About My Stroke Guide | My Stroke Guide

On this page you will find information about My Stroke Guide and technical support on how to use this site. This includes links to user guides, a video tutorial as well as a list of frequently asked questions (FAQ) that will help you navigate and use My Stroke Guide. 

What is My Stroke Guide?

Welcome! 

On this page you will find out more about My Stroke Guide, how to use it and how we ensure the information is trustworthy.

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:

Practical advice and tips to help understand stroke and its effects are 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 

User guides

We have a number of user guides to help you use My Stroke Guide. You can download and print the user guides below or watch our video tutorial:

If you need help with:

  • using the site
  • registering a new account
  • using the forum and social areas
  • questions about finding relevant information

Please email us and we will reply to you within 48 hours. 

Email: mystrokeguide@stroke.org.uk

 

 Frequently asked questions

Below you will find answers to frequently asked questions about using this site. 


 My Stroke Guide looks strange on my iPhone or iPad, how can I fix this? 

It is likely that if My Stroke Guide is not displaying properly, that your version of iOS isn't up to date. Try updating your version of iOS to resolve this problem.

 How do I turn subtitles on when watching the videos? 

At the bottom of the video screen, just after the play bar and next to the cog logo on the bottom right, there is a grey rectangle with the letters CC in it. Click on this and select ‘English CC’.

 I have a sight impairment, how can I see My Stroke Guide better? 

In the bottom right corner, there are three A’s in coloured circles. Clicking on one of these will change the colours to suit your visual needs.

 Why can't I see the content that I want? 

My Stroke Guide is regularly updated with new Advice and information pages, and videos. In addition, there is the Information for family and friends which does not automatically appear to people who are registered as stroke survivors.

If there is a particular issue that you want to find out more about, you can write about it in the forum or email My Stroke Guide to let us know. We look forward to hearing your suggestions.

 I remember seeing an article last time I was here, but now I can't find it? 

On the purple bar across the top of the page, there is a magnifying glass icon . You can use this to search My Stroke Guide and find the information that you need.

 How do I save a page so that I can find it easily later? 

On the purple bar across the top of the page, there is a star icon. Click on this when you are on a page you want to save as a favourite. When you want to locate all of your saved pages, navigate to the homepage and click on 'My favourites' near the bottom of the page.

 How do I find information on a topic? 

Use the 'Advice and information' button on the homepage. This is the big purple button underneath the blue 'My profile' box. When you have pressed the ‘Advice and information’ button you will see that the topics have been split into 'What is stroke?', 'Physical', 'Emotional', 'Practical' and 'Aphasia and Communication'. Click on the one relevant to your topic. For example, if you want to know about memory and concentration, you would click on ‘Physical’ and then ‘Memory’. In here you will find an overview, several films and lots of advice and tips, as well as useful websites and apps to help you.

 How do I send a message? 

From the homepage, either click on the 'Notifications' box, or go to 'My social' and then click on 'My messages'. Once you are in the messages screen, select 'Write new message'. Then type in who you want to send a message to, enter a subject and write your message. Finally, press 'Send'.

 How do I see my messages? 

As above, from the homepage, either click on the 'Notifications' box, or go to 'My social' and then click on 'My messages'.

 What are the groups for? 

The groups in the 'My social' area are for users with shared interests. You can join as many groups as you want or request to set up a new one.

 What is the forum for? 

The forum is a place for all My Stroke Guide users to talk about anything and everything. On the forums, you can talk to other stroke survivors and it is a friendly place to share advice and tips.

 How do I use the forum? 

From the homepage click on the ‘My social’ button. Then click on ‘Forums’ along the top. You can either search for something specific or browse the discussion boards. If you want to write something, the reply box is at the bottom of the discussion.

 What are the house rules for the forums? 

To ensure that the forums are an enjoyable and informative place to be for everyone, please ensure that your posts don't contain any of the following: 

  •  Aggressive or bullying behaviour towards our staff, volunteers or other contributors. 

  •  Discriminative language on the basis of race, age, gender identity, sexual orientation, ethnicity, religion, disability or political beliefs. 

  •  Abusive, hateful, derogatory or obscene language. 

  •  Third party solicitations or advertisements including chain letters or pyramid schemes. 

  •  Antisocial, disruptive, or destructive acts, including “flaming,” “spamming,” “flooding,” “trolling,” and “griefing” as those terms are commonly understood and used on the Internet.

  • Comments suggesting or encouraging illegal activity. 

  • Don't infringe others' intellectual property rights by posting material you don't have permission to use.

You are responsible for the material you post. By using the forums, you are also agreeing to our privacy policy and terms and conditions.

 What are 'My achievements' and how do I get them? 

From the homepage, click on 'My achievements' to learn details of how to gain extra awards. Please note that these are currently only available to people registered as stroke survivors.

 Why are 'Apps' listed on here? 

On My Stroke Guide we have listed some apps that people with stroke have told us that they have found:

  • helpful
  • easy to use
  • easy to understand
  • cost effective for the support given.

These will help you get started. It is important to find the right app for you and your recovery needs.

We also show screenshots for each one so you can see inside the app before you download.

There are other places where you can find health apps:

  • MyTherappy is a health app review website that has been developed by the NHS, clinicians and patients to help others who have had a stroke or brain injury.
  • The Aphasia Software Finder, created by the Tavistock Trust, is a website that has information on apps and software programs to help people with aphasia.

 How do I find out about my local stroke club? 

From the homepage, click on 'Local support'. Type in your postcode to find all the Stroke Association services in your local area, including support services and stroke clubs.

 How do I contact the Stroke Association? 

If you have a question about stroke, you can contact the Stroke Association helpline on 0303 3033 100 or by sending the helpline an email. For technical advice and help using My Stroke Guide, please email My Stroke Guide and we will reply to you within 48 hours.

 Where does the information in My Stroke Guide come from? 

The information in our Advice and information pages comes from our own Stroke Association factsheets and other trustworthy sources. We check the information in our videos as far as we can, to make sure that it is correct. If you have any questions about the sources we use and how we check them please contact us.

 I'm worried about privacy on my device, how can I protect my login? 

If you are using a public or shared computer, make sure you log out after using My Stroke Guide. Also, make sure that "keep me logged in" isn't ticked.

For more information, please refer to our privacy policy.

 How can I delete my account? 

You can delete your account at any time by sending an email to My Stroke Guide. Please let us know your user name, so that we get the correct account. We would really appreciate knowing why you would like to delete the account so that we can improve our service.

 Help getting to grips with computing and technology

The Stroke Association and AbilityNet are working together to support more people affected by stroke to access technology and be part of the digital community. 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. 

Services AbilityNet offer:

Please note: Due to coronavirus (COVID19) AbilityNet have made the decision to temporarily suspend their home-visit volunteer service until further notice. 

Home visit

The UK-wide network of friendy AbilityNet volunteers are able to offer home visits with the benefit of one-to-one, tailored support.

Volunteers are available to come to your home, they can even help you over the phone or remotely. As well as diagnosing and fixing the most common computer-related problems, AbilityNet volunteers can help you with sending and receiving emails, using the internet, installing new hardware and software and adapting your equipment to make it easier to use. They can also offer impartial advice, signpost you to useful tools including apps, and support you to use My Stroke Guide. 

Request a volunteer for your club or group

AbilityNet has 300 volunteers across the UK who are able to visit your stroke club or group and do a session on how to make computers, laptops, tablets and smartphones more accessible for your members. For more information, please email enquiries@abilitynet.org.uk.

Digital support services AbilityNet offer:

My Computer My Way

This is a free online guide to all the accessibility features built into current computers, laptops, tablets and smartphones that can help you adapt your device, making it easier to use.

Free online resources

  • Fact sheets
  • Webinars
  • My Computer My Way
  • Useful links
  • Digital accessibility resources
  • Workplace adjustments

AbilityNet live

A free programme of live online events about technology and disability, to help share useful information for disabled people and their carers and employers.

Get in touch

For free phone advice and information please call 0800 048 7642 (Monday-Friday, 9am-5pm) or email enquiries@abilitynet.org.uk.

You can also find a Stroke and Technology fact-sheet which talks about technology that might help you.

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 in 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.

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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