.org.uk or call 01604 687 721.

Webinars

AbilityNet is a registered charity (supported by IBM and Microsoft) whose focus is to change the lives of disabled and older people by helping them to use digital technology. 

Technology and help for stroke survivors webinar

AbilityNet hosted a free webinar on Tuesday 31st March where they offered information and support on how technology can make life a little easier for people after a stroke, and those who are caring for them. 

AbilityNet webinars

is also a series of online free webinars on a range of topics such as communication aids, accessibility and assistive technology. They also run free and regular events on AbilityNet Live! 

To find out more please click here, you can also subscribe to their mailing list if you'd like to be notified of upcoming webinars. 

Blog

Sharing our stories is now more important than ever, so why not start with our new blog series by people affected by stroke, sharing their experiences of social distancing. 

Videos

You can now view our series of videos on exercise after stroke, ranging from topics such as tracking your progress to arm and hand exercises.  

To start viewing, simply click play on the video below. To see what else we have on our playlist, click the three-line icon in the top right-hand corner of the video player. Alternatively, you can also visit our YouTube channel. 

You can find more information about exercising after stroke on the Stroke Association website.

 

You can now also watch our playlist of Bex Townley from Later Life Training introducing ‘movement snacks’. These are short videos which will help you to get moving in the comfort of your own home. 

The Stroke Association has developed these videos in collaboration with Later Life Training. They are intended to support the rehabilitation needs of stroke survivors but may not be suitable for everyone. Before using these videos, please discuss their suitability with your doctor or stroke health professional.

 

 

Stroke Publications

Stroke Publications

Find detailed health information on a range of stroke-related topics. Our publications provide accurate and accessible health information for stroke survivors, carers, friends and family. 

We publish our information about stroke in a range of European and South Asian languages. Available in an accessible format including audio, braille and large print. 

If you have trouble understanding speech, it can also be hard to read. For more advice about communication support, call our Helpline on 0303 3033100 or email helpline@stroke.org.uk

Claire's story

“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.”

Bill's story

“I always wanted to get back to driving again. My Stroke Guide helped me do just that.”

- Bill, stroke survivor 

Bill Cowe had only been retired for two weeks when he had a stroke in 2017. The 52-year-old former Police Officer had just returned from dropping his son off at school when he began to feel extremely tired.  

“I went to bed to get a couple of hours sleep to see how I felt,” recalls Bill. “When I got up, half my body was affected on the right-hand side. I’d had two strokes, which affected both sides of my body from the neck downwards. I also couldn’t swallow or speak – I harboured some pretty dark thoughts at the time.”

Bill was keen to do all he could to adapt to life after stroke when he got home from hospital. “I used My Stroke Guide as part of my general recovery and it helped me to make sense of my stroke. I used to be a Class 1 Pursuit Driver in the police, but after the stroke, I learnt that I had to re-sit my test again. I looked on the My Stroke Guide section about driving, which gave me advice about what I needed to do. That pointed me in the direction of disability centres, and the subsequent assessments I did to pass my driving test. I am driving now, so that had a massive impact on me.”

“Thanks to My Stroke Guide, Bill feels much more positive about his recovery.” 

- Andrea, carer

Bill also found that My Social offered him the opportunity to share experiences with other stroke survivors online. “My Stroke Guide gave me reassurance. I would go online and check things out, and I would speak to people. Being able to communicate and exchange messages with other stroke survivors about what they’re going through on a daily basis had a really positive effect on me.”

Today, Bill works as a Stroke Ambassador for the Stroke Association, and now over a year after his stroke, he continues to see improvements in his mobility.

Camille's story

“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.

About our information

We want to provide the best information for people affected by stroke. That’s why we ask stroke survivors and their families, as well as medical experts, to help us put our publications together. We review our information regularly to make sure it’s accurate and up-to-date.

If you would like to see the sources used for a topic, please contact us on mystrokeguide@stroke.org.uk

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